Cancer… what an inconvenience!

This week I’ve had to make some pretty tough decisions, the toughest yet regarding this whole cancer thing. It’s really caused me a great deal of angst but I know the decision I’ve arrived at is the best possible one for my health. It’s a major upheaval, an inconvenience that’s for sure. But then cancer is really one big inconvenience isn’t it?! It’s messed up all of our plans for the immediate future, plus any plans we might have had to extend our family in the future, changing our lives forever. At the outset I thought that there must be some way that this experience will change our lives for the good, there has to be. I’ve got to keep thinking that way to get through it and will hold on tight to all the positives along the way. Maybe life will look brighter on the other side. Good God, it would have to wouldn’t it! I have heard of people having a greater appreciation for life after an experience such as this and I’ve thought to myself, “How could you not?” It makes you look death in the face and wonder who’s going to come out second best. Not me, not any time soon. I’ve also been told that that appreciation fades with time and life gets back to normal again. I’m hoping for all of these things, the brightness, the normal life and everything that goes along with both, even the mundane. I could really use some mundane right about now. I do feel things have changed forever for me, no matter how normal life becomes again.

Oops, gone off track again. You’re probably all wondering what this big decision is and here I am talking about life and death! Well, before I tell you about the big decision I’ll fill you in on what I’m in for over the next 15 months in a bit more detail. My oncologist, who I’ll call N, is another woman to add to my all women medical team. I am so happy about this. Happy? Not sure that’s the right word to use when dealing with an oncologist but I do feel very comforted by the fact that I’m surrounded by a team of very experienced female medical professionals who are very specialised in breast cancer care. I just feel they have a much better understanding of what I’m going through than their male counterparts could ever hope to. They seem more gentle, delicate, caring and accesible. All of these attributes are very important to me at a time like this.

So Derek and I met N twice last week, as I’ve said previously, and we went through the treatment plan she is proposing for me. She said straight up, due to my young age and tumour sizes, she’ll be putting me on the heavy duty treatment plan and it looks something like this:

Chemotherapy – AC every 3 weeks x 4 = 12 weeks

Chemotherapy – Taxol every week x 12 = 12 weeks

Herceptin (HER2 blocker) will also start with the Taxol and is every 3 weeks for 12 months

Radiotherapy starts once the chemotherapy finishes and will go for approximately 6 weeks

Hormone therapy will start once radiotherapy finishes but we haven’t even touched the surface of this as there are many options. I’m not even going to think about it until my chemo is finished.

All of the chemo drugs plus the Herceptin will be given intravenously via a portacath that I’m going to have inserted under my collarbone for the duration – 15 months. Just reading a little about it online then and some women say having the portacath in was worse than their breast surgery and listed numerous issues with it. I kept reading though and found others who said it hurts for a couple of days but then was fine although annoying at times. Hopefully I’m the latter as I do feel it’s essential, as do the Drs. I previously thought the portacath would be inserted under light general anaesthetic but N told me it will actually be done by a Radiologist under heavy sedation. This is good as I definitely do not want the gas again to keep me under. I’m all for heavy sedation these days.

N went on to explain the possible and likely side effects of the chemo drugs. She seemed to say that if I tolerate the AC plan, I’ll probably suffer for the second 12 weeks on the Taxol but if the AC plan hits me hard it’s possible I’ll feel a bit better on the Taxol. She asked if I suffered morning sickness and I told her I did, morning noon and night. No vomiting just constant nausea for 2.5 months. I saw her raise an eyebrow and I took this to mean that I might be in for a hard time with the AC. Derek thought it was more of a raising both eyebrows with a shoulder shrug which he took to mean I should be fine. I’ve since read some forums online and it’s mentioned quite regularly that women who suffer morning sickness and/or travel sickness (I tick both boxes) are more likely to suffer with nausea on the AC plan. Honestly, I know there’s going to be some suffering and I’d rather get it out of the way in the first 12 weeks. Just get it over and done with. There are actually two options for the second chemo plan and that’s a different drug to the Taxol (but in the same family) every 3 weeks but at a higher dose. N says that she recommends the Taxol for younger women with young children as the dose is lower but weekly. She says the effects are cumulative towards the end but during most of the treatment I’ll have more energy than if I did the 3 weekly, higher dose treatment. Both are as effective as the other so at this stage I’m going to go with the lower dose, more energy.

