So here we are again. So much has happened since my last blog post nearly two years ago. Why oh why did I leave it so long?! That I can’t answer I’m afraid. I had every intention in continuing to blog and … Continue reading
My IV treatment has nearly come to an end. Yippee! I’m pretty bloody excited. My last treatment is on 2 January and my portacath comes out during day surgery on Tuesday 7 January. My breast surgeon is going to do the removal seeing as I was less than impressed with the insertion by the radiology team. It’s been great having the portacath seeing as I had so many rounds of IV treatments. Can’t imagine having that many in one arm. No needles allowed on my operated side. Derek, Rosie and Polly are going to come along for a visit while I’m having my last treatment. It will be nice to have them there.
The main reason for this blog post though is to let you all know about my most recent project. I’ve started another blog called eat healthy, live mindfully and it’s about my pilgrimage back to great fantastic amazing health. I intend on sharing my progress and also lots of information along the way for anyone interested in also improving their own health. I’m very excited about this project as I’m hoping it keeps me on track to health and wellness but also the possibility of helping others along the way. Please visit the my eat healthy, live mindfully blog and sign up for email updates so they arrive straight into your inbox. You can also find me here:
I will continue giving updates on anything breast cancer related on this blog but I’ll be spending a lot more time over on the other blog so I hope to see you over there.
I also wanted to wish you all a Merry Christmas and Happy New Year. Enjoy the festivities and the special family time. Thanks for reading this year and for your supportive messages. They’ve helped me through some very dark days. Here’s to 2014 being a great fantastic amazing year for everyone!
OMG, it’s been way too long between posts. I started this in July! Oops… I wanted to make sure I put up a post before Christmas so here it is. It’s a bit higgledy piggledy with bits written in July and August, then September and October and I’ve tacked on November to the end to bring it all up to date. I know many of you are keen to keep up to date with what’s happening with my treatments and how I’m fairing so I’m sorry to keep you hanging. Here goes…
Written in July and August:
Last time I wrote I’d had a lovely weekend visiting with my besties, Beck and Meals. Life continues to be full and I’m constantly tired. Some light exercise has helped in increasing my energy levels, now I just need to get myself to bed earlier and I’m sure they’ll pick up even more. Do any other mothers out there stay up later than necessary just to have some good quality alone time? It’s a really bad habit of mine, probably the hardest I’ve ever had to break. Give up drinking? No problems. Eat healthier? Easy peasy. Stop watching crap TV? Okay, why not. Go to bed earlier? Say what!? Not a chance. Even if my eyes are popping out of my head, I’m staying up to enjoy my alone adult time, even though I know it’s bad for me. Like smokers who know how bad smoking is for them. Are there night owl support groups out there to help people like me? Since starting menopause and the lovely symptoms that are associated with that, I find it even harder to get off to sleep and stay asleep. Hello insomnia and hot flushes. Goodbye good night sleeps for the rest of my life. Staying up late is also a way to avoid just laying there in the dark, listening to Derek snoring, alone with my thoughts. If I stay up really late and am super tired, I go to sleep much quicker. I feel like shit the next day but then I feel like shit if I go to bed early and have a really restless night sleep. If I take sleeping tablets I also feel like shit the next day so I can’t win really. I know meditation would help but I’m not very good at doing it on a daily basis. Yet another thing I know is good for me but can’t seem to include in my daily routine. It’s frustrating but at the same time I’m pretty easy on myself. Always telling me to go easy on me, I’ve been through a tough time and don’t need to be roused on by the likes of me, I’m doing the best I can. There are so many things I’d love to include in my daily routine, or even my weekly routine. I was going really well for months with a gratitude journal. I really enjoyed it and got a lot from it. I haven’t written in it for a while for some reason. Note to self, start doing the gratitude journal again as the benefits were great. (September/October update: I’ve restarted the gratitude journal and am finding it very beneficial. I just have a journal sitting out open so that when I walk past and have a spare moment I can recall the good things that have happened that day so far and jot them down, with a little smile on my face. It’s a feel good thing to do. Also I’m sleeping a lot better and bed time is getting earlier although still needs some improvement. I can definitely say that sleeping better stems from not eating sugar before I go to bed, more on that a bit later.)
Exercise is another biggie I’m grappling with at the mo. I’ve started walking in preparation for The Walk to End Women’s Cancers in October. It’s a bit sporadic and I really could be doing it more often, need to be ready for the 60kms. So I go for a walk and it gives me more energy which is fantastic! But then it seems to make my neuropathy worse which isn’t so fantastic. Pins and needles hum around my toes, feet and even up my legs. It’s a very disconcerting feeling and I’m concerned what will happen when I try to walk much longer distances. I haven’t even managed to crack the 4km mark yet. I’ll keep trying and hopefully build up to longer distances without too much discomfort. It’s not only my feet that I’m having problems with, my neuropathy in general is getting worse and I’m having trouble with my fingers and hands. It’s a bit of a mystery so they’re doing more tests today – B12 and folate to start with. Hopefully it’s an easy fix because the thought of the neuropathy continuing to worsen or even stay as it is without any improvement really does worry me. The clinical trial nurse even suggested a visit to a neurologist. We’ll cross that bridge if we come to it I suppose. (September update: B12 and folate were fine and neurologist is an overkill but recently found out that Podiatrists can do nerve testings on my lower limbs and keep a track of it to see if they’re getting worse or better or staying the same. They should also be able to help with the discomfort I have in my toes when I go walking so this will be great before the big walk. October update: Neuropathy is always present but I’m getting used to it. Podiatrist did some tests and even though I’m having lots of pins and needles associated with my neuropathy, numbness doesn’t seem to be a problem because I did better in their tests than people without neuropathy! Go figure. Luckily I have no pain with it so will just have to grin and bare the pins and needles. More on the walk later in the post.)
Zoladex injections (July/August)
Since the last blog I’ve had another monthly Zoladex injection. I can now confirm that I didn’t have appendicitis, it was in fact from the Zoladex injection. Not the drug but the injection itself. The reaction I had after my second Zoladex injection, which ended with me in hospital with suspected appendicitis, wasn’t as bad after my third injection but still quite painful and similar type of pain to the previous time. It turns out I’m not fat enough (again). The injection is a subcutaneous injection and needs to go into fat, not into muscle. So 2 out of 3 times I’ve had it, the needle and small implant has gone into or quite near muscle and has also affected the peritennial wall (which flares up when the appendix are playing up and why my symptoms were confused with appendicitis). On the plus side I’m not waiting around for another appendicitis attack, on the down side, I have to have this injection once a month and it’s excrutiatingly painful not just at the time of injection but for days afterwards. Next time, which is next week, eek!, I need to find the fattiest part on my tummy (extremely difficult as I’ve lost weight recently) and really pull the fat away from my muscles so as not to risk having it injected into muscle again.
Now before you all start telling me to go eat McDonalds and fatten myself up by eating junk, just know that I’d never risk my internal health just to have a bit of belly fat to make the injections easier. And I doubt that if I did start eating unhealthy, fattening foods, it would make a huge difference anyway. It’s just the way I’m built and I’ve just got to deal with it. Besides eating junk makes me feel terrible and that’s the last thing I need at the moment. I’ll see what happens over the next few months and if we can’t find a good spot to give the injection then it may be time to consider having my ovaries removed. Another decision for the future me to deal with.
September/October update re Zoladex and hormone blocking therapy
I’ve had a lot of anxiety around the Zoladex injections for the last few months. I’ve lost 4kgs since starting the Zoladex which is unusual because normally hormone blocking therapy causes weight gain. I’m wondering if the anxiety and stress associated with the Zoladex has contributed to my weight loss. Obviously this isn’t a good thing as I’m already underweight. So first it was the anxiety around the injection and then as I became more stressed about it, I lost more weight and the injections became more difficult because the fat around my stomach was almost nonexistent. In September I was advised that if I didn’t put on weight they’d have to put it into the fat in my thighs. What fat!? The nurses told me it would be more painful than the abdomen. I became more anxious and stressed about it. The pressure to put on weight didn’t help at all. As most of you know, I’m a very healthy eater but I do eat large quantities of food and eat reguarly throughout the day and night. I’ve been adding in extra protein for months and having extra full fat dairy where possible. I don’t eat like a rabbit and try to keep eating once I’m full. If I’m not eating food, I’m preparing it or thinking about my next meal. Some things will never change 🙂 I’ve come to the conclusion that it must be the accumulation of stress and anxiety over the last year that has contributed to my weight loss, along with cutting out sugar (more on that below). And no doubt that the huge amounts of cancer drugs have also played their part in my weight lose. I started losing weight after starting the Zoladex and my stay in hospital for the suspected apendicitis. I quit sugar in August but was already on the downward spiral by then. Cutting out sugar has probably contributed a little in my weight loss but I do feel that at the end of the day, the stress and anxiety I’ve been through over the last year has been the main contributor and all I can say is bring on next year!
So because of the weight loss and stress due to the Zoladex Dr N, my Onc, and I have decided to stop the injections. They were something extra she thought would be good for me to have seeing as I was pre-menopausal when finishing radiation therapy. We made the decison several weeks ago and I am so bloody relieved that the big scary needle won’t be coming anywhere near me anymore. Even the nurses cringe at the size of it and really dislike giving it to patients. It really is a nasty one. So I’ve now started Tamoxifen, which was always going to happen. This is also hormone blocking therapy and is one tablet every day for 5 years, with the research now looking more effective for 10 years. (From Wikipedia: Some breast cancer cells require estrogen to grow. Estrogen binds to and activates the estrogen receptor in these cells. Tamoxifen is metabolized into compounds that also bind to the estrogen receptor but do not activate it. Because of this competitive antagonism, tamoxifen acts like a key broken off in the lock that prevents any other key from being inserted, preventing estrogen from binding to its receptor. Hence breast cancer cell growth is blocked.) Dr N was just waiting to see how I went on the Zoladex before hitting me with too much hormone blocking therapy at once. She’s also suggested another possibility to replace the Zoladex. It’s a nasal spray called Syneral used twice daily and has the same effect on my body as the Zoladex, shutting my ovaries down. The only problem is it isn’t covered under the PBS for breast cancer, only for endometriosis. This means instead of costing me $36 a month (like the Zoladex) it will be $126 a month because the goverment don’t subsidise it for breast cancer treatment. Bugger. Getting cancer is expensive! Even with private health cover.
If I was only to take Tamoxifen there’s still oestrogen running through my body and it’s likely my periods will return. What?! Periods and menopause symptoms – that’s f*@king cruel. Sorry for the swearing but seriously, why should I have to put up with period pain and menopause at the same time at the tender age of 35. Life sucks in some ways. Ovaries may still come out but still not in the right mental state to make that decision just yet. Maybe next year I’ll be able to consider it but not now. I have come to the conclusion all on my own that there’s no way I could handle three children. Not sure if I would have come to the same decision without having had cancer but even if I could have more children without putting my health at risk, I doubt I’d be able to handle three little ones in my current mental state. I’d go cuckoo I reckon! Half way there already. I’m sure a lot of you healthy mothers of three or more feel cuckoo on a regular basis (in good ways too 🙂 What I need now is a simple life with minimal stress and a third child wouldn’t be conducive to the type of lifestyle I aspire to have. Plus I’m not sure Rosie and Polly would be happy sharing me with another child. They’re both very much mummy’s girls at the moment which is lovely but extremely draining at the same time.
Speaking of my mental state, it’s been a bit of a slippery slope this year, the type with the little ledges where you plateau slightly before being whoshed down again. Here I picture myself plummetting downwards, screaming, hands in the air with a terrified look on my face, the hands of family and friends trying their best to help slow me down. I do slow for a bit and have a breather on the plateau before being sent spiralling down again, all on my own. Cancer can be extremely lonely, even with the ongoing love and support from well meaning family and friends. I do feel I’ve handled this whole cancer experience quite well for the most part, taken a great deal in my stride. Over the last couple of months it’s getting harder and harder for me to deal with “stuff”. You know, life stuff. Things keep on knocking me down and I keep getting up again but I’m slowly running out of puff. And it’s not just things knocking me down, it’s a busy life along with the hard stuff. In this way I feel like I’m climbing a mountain with many peaks. I know, I was just comparing my mental state to slippery slopes but when it comes to cancer treatment and life as a whole, it’s more of a mountain. Just when I think I’m over the worst of it and on my way down the other side of the mountain, it turns out it’s just another peak and I haven’t actually reached the top yet. I’m really hoping the top is the end of IV treatment, which is either 2 January 2014 or 12 December 2013, and that next year is a smooth, easy ride down the other side with a long flat straight at the bottom. Pretty please!
One of the positives over the last few months is that I quit sugar mid August. And I don’t mean just standard cane sugar, I mean many forms of sugar including table sugar, honey, most syrups, fruit juice and fruit juice concentrates and even fruit for 4 weeks. What I’ve stopped eating is fructose (except whole fruit which I did cut out for a month but then slowly reintroduced it again). Did you know you can get everything you get from fruit from vegetables? I’m sure this probably all sounds quite extreme to many of you but it was something I really wanted to experience and experiment with. Sugar is a highly addictive substance and if I can replace it with healthier options then more power to me I say. I’m having a real love affair with food lately. I’m really enjoying cooking and trying new things. The girls love sharing a green smoothie with me in the morning and I love teaching them about healthy eating. I followed the 8 week I Quit Sugar program which included meal plans, recipes and bulk cooking ideas. I didn’t stick to the meal plan the whole 8 weeks but ate sugar free except for a few small slips that I don’t feel bad about, these things happen. Derek and the girls have joined me for the most part. I didn’t remove fruit from the girls diets but honey and jam are definitely off the menu in our house, as are museli bars and anything unhealthy and processed really. I’m always trying to find good healthy food that interests them. That can be hard sometimes when sugar is so heavily intrenched in our society. Pick up a packaged item in the supermarket and chances are pretty high it will have some form of sugar in it, you know, to make it taste better and keep people coming back for more (because it is addictive). The food companies know what they’re doing. If anyone else is interested in joining me in this sugar free experiment just let me and I’d be more than happy to fill you up with some great resources on the hows and whys. It’s been an extremely positive experience for me and I’d love to help others start their own sugar free experiment. It’s easier than you might think but does take committment and also time to prepare good healthy food. Fast and convenience food are called that for a very good reason, they’re fast and convenient (but terribly unhealthy). Giving up the sugar is the easy bit, preparing good nutrious healthy meals without feeling like I’m chained to the kitchen is the hard bit. Lucky I love cooking, being organised is key.
In the middle of all of this happening the owners of our rental decided they would be moving back into their house. Our home. Bad timing really as we would have liked to stay there until next year and then make some decisions about where our future lay. We had already decided to stay in Brisbane but weren’t exactly sure where and if we could afford to buy. We had to decide pretty quickly whether to rent again (and move twice) or just bite the bullet and buy a place of our own (more risk as we’re waiting on some land to sell in Yeppoon). Derek and I decided it was finally time to buy our very first house. We’ve been renting since returning from London in 2007 and I for one was over it. We’ve purchased a fantastic house in Karana Downs which you could almost call Ipswich rather than Brisbane but it is in Brisbane City Council. We can even see the lights from Ipswich at night from our huge back deck. The house is on 5000sqm or 1.25 acres. It takes me 20 mins to drive to Rosie to Montessori and about 30 to the hospital. It takes Derek anywhere from 45 mins to 1 hour to get to work or home, depending on traffic. This is much more than the 15 min trip he was used to but hey, that’s city living and there was no way we could afford to live close to his work and have a house we both loved. Rosie will be going to school in 2015 at the Brisbane Independent School which is only 10 mins away. Derek’s Aunty Annette lives at Chapel Hill which is only 20 mins away so at least we still have one family member close by. I’ve moved further away from my family which is a real shame. I do have some friends in the area though so that’s a positive and I’ve made friends with the lady next door who has a 2 year old and another on the way. We love the new house which has great views from every window, even the toilet and especially my bath. We have the best of both worlds, bush retreat with the city only 20 mins away. I love driving out of Kenmore, where it’s crazy busy, into the wide open spaces with the most glorious gum trees. It’s almost like I’ve been holding my breath and then I exhale when I turn the curve and see the first big gum, one of many guiding me home. It’s lovely having a place to call our own, at long last. It needs a lot of work to get the yard how we want it, but Derek will take great pleasure and pride in creating our own little oasis with help from our little people. Chickens and veggie patches to come…
Written in November
So onto the subject I’m sure many of you are curious about. Did I walk the whole 60km for the Walk to End Women’s Cancers? Yes I did! I am so proud of myself and my teammates. Gosh, it was gruelling in parts but then so is having cancer and it was much easier to do that walk than everything I’ve had to endure over the last year. 1,345 walkers took part in the Brisbane walk and collectively we raised over $3.5m. Personally I rasied $6,215 reaching number 20 in the top fundraisers and our team of 6 raised $17,841, also reaching the top 20 from memory. Thank you to everyone who donated and supported me in my determination to help other women who will have to endure their own cancer experience in the future. If you missed out on donating and would like to then it’s still possible! Lucky you. Here’s the link:
So, the walk. Well, I did say to myself before starting that I wasn’t going to push myself to complete the whole 60km. After the move and other difficult life “stuff”, I was feeling pretty drained in the lead up to the walk so the closer I got, the more I was preparing myself for just doing my best and not pushing myself to do it all if I didn’t feel I was able to. Well, that mindset changed pretty quickly once the walk itself started. I went from “be kind to yourself Cassie” to “you are doing this, no matter what”. Lucky “no matter what” wasn’t anything too bad. The worst “no matter what” I had to face was hardly being able to walk because of shin splints and major lactic acid build up in my quads. Pretty easy to overcome with one of my besties, Beck, pushing and pulling me along. No shortness of breath or light headedness or headaches or dehydration which are the type of things which probably would have sent signals off in my head. I kept myself well hydrated and stopped for breaks when I needed them. Pacing myself allowed me to actually finish and I want to thank Beck for sticking with me when she easily could have powered ahead. We also visited a podiatrist on the Friday afternoon and had our feet strapped and prepared for blisters. This helped immensely and we’ll be doing the same next year. Yes, call us crazy, but during the last 10km on the Sunday we decided we’d definitely be lining up again next year. Maybe in Sydney instead of Brisbane as it’s closer to Beck in Canberra. Thinking back to the weekend here are some thoughts and feelings during each 10km:
10km – exhilarated, proud, inclusive
20km – when’s lunch, my legs are sore, god it’s hot
30km – this last 10km feels like 20km, hills are evil, wine? thanks – why not, kind community, beer massage and stretching ahead.
