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
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