Here are the side effects she listed:

Nausea/vomiting

Fatigue

Flu like symptoms

Hair loss around the 3rd week of the first round (earlier than I was expecting)

Sleepiness or insomnia

Diarrhoea or constipation

Mouth ulcers

Premature menopause

Weight gain

Nail & skin damage

Chemo brain (I’m guessing like baby or pregnancy brain)

Low red blood cell counts and immunity – if I get a temp of 38 or above then it’s straight to the hospital for me.

Low platelets and increased risk of bleeding

Increased risk of infection

Painful stiff joints and muscles

Extremely rare side effects are a lower pumping capacity of the heart and leukaemia

So they’re all the negatives (and I’d be unlucky to get all of them), the positives will be meeting other women going through the same thing and having time to read books I’ve been meaning to for ages whilst having the actual treatment. Plus that appreciation of the little things.

When we saw N in Brisbane she invited me to take part in a clinical trial due to my cancer being HER2 positive. My surgeon, K, had previously mentioned this and Derek & I had read and heard that people who take part in clinical trials generally do better than those that don’t. It doesn’t always come down to the additional drug on offer but the extra layer of care and additional monitoring involved when taking part in a clinical trial. The downside is the whole 15 months of treatment must take place in Brisbane. Flying back and forth on a 3 weekly, then weekly, than back to 3 weekly basis is not even an option. For one thing, I don’t think I will be able to handle that on any level and two, it’s not a good idea to fly that often after having a full lymph node dissection. It’s not the length of the flight that could cause problems but the change in altitude when going up and down.

So, I have decided to take part in the trial and we’re moving to Brisbane for 12-15 months. Derek’s work have been extremely understanding and a new role will allow him to work out of the Brisbane office. Because of this it was decided we couldn’t pass up on me taking part in the trial. It’s actually a double blinded study which means I’ll never know if I’m being given the trial drug or the placebo (50/50 chance), nor will my doctors or nurses. It would only come to light in the future if I my cancer returns or I have heart problems or other major medical problems.

It was an extremely hard decision to make because we have such great support here in Yeppoon and Rockhampton, plus it’s our home. I haven’t felt so settled somewhere in such a long time. Probably since I lived in Rockhampton when Derek and I first met. That’s obviously due to us travelling so much but even since returning from London, Yeppoon is the first place I can really call home. This is where we are planning on raising the girls and building our first family home together. I’ll be dreaming about and planning this home all through treatment. Rosie is also very settled here with her daycare, swimming lessons, grandparents close by. I do think she’ll make an easy transition though and am hoping to get her into a fantastic daycare/kindy in Indooroopilly where my aunty works, fingers crossed. Daycare has really been a blessing since my diagnosis as she’s been able to stick with her normal routine and have that outlet away from home. Her daycare here in Yeppoon have been amazing and have helped by applying to the government for 13 weeks of free childcare due to our circumstances. This should be able to be transferred to the daycare down there too. They’ve also said they’ll have a spot for Rosie in Kindy in 2014 when we return so that’s a relief as the waiting list in long and I was worried we’d have to start again. It will be good for Rosie to continue on in a group environment down in Brisbane as she loves it and it will be good for me on those bad days too. If she gets into this daycare we’ll look for a rental around the Indooroopilly area or further out so Derek can drop her there on the way to work. If she doesn’t get in then we would be looking in North Brisbane due to us both having family in the area.