40km – this isn’t so bad, I feel pretty good, slow is the go
50km – OMG my legs are burning! OMG it hurts to stop and then move again, don’t stop moving legs, downhill is evil, very evil! You’ll always meet someone from Rocky when having an adventure (the wife of a guy Derek went to school with, small world)
60km – where did this energy come from? how can I even walk at this point, let alone this fast (icing my legs was the trick), Star Wars (see pic below), inclusiveness, pride, exhiliration, overwhelming emotion, tears of joy, can’t believe I just walked 60km. Wow
A big thanks to my teammates, Rebecca, Kelly, Sarah, Liz and Tracey. And also to my Aunty Deb (in Brisbane) who organised a fashion parade morning tea to help fundraise for the cause. It was a great event and I’ll be hiring you again for next year 😉 A big thank you also to my friends Brad and Che who held a sausage sizzle on my behalf and hounded their friends for donations for months. Plenty willing obliged and it still touches my heart that so many people donated without even knowing me.
Back to August, which seems so very long ago now. 9 August 2013 was the one year anniversary of my diagnosis. It was actually easier than expected on the day itself. I had a few check up appointments in the lead up – scan of my chest and breast plus a visit to my surgeon. I was meant to have a mammogram on my right side but couldn’t because of the trial. I need to have one close to the end of my trial and the Wesley Breast Clinic won’t allow you to have two mammograms in a one year period. So it was delayed and that will happen soon. Not something I’m looking forward to as there’s not much there to squish into the machine. Oh except my portacath, that’s there! Not sure how they’ll manage it with the portacath positioned in such a bad spot. I kept really busy during that week in August. We were looking for a house to buy and ended up signing the contract for our house on 9 August, so it’s a bitter sweet day for me now. That afternoon Derek and I went up to Mapleton for a relaxing weekend away while Mum watched the girls. My Aunty Deb in WA had arranged a fundraiser for me and she wanted us to treat ourselves to a luxurious weekend away with the funds raised. Okay Aunty Deb, you got it! It was a lovely weekend away. Relaxing, eating, walking, sightseeing.
A friend of mine, who was diagnosed after me, had a scare with some more lumps the following week and that’s when the gravity of my own situation hit me. It’s strange how I handled the week prior so well and then upon hearing about my friend’s scare I spiralled down for a bit. She got the all clear thankfully.
It was a long time coming but in September I tapped back into my psychologist at the Cancer Council. Looking back this is something I should have done much sooner. The last time I talked to her was quite early in the year. I need to stay connected with people who can help me heal both mentally and physically. I’m seeing my breast care nurse at Choices at the Wesley Hospital this Saturday. We’re having a long overdue catch up which I’m very much in need of at the moment. We’ll talk about menopause, sexuality after cancer, reconstruction, mental health etc. I’m excited about being able to tap back into Choices next year when Polly is in daycare on a Thursday. They have free sessions of reiki and reflexology so I’ll be booking myself in for a weekly treatment hopefully plus a regular catch up with the ladies there. I’ve also been having bowen therapy as there’s a therapist a few doors down from our house. This is very convenient! I haven’t had acupuncture since moving and will just stick with the bowen for the time being. I also plan on starting pilates classes next year on a Tuesday and Thursday. I’ll also try to find some time to just relax and regroup when the girls are at kindy. In reality I’m probably use that time to clean and cook but hey 😉
An update on my hair seeing as that was a hot topic in previous blog posts. I had my first haircut on my one year anniversary, 9 August and have had another since then. I’m keeping it short for the time being to see how it goes as it continues to heal from the shock of the chemo. It totally has a mind of its own which I am so not used to. My hair was very well behaved before it feel out, now it’s very naughty and I’m not happy about it at all. It’s wavy and kinky. When it first started growing back it looked really light and grey. Now it’s extremely dark and people keep asking me if I’ve died it, which I haven’t. As mentioned above, I’ve lost some weight. I’m certainly not happy about this and putting on weight will be a big focus for me next year. Breast cancer certainly does bring about self image issues, ones I’ve never had to deal with in the past. Of everything that’s changed about me over the last 15 months, losing weight is the one that’s effected me the most. The hair wasn’t really a big deal. I think I dealt with the loss of my breast quite well too. My main issue with losing my breast has always been the physical discomfort rather than any emotional or mental concerns about it. I’m not happy about it of course but it’s not something I’ve been hung up on surprisingly. The weight loss gets me much deeper. Maybe it’s because I was teased so much at school for being a stick. Kids can be cruel and it doesn’t matter whether you’re fat or skinny, tall or short, smart or not so smart, everyone gets teased for something at some point. My skin was thick though and I never let people see how much it actually bothered me. So maybe that’s why I’ve got this hang up about my weight loss over the last 6 months. Who knows?! All I know is that it bothers me big time and I actually hope that the Tamoxifen helps to put some weight back on which is what happens to most women on it. It annoys me how my clothes don’t fit properly. I assume that everyone else is assuming that it must be great being skinny but it bloody well isn’t! To assume makes an “ass” out of “u” and “me” though doesn’t it… I need to get out of my head and focus my attention on eating good healthy fats plus add in some kind of muscle forming exercise. There’s just so much to do to get healthy again and most days it’s just so overwhelming. I was asked this question recently, “How do you eat an elephant?”… To which I replied immediately, “One bite at a time”, nodding my head. So that’s what I’m going to do. Make a list of everything I need and want to do to get myself healthy (including putting on some weight) and focus on one thing at a time to get me on my way. This week I’m keeping a track of how much water I’m drinking using an app on my phone. Today I easily drank over 3 litres. Anyway, enough about my insecurities (we all have them don’t we?!) and onto more lovely things…
So my girls are really growing up as you’ll see from the pics I’ll include below. We celebrated Rosie’s 4th birthday in July with all her little friends from Kindy. She had a great time and it was quite a nice calm little party. Lots of arts and crafts to keep them busy. Rosie has made some great friends at kindy and I’ve also made some good friends with some of the mums which is a bonus.
As I said above, both girls are very much mummy’s girls at the moment. They’re both extremely demanding of my time and attention. More than they were a few months ago and definitely since the move. Polly’s gone from this very easy baby to a toddler who’s cheeky and can throw a tantrum to rival that of a 2 year old, or even a 4 year old. She’s super cute though, lucky for her 🙂 She’s going to be the one to keep us up at night, I just know it. Thankfully she started walking at around 16 months, same as Rosie. But since then her favourite place to be is up on my hip. Rosie can be challenging at times and it’s very possible, even probable, that she’s been affected more than I initially thought by what’s happened to me and our little family over the last 15 months. When talking with my psychologist about Rosie and her demands on me it was decided that I’d give her more one on one time but the more I give her the more she wants. She’s started getting upset when I take her to kindy and not just occasionally but every time. I know she loves going there and has a great time while there. When I collect her she wants to keep playing rather than come home. Is this normal 4 year old behaviour? Maybe it is and I’m just being oversensitive. It’s like she’s jealous of Polly all over again and has reverted back to baby things in the way she talks and cries and wants me to do everything for her (apart from when she is screaming that she wants to do it herself!). I can’t win… Oh and to counteract the baby behaviour she has also started being really cheeky in a naughty way, including telling adults that they’re naughty when we’re not doing as she would like (she’s very bossy, I suppose I’ll have to take responsibility for that seeing as Derek doesn’t have a bossy bone in his body!). Any tips from parents of previous 4 year olds?
Polly and I have been going to a parent lead playgroup at Rosie’s Kindy, Montessori. It’s been great for us both. I love watching her trying new things and exploring her new found abilities. Polly’s also started going to daycare at Montessori just one day a week, on a Friday. I needed this day so I could go to different regular appointments such as physio and exercise class without having to rely on family to watch Polly for me. She seems to be enjoying the experience and it’s a good introduction as she’ll be going two days a week next year – Tuesday and Thursday. Rosie will still be Tuesday, Thursday, Friday. My plan for next year is to get healthy and fit. I’ve made a good start to this with an overhall of the way I eat but I really need to focus attention on the exercise side of things. Having these two days will allow me to do this for myself and my family. I’m also planning on doing a Uni degree to become a Nutritionist/Dietician. I’ll start out very slowly (one subject at a time) because my focus for the first half of the year needs to be on getting me well again after cancer treatment, both mentally and physically. I may even wait until July to enrol and go from there.
Back to the girls, when we moved we put them in the same room. That didn’t go so well unfortunately and there’s been some changing and switching which has disrupted them. I think they’re finally settled where they’ll stay for a while. We may try them together again when Polly’s in a bed. I do think they’ll enjoy the company when Polly’s a bit older. They play well together most of the time and Polly loves following Rosie around the house, copying her and playing along side her. It’s interesting how toddlers will play along side other kids, rather than with them but they learn to play with their siblings from a very young age. Lovely to see. They enjoy spending time outside even though inside I’m freaking out about snakes and spiders. Derek is building them a cubby house for Christmas. I’m very proud of him and can’t wait to see the end result. Following that we’ll set up some veggie gardens and prepare an area for some chickens. I’m sure the girls will love getting their hands dirty in the garden and cuddling the baby chicks. I’m excited about watching them connect with mother nature some more.
We’re heading up to Central Qld to visit family and friends for two weeks before Christmas which I am looking forward to, now. To be honest, initially I wasn’t looking forward to it as I’m quite content to stay at home in my little bubble plus I’ll be flying to Mackay alone with Rosie and Polly which was making me feel quite anxious. Society and planes with children are something I’ll have to overcome though so bring it on. I really had to talk myself around though. I can’t let my anxieties get in my way of living. If anyone wants to catch up while we’re up there (in Yeppoon), get in touch. Derek is working but the girls and I will be looking for things to do and people to see. (Update: Plane ride done and both girls were very well behaved. Polly had one moment where she cracked it but she happily sat on my lap and didn’t try to get off which is what I was most concerned about. At mum’s now relaxing, swimming, catching up on sleep, etc. Bloody hot and humid up here though which saps the energy out of me, I forgot how much it did that. It was actually here last July for Rosie’s birthday when I found the lump under my arm which turned out to be a cancerous lymph node).
We’re staying home for Christmas. Our little family will have our very own Christmas Day together before visiting family later in the day. Derek has two weeks off over Christmas so hopefully we can get things done around the house and maybe a day trip here and there. I’m really looking forward to having Derek at home for this time. He works away one or two nights a week and is off exercising 3 mornings a week so we don’t see as much of him as I’d like.
In the new year I’m looking at booking myself into a retreat for a detox/cleanse and some well deserved me time (if anyone can make any recommendations close to Brisbane that would be great). We’re also planning a family holiday in February or March. As much as I’d love to go to Fiji, it’s not really in the budget so Stradbroke or Fraser will have to do. I’m desperate for a beach holiday during the warmer months and it will be a great way to celebrate the end of my treatment. What a year it’s been. I can see the light at the end of the tunnel but the darkness still surrounds me and this last stretch has been much more difficult than I could have anticipated. I’ll be so happy to see the new year in on 31 December 2013. Actually, my last treatment is 2 January and I’ll have my portacath removed soon after so I think I’ll celebrate new years a week or so later. Once that last treatment has finished, I’ve had the portacath removed and the mammogram done, it’ll be a new year for me. Don’t get me wrong, some great things have happened in 2013 but the bad stuff has definitely overshadowed the good stuff and I’ll just be happy to start afresh.
Merry Christmas and a Happy New Year to all of you. Thanks for your love and support throughout 2013. So many of you helped in so many ways to make my life easier and more enjoyable.
Rosie’s 4th Birthday
Rosie and Polly at the park
Rosie and I on a cafe date
Polly enjoying a green smoothie (I’m hooked and so are the girls!)
Scrambled Legs 60km End Women’s Cancer Walk
Tracey, Sarah, Beck, me, Kelly, Liz
Beck and I with only 2km to go!
Very emotional to cross the finish line
Rosie striking a yoga pose (view from my bedroom)
Rosie and Polly enjoying popcorn and a movie on a rainy day
Keeping Polly close at the airport on Monday
Polly feeding ducks at Ash’s house yesterday
Loved this when I saw it so had to include it in this post because who knows how long until my next one. Only two treatments to go, not long now…
Yes, that’s a Dr Suess reference, from there to here, from here to there, funny things are everywhere! Yes they are and I seem to be seeing Dr Suess quotes a lot lately. Rosie has always been a little obsessed with his books and they’re definitely a fav of mine to read as they roll off the tongue so easily.
Once again it’s been too long between posts. Argh! I have never had such a full calendar and I wonder what it will feel like once I’m done with all the treatment and tests and appointments. Will I feel a little lost or thankful for all my free time? Probably a bit of both I suspect. It will be glorious to be able to spend more quality time with the girls without feeling so tired and worn out. On the other hand treatment will be finished and it will simply be a waiting game until each check up with my team of doctors. Waiting for what though? Bad news?! No, I can’t allow myself to simply wait around for bad news. Only good news and good times ahead once treatment is finished!
So my last chemo was on 21 March and it ended very unceremoniously. It was meant to finish on 28 March but in the final countdown to “the end”, my neuropathy became much worse and I started wondering about what the repurcusions might be in having that final round of chemo. To make my decision that much harder, Dr N, my oncologist was on a well deserved holiday and I couldn’t make the decision without further direction from her. She had said the week prior if it started interfering with my day to day life then perhaps we wouldn’t do the final chemo. I was on my own, or so it felt initially. I started doing some research online and reading forum posts about other people’s experience with the chemo Pacitaxol and peripheral neuropathy (damage to the nerves of the peripheral nervous system). What I read was a bit scary and very concerning. Mine seemed to have progressed very quickly over the two weeks prior and was getting worse by the day. Some people had balance issues and had trouble walking! Others had real difficulty using their fingers. I needed to discuss this further with my medical team and perhaps another patient who’d been on the same chemo as me. I spoke to the clinical trial nurse, a nurse at the Cancer Council helpline, a lady who had been in my mindfulness group and had also been on the Taxol plus the doctor filling in for Dr N. I also thrashed it out with many of my family members. It was an extremely tough decision and a stressful few days but in the end I decided not to go ahead with the final round of chemo. A decision I’m very happy with at this point. My fingers, hands, toes and feet have all been affected. At that stage I was getting pins and needles in the balls of my feet and down my hands, plus sometimes up my legs and arms. Thankfully it’s now only my finger tips and toes that are still affected most of the time with the hands and feet occasionally, depending on how they’re positioned. My toes sometimes feel like they’re being pinched in a pair of high heels. I find it difficult to bend down with the girls, propped up on the balls of my feet and toes without instant tingling and a bit of pain. I’m having trouble doing normal things with my fingers that were never a problem before. Small things but still slightly annoying. It had progressed so quickly during the last two weeks of treatment that I feel pretty confident it could have gotten a whole lot worse if I’d gone ahead with the final treatment. My only concern now is whether I’ll ever get full feeling back in my finger tips and toes. Apparently it can keep getting worse, worsen in the future or go back to normal. I suppose I’ll just have to wait and see what happens. It will just have to be another thing I’ll get used to over time. Not woe is me as we all have things we have to deal with, the key is acceptance and not letting these things overwhelm us or let them become bigger than they are. At least I still have fingers and toes.
So that was the end of the chemo and I’m happy it was so unceremonious. I didn’t have to face coming into the hospital knowing this was my final chemo and having to deal with the emotional side of that. The week prior was my final round and I didn’t even know it at the time. What a great ending to a relationship that I was highly dependent on and didn’t want to be. To never have to see the other party again. Good riddance I say! I’m still at the hospital every 3 weeks for my targeted treatment of Herceptin and also the trial drug but at least I’m not here weekly with the chemo headache and hangover. Unfortunately though once the chemo stopped my diarrhea didn’t. In fact it worsened and I was forced to take Gastro Stop every two days otherwise I wouldn’t have been able to leave the house or have any energy to do things that normal people do. Off to the gastro-enter-ologist I went. Extremely hard to say quickly until I knew how it was spelt and then it was surprisingly easy. It was a bit strange meeting the gastro doctor, Dr A, for the first time. The poo doctor with lots of poo puns. At first I was a bit shocked and I’m not easily shocked. But then I became more comfortable and actually laughed at his poo puns. Except when he said I was “full of crap”… Seriously, he did on more than one occasion. Very odd bedside manner. I think it’s because he’s a talker and when you’re dealing with poo day in and day out, you’ve got to make a joke of it. Anyway, he booked me in for a gastroscopy and colonoscopy, to “get to the bottom of it”. So after a low fibre diet for 2 days and then a diet of liquid and laxatives for a day, I had a lovely sleep and woke up feeling slightly violated, as I do after being sedated while the people around me go about their business with my body, especially where bottoms are concerned. The cocktail of drugs used to knock me out included a sedative that causes amnesia so I’ll never remember anything to do with the procedure (thank goodness for that!) and aneasthetic to keep me under for the duration plus a bit longer. I went home and had another lovely sleep in the afternoon. The lead up was terrible. I was sooooo hungry. Liquid just doesn’t cut it when it comes to my metabolism. The hunger was even worse than the bowel prep and diarrhea that followed which is saying something. Anyway it’s behind me now and results show that there is no evidence as to what is actually causing the diarrhea which really confirms my oncologist’s suspicions that I’m on the trial drug. So we’re going with that and just seeing what happens next.
