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.