Anyway, there is so much to do before we leave. Treatment will start on 18 October but there are numerous tests I need before the start date including an ECHO and ECG of the heart plus a CT of the head and more blood tests. My tumour is going to be well travelled, just like me. Part of it is taking a little trip over to Italy which is obviously where part of the research team are. They may do their own tests prior to treatment starting or they may just store it there for future testing. My blood is also likely going to take a trip so they can do some genetic testing, among other tests. This will all be confidential and I won’t even know the results from these tests. It’s all a bit strange knowing I’m taking part in a clinical trial but I feel very comfortable with my decision. It’s just the whole moving thing that has really thrown me. When we made the final decision to do it I found it all quite overwhelming and let the emotions flood out. Once again it’s that inconvenience factor. It would be so easy just to stay here and have the standard treatment in Rocky but we’re not ones to choose a path just because it’s the easy option. I would hate to look back in years to come and be sitting there saying, “If only I’d gone to Brisbane for treatment, I should have.” Now that would be a horrible position to be in. I suppose that could go both ways though, and I could be sitting there saying, “If only I’d stayed in Rocky for treatment.” This is unlikely though due to the fact that this new drug has already been through clinical trials for women with advanced breast cancer and the side effects are similar to those of Herceptin, which I’ll be taking anyway. Both the new drug and Herceptin block the HER2 in my body from crazily rapidly dividing again which is what they did initially. They both block this from happening but in a slightly different way to the other. There’s proof that administering both drugs is more effective than the Herceptin alone. The fact that it’s a double blinded study is very promising and really means they’re just gathering the final research required to get this new drug approved. This all takes a long time but looking back, I think Herceptin was in trials in the early 2000s and is now available for all women with HER2 positive tumours under the PBS (Pharmaceutical Benefits Scheme), and has been since 2006. Before that woman had to pay large sums of money $40,000 plus to receive this potentially life saving treatment.

Anyway, enough about that for the time being. I’ve had a mixed week again. I’ve been pretty sick with strep throat that then morphed into yet another head cold which has been hanging around for over a month. Apparently surgery can lower the immune system so I’ve been suffering. My GP recommended seeing another GP at the centre who does vitamin C and B infusions by IV. I thought that sounded great so I jumped at the chance and had it done last night. I was totally wired afterwards and have felt much better today, although still tired. It was like having a few red bulls or Beroccas pumped into my veins. Pure awesomeness but it would be a really expensive drug habit at $150 a pop. All worthwhile if it means my immune system recovers properly before my chemo starts. I’m willing to try anything at this point. In aid of making myself feel better, later this week I’m having my hair cut (going short gradually) and also a reflexology session, can’t wait for that. My GP also recommended this and she swears by it. The upside to this week is that Beck and Amelia are both in Yeppoon. Mealsy is staying with me and Beck with her sister Di. It’s so great having my closest and oldest friends here during yet another time of limbo. They’ll be here until Monday and then my mum is going to come back before we head to Brisbane.

One more thing before I go, a funny story from when I met with the oncologist. I asked her if I could swim whilst on chemo and she said it’s not a good idea to swim in public pools due to the risk of infection. She did however say I could go swimming in the ocean. I thought about this and said well I’d have to take someone with me in case I’m not feeling well and need help getting back to shore. She then said wouldn’t that be ironic and she could see the headlines now, “Oncologist tells cancer patient to swim in the ocean, patient drowns.” It made me laugh and think maybe I’ll give the swimming a miss and take it up again when the chemo side of things is over. Exercise is highly recommended whilst on chemo though so I’ll have to find something else I enjoy doing, even if it’s just a walk with the girls to a local park (would I look silly sitting at the park with gloves and mask to protect myself from germs?!)