Herceptin (Trastuzumab) and the trial drug (Pertuzumab) are both targeting the HER2 proteins found on the breast cancer cells. “Herceptin stops the growth and rapid multiplication of the cancer cells by binding to the HER2 proteins and blocking the signals telling the cells to grow. Herceptin can also activate the immune system to kill HER2-positive cancer cells.” (reference: http://www.herceptin.com) Pertuzumab works in the same way but works on a different part of the HER2 protein to the Herceptin. I haven’t even considered coming off the trial because of my ongoing diarrhea. Today Dr N said to me she’s going to find out if the trial will allow me a cycle off to see if that makes a difference. Since having the colonoscopy the diarrhea did stop until I had treatment again and then it came back in full force. Back on the Gastro Stop!
Enough about all of that. So much other stuff going on currently. I’m a strong believer that it’s what’s on the inside that counts and this mindset has been essential in my recovery and how well I’ve coped with my body changes. The changes affect me more on a physical level than emotional or mental. I get frustrated with my restrictions but how I look doesn’t really bother me too much. Although in saying that, I was feeling quite unfeminine for a little while. That’s my politically correct term for butch. It’s the ultra short hair. While wearing the scarves I did feel more feminine than I do with the ultra short hair. They’re like an accessory that can be mixed and matched with different outfits. And mixing and matching accessories with different outfits is a very girly thing to do in my opinion. Even though I did have this feeling of less femininity in March, I’m happy my hair is growing back and I know that its just another feeling (or perhaps just a thought) that will indeed pass and I don’t let myself get hung up on it. The hair on my head does look a lot lighter than it was previously. Derek likes to tell me its coming back grey. He’s mean like that. Or maybe just honest. I had no grey hairs prior to chemo so it would be very odd if it did come back grey. But hey if it can come back curly from straight, who’s to say it won’t come back grey instead of brown. No curls as yet though but probably still too short to show up any. It’s still super soft and reminds me of baby animal fur. It’s like a pregnant belly, people are drawn to it and want to have feel. I don’t mind though. If I can bring some happiness into people’s day by feeling like they’re patting a kitten then that’s a nice feeling, as long as they don’t grab me by the scruff of the neck. And there’s no way I’m going to start purring. My eyebrows and eyelashes are also starting to grow back, finally. There was a period where the hair on my head was growing back but my eyebrows were still falling out. Mid May I really noticed a big change and it’s nice to not look so bare around the eyes. The eyebrows and lashes really define my face.
Lately I’ve been thinking a lot about my double reconstruction that I plan on having next year. For me this is definitely a decision based on how I feel physically rather than how I feel about my body on an emotional level. I am quite comfortable looking at myself in the mirror or down at my chest. It’s never been an issue for me or something that I found too confronting, just having the one breast. I suppose I’ve always thought it would be temporary so don’t let myself get hung up on the fact that I’m down one boob. At least the cancer has been removed, that’s the best way to look at it. My main problem is how uncomfortable I feel physically. It has been very difficult finding comfortable bras and clothes with only one breast. Because my remaining boob has shrunk down to a 10a it’s virtually impossible to find a suitable prostesis to match it, let alone mastectomy bras that fit and are comfortable. I’ve taken to wearing crops tops but even they have their problems with rubbing on my skin and chest wall because of the lack of flesh and uplift there. The skin is pulled very tightly across my chest and is pretty sensitive due to the nerve damage from having the lymph nodes removed and the nerves pulled out of the way to facilitate the removal. I’m guessing there will still be a lot of tightness with a reconstruction but at least clothes and bras will fit me better. I hate standing in front of the cupboard wondering what to wear that I’ll feel comfortable in. Comfort is the biggest factor for me when buying clothes and this has always been pretty easy prior to breast surgery. Now it’s such a hassle and I just want to be even again, two boobs, same size, easy peasy. Having a double reconstruction will make my life easier and, I feel, more comfortable. I’ve been told the chances of my type of breast cancer returning to the other breast are minimal, but even with that information I’d rather just start from scratch and get a whole new set. I’ll always be worried deep down about it returning to my other breast or other parts of my body so best be off with it so it’s one less thing to worry about. That’s just me, others who are in my situation may feel very differently, but for me, it’s the best possible decision and one I’m unlikely to change my mind about. I can’t imagine going the rest of my life with only one boob due to the discomfort I have on a day to day basis. So that’s that – bring on next year!
Radiation started on 22 April. I’d been told it would be a breeze compared to chemo so it was very surprising to me when I found the first session extremely difficult and painful to the point of tears running down my face whilst having the radiotherapy. I lie down on my back with my arms above my head. I must stay still, with my arms above my head for 20 minutes until the radiotherapy is complete. Due to the removal of my lymph nodes, nerve damage, cording, etc staying still in this position for 20 minutes (and on two occasions 30 minutes) has been much harder on my left arm and shoulder than it is on my right side. Unfortunately after a few weeks this hasn’t improved a great deal. My arm and shoulder joint ache, throb and twitch plus add in the pins and needles and that dead, heavy feeling and it’s quite agonising. The neuropathy doesn’t help either. All I can do is continue with my exercises and warm up the arm and shoulder before I go in. I’m at the hospital Monday to Friday except every second Wednesday until 30 May. There are no blisters on my skin but it’s a lot more sensitive than before I started and there is some redness so the damage is already being done. I lather on cold aloe vera (from our garden) straight after treatment and moisturise several times a day to try and hold off some of the damage. One downside of being skinny is that I have to wear what is called a bolis for two of the radiation fields. It tricks the machine into thinking there is more tissue there so what effectively happens is it doesn’t go as deep and is closer to my skin, which in turn means more liklihood of skin damage. All I can do is keep up the aloe vera and moisturiser and hope for the best. Those two fields are the whole of the left chest wall where there was previously breast tissue. Breast tissue covers a much bigger area than you might think. The third field being radiated is up near my collar bone which is effectively killing any remaining lymph nodes the surgeon wasn’t able to retrieve during surgery. This is also effecting the skin on my back above the shoulder blade as it’s going right through. The 4th and final field is towards the middle of my chest. This is virtually killing the internal mammory nodes that looked suspicious in the MRI prior to surgery. The surgeon, Dr K, wasn’t able to find and remove these during surgery, which isn’t unusual as they are hard to get to from beneath the ribs.
I was a bit worried about these internal mammory nodes before starting radiation and talked to a few of my Drs about it. My surgeon, Dr K, talked to a radiologist at the Wesley Breast Clinic who looked at my original MRI and CT scans and re-reported on them. Apparently radiologists can report differently on the same scan or images from tests such as MRIs and CT scans. Who knew?! My MRI was done in Rockhampton and reported by a radiologist up there soon afterwards. That radiologist didn’t have the benefit of seeing my CT scan as that was done down in Brisbane just prior to surgery. So the radiologist in Rockhampton reported that the suspicious internal mammory node was 7mm and likely to have cancer. This was taken on board by Dr K who said she’d try to retrieve it during surgery following a sentinal node biopsy the day prior to surgery. That procedure is still the most painful thing I’ve had throughout all of this. The pain was excruciating – ladies, it’s similar to when the baby’s head is crowning (the ring of fire) but in your breast. It involved 8-10 needles filled with radioactive material being injected into the two tumors in my breast. No local injections as that would have doubled the number of needles required and would have been tortureous. I had this procedure so that Dr K had a better chance of removing the internal mammory node(s) during surgery. The radioactive dye didn’t go to the internal mammory nodes, only the lymph nodes under my arm, so she wasn’t able to see them and remove them. So since then and much more intensely recently, I’ve been worried about this little 7mm sucker that is in my body, potentitally cancerous. Of course, in the theory the chemo should kill it, as should the extra radiation I’m having to this particular area in doses equivilent to removing it. I’ve spent time researching metastatic internal mammory nodes with breast cancer and the prognosis always seems to be worse than if they aren’t involved. They’re a draining system and could direct cancerous cells to other vital organs in my body. Very scary thought. Anyway, the radiologist at the Wesley Breast Clinic took a look at my scans and reports and said she was of the opinion that the internal mammory node was only 5mm and normal. If it had have been reported in this way initially I wouldn’t have been put through the sentinal node biopsy and perhaps radiation to the internal mammary nodes wouldn’t have been necessary. I knew this before radiation started and all of my doctors thought it best to be cautious and radiate the internal mammory nodes anyway. So I’ve followed their advice and had this area radiated as I’ve said above. I don’t like the thought of doing a form of treatment that isn’t necessary but then on the other hand it would be terrible to leave it and then find out down the track that the cancer has spread elsewhere via the internal mammory nodes. Better to be safe than sorry.
This whole line of thought has also got me thinking about the first tests I had up in Rockhampton that started when I was still pregnant with Polly and was given the all clear at that stage. I’m definitely the type of person who prefers to look and move forward instead of dwelling on the past too much but sometimes the past needs to be dwelled on before I can move on. I’m not the type to be able to simply brush things under the carpet and pretend they haven’t happened. And in this instance I am worried about other young women not being diagnosed early enough because the testing isn’t as thorough as it could be. Why did the results from my FNA (fine needle aspiration) come back as clear when there is no doubt in my mind that the lumps would have had cancerous cells in them at that time? Polly was two weeks old at this point and it wasn’t until the cancer had spread to my lymph nodes 3 months later that I went back for a follow up appointment. Maybe they decided not to do a core biopsy because I was breastfeeding, I’m not sure. Maybe it was because I’m young and it’s still considered an older ladies disease so they just didn’t think it was cancer. It was the core biopsy that finally gave me a cancer diagnosis though. I’m thinking it should have been done in the earlier round of testing but why wasn’t it? These questions are likely to remain unanswered as I suspect it will just be a shrug of the shoulders if I was to try to get some closure on this. If I had my time over again I would only go to a specialised breast clinic for anything breast related. I’d recommend any of you ladies doing the same if that’s an option for you. They see them all day long and know exactly what they’re looking at/for, whereas a radiology clinic doesn’t specialise in breasts, their areas of expertise are much wider but not as deep. The Wesley Breast Clinic gets a big thumbs up from me.
I may come across as very strong and together but I do have to say that I have my moments when I feel the exact opposite. One of the worst occurred a couple of months ago when I came across some photos and a blog of a guy who’s wife died of breast cancer. He took such beautiful, sometimes haunting photos of his wife, Jen, who was undergoing treatment, again, the last ditch effort to keep her alive as her breast cancer had metastisised in her liver and brain. I often shy away from stories where the woman affected by breast cancer has either died or has secondary cancer but this one hooked me majorly. It makes me feel physically sick to think that this could happen to me. I can’t hide from it though and when I do leave myself open to such information, it’s like a flood gate opens and can’t close again until a decent amount of tears and emotions have been released. I start thinking about the horrible things that could happen in the future if my cancer were to reoccur. Don’t think my mind doesn’t go there because I’m a shining light of positivity. It does go there and I can’t even say the words but I think you grasp what I’m saying. It’s hard for it not to go there when faced with something such as cancer whether prognosis is good or not so good. Of course my prognosis is good and as you know I don’t like to look too far ahead but its hard to keep the thoughts of recurrence completely out of my head. People do die from this disease. That’s a fact that can’t simply be forgotten or swept under the carpet. It’s real and no matter how positive I am that doesn’t change that fact. Scary isn’t it? Not something I like thinking about and I’m sure it’s not something you like reading about. But there it is. It’s real and scares the shit out of me, makes me feel very sad and absolutely hopeless sometimes. My heart races really fast, I get flustered and I have a hard time thinking about anything else. It’s like a little anxiety attack Usually its just before bed too which means I can’t get to sleep and have a terrible night sleep. Thank goodness for anxiety/sleeping tablets at moments like these. This particular episode lasted a few days. It was extremely hard to pull myself out of this slump and I can’t even remember what I needed to do to make myself feel better. I’m a big believer in positive affirmations and mind over matter so maybe I just talked myself out of the negativity. I do feel I have a lot of inner strength and often a little pep talk to myself is all that’s needed to help me through a rough patch plus making sure I love and respect myself.
A good thing I did for myself recently was attend a silent retreat meditation day at the Cancer Council which was a follow up to the mindfulness and meditation course I did with them earlier this year. The day was full of different meditations and lots of inner reflection. We weren’t to talk or make eye contact for 4.5 hours. I didn’t find it difficult, in fact I thoroughly enjoyed the time to focus fully on myself and my thoughts, feelings, surroundings, etc. It was a gift to myself and one I’d like to do more often if possible. The only hard part was integrating back into normal life such as traffic and Rosie & Polly talking and chattering away at me incessently. Next time I might ease myself back in a bit slower. Self discovery is a wonderful gift to give yourself, no matter what’s happening in your life. No religion required!
You’d think I had enough to deal with but the punches just keep on coming. My ovaries have recovered extremely quickly after chemo. I got my period back a month after finishing chemo. Being stubborn again and not giving up so easily which is good and bad. Good because my body is recovering from the shock of chemo but bad because ideally we need my body to be oestrogen free, which obviously it isn’t if I’m getting a period again and a blood test has confirmed that I’m pre-menopausal. So, I had the menopause chat with Dr N and have made the decision to start on Zoladex injections. This drug will tell my brain to stop sending signals to my ovaries telling them to produce oestrogen and put me into menopause, temporarily. Zoladex is given as a monthly subcutaneous injection into the skin around the middle of my belly. Actually I’m having it today while I’m at HOCA having my 3 weekly treatment. I’m a bit scared, the fear of the unknown really. I’m scared of having the needle in my belly but I’m more scared of the symptoms that will occur over the coming days, weeks, months and years. I’ll be on this for 2 years, maybe longer. Prior to making the decision to start the Zoladex I had a chat to Derek’s cousin, the gyneacological oncologist, about having my ovaries removed, or maybe even a full hysterectomy. It all sounds a bit extreme and too final for me at this point so I’m leaving those decisions for another day when I’m in a better headspace. I’ve had enough big decisions over the last 9 months, enough to last a life time, no more for the time being thank you very much. I may have said this previously but I’m actually more concerned about going on the hormonal therapies (I’ll be starting another one called Tamoxifen after radiation) than I was about the chemo. At least with the chemo there was a time frame and I knew my symptoms would come to an end sooner rather than later. With the hormone therapies the symptoms could be ongoing for years and going through menopause at such a young age has me worried about things I shouldn’t have to worry about at 35. Osteoporosis is my biggest concern. And I have good reason to worry because of my weight, or lack thereof. If you’re going through menopause and carrying around extra weight, you’re at less of a risk of bone thinning than if you’re skin and bones like me. Tip the scales though and at least my chances of recurrence are much lower because I eat healthily and am not carrying around extra weight. When I think of it that way I’ll take my skinny arse chances with the bone thinning and do what I can to counteract the chance of this occuring with weight bearing exercise and extra calcium and Vitamin D. I’ll have a bone density scan over the next couple of weeks to see how my bones look prior to these drugs taking effect and then every so often to make sure they’re holding up ok. The other menopausal side effects that concern me the most are the hot flushes and problems sleeping. I’m also wondering if being on two drugs that have the same side effects will make my symptoms worse than if I was only on the one – like a double whammy. Only time will tell and at least I’m not starting both at the same time. Anyway, there are bound to be some bad bits but I’ve just got to suck it up along with everything else and try to focus on the good and great in my life.
Thursday, 6 June 2013
So the above was written over the last couple of months. I’m not sure why I don’t just post what I’ve written and then write another whole new post. It’s often in the back of my mind. I’ll try and give it a shot today even if I don’t feel I’ve finished writing. I don’t quite have the knack of this blogging thing yet, I think posts should be shorter and more to the point. Whereas mine are long ramblings. Oh well. Back to it. (haha, that didn’t happen…)
I’ve now finished radiation. The whole experience was pretty horrible. The pain in my shoulder joint continued and even got worse towards the end. The damage has been done and my shoulder and back have weakened allowing an injury to sneak in this week. Physio yesterday and today will hopefully relieve the pain I’m feeling from this. The healthy body is like a set of dominoes laid out just ready and waiting to be knocked over. The first one gets knocked over and then many follow in its place. I feel like a pack of dominoes laid out carefully but being knocked over slowly, one at a time, sometimes two or three at a time in a bad week. I’m trying my hardest to keep them upright but things happen out of my control that make them fall over, knocking others in their way. The after effects of the radiation are much worse than I expected and very understated from my initial meetings with the radiation staff. I was expecting redness and sunburn but what has happened far exceeded my expectations, and not in a good way. My skin skipped the blistering stage and went straight to peeling and rubbing away, leaving some very red raw patches. The worst is under my arm in the axillar, the worse possible spot as the friction from my arm or clothing just makes it worse. Even though treatment finished up last Thursday 30 May, I can expect my skin to continue radiating for a week or two afterwards. In my second last week of radiation my skin was looking fabulous and Dr M thought it was very unlikely that I would blister. Air punch! So the following week when my skin starting rubbing away I freaked out a little. Come Friday the day after my treatment finished and my Mum flying home I was back at the hospital late in the afternoon with Polly getting my burns tended to and dressed by the nurses. I have tried numerous creams and dressings and finally on Tuesday morning they used me as a guinea pig and put on a new gel type dressing that covers my whole left chest. It’s very soothing and cool. It releived the nerve pain and itching instantly (not forever but for long enough to get some relief). Since Monday I’ve been living in a fog of painkillers and have decided I’d rather the pain than the painkiller fog and hangover. Bloody horrible come down yesterday. I really feel for burn victims who suffer with burns on their faces or a large area of their body. The pain can be described as burning, searing, itching, stinging, throbbing, tingly nerve pain that becomes unbearable. I also feel bruised internally around my ribcage. I’d have to say that for me, the radiation has been worse than the chemo. It may be because the chemo was a while ago now and maybe I’ve forgotten how bad I felt and I’m in the middle of this RIGHT NOW. Who knows. Maybe I’m just a big sook and didn’t realise it until now. I thought I was doing so well! Anyway, along with everything else that has come to pass, this will too and in a week or two I’ll look back and probably say, that wasn’t so bad.
