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!