Just to end I’d like to say a big thank you to a few people. Firstly, my cousin Shanna who entered a dress into a recent fashion designer competition and dedicated it to me. It was a mod pink ribbon dress made out of pink pillows cases with pink ribbons all over it. You’re such a beautiful young lady Shanna and I’m so proud of the fact that you already seem to know who you are at such a young age. Also, my Aunty Deb who’s fitness group is dedicating their upcoming triathlon for the National Breast Cancer Foundation to me. My other Aunty Deb who has stuck her neck out for us in an attempt to get Rosie into her daycare. Aunty Marie who looked after us all whilst staying in Brisbane for 2 weeks for surgery. Mum, Dad, Sue & David who have been there at our beck and call, your support has meant I can lean on you whenever I need to so that I don’t get too tired or over emotional as I’m not having to deal with all the aspects of normal life that I know I would be finding quite stressful right now if I had to deal with them all on top of everything else. And Amelia who’s been Mum’s replacement since Sunday. I’ve also got Beck booked in for baby sitting duties later in the week. This is like a bloody acceptance speech! I’d also like to thank all my friends and family, who I haven’t named individually as there are just too many of you, who have continued to send through your messages of love and support. Ah, what a nice note to end on…. a bit soppy but necessary.

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Mixed bag of drugs, results and emotions

It’s been a while between posts for a number of reasons. I was too uncomfortable to sit still for long enough to even consider typing at any great length. I was too busy eating and being waited on hand and foot. If I wasn’t eating, relaxing or spending time with the girls, I was sleeping. Not much time left for typing blog posts. Even though my social life has been greatly reduced and I’ve become virtually useless in caring for my own children, it’s been hard to find the time to type this post even though I’ve been thinking about doing it many times over the last week and actually started it on Thursday. So I’ll update you all on my progress since my last drug induced post.

I checked out of hospital on Saturday, that’s only two nights in hospital. They really get you out quite quickly. So on shaky legs, off “home” (Aunty Marie’s) I went with a hop, skip and a jump. I was happy to be going home where I knew I’d be cared for extremely well, surrounded by my favourite people. I was worried about going home with the drain in but there was no way I could handle staying in hospital until the drain was due to come out 7 days later. They just don’t do that and do think that the patient will be more comfortable in their own surroundings and recover quicker. It finally came out on Wednesday after causing me lots of pain and discomfort (more discomfort than pain though). It was such a relief to have it removed. There was approx 6 inches of tubing inside my body to drain the fluid out and I could feel all of it. Being skinny made it worse because it was right there under the skin. I could feel it when I moved, when I laughed, when I cried, when I was just laying in bed trying to sleep. Anyway, all gone, now I’m just left with so much nerve pain, hypersensitivity and numbness I can’t even touch my arm, under arm, chest wall or back without feeling sick from it. This will get better with time and daily exercises but for the time being it’s horrible. I have a little handmade pink pillow in the shape of a jelly bean from Choices that I pop under my arm to keep the arm from touching my torso. It’s great, I’ve called him George and he goes everywhere with me. I feel a bit lost if I’m without him. Since the drain was removed a build up of fluid has also appeared under the skin under my arm. I had it drained off this morning (Saturday) and it’s already started building up again so will be going to my GP on Monday for another shot at it. Icky I know but not a bad as it sounds. The strangest thing I’m dealing with in this regard is phantom boob syndrome. A name I’ve made up for when I can still feel
sensations in my left breast even though it’s had the chop. That messes with the mind a bit. Now I know how people feel when they’ve had a limb removed and can still feel it at times. It’s all about the old memories of those things we call nerves and how they have to make new memories.