I’ve had such amazing support from my family over the last couple of months (and beyond). Our league of babysitters extends from our immediate families to aunties, uncles and cousins. The thing we’ve needed most throughout this whole life changing experience is someone to look after the girls for us when we aren’t able to and to help alleviate any stress. So a big thank you to all of our babysitters and helpers. Your help has meant the girls can continue on in their lives feeling loved, supported and comfortable in their surroundings while still having the boundaries that we set for them. This is very important at this stage of their lives and you’ve all contributed in making them the little people they are today. I’ll never be able to thank you all enough. Most of all my Mum has been my shining light. Before I had the girls Mum and I couldn’t spend more than a few nights together. I was in my 20s and didn’t really understand or fully appreciate the role of being a mother. I’ve become a lot more tolerant and understanding since having the girls and over the last 9 months the girls and I have loved spending all this extra time with my Mum and their Diddy (our name for Grandma). It’s definitely one of the most positive experiences throughout all of this. We’ve grown so much closer which I love. You put me and my family first (no complaints), which is the ultimate sacrifice. Love you Mum.
Back in April Mum watched the girls so Derek and I could enjoy a weekend away together. We went to Mt Tamborine. It was cool weather which was perfect for being on the mountain. A lovely place to visit and we thoroughly enjoyed our time away. Our next trip away is thanks to my Aunty Deb in Perth who held a fundraiser on my behalf and raised enough money to send us away for a luxurious long weekend. Thanks again Aunty Deb! And thanks Mum (and maybe Aunty Gail) in advance for watching the girls. We’re not sure where we’ll go yet but I’d say it will be in August. I need time to recover from radiation plus I’m going to Melbourne with Beck and Amelia at the end of June and it’s Rosie’s 4th birthday in July. I think she deserves a lovely little party so time and energy will need to be spent on making this day extra special for her. We’ve been to a couple of 4th birthday parties over the last couple of months, friends of hers from kindy. I’ve met some lovely mums and am keeping in touch with them. Rosie and I have been on a play date with one who lives around the corner from us. Very convenient.
We’ve been doing lots of socialising and our biggest social event was my end of chemo and Polly’s first birthday party. Thank you to everyone who attended to make it the crazy party it was. I think for Rosie’s birthday in July we may have it at the park! We also participated in the Mother’s Day Classic 4km walk and I thank everyone who sponsored me, I raised over $1000. Thanks also to Jo who organised some pink shirts for the event. It was a great way to spend Mother’s Day, walking with family and friends for such an important event in raising vital funds for breast cancer. I hope to be able to run 8km next year.
I’ve just changed Rosie’s days to Tuesday, Thursday and Friday to coincide with a parent lead playgroup at Montessori that Polly and I will attend on Tuesday’s next term. I’m looking forward to spending this quality time with Polly because not only is she the second child so time is halved but I haven’t been able to be the mum I want to be because of all my treatment and appointments plus feeling like shite too often. I’m really hoping I can focus more on the girls for the second half of this year instead of being so self obsessed. It’s a terrible feeling, having to put myself first time and time again before my two beautiful girls and their needs and desires. I know their needs are met but when Polly wants to be picked up and I can’t because of my burns and sore back or when Rosie wants to me sit down and play with her and I have to go out for yet another medical appointment, it really tugs at my heart strings and I get the dreaded mothers guilt, a trap I’ve never really fallen into before all of this. Actually, it breaks my heart over and over again. But I look forward and know that things will change and I will feel better soon.
Thursday 20 June, 2013
Well, you wouldn’t think things could get any worse but they have. Seriously, you could not make this stuff up! I’m in hospital right now about to find out whether I’m going to have a Laproscopic Appendectomy.
Finally my radiation burns started healing and even though my skin is still sensitive it’s no longer sore or itchy and the fresh new skin is looking lovely. I was back at the hospital on Tuesday afternoon for my second Zoladex injection. This time it bloody hurt. There was a delay and the numbing cream had worn off. The pain didn’t ease and in fact got a whole lot worse. The injection was on my right side in my abdomen and the pain started at the injection site and then gradually moved down to above my right hip. I was home alone with Polly for two nights and by the time I’d done the whole bath dinner bed routine I was in agony. I swear it felt worse than labour pains or at least on par. I called my oncology nurse and explained my pain to her. She didn’t think the Zoladex was the culprit and suggested I try some paracetamol. Well it took me nearly 10 mins to get up off the floor and get the paracetamol, serious, all consuming pain. By this point and was crying and very confused about why I was in so much pain. I called my oncology nurse again and she had Dr N, my oncologist, call me. Dr N didn’t think it was Zoladex related either and suggested stronger pain killers and if the pain continued or worsened get myself down to emergency, in an ambulance with Polly if necessary. I put my aunty and uncle on notice and had a very bad night sleep. The pain wasn’t acute anymore but it was persistent and my tummy was very very tender to touch and even to movement. In the morning I went to my GP first and then onto Wesley Emergency. I’d had a piece of toast in the morning and as soon as I was admitted into emergency they made me nil by mouth, no food, no water until further notice. Saw the Dr, was poked and prodded, had an ultrasound. The ultrasound has a 50% chance of showing the actual appendix and unfortunately in my case the useless little sucker was hiding behind my bowel and not making itself visable to the sonographer. I volunteered to stand on my head if that would help but alas a change of positioning wouldn’t make a difference. Ovaries got the all clear at that point.
So, the ER Dr suggested I see a surgeon who kept me waiting all afternoon. Dr B was paged around 12:45 and I finally saw him around 4:30. By this time I’d passed my Hangry stage and was weak and a shell of a woman due to having fasted since 7:30 that morning. He was briefly apologetic before grabbing a hold of my hand and taking my pulse. I personally think it’s a trick he uses to help settle the patient and make them feel more at ease, or maybe he is actually taking the pulse. Anyway, he poked and proded me and said he wanted me to stay in overnight with the possibility of surgery the following day. When he came back later I asked him what were the chances of me having appendicitis with how I was presenting, symptom wise. He said less than 50% so I opted for a CT scan of my abdomen which has a 95% success rate in showing whether an appendix is inflamed. He was ready to rush me straight into theatre and said the other possibility was that a cyst in my ovary had ruptured and the blood was causing the pain. He could clean this up while he was in there but it wasn’t necessary as it would clean itself out in time. I wanted more reassurance that it was my appendix before committing to surgery to whip it out. The appendix has no function and I’m not too concerned about having it removed but I don’t want surgery and recovery that is not necessary.
I was given the all clear to eat around 6ish. I ate, had my scan and was moved from emergency up to the ward. Where I ate the most disappointing dinner of cake, custard, yoghurt and cheese & crackers. Some may love this as a dinner but not me. Healthy food please! I’m sitting here dreaming of a hot meal right now as I’m fasting again in preperation for possible surgery. God I’m hungry. I don’t handle fasting very well at all. I’m sure I’ve said that previously with other ops I’ve had over the last year. Anyway, here I am again, waiting for the surgeon to discuss what the next move is. My oncologist Dr N, popped in to see me and she read me the report from the CT scan. Obviously the information was given to the radiologist that I was having pain in my right side. He has taken this into consideration when writing his report and has said he thinks the tubal thickening he sees is an inflammed appendix but it’s hard to tell as I’m skinny and fat helps in seeing the internal organs better under CT scan. Go figure. So, I’m sitting here and my pain has greatly reduced compared to Tuesday night and Wednesday. It doesn’t hurt to laugh or cough anymore. If my appendix was really inflammed or at risk of bursting I really should be in agony right now. The other markers for appendicitis are nausea, vomiting, loss of appetite, plus issues with the white blood count when blood is taken. I’ve had no issues with any of these. It’s a tough one. I think what they’re saying is I have mild appendicitis based on my pain and something that looks like it could possibly be an inflammed appendix on the ct scan but is this worth undergoing the knife for? Personally, I don’t think so. I just wish the surgeon would hurry up so we can discuss. I need his professional opinion and advice and I need it now as I’m Hangry and sick of bloody waiting!
I’ve seen the surgeon and it’s good news. No surgery for me today! The reason behind this decision is because my pain has virtually gone. I still have tenderness in my tummy but obivously not enough to warrant cutting it open. I’m glad that Dr B made this suggestion as it’s the decision I was leaning towards anyway. He did say that there’s an increased chance of another appendix attack within 12 months. Alternatively it could possibly be ruptured ovarian cysts and just to keep on top of ibuprofen and paracetamol for any pain related to that possibility. At least if I have another appendix attack there won’t be any confusion about what is happening, I’m pretty sure I’ll know! I’m back to see the surgeon on Monday for a check up. Obviously if the pain increases again I’ll be straight back in.
So I’m off home very soon. I’ve been allowed to eat and drink. Thanks to everyone who helped over the last two days, Uncle Brian and Aunty Deb, Aunty Marie and Derke’s Aunty Annette. Uncle Brian stayed with me at the hospital all day yesterday listening to me complaining about how hungry I was. I swear I was complaining more about that than about the pain I was in! I was meant to be going to Melbourne this weekend with Rebecca and Amelia. That’s since been cancelled and the girls have decided to come to me instead. I am so happy that we’ll still have our girlie weekend, even if it’s not in Melbourne. Thanks girls – BFF 🙂
Now, a bit about what I was starting to focus on before all the drama of the last two days. Rebecca and I have formed a team to walk 60km over two days in October this year. The event is called The Weekend to End Women’s Cancers and will raise funds for the Royal Brisbane and Women’s Hospital and also Queensland Institute of Medical Research in relation to treating and researching women’s cancers. Our team is called Scrambled Legs and if you can’t join us in our efforts, how about making a donation. To be elible to participate in the walk we must raise $2,000 each. I’m aiming a bit higher and would like to raise $5,000. If you donate before end of June you can include it in this year’s tax return. Make a large donation and pay less tax! Be quick, you only have a few days left.
If you’re excited at the prospect walking and fundraising yourself we’d love to have you join our team. If you’d love to do it but are worried about either walking the full 60km or raising the required $2000 then have no fear, the organisers have provided fundraising specialists and walker trainers to help you reach your goals – just give them a call on 1300 22 9255. There will also be cars to pick you up during the walk and take you to the next pit stop if you need a break or onto camp if you simply can’t walk another step or are injured. In regards to the fundraising, I’d like to hold a couple of events in the lead up to the walk so anyone who has any ideas or would like to help, please let me know. Even if you’d like to hold your own events and donate the proceeds to our team, that would be very much appreciated. Did you know that as Queensland women, 1 in 2 of us will develop some form of cancer in our lifetimes? 1 in 3 Australian women. Those numbers are much higher than I could have imagined. Will it be you or your daughter? Your mother or your sister. It’s frightening. Most of the women in my family have been dealt the cancer card and I don’t want the same for Rosie and Polly. I’m going to do what I can to help end women’s cancers for my girls if nothing or no one else. Please help me in any way you can!
Thursday 27 June 2013
Both girls have been a little sick lately as is normal at the start of winter. Poor Polly had tonsilitis. Polly is nearly 15 months old and following in her sisters footstep, meaning she’s happy crawling and shows hardly any interest in walking. In her own time I say. She does love climbing though and has started climbing up chairs and onto tables. Eek! Rosie has been going to 4th birthday parties and having a great time with her friends from daycare. I’ve become friendly with a couple of the mums too which is a lovely addition. Rosie’s in kindy next year and will continue on at Indooroopilly Montessori. The following year she’ll be in prep and it’s likely we’ll still be here so we’re looking into schools for her already. We’ve found a very small school that is big on self directed learning and community. I’m very excited about it. I feel that a good start to primary school is of more importance than the high school they’ll end up attending in years to come. These are the formative years after all.
Beck and Amelia came to visit me instead of going to Melbourne without me. I was so touched by this decision, we had such a lovely weekend together, laughing, crying and catching up. We even went and stayed in the city at the Marriott for one night where we did a little shopping, relaxed in our room with no children, went out for dinner, dessert and cocktails. I was extremely tired and may have pushed myself a bit much after the big week I had last week but it was well worth it. We’ve decided we’re going to New York for our 40ths and will also try to catch up once a year child free. A nice treat to ourselves to look forward to.
So I’m back at the hospital again for my 3 weekly treatment. Nothing out of the ordinary to report. Hot flushes are a bitch and are becoming more frequent. They’re more like mini heat waves which is what my mum calls them. They’re bearable but even in this cold weather, I still have to throw all the blankets off in the middle of the night until it passes. Then I snuggle up again. I hope to be able to start focusing on my walking training schedule soon, just waiting for my stupid cold to pass (there’s always something isn’t there! When will my body recover for long enough to keep on the up and up?) Derek, the girls, Missy and I will hopefully do a couple of walks on the weekends and I’ll do walks with Polly & Missy during the week. I just need to start! It’s very frustrating but I’m trying my hardest to keep that positive mindset.
Here are a few quotes and funnies that have resonated with me lately. Also some recent pics.
Until next time, Ciao!
(1) Derek and I at Mt Tamborine sampling the locally made beers
(2) Rosie doing Mother’s Day Classic Walk for breast cancer
(3) Polly just being cheeky
(4) Rosie and I posing for the camera
(5) Derek & I in shirts Jo organised for Mother’s Day Classic Walk
(6) Amelia, Rebecca and I having fun on our last minute trip to Brisbane when we had to cancel our Melbourne trip
(7) Polly’s new hair cut courtesy of me
(8) Rosie enjoying b’day cake at her best friend Charlotte’s b’day party
I’m in the middle of my next blog post which I should get up by the end of next week. In the meantime I thought I’d let you all know that I’m walking in the Mother’s Day Classic this Sunday to help raise funds for breast cancer research. I’m doing the easy leg which is a 4.5km walk. It will be a challenge for me as I’m halfway through radiation and beginning to tire a little. My neuropathy from the chemo is also causing some issues in my toes but I’m sure I’ll be able to push through these barriers come Sunday in the spirit of the day. I’m hoping Rosie and Polly will enjoy the walk with me on our special day.
Anyway just a quick post really as I’m really hoping that some of you may be able to sponsor me for the walk. I put up my sponsor page on Facebook earlier tonight and have already raised $170 at last count. Wouldn’t it be great if I could raise a lot more than that?! With your help I can. Head on over to my sponsor page and please make a donation of whatever size is possible for you. Every bit helps and gosh it makes you feel warm and fuzzy inside, doesn’t it? Now give yourself a pat on the back and sleep well knowing you’ve done your good deed for the day or week or year (depending on how much you donate 😉
Here’s the link. Thanks in advance!
Thursday 28 February 2013
So here we are again. I get to a point several weeks after my last post and already I’ve been thinking for a couple of weeks that I should be posting on my blog more regularly but life just gets in the way, or fatigue does. But mainly life this time round. I’ve been a busy girl of late. Right now I’m back at HOCA at the Wesley having my weekly chemo.
So yep, I’m still on my weekly chemo with three weekly Herceptin and trial drug and due to my side effects Dr N says I’m her problem child (patient). There’s always one isn’t there! The diarrhea continues to be an issue and I’m controlling it with Gastro Stop now. I’ve lost a few kilos but continue to have a healthy appetite. I was trying not to eat anything too high in fibre but have thrown that out the window the last couple of weeks because it really doesn’t matter what I eat, the symptoms are there. I’m used to a high fibre diet and was finding it difficult to find suitable foods to feed not only my body but my love for food. The froth from white starchy rice or potatoes anyone? No, me neither. So Dr N likes a challenge and in trying to get to the bottom of it last week she decided to skip the chemo. So no chemo last week (21 Feb), just the Herceptin and trial drug/placebo. I felt so much better on the Thursday and Friday, normal you could say. Then unfortunately the diarrhea hit on Saturday and has continued this week so at this stage the chemo has been ruled out as the cause for this issue. Could it be a bug or infection in the gut? Samples have indicated no known issues but they need to know what to test for. One thing I have been tested for is Giardia as a friend had it and antibiotics fixed it up for her even though her test also came back clear of the bug itself. So I’m to take a course of antibiotics and hope for the best. If it doesn’t work, they’ll try me on another lot. If that doesn’t work there’s a chance it could be the trial drug. That’s good and bad, good because that means there’s a good chance I’m actually on the trial drug and not the placebo, bad because I’m on it until January 2014. Having this side effect for a whole year would not only be exhausting but what I’d imagine to be terrible for my gut. It’s a matter of trial and error. They may even have a look at my insides to see what’s happening in there. Not looking forward to that test if it comes about! My mouth is full of ulcers and one of the nurses said the mouth is a good indication as to what’s happening in the gut. The Dr doesn’t think there’s a link though. Possibly it could be a side effect of the trial drug as it’s not common with the other drugs I’m taking. But again, that’s a good thing as it’s another indicator I could possibly be on the trial drug and not the placebo. That’s enough about that. It really is affecting my day to day life so something I must write about. I hope it doesn’t bother any of you me being so open about it.
In my last post I wrote about haemoglobins. Those levels have been jumping up and down like a bloody frog over the last few weeks. At one point they were the dreaded 100 and there was talk of a blood transfusion. Eek! I managed to escape without someone else’s blood invading my body thankfully and it’s been up again the last couple of weeks. Last week I thought it was a given that it would continue heading south and I had talked myself into having the blood transfusion. As Derek said, if Lance Armstrong used them to increase his ability and stamina then imagine how good I would feel after one. I think I was even looking forward to that boost in energy levels and was maybe a tiny bit disappointed that I’d have to continue on using my energy levels in store and rationing them out each day as required. Anyway, all my bloods are looking good today so that’s great. After today there’s only 4 weeks left of chemo. Yay!
A couple of weeks ago I had a particularly hard day. It was Thursday 14 February, Valentine’s Day actually. Derek took half a day off work to come along with me to a couple of Dr appointments before chemo – how romantic! I met my Radiation Oncologist, Dr M. What a lovely lady. Another loving and caring woman to add to my all female medical team. I’ll start radiation approx. 3 weeks after I finish chemo, I was hoping to have a break so that’s a relief. I’ll have to have another appointment before starting to align the machine to the points on my body where they are going to give the radiation. Tiny permanent tattoo dots will be marked on my body to align it to each time. I’ll be going 5 days a week for 5 1/2 weeks, except every second Wednesday when the machines get serviced. Apart from waiting time, it should only take 15 minutes each time. I’d like to try align the time with dropping Rosie off at daycare on some mornings that she goes, then onto the hospital for treatment. Then if I’m lucky enough over to Choices for either some reflexology, indian head massage or reiki. They offer free appointments of these fantastic treatments on Thursdays so hopefully I can line them up. I’d love a pedicure and manicure right about now and why not add a facial and body scrub/massage onto that. Unfortunately whilst on chemo these are really inadvisable due to higher risk of infection, no exfoliating and potential lifting of nails. I’ve read about women’s nails actually coming off while on Taxol. Ouchy! So I’ll hold off until my immune system has recovered and will then look at treating myself to a day spa somewhere nice with champagne and all the yummy things I’ve had to stop eating like smoked salmon, sushi and soft/blue cheeses. Mmmmm, daydreaming about it now. Sounds lovely!
Back to reality and my “bad day”. After my radiation meeting we met with Dr N to speak to her about our desire to grow our family after treatment had finished. I told her about research I’d read and information I’d received from other health professionals. She laid it out for me very kindly. Due to a number of factors – size of tumours, lymph nodes involved, HER2 positive (more aggresive than HER2 negative with a very low risk of it going to the brain), plus the high levels of hormones (estrogen and progesterone) found on my tumours, it would be very risky for me to fall pregnant. She’s even gone as far to say ideally she’d like to keep my body from producing estrogen, therefore keeping me menopausal… forever. I hope by this she means menopausal, then post menopausal, not just in menopause for. the. rest. of. my. life! Something I should probably check… We spoke about other young women having had breast cancer and wanting to continue making babies after treatment (or perhaps becoming a first time mum). I was worried that she was using a blanket for all breast cancer survivors, that none of us should attempt falling pregnant after treatment but her advice is based on my specific diagnosis and the number of high risk factors involved in my case. Her advice might be different for someone else. This is devastating and I was down for a number of days, feeling desperate and without control over my emotions. It even makes me very teary now, sitting here typing this. It’s hard and will continue to be hard for quite some time I feel. I really felt there was hope and a small chance I could have another baby. That small glimmer of hope disappeared that day. But the facts of the matter are that I have two beautiful girls that I have to consider in this. I couldn’t consider risking my life for another baby when that choice could leave Rosie and Polly without their Mummy. So the decision has been made at this point, that there will be no more babies from us. Although the Dr has said that doesn’t need to be final, just her advice at this stage. She suggested not doing anything as drastic as a “fix” for either of us at this stage. That leaves it open though and I’m not sure that’s what is best for me as that means there’s still a small hope and from what she said, there really isn’t or it’s certainly not advisable anyway. So I’ve just gone around in a circle. Argh! I do have one more road I need to follow though before I wrap this up completely – satisfy myself with research that it really is for the best to leave our family at 4. I now have a contact in the know who can point me in the direction of the right research for me to be able to make that final decision. Because that’s what it always comes down to, having all the information on hand before making any final decisions. I feel I need to do this final step before I can close this chapter of my life.
Just after this hard to swallow news, we went to Noosa and I was able to “run away” from my problems for a few days, except the diarrhea, that sucker will follow you wherever you go! We had a lovely time, stayed at the end of Hastings Street, swam, ate, shopped and enjoyed each others company. Derek and I even went out for dinner one night and I enjoyed the most delish seafood spaghetti. Coming back to Brisbane from Noosa it rained the whole way and my mood matched the weather. I went from feeling quite happy to not wanting to go back to reality and face my fears and problems. I wanted to bury my head in the sand for another few days at least. I don’t like feeling sorry for myself and bursting into tears at any given moment. This is how it was a lot of Monday. I had to snap out of it before Tuesday, my 35th birthday. I awoke on Tuesday morning still feeling sorry for myself. But not surprisingly I did snap out of it. I had a lovely morning in bed with my girls, plus breakfast and pressies. The girls and I also had our photo taken for The Courier Mail – some of you may have seen the article and picture in the paper on Saturday 9 March. (If you missed it, here it is online). Once the girls were down having a rest I took myself off to the movies, one of my favourite things to do by myself. I watched Life of Pi in 3D and absolutely loved it. The story was heart wrenching and heartwarming at the same time with amazing visuals. It was a nice surprise to arrive home and my Dad had popped down for a three day visit! That night I went out for dinner and to see Norah Jones with Renae B. All in all, a lovely day.
The next day (20 Feb) it was back to being a patient. I had a brain scan as I’d been getting terrible headaches and they wanted to rule out anything nasty up there. Got the all clear the following day when back for chemo. It was that day Dr N gave me a break from the chemo.
7 March 2013 – back at the Wesley again today for chemo but I’ll continue writing about what’s been happening up to this point.
Some of the other symptoms I’ve been getting lately are dry skin, numb finger tips and toe tips (start of Neuropathy, if that gets worse I’ll have trouble using my fingers and would need to advise Dr N at that point before it gets any worse. If that was to happen then a dose reduction or number of doses would be reduced), aches and pains in the body including joints, legs and arms, especially when lying down trying to rest or sleep, mini heat waves (as my mum calls them) – not hot flushes just yet but warming up to them no doubt, fingernails starting to life up = bloody painful, mouth ulcers as mentioned above. Even with all of these symptoms I’m not feeling too bad. The antibiotics may have done the trick with the upset tummy, will just have to wait and see what happens next week once I have the trio of drugs again.
Early February I went to see an allergy Dr about my egg white allergy. Initially I’d been diagnosed by blood test and the allergy clinic told me that a skin prick test is much more accurate. So I was tested for a number of things and turns out I don’t have an egg white allergy, it’s just an intolerance to egg whites. I did find out I have a dust mite allergy but then so does over a quarter of the population (known) and I have no symptoms so I’m not really worrying about that at the moment. The Dr told me to introduce eggs back into my diet extremely slowly, like one teaspoon of scrambled egg at a time. Pretty hard to do without wasting food. I stupidly ate 3/4 of an egg yesterday and really suffered because of it. So for the time being I’m going to take eggs off the menu again and focus on getting through the chemo at least and seeing if the trial drugs is having an effect on my system. I’m on the probiotics now to try and get the good bacteria back in my gut, it needs all the help it can get.
Over the last month I’ve made some connections with other women going through their own cancer “journey” (I really wish I could think of a different word to say here but it’s too hard with my vague brain to come up anything else). Another symptom, my vagueness and inability to think of the words I want to say when I want to say them. Sometimes I feel a bit silly standing there mouth open waiting for the words to come out, but they don’t and often it’s because they’ve flitted off to another part of my brain that just isn’t accessible at that time. Or maybe they’ve just left my being all together, never to return. I’d imagine this is what it’s like as you get older and is likely a side effect of menopause, I’m nearly there after all. Is that being ageist? Gosh I hope not, sorry if I’ve caused offense. Mum told me in my last blog I said “old people” instead of the elderly – oops, sorry again! Anyway, vagueness is the best word I can come up with to explain this terribly frustrating symptom. And even though I say it’s frustrating I don’t let it bother me, I just say oh well, that’s gone, let’s talk about something else and maybe it will come back to me. Some people call it chemo brain but my Dr calls it menopause brain which is probably similar to baby and pregnancy brain. You could even call it lack of sleep brain. All these things that affect our sharpness and the way our brain operates on a day to day basis. We all suffer from it at some point in our lives. Time to pull out the Suduko and maybe a good word game on the iPhone. Any suggestions?
Well look at that, I started talking about the women I’ve met and ended up talking about how vague I am at times. Ha! Drifter… Anyway, I went to my first Younger Women’s Group at the Kym Walters Choices Program at the Wesley at the start of February and went to my second one this week (first Tuesday of the month). The first meeting involved speakers who had come out the other side of breast cancer and the second was an amazing speaker called Eliza Whiteside. What an inspirational woman, really truly. She was diagnosed with cancer at 28 (with 1 young child), she’s now 10 years on and even had her own miracle baby after treatment. Eliza is actually a cancer research scientist and after her breast cancer experience decided to turn her attention from gynecological cancer to breast cancer. Her research study is in desperate need of funding and if any of you are looking, or know someone who is, at giving to a very worthy cause then this could be it! They’ve discovered things in the lab involving a rarely heard of hormone (to the lay person) that could be affecting why and how some women get breast cancer. The hormone is called FSH and goes up when oestrogen starts heading down around menopause. It’s also a hormone sometimes used in high doses during IVF. Something for people having gone through or looking at going through IVF to consider. Apparently there’s a way of doing it without giving you large amounts of FSH but I’m not sure what’s it’s called exactly. I’m not here to scare anyone with this information but if you have gone through IVF yourself or know people who have please make sure they are checking their breasts regularly, vigilance is what I’m suggesting here. It all depends on your make up and if the cells in your body that could potentially turn into a cancer are highly receptive to hormones such as FSH, oestrogen and progesterone. Very exciting stuff but obviously cash is needed to progress the research. This could mean actual prevention of some breast cancers, rather than treatment and all the side effects that go along with treatment. Eliza works at QUT in Brisbane – find out more about her and her research program. She was happy to answer so many of our questions and I’ll be emailing her with a list of some more questions. She’s even opened the doors to her lab so we can go and see her work in action, which I’d love to take her up on sometime.
It’s great to talk to other young women going through a similar experience to me. I feel I’m better placed emotionally because of this. I’ve met one girl in particular I feel a real connection with and I think we’ll be friends for a long time. Back in January I got in touch with a charity, who’s been helping me, to ask them about setting up a Mums and Bubs group for young mums with cancer (any type). I would love to be able to meet up with other young mums who have children under school age, much in the same way I’ve been in Mums and Bubs groups in the past with both the girls. They’ve been such a great support for me with young babies and I can see huge benefits of talking to other young mums with young children who also have cancer. The kids can play together and we can chat about whatever might be bothering us that day or that week. I’m not interested in making new friends down here in Brisbane unless I have that cancer connection, at this stage anyway. It’s all consuming for me at the moment and I don’t feel I’d be able to be myself with new people without the cancer connection. I’d probably scare them away with the intensity or appear vague at best. Plus Derek and I are lucky to have a lot of old friends down here in Brisbane who are great support for us and I still feel I can be myself whether I want to talk about cancer or something totally different. Anyway, back on track, the charity I spoke with doesn’t have the capacity to do something like this at the moment but was able to share the contact details of other mums who are interested in meeting up. I’ve been in touch with them this week and have heard back from a couple who are interested. There are only 5 of us so hopefully it won’t be too hard to arrange something once a fortnight. I’m still waiting to hear back from a couple more.
My friend from the Younger Woman’s Group and I decided to try our hand at dragon boating last Saturday morning. Dragons Abreast is run through Brisbane River Dragons in Comlsie near the Brisbane River. The Dragons Abreast side of things is full of breast cancer survivors and their team is called Missabittatitti, which I think is a fantastic play of words. Snort funny even. They’re a great bunch of gals who range in age from 30s to 70s (I think). We were told rain hail or shine, paddling will happen. I was up at 5am and after meditating was on my way in the very heavy rain to Comslie. I had mixed feelings, I really wanted to get out on the water but I was scared shitless at the same time. Due to safety they made the decision not to take us out that morning. Too many newbies, a swollen river with lots of debris and not enough people for each boat in these conditions meant we spent the morning at a local cafe getting to know each other. I was slightly relieved and am now looking forward to this coming Saturday to be initiated into the sport that is dragon boating.
Thursday 14 March 2013:
Back again – trio of drugs day. Last one with all three. Only two more chemos to go after this week. Counting down the days. My diarrhea has persisted and Dr N now thinks there’s an even better chance I’m on the trial drug. She seems to think that it will let up once the combination chemo/trial drug is complete. So fingers are crossed for this symptom to disappear or at least reduce after 28 March, my last day of chemo.
I went dragon boating on Saturday and got out on the water this time. It was a lovely morning, rain before 7, out on the water in the sunshine for an hour and then a little rain after 8 while we had breakfast in the park and an update on upcoming events and competitions. There are many competitions (regattas) run throughout the year so as my fitness returns maybe I’ll try one or two out. I was extremely sore after paddling on Saturday but sore in the right places so I must have been using the right technique for the most part. I did have to take a few breaks from paddling while in the boat but gosh it felt good doing something physical outside. I’m really looking forward to chemo being over, my immune system improving and jumping back in the pool. Even though we have a pool it’s freezing so I’d like to go to the heated pool at the end of our street to do laps (they even have a creche so it’s ideal). Anyway, dragon boating was a lot of fun and I’ll be back there this Saturday bright and early (6:30am) to do it all again.
I’ve been attending the Mindfulness Course at the Cancer Council in the Valley every Friday and am enjoying what I’m learning and living in the moment more often. Meditating for 40 mins every day is certainly a challenge and I will have to cut it back to 20 mins once the course is finished. I have a meditation app on my phone that I quite like that gives me the option of 10, 20 or 30 mins. It’s called Yoga Nidra and the guy is Australian, his voice is relaxing and easy to listen to. At the moment I am feeling that it’s a chore to meditate for 40 mins every single day, which isn’t great to feel that way, but I’m thinking when I get back to a meditation that I enjoy and the time is more achievable, then it will be more enjoyable rather than feeling like a chore. In saying that, I am getting a lot out of the course and would definitely recommend it to anyone touched by cancer.
As mentioned above, I did my first gig as a media volunteer for Cancer Council Australia a few weeks ago. It was an interview with News Limiteds’ National Health Reporter and the article ended up in the Courier Mail and Adelaide Advertiser on Saturday 9 March 2013, plus online here. To coincide with that, Cancer Council have also put up my case study/real story on their website along with a lovely picture of my beautiful family taken on Derek’s birthday just before we went out for dinner and a movie. You can view it on the Cancer Council website. It’s strange seeing me totally bald as I’m now used to the soft fluff covering my skull, it feels like so long ago that I was totally bald but it’s really only been a couple of months. Anyway, I agreed to be a media volunteer and write up my case study for the Cancer Council because I really want to be able to help other women in some way by sharing my experience. I do believe that sharing my story and my experiences along the way will help others who have just been diagnosed, undergoing treatment and post treatment down the track. Hopefully it also encourages other woman (particularly young woman) to do regular checks so that if they do have cancer it is caught as early as possible.
We’ve had lots of visitors lately. Mum was here for a month (Dad for a few days which was a nice surprise for my birthday and their anniversary the following day) and David & Sue for two weeks. In between the two Toby, Jo and Harry visited for a long weekend. It was great to see the kids play so well together. It does make me a little sad that Polly and Harry would be playing together a lot more often if we were still in Yeppoon but the aim is still to get back there so will just enjoy it more when we do. Derek went out with the boys on the Saturday night and Jo and I stayed in with the kiddies, enjoyed good Thai food and even a glass of wine (extremely rare for me these days). My good friend Michelle also came down for a visit and it was great to see her plus some other friends while she was here. Once again the help from Mum & Dad, David & Sue plus other friends and family has been terrific. I’m reflecting on this as we’re without our help for a couple of weeks and even though I’m enjoying having our house back to ourselves for a change, it certainly does make life that bit harder for me, especially with sick children!
The Brisbane Mother’s Day Classic run/walk is happening on Mother’s Day, Sunday 12 May 2013. I’m going to do the 4.5km walk with Rosie and Polly (in the pram) and Derek might do the 8km run. If anyone would like to join us please let me know or go ahead and register here: I’m going to join the dragon boating team – Missabittatitti, so feel free to do the same when selecting your team. I’d love to walk with some friends and/or family though so please don’t hesitate to let me know if you are interested in spending Mother’s Day morning walking or running to support breast cancer.
Another event I’d really like to attend is the inaugural Mummy’s Wish Mother’s Day Celebration Ball. It’s on Friday 3 May at the Brisbane Hilton. Nothing against the guys in our lives but I’d love to get a group of girls together for this night out. The boys can stay home and babysit! It’s $175 each or $1,500 for a table of ten. Please let me know if you’d like to come with me and I’ll arrange a table.