Coming home from hospital was a mixed bag. I was looking forward to being with my loved ones but at the same time scared about leaving the security of the hospital and heading home to my new reality. I didn’t realise this until I walked in the door of Aunty Marie’s and broke into tears. It came out of nowhere. One minute I was fine, the next I was having a good old cry. The flood of emotions from the previous few days had finally caught up with me. I was tucked into bed surrounded by a million and one pillows, given one of my stronger pain killers, which would also help me off to la la land and stayed there for an unknown number of hours. After that effort I decided no more sleepy pain killers during the day. The following days were also mixed bags. Some good, some bad, most days with a mixture of both. It was difficult to have a shower and dress myself. I couldn’t do it alone initially. This was frustrating and was really starting to get to me by day 3 or 4 post surgery. To relieve the frustration I had a few cries but again, not anywhere near as many as I thought I would have post op. Just thinking about frustration, I’m proud to say I’ve become much more tolerant of the people around me. I can be a bit short tempered and intolerant of those close to me at times but since this has happened I’ve taken stock of what really matters and all those little things that used to annoy me, well now I just don’t let them bother me. It really is that simple. Hopefully I can continue on with that frame of mind for some time although I have no doubt that old habits die hard, and going through chemo may change me back to my old ways. If chemo doesn’t do it, hormone blocking therapy is likely to. Both will put me into early menopause which is devastating in itself. Hopefully I take after my mum who had minimal menopausal symptoms. Fingers crossed!

I’ve been having lots of laughs, definitely more laughing than crying has taken place over the last week which was quite unexpected. Aunty Marie’s house is where our family comes to recover and to laugh. It’s where my Mum and my Aunty Lyn came to recover and be cared for during their own cancer treatments (unrelated to my own type of cancer so not genetic). My cousin Anne and Aunty Marie’s daughter has also been through her own cancer experience and no doubt found great solace in spending time here with her mum. My Mum has told me many stories of her and all of my aunties during these times and it warms my heart that during such hard and sad times, laughter has always been the very best medicine. I’ve been compared to Aunty Lyn calling out from the bed asking for this that and the other. I’ve got big shoes to fill if that’s the case. Aunty Marie gave me a bell to use but no one could hear me so I reverted to texting when I was hungry or wanted attention. Mum and Aunty Marie have also been the tucking in brigade, getting me comfy and tucking me into bed each night, spraying smelly stuff on my pillow to help me sleep, putting everything I might need during the night at arms reach. So spoilt! They keep telling me I deserve it so I’m lapping it up 🙂 The laughing has been my favourite past of the last week even if it means nearly wetting myself and being in pain from laughing so hard.

Over the last week I’ve been taking a mixed bag of drugs and it’s really only the start of it when I think of the road ahead. We’ve been joking all week about my drug pushers, I’ll call them M and AM. They tell me what to take and when, they were even keeping a track of my drug habits in an exercise book and would remind me when to take the next lot. I hope they don’t send me a bill or send their debt collectors around. M and AM would make recommendations (push) different drugs on me depending on my need at the time. Normally I like to take a more natural approach when in pain but that option has left the building people so I’m embracing the drugs to relieve my physical suffering. It does frighten me the huge amount of drugs that will be pumped through my body over the next 15 months (plus 5 years when including the hormone therapy). It’s not only the chemo drugs but also all the other drugs to help with the side effects. But when I look at the bigger picture I’m more afraid of the cancer coming back so I’ll swallow what I have to to get through this cancer free on the other side, drugs, side effects and all. The whole mixed bag. Back to mu drug pushers though, I feel like I’ve been welcomed into a whole new club, one I didn’t think I’d join until I was much older. Many of you may be part of this club whereby you have so many drugs to take that you need a plastic container with the days of the week on them to remind you what to take and when. I am exaggerating a little because I really haven’t taken that many that I could possibly lose track, it’s more the discussions about all the different type of drugs for different symptoms and what works the best in different situations. And also taking one lot of drugs that might help some symptoms but then cause other symptoms so then there’s the need for more drugs to relieve the new symptoms caused by the first drugs! I like the ones that help me sleep but not the ones that mess with the well oiled machine that is my very regular digestive system, if you know what I mean.