So I’m sitting here at the hospital reflecting back on my visits here. I’ve certainly become much braver since my first round of chemo. I’m happy to come on my own now and have come to enjoy the time to myself. What a way to get time to myself! I sit and read, type my blog, eat and drink, listen to music, chat with the nurses and Dr, rest my eyes and body. If it wasn’t for the fact I’m getting these drugs pumped into my body in this hospital setting it would be quite a lovely way to spend a day every week, maybe at the beach or in a garden setting. Back to reality. I am here in the hospital setting and it’s not so bad or as scary as I once thought. I’m just used to it now and I really feel for the old me – so scared, physically and emotionally drained, sitting down in the chemo chair for the first time and sobbing uncontrollably with my whole body. Then cracking jokes with the nurses and laughing off the situation, starting the building blocks of my tough outer layer. The fear and anxiety has subsided with each visit and I even looked at the needle sticking out of my portacath that’s in my right breast today. By the end of all this I’ll watch the needle go in and come out. Still working up to that though. I always look away when a needle is put in my arm and I think watching one go into my breast would be difficult to stomach. I will look one day though but maybe the last one in January 2014. Anyway, I feel I’ve come a long way in such a short time. I’m a new woman in a way, new hair growth, new attitude towards life, new breasts soon enough, new friends made along the way, new experiences both good and bad make me the person I am today.
The girls have both been sick with colds this last week. It’s interesting watching their different personalities when they’re sick. Rosie handles being sick quite well. Takes her medicine and is still quite active and chirpy without complaining too much. Polly doesn’t like taking medicine, having her nose wiped, sleeping, being awake, being cuddled, being put on the ground, being left alone, she’s just a cranky little munchkin. Rosie is enjoying being a big girl and is no longer sleeping during the day at home. She’ll lie in bed and read books instead of sleeping. If she does have a sleep during the day it takes a lot longer for her to fall asleep that night so we’ve decided she no longer really needs it. Polly is still having 2-3 sleeps a day. Rosie’s reward chat is going well and her behavour is much more manageable then it was last year. I think she’s matured a lot in the last year and certainly understands now when her behaviour is unacceptable. The thinking chair still gets a good workout some days. Watching her and Polly play together and love each other is very sweet and a favourite part of my day when these moments occur. Polly is a cheeky cherub and loves to laugh and giggle, especially with Rosie. Her favourite position at the moment is standing up next to the lounge (having pulled herself up) and wiggling along from one end to the other trying her best to grab remotes, phones or the iPad/computer, anything off limits really. She’ll test out crawling on hands and knees for a bit before flopping back down on her tummy and scooting along like someone doing the caterpillar dance. She’s finally sprouted teeth, two on the bottom. She’s such a joy to have around (except when she’s sick!) Rosie loves learning. Whether it’s tracing over numbers and letters, playing Os and Xs, doing mazes in her puzzle books, typing her name on the computer and sending emails to loved ones or reading me a book (sometimes word for word, what memories young children have!), she’s always on the go, never quiet and coming out with funny comments day after day. Having a 3 year old in the house is never boring and sometimes I feel like I’ll explode if I hear “Mummy, Mummy, Mummy, watch me”, one. more. time. But I love her extra tight hugs and the way she seems to know I’m going through something super tough and will give me a pat on the back to comfort me just at the right time. I’ll take all the cuddles I can get because Polly isn’t much of a cuddler, but then neither was Rosie when she was little and she loves a good huggle now.
So that’s it really. I’ll get this up before another week goes by. Only two chemos to go, yay! Super excited to have a break from it all and to celebrate with my end of chemo party and Polly’s first birthday party. For those friends and family in Brisbane or those who are keen to travel, we’ll be having a party at home on Saturday 12 April. We’re thinking mid afternoon for an early dinner but I’ll send out invites and details soon. Just save the date in the meantime.
One more thing, I’d just like to send out a big public thank you to my amazing husband who has been so supportive, always there with a shoulder to cry on or to listen to my hopes and fears. He more than pulls his weight around the house and spends plenty of quality time with Rosie and Polly. Derek, I love you.
I came across this video and app last week and friends have also been drooling over them both on Facebook.
It’s called Your Man Reminder and it’s a video about a smart phone app to remind you to check you breasts and how to go about it.
It’s definitely targeted towards women and has a bit of sexiness and humour, which I think is a great way to get the message across with this serious subject matter.
So go on, watch the video, download the app, give yourself some TLC and have a bit of a giggle while doing something that could potentially save lives. And after touching yourself don’t forget to send a Man-O-Gram to the lovely ladies in your life so they can also touch themselves 🙂
Men, please also watch and help your ladies check their breasts with this very important medical check up that should be done on a regular basis.
Hope these links work!
Watch Your Man Reminder video
Thursday, 24 January 2013: I’m 3 weeks into my new treatment plan. I’ve now had 3 rounds of the new chemo, Taxol, and also 1 round of Herceptin and the trial drug or placebo. The weekly Taxol chemo is definitely much easier to handle than the 3 weekly AC chemo. I feel much more like myself. There are definitely still side effects and some may not even present themselves until down the track a bit more. I have to watch out for pins and needles in my hands and feet – it’s called Neuropathy. I was just speaking with a lady beside me who is going through cancer for a second time. She had Taxol 6 years ago and still has pins and needles in her feet. You may not want to hear about some of my symptoms but if I’m to be totally honest on this blog then I’ve got to at least make some mention of what’s been bothering me the most since my first round of Taxol. My main complaint is diarrhea. Yukky I know, hope you’re not eating whilst reading this! After the first round I thought it was a stomach bug and treated it as such – tried to starve it out by avoiding everything except dry carbs. But when I started eating normally again it was still there so had a chat with Dr N and apparently it can be classic Taxol. So, after having the symptoms again after my second round she reduced my dose for the third round. Fingers crossed those symptoms clear up and I feel safe to leave the house without worrying about toilet issues and if in fact there is a toilet where I’m going!
So my bloods are good again. Still in the range of proceeding with the chemo although some are noted as being on the low side. The one that’s a bit low at the moment are the Haemoglobins. These carry oxygen around our bodies and if mine are 100 or lower (115-165 is normal range) then it’ll be a blood transfusion for me. I’m siting at 109 at the moment, down from 114 the week before and 117 the week before that. When I started they were at 127. If my Haemoglobes get to less than 100, no doubt I’ll feel it as it can make you feel really lethargic and tired. The blood transfusion would give me a real boost and lots more energy apparently. A couple of older ladies are getting blood transfusions today after their chemo. Fingers crossed it doesn’t come to that for me. The thought of it makes me feel a bit icky. It does look like I’m heading that way though.
Sunday, 27 January 2013: Apart from having chemo on Thursday, I actually had a nice day. I dropped Rosie to daycare in the morning, went to a cafe in Toowong for a cuppa and read until it was time to go to the hospital for my treatment, visit to hospital was uneventful: I just read, listened to music and did some of my blog, then I went to Toowong for some retail therapy before collecting Rosie again, home then acupuncture. A pretty busy day. On the afternoon/evening of treatment days on the AC I would be okay for the first hour or two then quickly go downhill needing my bed and a rest. I would feel very foggy and vague with a migraine coming on. On the Taxol I feel almost normal. The difference is amazing and I’m very thankful that the hard chemo is over and done with.
In my last post I was complaining about my own failings and how there’s so much I’d like to do to help myself in healing and feeling well but how I often feel overwhelmed by it all. I’ve taken the first step and have just started adding a small task each day and focusing on that. I’m taking the vitamins that will help regenerate the good cells that are currently being destroyed by the chemo. I’ve also started my lymphodemia exercises again. After starting pilates under the guidance of a physio last week I’ve started developing cording under my arm again so I need to get on top of this before I continue with the pilates I think. I don’t want to make it worse by doing too much too soon. Another thing I need to start focusing on is meditation. I’m starting a mindfullness and meditation course being run by the Cancer Council Queensland in February (did I mention that previously?). They ask that attendees commit to 40 minutes a day, 6 days a week. It’s good to do it at the same time each day so the only time I can see myself having the time, peace and quiet to do this consistently is in the evenings after the girls have gone to bed. I’ve started with 10 minutes just before bed so will have to work at extending this. I’m looking forward to starting this mindfulness course and meeting other people in a similar situation to me. A good habit can be so hard to create, a bad one so tough to break.
Back in September before we’d even left Yeppoon, Cancer Council Australia got in touch with me to see if I’d be interested in putting my story up on their website and being a media volunteer/Pink Ribbon spokesperson. They’d asked on their Facebook page if anyone blogged about their cancer journey, I responded that I did and they got in touch from there. I’ve recently submitted my story to them and will be chatting to two of their staff this week. I’m really happy I can share my story and hopefully help others who are newly diagnosed and in the midst of possibly the most anxious and scary moments of their lives. In regards to being a media volunteer, the thought of doing any public speaking about anything at all makes me shake in my boots but it’s a fear I should probably face and what a great cause to do it for. I’ll be really proud of myself if I’m able to overcome my fear of public speaking.
We’ve booked ourselves a family mini break to Noosa in February which I’m really looking forward to. It’s the weekend before my birthday so we may even get a babysitter while we’re there and go out for dinner. We’re staying at the Break Free French Quarter on Hastings Street. When we bought a new freezer last year we were given holiday vouchers to use so we’ve cashed some of them in for our mini break which has halved the price. Derek and I may also go and stay in the city for a night to use some more of the vouchers and have some quality time together. They run out on 31 March 2013 so we don’t have a lot of time to use them. It would be great to see a show while we’re in there and again go out for dinner. We were regulars at eating out pre-kids and it’s something I miss a lot since having the girls. My birthday is on a Tuesday this year (19 Feb) and I’m just glad it’s not on a Thursday which is my treatment day. Renae B and I are going to Norah Jones on my birthday and hopefully out for dinner beforehand. Me and dinner, I’m a bit obsessed about going out for dinner aren’t I?! Obviously I don’t get out much.
Thursday 31 January 2013: The weather we’ve had in Queensland (and over the border in NSW) over the last week has been wild. The wind at our house in Brisbane lasted for over 14 hours. I think wild wind could be used as a form of torture, it could make you go a bit batty after a while. Following the wind came the peace and quiet you can only get from having no power (for 3 days). No fridge or freezer humming, no TV, no microwave, no computers or fans or aircon. We did have a radio with batteries to keep us updated as to what was going on around Brisbane and elsewhere in the state but when that was turned off, the peace and quiet was actually welcomed (when the girls were quiet also). Having no power certainly makes everything just that bit harder. Boiling water for tea, coffee and Polly’s bottles plus for washing up as we wanted to keep the hot water in the hot water system for bathing. Lucky for a full gas bottle on the BBQ and Derek’s initiative in the kitchen, we ate very well while the power was out. We had a good clean out of the fridge and freezer and fortunately didn’t lose much. It was a relief when the power came back on and I really feel for people in flooded areas who will be without power for weeks or without anywhere to live for that matter. Good luck to everyone in Rockhampton with the peak of the river still to come.
So I’m back again having my weekly chemo but this week it’s the long one again with Herceptin and the trial drug/placebo added in. I’ve been here since 10am and will be finished by 5pm so another long day. I’m here by myself again, just chilling, reading, doing online grocery shopping, having a snooze, eating. It’s nice quiet time and also I do a bit of people watching which is always enjoyable for some reason. I wouldn’t call myself a sticky beak but it’s interesting watching the nurses attending to other patients and seeing who the other patients are. They’re mainly old and I do feel a bit out of place in that regard. There are a lot of young nurses which balances it all out 🙂 I haven’t met a grumpy oncology nurse yet, they probably don’t allow them through to work with cancer patients. The nurse I have today is particularly bubbly. My Haemoglobins are not surprisingly lower again – 104 this week. Getting mighty close to that 100 mark where a blood transfusion may be required. The nurses said that it will also depend on my symptoms and how bad they are, not just the blood count. That’s a relief. One of the nurses also said that the haemoglobins have a 128 day cycle so they may start going up again soon, fingers crossed. On the upside, my platelets (for clotting) and neutrophils (for fighting infection) are both looking good at the moment. A nurse mentioned last week that people with cancer can’t actually give blood or donate organs. I’ve never given blood because I’ve always been underweight and had been told by a friend that I wouldn’t be eligible because of that. I’ve just looked on the Red Cross website and it says people 45kg or under can’t give blood. I am over that, even now (I have lost a couple of kgs since starting treatment). I’ve also read that cancer patients can’t give blood until the five year clear mark. Nor will they accept blood from someone who’s had a transfusion within the last 12 months, unless it’s that persons own blood. And while I’m on that subject, I’m a bit surprised that it wasn’t suggested to me before starting treatment to have some blood taken and stored in case I needed to have a transfusion. Not sure if this is even possible but if it’s not, it should be available as an option for people about to start cancer treatment (in my opinion). And if it is available, then someone within my medical team should have mentioned it to me at some stage. Too late now but something someone else might find helpful. I am an organ donor and proud of the fact so this is something I need to look into a bit further.
Acupuncture later today which is always relaxing. My acupuncturist is also a naturopath and has recommended some dried herbs to help with different symptoms. For instance, passionflower is a sedative (much like camomile) and after I have a cup of tea in the evenings, I feel myself relaxing and getting ready for bed. If I ignore that feeling and stay up that’s not helping but if I go to bed early soon after having a cup I find I can get to sleep easier than normal. She’s also given me some moxa to take home and do on myself. It’s a black herbal stick that you burn and put over the pressure points on your body. There are lots of other natural medications and remedies she’d love to try but the clinical trial team are particularly strict on things, especially remedies classed as herbal and they have no knowledge about. It’s disappointing as it would be great to try some different things to help with my symptoms and boost my immunity but I can understand why they don’t want anything messing with the research data. Anyway, M, my acupuncturist is also a great listener and I always feel better physically and emotionally after seeing her (every Thursday afternoon).
Mum is here at the moment and Sue went home a couple of weeks ago. I’m sure I’ve said this before but I’ll say it again, it’s so great the level of support we’re getting from our families. They’re putting their lives on hold in a way to help us get through this rough patch. We’re wearing them out but they solider on and just get on with it. I know they love being able to help, especially with the girls. Having them here to help makes my life much less stressful which is really what I need at the moment. As little stress as possible.
Polly is as gorgeous as ever. She’s becoming quite demanding though and doesn’t like to be left alone. She’s also getting a bit of Mummy separation anxiety. Still no teeth, although she did pull herself up on the lounge yesterday all on her own. So clever! She’s a joy and her and Rosie get on really well most of the time. Polly can be quite rough and Rosie just lets her. When Polly grabs a handful of your hair, she doesn’t let go until there’s a clump in her hand (not that I have that problem but watch out for men with chest hair!) Polly has started yelling a lot lately. I know she’s trying to communicate and be heard but all I can picture is Rosie and Polly trying to outdo each other and giving me a massive headache in the process. I can also picture them laying in bed reading together so it won’t be all noise.
Rosie’s behaviour have improved immensely although bedtime is still an issue. The reward chart does work though so I’m hoping with time her behaviour will continue to improve. Rosie is a busy little bee who always likes to be doing something. Derek would love her to be a tennis star so I’ve bought her one of those ball on a stick games to play in the back yard, get her coordination going first. Uncle Brian and Aunty Deb gave us their old piano so that’s sitting there now waiting for me to teach myself a little before passing on my new learned skill to Rosie. I’m going to teach myself the basics via You Tube. I’ve always wanted to learn piano so it’s the perfect opportunity. Rosie is very keen to learn a musical instrument. She tells me when she turns 4 she’d like drums, guitar, piano. Piano – tick. Drums – not a chance. Guitar – banjo or ukulele maybe? She’s also showing an interest in ballet. She even puts her leg up on the wall to do warm ups. I’m thinking of getting her into some kind of dance class. She tells me she’s missing Group 8 at Montessori and when I asked her what she missed about Group 8 (she’s now in Group 4), she said the dancing. I think she’s going to be a very active girl.
Sunday 3 February 2013: Derek and I went out for dinner and a movie on Friday night just gone, thanks to my Mum for babysitting. Derek started soccer training last week, he’s keen to be fit and healthy in 2013. He’s even going to do Tough Mudder on the Sunny Coast in August I think it is. I’ve noticed a few of you are doing it, you’re all crazy! Good luck 🙂
I’ve felt pretty tired all weekend with lots of headaches so have just laid low, not getting up to much at all, which is just what I needed as I have a big week coming up with quite a few appointments and meetings to go to. I’m going to an allergy clinic on Tuesday to do a skin prick test for my egg allergy. I want to find out more about the protein I’m allergic to in the egg white and am really hoping it’s something that will go away with time. I’ve heard that can happen and am dreaming of eating eggs again soon. I’m going to the Younger Women’s Group meeting on Tuesday night at Choices at the Wesley. I’m really looking forward to connecting with some other younger women with cancer. I’m going to my pilates physio weekly, she adjusts my exercises as needed to allow for any problems with cording or whatever is happening at the time. Last week I had a few back issues as well. She did some therapy then we got into some very light but targeted exercises.
After having the trio of drugs on Thursday I felt pretty bad on Thursday afternoon and Friday. This hasn’t happened since being on the AC chemo. I even had a terrible headache on Thursday night and my skin was a shade of yellow, which is what would happen on the AC. It was quite a long day – 9:40am to 5:00pm. The trio days are always going to be long so I’ll just need to be prepared each time with lots of food and my phone charger 🙂
My hair has started growing back. It’s really soft and downy, almost like babies hair. I was going to shave it with a razor again but have decided to leave it as it all seems to be growth and no loss at the moment. One of the nurses said that our hair has a 21 day cycle and also the chemo is a lower dose so maybe that has something to do with it. Anyway, it will be some time before it’s back to what I would consider a normal hairstyle but it’s something to look forward to.
Up until now I think I’ve been extremely good at taking this all just one step at a time. Lately I’ve started looking ahead a little further and what I see in the future is starting to freak me out. I’ve made my first appointment in regards to my radiation treatment. This is a pre-treatment appointment to go through everything with the Radiation Oncologist on 14 February. Treatment itself should start in April at some stage. I’ve said previously it will be 5 days a week for 6 weeks. I was quite concerned about not being able to have close contact with the girls during this time due to the high doses of radiation being targeted at my body but after hearing from my friend who’s just started radiation, she’s been told she can kiss and cuddle her daughter and I am so relieved. Not being able to kiss and cuddle the girls for 6 weeks would have been near impossible and I would have been a mess. It would have been torture. I’ve also started thinking about the hormone therapy which will start after chemo finishes. It’s been mentioned briefly by Dr N, my oncologist, on a couple of occasions (when I’ve spoken about my stubborn ovaries) and she just says that’s a conversation for another day. I’m going to bring it up with her again soon to clear my mind a bit. It keeps hanging around in there and the main reason is because I can’t let go of the thought of having another baby, not just yet. It is something I need to discuss with my doctors in more detail before I can start to deal with it in any other way. What I mean is I can’t yet come to terms with the idea of not having any more kids until I’ve done some more research into potentially having another baby after my hormone therapy has finished, if my body is able to at that point. What a miracle it would be to have a baby at the end of this nightmare. Don’t worry, I’m not deluded and am very aware that the chances of it happening are potentially slim. But the choice needs to be mine and Derek’s, not because the Dr just says so. I need to know the whys and why nots before this part of the story is over.
Menopause has also been on my mind of late. More discussions to be had with my doctors but I know the symptoms of menopause and I’m not looking forward to them at all. In fact, dreading them. More than I was dreading the symptoms of chemo. Think about it, chemo goes for 6 months, menopause will likely go for 5 years while I’m on the hormone therapy then I could be lucky enough for my ovarian function to return to somewhat of a normal state once I finish the hormone therapy (yay, periods! which could possibly mean baby but not necessarily so), then BAM, 10 years later I could go through it all again! Derek said, at least you’ll know what to expect second time round. Not something a husband should say to someone about to go through menopause at the tender soon to be age of 35. What about the permanent aging it will do to my bones and body? I. Need. To. Pull. My. Head. In. Really, I do. These are discussions I haven’t even had with my doctors yet and maybe menopause won’t even be that bad for me… So, need to continue on with the attitude I’ve established over the last few months. One. Step. At. A. Time. Don’t think too far into the future and just take it a day at a time. I will drive myself a bit batty otherwise 🙂 So, note to self, talk to doctors first, then drive myself batty once I have all the information.
Just to finish on something a bit more positive, I’m doing a reward chart for myself (along with one for Rosie) on my iPad. I get stars for doing things I need to to keep myself feeling good and as healthy as possible at this time. Then once the stars add up I get rewards, yay! Such as buying tea (I have a tea obsession as well as a going out for dinner obsession), Kindle books, going to the movies alone, retail therapy and beauty therapy. I’m also saving up stars to go on a weekend meditation retreat. There’s even a silent one up the Sunshine Coast – that would be glorious! No talking! For a whole weekend! Sounds pretty good to me, something to work towards…
Here are some recent photos of the girls, who love talking and making noise 🙂
Our cheeky girl, Rosie Posie. Can’t believe she’s 4 this year!
It’s all about the food with Pretty Polly.
I can’t believe it’s been two months since my last post. Especially since it’s something I know I get a lot out of and I feel such a weight lifted once I finish one and send it off out into the abyss that is the internet, to pop up onto screens of smart phones, iPads and computers that belong to my family, friends and sometimes even strangers. There are lots of things I know I should be doing for my own sake but since before Christmas I’m having a hard time just getting off my backside and doing them. I really need to give myself a major kick up the bum and just do them. Maybe airing them to everyone will help. I’m not doing much exercise, I’ve stopped eating as well as I could be, I’m not taking the extra vitamins to help me fight off illness as often as I should be, I’m not meditating as often as I’d like to, I’m not doing my lymphodemia exercises as often as I should be, I’m not making connections with people in a similar situation to me, I’m not being very nice to my husband – all things I want to be doing but just not doing for some reason. What’s holding me back? I’m exhausted, that’s a pretty good excuse, isn’t it?! I know if I just did half of these things I probably wouldn’t feel so tired. I’m sick with a cold I just can’t shake. I know if I was just doing half these things over the Christmas break I could have kicked this cold in the backside. Oh well, no use dwelling on things I can’t change. Now I just need to start, maybe I should focus on one thing at a time instead of looking at all the things I need to do and feeling so overwhelmed and tired again. Maybe I’ll just lie down and have a rest instead… It’s tiring trying to do all the right things all the time and much easier to not do them at all. In the end I do what needs to be done. I spend time with the girls, I fulfill their basic needs of love and attention, eating, sleeping, toileting, I fulfill my own basic needs and then there’s often not a lot of time left for anything else, even with help from Derek, Mum and Sue. Can anyone help me with this battle that wages within me on a daily basis? I’d love someone to do for me what we as parents do for the girls. Eat this, now wear this, now do this for your own good, now do that for your own good, go to sleep now so you have lots of energy tomorrow, take this medicine so you feel better, blah blah blah blah blah. If only. I look at Polly and think how great it would be, at this point in my life, to be like a baby having someone do everything for me that needs to be done. My life would be so much easier! Of course I still want to be able to walk and talk but someone to look after my routine for me and fulfill my needs so I don’t have to even think about it. If only I was a celebrity or rich, I could pay someone to fill this role in my life. Okay, I’ve taken it a step too far now I think. Retract… Hopefully writing this and getting it off my chest will help me do what is only going to help me. I’m going to start with taking those vitamins tonight and meditating in the morning. Surely I can do those two things.
Anyway, I’ve written this post in dribs and drabs, starting back at my last treatment just before Christmas.
Written on 20 December 2012: Today is my 4th round of chemo. I’m sitting here at the moment waiting for my pre-meds (anti-nausea) to take their toll before they start with the chemo. I’m listening to Angus & Julia Stone, nibbling on almonds, pepita and sunflower seeds and sultanas while trying to drink 3 litres of water (throughout the day) to help keep my kidneys well. I’m in pain because my ovaries are still working and doing their monthly thing. The chemo often makes women menopausal but that’s not an issue for me yet, which is good and bad. I’d love them to keep working for another 15 years but I know it’s inevitible that they’ll be laid to rest sooner rather than later, maybe even whipped out. Dr N said again today that ideally they’d like me to be menopausal but that’s a discussion for another day once chemo has finished and the next lot of targeted treatment starts. Anyway, they’re being a bit stubborn or maybe they’re in denial…
So the chemo has started. First the red stuff (the technical term for Adriamycin) was pushed through a syringe by the oncology nurse and now the kidney killer/migraine madness (technical terms for Cytoxan) is being dripped through into my portacath. I’ve enjoyed a lovely mixture of sandwiches and cheese and crackers. I really should make myself a gourmet wrap or sandwich to eat rather than the hospital food. At least it would be something to look forward to. I’ll aim to do that next time. To be honest though, food isn’t really the first thing on my mind on the morning of chemo when the butterflies make themselves known once again. They take over the recesses of my stomach and don’t allow hunger to pop up on the radar until I’ve left the house and I decide I am actually hungry and the snacks in my bag aren’t going to suffice.
The last couple of days were extremely draining and this morning I felt the worst I’ve felt emotionally in some time. It’s all catching up with me I’m afraid. But this to shall pass. I’m just having one of those weeks where it’s all compounding on top of me. I know it will lift up and dissipate into the atmosphere soon enough. I’ve just got to ride this wave until I reach the beach and can enjoy the sunshine again. Mum went home last week, the house is definitely a lot dirtier and untidy without her there 😉 It’s nice to have some family time but also hard to tend to all the girls needs on my own during the day when feeling so exhausted. It means that my own needs (eating when hungry, resting, quiet time etc) are pushed aside to make sure the girls are having their needs (and Rosie’s wants – I want this, I want that) fulfilled. Derek was away Tuesday night so it was the three of us Tuesday, Tuesday night and Wednesday. On the upside our new car (Toyota Camry in Reef Blue) was delivered on Tuesday afternoon. The girls and I had just been for a swim to cool down. Polly wouldn’t sleep and Rosie and I were hot and bothered after having power tussels all day long. I always win so I really wish she’d save us both the tears, tantrums and trouble and just do as I ask straight up. Anyway, after the swim the girls were going to have an early bath. The car turned up right at that time so I was signing all the paperwork for the car with wet towels, togs and a dirty swimming nappy on the floor plus two nude little girls needing attention. Rosie put herself in the bath and I juggled Polly while we did the handover for the car. I wonder in amazement how I get through some days. Wednesday was a much better day.
I’m not the only unwell Hower in the family – our cat, Maui, has been visiting the vet lately and has just been diagnosed with an overactive thyroid. She was looking quite scrawny (but still with a big appetite) so off to the vet we went and after two blood tests, which were 4 times more expensive than the ones I have to get, we’ve got a diagnosis and will have to start giving her a tablet daily. Bags not doing that job!
Chemo has finished and I’m just getting a flush with saline so I’ll be good to go soon. I’m not looking forward to the inevitable headache later today. It’s a killer normally. I’m not prone to headaches normally but the headache I get on the afternoon of day 1 borders on a migraine. I take a couple of panadol, lie down and try to rest it out. I wake up on the Friday feeling much better thankfully.
Written Tuesday, 9 January 2013: It’s the day before my next treatment. We had a very busy festive season for someone who should probably be resting but I couldn’t resist the steady flow of visitors and fun to be had. There’s still a party girl in there somewhere. Before Christmas we had Derek’s work Christmas party at Rydges in Southbank and then we went to Seaworld as a social event for his work (but didn’t actually see anyone from his work which isn’t very social at all). We had a lovely day and upgraded to VIP passes so we can now go to Seaworld, Wet n Wild and Movie World as often as we’d like until 30 June 2013. We went to Wet n Wild after Christmas which was a massive fail due to huge lines, massive crowds, not enough shade near pool areas and a big thunder storm which shut the rides down for a good part of the afternoon and scared the living daylights out of Rosie. Derek also took Rosie to Movie World last week and they had a good morning. We’ve had friends visit, family stay over Christmas and Rosie to entertain. I’ve taken myself off to the movies a couple of times alone, which I absolutely love to do. A meal and a book afterwards is an extra special treat. I also took Rosie to her first movie last week (Madagascar 3) and even though she insisted on wearing her ear muffs for half of it, she really enjoyed it and asked to go again the next day. I managed to get to the shops a few times before Christmas and chemo on 20 Dec to do our Christmas shopping. I’m always happy to get out of the house when I’m feeling good so I make the most of these good days by doing things like Christmas shopping and even grocery shopping sometimes rather than rely on internet grocery shopping. These small outings are very draining for me though, even on my good days. Seaworld had me exhausted for days to follow.
I think my last post was just before the 2nd round of chemo. Wow, I don’t even know where to start in regards to my treatment. Okay, I’ll start with something my oncologist said to me during my last chemo on 20 Dec. The hard part is over. Thank goodness for that! Dr N says the AC is normally much harder to handle than the next lot of chemo which I start tomorrow. I had 4 rounds of the AC all up and my blood counts have been good up to this point so no delays in treatment at all. Each round had it’s ups and downs. The first was by far the worst, most likely due to my extremely fragile state both physically and emotionally. The second was hard to handle due to one of my anti nausea meds called Dexamethasone. I was so jittery and shaky that for the third and forth rounds Dr N and I played around with the dose a bit to reduce this but still help with the nausea. I think we got it just right in the end but thankfully I won’t need it going forward. I also had my first visit from mouth ulcers and oral thrush – lovely, just when I’m starting to feel better and want to eat food again. Not that I don’t eat food after treatment. The Dexamethasone increases appetite so I’m constantly hungry but often don’t feel like eating anything in particular. A bit like being pregnant. Eating helps me feel better so that’s what I do, eat. Pretty normal for me really but very annoying looking from the cupboard to the fridge and freezer, back to the cupboard throwing my hands in the air, clutching my stomach in hunger, wondering what to eat to feed the urges. The third round was when we had those really hot days in Brisbane and my nausea picked up on days 4 and 5 which threw me a bit. I think we reduced the Dex too much initially. Oral thrush again. Power tussles with Rosie on a hot day ended with us having a cold bath together to talk through our issues. Round four was 20 Dec and I’ve talked about the lead up above. Looking back it was probably a good thing Christmas was after this as I don’t seem to remember the effects as much as I do the previous rounds. I do remember feeling off and very tired but the good memories are pushing out the bad ones. After each round and the “bad” period of about a week, then the oral thrush and mouth ulcers for a few days following the “bad” period I would start to feel like myself again. The only side effect that is always there is fatigue in varying levels. Oh and hair loss of course. My brother Ash shaved it with a razor for me after Christmas and it felt sooooo good! I need it done again as I’m starting to stick to my pillow which is more annoying than you can imagine. Lucky for my light weigt sleep turban, although a totally bald head is much better. I’ll get Derek to shave it on the weekend for me. Swimming in the pool with a bald head feels amazing. As much as I love my bald head, I hate the fact that my eyebrows and lashing are falling out. I’ve come to terms with it and it’s not upsetting me as much as I thought it would but I look weird and not like myself. It’s funny, I don’t feel the hair on my head defined me in any way but I do feel that my eyebrows and lashes define my face in a certain way. It’s hard to explain but looking at myself with no hair, I still looked like me but looking at myself with less brows and lashes than I normally have and I just don’t look like me anymore. Add the very tired eyes plus lines and redness on my forehead and I feel like I’ve aged about 10 years in 3 months. I just hope my brows and lashes don’t disappear completely. That will be much harder to deal with. Or maybe I’ll surprise myself again…
Anyway, for the two “good” weeks following the one “bad” week I’d ease myself back into the outside world slowly at first and then sometimes doing a bit more than I probably should have. I’d exert myself a bit too much one day and pay for it the next. Like I said, ups and downs. I felt I could put up with the bad week to have those two goods weeks though. I’m a bit worried about the next lot of treatment as it’s weekly for 12 weeks. Although the chemo, Taxol, is given at a lower dose than the AC, I still hope for good days mixed in with the bad, rather than bad days and then feeling average for 12 weeks. I think I’d rather the ups and downs rather than feeling average for so long. Dr N tells me that a lot of women breeze through the Taxol after doing the AC and apart from fatigue, don’t get a lot of side effects, particularly nausea. Here’s hoping. Along with the Taxol, I’ll also be starting on the Herceptin and either the trial drug, Pertuzamab or the placebo tomorrow. So the chemo drug, Taxol, is given every week for 12 weeks and the Herceptin and trial drug will be given every 3 weeks for 12 months. The side effects of the Herceptin and trial drug should be a lot easier to manage than any chemo drugs given so even though a year is a long time, they shouldn’t knock me around like the AC has. My hair should also start growing back once the Taxol has finished at the end of March. But then I’ll have something else to keep me occupied, radiation, which I’m not thinking about much at this point. I’ll meet the Radiation Oncologist in February and I’m sure I’ll find out more about it then. At this stage I think it’s going to be 5 days a week for 6 weeks.
Tomorrow is a long day. I’ll have to be at hospital for about 5 hours as they access my port, take blood, send it off to Sullivan Nicholaides for testing, wait for a good outcome on my blood counts then from there I’m not sure of the exact schedule. Will they give me anti nausea meds via my port? I think it goes Taxol, Herceptin, trial drug. I suppose I’ll find out soon enough. I’ve just finished the third Hunger Games so will have to start a new book on my Kindle to keep me occupied for that long. I’m feeling sad to have finished The Hunger Games trilogy, I grew attached to the characters. Looking forward to the movies now.
Wednesday, 9 January 2013: So here I am again, back at the Wesley with a needle sticking out of my chest. It’s all good though, I’d rather a portacath than having to find a vein in my one good arm each time. Accessing my port is nice and quick, even if it does hurt sometimes the pain is brief and over with before I know it. I hear of people with disappearing veins in the arm and having to try a number of times before the nurse finally gets one. Very traumatic. We’ve come well prepared for our long day with reading materials, laptop, food and of course a positive attitude. I have been feeling quite run down and very fatigued lately but I took a sleeping tablet last night and have woken feeling much better today. Still tired but not as desperately tired as I have been. The drugs have finally started after a long delay this morning, a hold up with pharmacy for some reason. Anyway it looks like we could be here for longer than 5 hours. At least I have a nice spot with a window behind me so I can see daylight.
Blood counts are good enough to go ahead but my neutrophils are low – 1.26 when normal range is between 1.5-8.0. These help fight infection so I’ll have to be careful with germs and illness and make sure I keep taking my temperature. If 38 or over, straight to hospital. Antiseptic handgel makes me gag though as it smells like the antiseptic stuff they use when accessing my port and each time they attach some new drug. It’s so strong and I know that whenever I smell such strong antiseptic in the future I’ll be reminded on having chemo.