So I got the pathology results on Tuesday and it’s also a mixed bag. The good news is that they removed 23 lymph nodes from under my arms and only 2 were cancerous. The two involved lymph nodes lie closest to the breast and there is no extranodal extension – apparently this is a good thing. The bad news is there were two tumours and they were bigger than expected from my pre op tests. One of the invasive cancers was 32mm and the other 44mm. Once a cancerous breast tumour hits 40mm they do radiation on the chest wall where the cancer was. This is something I was hoping to avoid as it will make rebuilding a nice looking boob that bit harder. I haven’t seen the radiation oncologist yet but I’ve been told by my surgeon that this is what’s going to happen. The DCIS (ductal carcinoma in situ) was also much bigger than expected. From the MRI and mammogram it looked to be about 6cm but in fact was 10cm. The good news in relation to the tumours and DCIS is that they all had clear margins. All of this means there’s less of a chance it’s spread to other areas of the body. The DCIS was close to the chest wall at 0.2mm but because this was the DCIS and not the invasive tumours this is ok apparently because the cancer was contained within the milk ducts. The other bad news is that both tumours were grade 3 when they thought it was grade 2 from the core biopsy. Both tumours are similar in their pathology. They always knew it was an aggressive cancer (mainly because I’m young and it’s HER2 positive) so this is really of no surprise and the fact that it is HER2 positive means they have another form of treatment to stop it returning. Here’s some light reading on HER2 status if you’re interested. I’ll go into my treatment in the next blog post. It’s pretty in depth and will take up one blog post on it’s own. To be honest my pathology report is a bit hard going and I’m looking forward to seeing Beck so she can help me decipher it. Of course my surgeon has told me the important bits from it which I’ve relayed above but I’d like to know as much as possible in my hunger for information about what is happening to me.

Derek and I went to see the medical oncologist on Wednesday and Friday. There was just too much information to go through in one session and it was good to go away and think about a number of things before going back in with more questions. We’ve got some very tough decisions to make surrounding the next stage of treatment and I’ll write more about this once the decisions have been made. No matter what the decision I’ll be back in Brisbane in 3-4 weeks for my first lot of chemo plus more tests before it all starts. It seems never ending at this point.

On Thursday evening I also went back to the Lymphoedemia and Breast Oncology Physiotherapist. She’s been great. I saw her before surgery and she prepared me for what I’d be in for post op and exercises to help deal with it. I’ve been doing my exercises religiously and have regained a lot of movement in my left arm. During surgery nerves are stretched and moved out of the way to get to the lymph nodes, particularly in the higher levels. This means that the nerves need to regenerate and relearn what they need to do. I still have a long way to go but it’s very promising how fair I’ve come in only a week. I’ve got a lovely sleeve to wear on my arm whenever I fly (for the rest of my life) to help prevent lymphoedemia. I already had a taste for this type of thing when I had to wear compression tights when pregnant with Polly due to varicose veins on my legs, the sleeve is much easier to bear and much easier to put on without a big pregnant tummy in the way. After that appointment Mum and Aunty Marie gave us the night off so we had dinner at a local Thai restaurant. Yum yum. I’m going to make the most of the next few weeks and am looking forward to spending time with my family and friends including Beck and Amelia who has recently returned from the UK. I’m sure this time will also include lots of laughs, yummy food and memories to help me through the tough time ahead, just as this last week has.

Derek and Rosie left today (Saturday) for their road trip back home with a stopover in Agnes Water. Mum, Polly and I are flying home tomorrow (Sunday). Rosie and Polly have both been amazing and have adjusted really well to being away from home. Rosie has become the biggest daddy’s girl which makes me a bit sad because she’s always been more of a mummy’s girl but I’m happy she’s been happy and spending more time with her daddy. Mum and Aunty Marie have loved tending to Polly’s needs but again it’s made me a bit sad that I haven’t been able to do the basics such as feed her, change her, pick her up for a cuddle without help. Everything a mother does for her baby. They’ve both been in great hands though and that’s what is really important.

It’s late and I should be in bed. If I don’t go now, the tucking in brigade will have gone to bed and I’ll have to tuck myself in!

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