So that brings me up to date really. I look back over the last couple of months and am really surprised I’m still in such good shape both physically and emotionally. A good sense of humour and positive attitude has certainly gone a long way I feel. Don’t get me wrong, there are times when I feel sorry for myself and just want to sleep for a long time but I do have so much to be thankful for, all the people who love and care for me and I love and care for. Taking one day at a time sounds like a cliche but it really works and I’m not even having to work at it. This is something that’s coming nautrally without me even trying. I focus on the present and immediate future, what’s for dinner, what’s happening tomorrow but that’s often as far ahead as I look. I don’t stress about things as much as I used to. What is, is. If it’s something I can’t change then I try not to worry about it. I just have to let this next year run it’s course and really squeeze everything I can from the good times. I don’t watch as much TV as I used to. I’m enjoying reading books again. I have acupuncture weekly. I’m starting a weekly mindfulness and meditation course with the Cancer Council on 8 February (every Friday for 8 weeks so if Mum or Sue aren’t here I’ll be in need of a babysitter for Polly if anyone can help out there). I’d like to get to the movies at least once a month (Derek and I will go out for dinner and see The Hobbit to celebrate our 5 year anniversary on 29 Dec once I’ve caught up on some sleep. We both totally forgot about it, Sue, Derek’s mum reminded us – oops!). I’m going to join a young woman’s cancer support group. I’d love to get in touch with other Brisbane mum’s with young children who are also going through their own cancer journey or have recently. I feel this kind of support is what I’m needing most at this time so need to get in touch with some of my contacts about this.
Rosie has been very testing and trying for months now but I’ve seen a real improvement recently. She’s responding very well to her reward sticker chart. She’s also responding well to having little dates alone with Derek and I, separately. She started back at daycare on Monday in a new group with new teachers. This threw her a little so she was upset when I left her (which upset me terribly) but she ended up having a great day and I think she’ll be fine on Thursday. Rosie literally doesn’t stop talking or singing unless she’s swimming underwater or sleeping. The pool is a big hit and I’m so glad we have it. I don’t swim everyday but Derek and Rosie do. As soon as Derek gets home from work they jump in the pool before bathtime. Her new swimming teacher has done a fabulous job in increasing her confidence and skills. That’s Derek of course. She certainly looks the part in goggles and cap. It’s great hearing her laughs and squeals coming from the pool.
Polly is a funny little girl. She’s started crawling but not in anyway I’ve seen before. Rosie was a commando crawler but this is different as she pulls herself along in one movement. One arm is bent so she uses her forearm to pull forward while the other hand is flat on the ground pushing upwards and forewards, used as a guide to get her where she wants to go. Her feet help propel her forward. She makes a funny noise whilst doing it. She’s certainly found her voice of late as she loves screaming to demand attention. And I love the fact that her first sounds are Mumma. She’s still very cheeky and smiley and such as easy baby to look after. I said recently that because 2012 is when Polly was born it will always be a good year for me, in spite of getting cancer. And when I think about it really one wouldn’t have happened without the other. On that note I’d go as far to say that I would welcome the cancer with open arms just to have Polly in my life. Because if not having cancer meant not having Polly, well I can’t even put into words how terrible that would be. Just unimaginable. So here we are, our little family of four, going through a rough patch and I wouldn’t have it any other way.
Here’s some recent pics:
Me having chemo last round
The girls on Christmas morning
Polly and her Mummy’s Wish teddy bear
So it’s been nearly three weeks since my first round of chemo and I’m feeling pretty good at the moment. Actually I’ve been feeling well for nearly two weeks which is promising going forward. We’re all settled into our new home. It’s very comfortable, breezy, roomy, perfect for our needs – I love it. We live in a good area with plenty of handy things close by. My aunty and uncle live 15 mins away in Sherwood, it’s only 20 mins to the Wesley hospital, 15 mins for Derek to get to work, swimming lessons for Rosie every Sunday at the end of our street, new GP 3 min drive, park, coffee shop, convenience store, dietitian and acupuncturist 5 min walk away and plenty of shops a close drive away.
It was fantastic of Derek’s work to put us up in the unit in Southbank but it wasn’t ideal to go through my first round of chemo staying in such a small, confined place. I’m just glad it was only for 1 week. We moved into our new place the Tuesday following the chemo. Mum and Aunty Deb were here to show the removalists where to put everything and to start unpacking. Aunty Marie came to the unit and helped me with the girls and pack up everything there, then we made our way over to the house in the afternoon. Unpacking was a slow process. Normally I’d be in unpacking as quickly as possible. I couldn’t do that this time round as I just didn’t have the energy but I didn’t let it bother me. I just let it happen around me and when I started feeling better did what I needed to to get settled.
Looking back at the first week after chemo, it was bad while I was in it but not so bad that it makes me feel really anxious about doing it again tomorrow, not yet anyway, that could change come the morning though. I wasn’t in a great frame of mind or in a good place physically before starting chemo. I was stressed out and worn out. It would have been nice to take a little holiday, relax and really store up some energy. I do feel I’m in a much better place now. Having day surgery for my portacath insertion the day before last time wasn’t helpful either. As I said in my last post I was sedated which I amplified by taking more drowsy pain killers during the night. The morning of the chemo I was feeling very fragile both emotionally and physically. I had a good cry when I sat down in the chemo chair and just let it all out. That helped a lot and I pepped up a bit after that (although that could have been some of the drugs too!) I think that was all I needed, a release. So we (Derek and I) sat down with the oncology nurses and had some chemo education. Things like: close the lid when flushing the toilet for 2-3 days afterwards, if I vomit, use gloves and place any soiled items into a garbage bag if not washing straight away, wash any soiled clothes separately to everyone else’s, this is all due to being cytotoxic for a few days afterwards, days 7-14 are when I’m at the highest risk of infection, take temperature two times a day and if it gets to 38 or over get straight to the hospital, rinse my mouth out 4 times a day with warm salty water and brush after eating to avoid mouth ulcers, moisturise regularly, plus lots of other stuff. There was a lot to take in that morning.
We got there at 8:00 and left around 12:30. I was meant to stay the night in hospital but a bed wasn’t available until 3:30 that afternoon. I felt okay so decided to head back to the unit and be with my family rather than in hospital alone for the night. The nurse told me that the side effects are normally worse the days following the chemo, not the day of. Right she was, my worst days were 3 and 4 so the Saturday and Sunday. The nurses were great, friendly, warm and caring. Funny story, my nurse for the day used to live across the road from Derek’s boss. A tea lady came around regularly with drinks and food. Dr N was accessible and answered all of my questions. The actual injection of the drugs only took an hour or so (I think, can’t quite remember now…) There was waiting around at the start. They take my blood first up to check my blood counts, then when they have the bloods back they order the drugs including the chemo from the pharmacy and then we’re good to go. If ever I go and my blood counts aren’t what they’re meant to be then I won’t have chemo on that day, it will be pushed out a week. Fingers crossed this doesn’t happen. So, I was injected with anti-nausea medication prior to the chemo plus some steroids which helps with appetite among other things I’m sure. Apparently women on breast cancer chemo normally don’t need to worry about losing weight, due to the steroids its more commonly an issue of putting on weight. It will be interesting to see what happens to me in that regard. My appetite was shot for about 5 days but came back with a vengeance after that. Actually, I was still hungry the whole time I was nauseated but I was totally off food and didn’t feel like eating a thing. I stuck with small bland meals, eating ice, sipping water and protein fruit smoothies. It was very much like being pregnant for me. And the way I’m looking at it is if I’ve been through two pregnancies where I was nauseous and off my food but still quite hungry for two whole months, each day, every day, all day and especially at night, then surely I can handle a few days here and there over the next six months. Piece of cake! Haha, I say that now, feeling well and healthy and happy. I wonder if I’ll be thinking the same thing come Thursday to Wednesday next week… Maybe they’ll play around with the amount of anti-medication they gave me. I had 4 different types of anti-nausea meds, two that I was told to take and the other two which I was told I could take if I needed to. I took all 4 and still felt nauseous. There was one type that also made me drowsy. I took this a couple of times during the day on Saturday and have decided never to take it during the day again as I do think it made me feel worse. I slept on and off all day that day, waves of nausea coming over me whenever I was awake or even slightly awake and probably in my dreams too. Being cooped up inside the unit didn’t help either. Cooking smells hung around, plus bathrooms smells couldn’t escape (strong smelling cleaning and soap products). If we opened the doors the smell of petrol and the noisy sound of cars came blaring into the unit. I’m sure that being here, in our new home, will be a much easier, stress free experience where I can get fresh air whenever I need it. The lack of fresh air surely wouldn’t have helped last time. I’ll be much more comfortable and happy here.
Anyway, back to my first round of chemo. It’s given as two separate drugs for the first 4 rounds (which are 3 weekly). The first one is bright red and is injected manually by the oncology nurse. She gets suited up in her protective gown and thick blue gloves to protect herself from the drugs in case of spillage. That is scary in itself, the fact that she needs to do this in order to put this stuff inside my body. I tried not to think about that at the time though, it’s counterproductive to my positive attitude! The second drug is in an IV bag connected to my portacath and drips through slowly. It’s clear and much less scary looking, unlike the bright red one. I popped in my headphones and listened to some uplifting music whilst the drugs did their stuff. I’ve made a playlist that I’m going to listen to each time to help pass the time and keep me in the right frame of mind. If anyone has any suggestions of songs I could listen to at this time I’d love to hear them. Just thinking back, the whole thing was a lot less scary than I was expecting. I actually felt quite comfortable there and it was probably down to the nurses, the tea lady bringing me snacks and drinks, the people around me going through a similar experience (which was comforting in a way, although I wouldn’t wish it upon anyone). I’m glad I feel like this because the next time I go it won’t be quite as daunting. The nurse did say that some people do get anticipatory nausea which can come on before they even arrive, or soon after arriving. I really hope this doesn’t happen to me but I’m confident it won’t. Before sitting down and writing this post I hadn’t actually thought much about being there last time or going back this week. I think it’s because I’ve had plenty to keep me occupied in between the feeling unwell and this next round coming up. I’ve actually felt really good, almost normal (my new normal anyway). The left arm and chest wall is still numb and tight plus I still have cording under my arm where the tendons have shortened but all in all, I feel pretty good. I went back to the physio yesterday and she worked her magic on me. I don’t have to go back to her until January now but will attend her cancer rehabilitation exercise classes a few times before the end of the year. I had a terrible head cold which hit me on about day 5, the Monday following the chemo. I suffered with that for nearly a week but once that eased up and the unpacking was done, it was like life had returned with some normalcy (again my new normal). That is, until my hair started falling out…
So, last week my hair started falling out. It wasn’t coming out in clumps, just strands initially but when Polly grabbed a hold and pulled out a heap, I knew it was time to get rid of it. I decided to shave rather than let it fall out with any length to it. I didn’t want to be shedding everywhere and preferred the control of shaving it off rather than letting it thin out and fall out naturally. The big shave happened on Saturday afternoon, after putting it off for a couple of days. Initially because I was a bit overwhelmed by the fact I was about to shave most of my hair off but also because I wanted Derek to do it during the day with the girls there to see, rather than at night and them waking up to a bald Mummy the next day. That could be a bit of a shock for Rosie in particular, even when explained prior to the event. So we set the date as Saturday afternoon and after a couple of wines for dutch courage, got the job underway on the back deck with Rosie running around blowing bubbles and Polly chattering away in her swing. It’s not a clean shave, so super short bits are still falling out. Derek did the final cut on number 3 clippers and I’m wondering whether to go even shorter because my hair is falling out more and more and when I lie on my pillow it feels like the hair is sticking back into my head. Derek the Barber tried out a few hairstyles on the day. The first one was Private Hower, flat top army style. Yuk yuk yuk. Hideous. Then he shaved a mohawk into it for a bit of a laugh. This was a fail as we should have kept the top longer for the mohawk, it was too short and not very effective as far as mohawks go. Shame, I was disappointed as I really wanted to sport a mohawk for a day or so. Finally he did the Nothing Compares, Sinead O’Connor style.
What do you think of my different hairstyles? From punk rocker to flat top to mohawk to Sinead O’Connor. Which is your favourite? Mine is punk rocker. I really liked that hairstyle and may do it again when my hair is growing back. I like the fact that out of this I’ve found another hairstyle I can add to my collection. I do tend to revisit hairstyles that I’ve had in the past, although the mohawk will definitely not be one of them. Derek likes my current look and told me I look like Sigourney Weaver in Aliens or maybe it was Alien, whatever. That’s a compliment coming from my husband, major sci-fi fan, particularly the Alien movies. Even though it feels nice when the breeze touches my head, it’s unlikely I’ll revisit the Sigourney Weaver look again by choice. Rosie enjoys running her fingers over my head but has told me she doesn’t like how it looks. Oh well, can’t please everyone! I don’t think Polly likes it either as she’s got nothing to hold onto when grabbing at my head.
I’m not really too concerned about losing my hair. I feel relieved now that it’s been shaved. And I think I’ll feel even more relieved once it’s all gone, from my head anyway. Once I know something is definitely going to happen, I just want it to happen good or bad. I’m impatient that way! Waking up and finding short hairs all over my pillowcase is more of an annoyance than something that upsets me. Eyebrows and lashes still intact, yay! Underarm hair coming out, yay! Leg hair coming out, yay. Hormonal hair under my chin coming out, yay! Hairy toes still intact, 😦 Wondering if hair on my arms will come out… Stay tuned for that one. It will be great not to have to shave for six months.
I had a fun morning with my friend Jules last Monday. She was kind enough to fly down from Raglan/Rocky to spend the day with me. We went to the Look Good Feel Better workshop. They gave some good make-up tips, including how to draw eyebrows on if the loss of eyebrows does eventuate. I took home a bag of goodies. I also tried on a few wigs. The blue party wig was our fav and I’m considering getting one for a bit of a laugh. We finished with a lovely lunch in Paddington before Jules hightailed it back to the Ranch at Raglan. Mum and I went wig shopping on Saturday to see a wider range and of course I liked the most expensive one – $650! I can’t get a rebate from my health fund so have decided to just scarf it most of the time. It feels so nice to pull the scarf off when I get home from being out that it’s likely I’ll end up going bald also. A wig probably wasn’t a great idea over summer anyway and I just can’t justify $650 on a wig I’ll only wear maybe once a week for approx. 8 months. Some of the styles were quite hideous either too full and boofy or too short and over styled, neither of which suits me and my little head. Nor do I like them, obviously.
I’ve been to see a Dietitian and have been told I need to eat more high calorie food to keep my energy levels up. This means eating foods higher in fats and sugar, which is totally the opposite to what I’d normally eat. I’m a pretty healthy eater and the thought of eating sugary foods often just makes me feel a bit sick. It all sounds a bit strange. Surely I should be eating highly nutritious foods instead of sugary foods. I’m adding Sustagen into smoothies plus eating lots of protein snacks. The dietitian has said I need to build muscle mass like an athlete. Lots of complex carbs and protein. I’ve just bought myself a you beaut high speed blender called a Vitamix. It pulverises fruit and vege. I’m looking forward I giving it a good work out not just for smoothies but healthy dips and lots of other quick and easy yummy food.
I’m booked in to see an acupuncturist on Friday at the same place as the dietitian, both a 5 min walk around the corner which is ideal. I had a lot of acupuncture when pregnant with both girls and always felt much better afterwards so I’m hoping it will help with my nausea and general well being. My Dad bought me a secondhand exercise bike for $20 and its in great condition. I’ve got it set up in the sunroom and jump on once or twice a day and do a few kms. I’ve also been given the all clear from my physio to start swimming again. I just need to take it easy so probably just swimming with my kick board to start with. And only in our pool as I’m not allowed in public pools until after chemo has finished and my immune system has built back up again. Anyway, even though the amount of exercise I’m doing is minimal its better than nothing at all and gives me more energy.
Rosie started at Montessori on Monday, 3 days a week. She had a great first day, fantastic in fact. No tears, happily kissed me goodbye, ate well and even talked to the teachers and her classmates. The first time she went to her old daycare in Yeppoon, it took them days to get her to talk and she didn’t eat on her first day. She’s really come out of her shell since then. One of the teachers today told me that she did the Montessori puzzles with ease and that they’ll need to find some more challenging ones for her. That made me beam with pride. What a smart little chicken we have and even if she’s being really cheeky lately, I love her to bits and can’t wait to see where this next year will take her.
Polly is cheeky too but in a different way. Her personality just oozes cheekiness and I’m grinning sitting here as I type this just thinking about her funny little actions, her gummy grin and cheeky laugh. She’s really using her voice lately. She’s not sitting or crawling or even creeping yet but she is sticking her bum up in the air trying to move forward although she hasn’t quite got there just yet. She is rolling but doesn’t go too far. She’s not one of those babies that roll all over the place to get from here to there. She’s normally a very placid baby and is pretty happy most of the time. Polly is much easier to get a smile out of than Rosie ever was at this age. I think I’m pretty lucky to have such placid babies as they require a lot less energy. Must be Derek’s genes.
Derek is enjoying being close to work and having a pool to jump into when he gets home. He’s going to the cricket on Friday with the boys which I’m sure he’s looking forward to and will enjoy. Derek deserves a break from all us girls, he’s certainly outnumbered here, 6 to 1 including the animals.
David and Sue (Derek’s parents) come down for a visit next Wednesday. Mum goes home for a well deserved break on Wednesday. Mum’s been helping with the girls, virtually doing all of the housework plus washing and helping with the cooking too. It’s been great as I’ve been able to focus on the girls and also myself which isn’t normally possible as a mum of two young children. Thanks Mum 🙂 you’re the greatest! I’m not sure I’d be feeling as good as I do without having such great support from both my family and also Derek’s family plus all my amazing friends.
So that brings me up to date again. I always feel a weight lift off me when I finish a blog post. It just feels good to get it all off my chest so thanks for listening!