08 Apr 2014
So yesterday I finished radiotherapy, 15 blasts done YAY! 3 weeks of traipsing to the Northern Centre for Cancer Care at the Freeman Hospital for a 10 minute daily treatment. I was lucky enough to only have a couple of delays although they were pretty long ones – almost 2 hours each time and this wasn’t down to the machine itself breaking down it was due to the big lead door not shutting properly between me and the radiologists. The rest of the time I pretty much walked in and out.
Luckily I’d been given slots that allowed me to drop Kyle and Leo off at school and head straight to the hospital so at this time of the morning I was awake and feeling OK. The treatment itself was pretty uneventful, you just lay there whilst the machine beeps at you, moves to the other side before beeping again and that was it. You don’t feel a thing and like I say once you were called through the treatment only took about 10 minutes and that included getting changed.
I felt a tiny bit puffed out as I walked back to my car everyday but that only lasted a few minutes. At various points in the day I also felt absolutely wrecked and drained of all energy but I tried my best to keep pottering around so I would sleep well at night which seems to work for me. By the weekends I was really tired but an extra good sleep and a lie in picked me up a bit.
As I left the radiotherapy department yesterday I was told the treatment would continue to work for a couple of weeks and the side effects would peak after about 7 days. As things stand I have a large pink area with 5 perfect straight lines but it isn’t hot, burning or sore…..yet. I’ve been putting the cream I was given on religiously, have washed only in what I was told to wash in which was “Simple” and have also been using aloe vera on the area to take any heat out of it. But all in all things seem to be doing well.
I was warned that because I am fair skinned I would possibly react quickly but thankfully it’s not bothering me at the minute. I have been given some special gel that I need to keep in the fridge and put on if my skin starts to peel – nice! My scar has turned quite red which was to be expected but again it’s not sore or itchy so all good there.
I managed to drive myself each day except one when my parents took me as I was at their house. For my last session Simon, Kyle and Leo came along as the staff had agreed to let the boys have a look at the radiotherapy machine. Kyle and Leo were quite impressed with the machine. I think they thought it would be quite small. They were however more impressed to see Bobby Robson's pictures up on the wall in the Bobby Robson Cancer Trials Research Centre in the Nuclear Medicine department! So I guess that is stage 3 over and done with, apart from the possible side effects that could hit me in the next week or two.
In other news I managed to get another wig. My first one seemed to frazzle at the ends after six months and my hair has been very slow to come back so I asked for a second wig voucher and off we went to try on a new style. I so wanted to go for a short style to cover the transition period from my hair coming back to it being cut into a reasonable style (I pity my hairdresser with that challenge) but oh my I looked disastrous with short hair!
So in the end I went for something longer, the same colour but pretty much the same style and a bit longer. It is now almost 13 weeks since my last chemo and it’s only now my hair seems to making a reasonable show. Even the lady in the wig shop was a bit shocked as to how little hair I had after so long.
It’s still relatively straight but then again it’s too short to go curly although the longer bits at the back seem to be bending so I’m not holding out much hope for it returning poker straight lol. However the good news is it seems to have colour to it or at least most parts of it do. Nobody can really decide what colour it is but so far white, grey, red, brown and black have been spotted! So it’s safe to say the wig will be with me for a while and I’ll be investing in some straighteners especially for short hair quite soon!
So what is left to do then…….well I have a day off from hospital today having finished my 3 weeks radiotherapy yesterday but am back at Rake Lane tomorrow for my 3 weekly doses of Herceptin and Perjeta.
I also know I need to go back for physio and I can do that in a few weeks once my skin has settled down. Thanks to the work the Physiotherapist did before radiotherapy I have a reasonable amount of movement in my arm, I’ve not had a problem getting my arms above my head for treatment but I can feel the scar tissue and cording building up again as I’ve not been able to do my exercises. My arm isn’t as strong as it used to be either, this has been a bit of a shock to me to be honest but it’s something I can work on in a few weeks hopefully although I’m guessing it will never be like it was. So I have this to look forward to (she says sobbing at the thought of that).
My Breast Care Nurse has said that once radiotherapy is over with she can start me off down the reconstruction route. I gather this initially involves speaking to the plastic surgeons at the hospital and meeting other patients who have had the various procedures done so you can chat to them and they kindly show you the results of their surgery to help you decide which one to go for.
The actual reconstruction can’t take place for another 12 months at the very earliest and depends on how your skin heals from the effects of radiotherapy. The radiotherapy damages the blood vessels in the area it targets which then take quite some time to heal which is why immediate reconstruction is not an option if you need radiotherapy soon after surgery as it will just damage the reconstructed bits. It may well be that it takes my skin much longer than this to heal but given that my skin healed really well after the mastectomy I’m hopeful for the 12 months, however we shall have to wait and see.
At this point in time I’m pretty certain I do want the reconstruction and I’m pretty sure I know which operation I’d prefer to have but I’m not making any decisions until I have spoken to the specialists (the plastic surgeon at my hospital is supposed to be fabulous) and to ladies who have had these procedures done. As ever the lovely Minnie has given me snippets of information relating to what she had done reconstruction-wise a few months back and I’m sure I shall be pestering her for advice when the time comes.
I’ll continue to have heart scans every 3 months to check the Herceptin is not damaging my heart. My last one showed a 1% increase in function from when I was first diagnosed so that was a good result. I’m also told I will receive a yearly mammogram (not sure how that will work on my mastectomy side and at the moment I’m not sure I want to know) until I am 50 and then I will move into the 3 yearly programme like everybody else.
So do I have cancer now or not? Well that’s the million dollar question. From what I have been told I guess the simple answer in my head is NO I don’t in that chemo and the two targeted therapies appeared to have totally gotten rid of it (known as a complete response) and surgery made doubly sure of that. I’m not sure if this classifies me as being in “remission” or not. I think the term the medics use nowadays is “NED” which stands for “No Evidence of Disease”.
From what I have read I’m not sure the medics ever use the term “cured” on the basis that a recurrence can happen at any time although the longer it stays away the lower your chance of recurrence if that makes sense. I will be asking this question tomorrow when I receive my next lot of treatment as I genuinely do not know what the answer is.
The worry is always going to be there in the back of my mind and I’m guessing that worry is probably going to be stronger now as I get nearer to the end of active treatment. I’ll try not to let it get to me too much although I expect there will be times when this is easier said than done. With a bit of luck that worry will diminish as times moves on.
If I look back now at the last 7 months I do think it’s gone quite quickly, or should I say I can’t believe 7 months have passed because there have indeed been some very long days and long nights too! On the whole at the moment I feel OK if not slightly wiped out. I don’t know if that’s the fall-out from everything that’s happened over these last 7 months or the fall-out from the last 3 weeks of radiotherapy, most likely it’s a combination of both.
After I have had my treatment this week we are heading off in our caravan for the rest of the Easter holidays so hopefully this will give me the chance to recuperate from the radiotherapy side effects. I’m hoping to head back to work after the May half term which will give me some time to pull myself together. It’s been an odd feeling being off work but not actually being ill as such. I say that because to me being ill is all about vomiting and being laid up in bed (I don’t do either of these particularly well) and luckily the rotten side effects I did have didn’t include these two.
Looking back today I do understand that I have been through a hell of a lot but the treatment has always given me something to focus on so I am a bit worried that this is when it actually starts to get harder and I am expecting to hit a bit of a brick wall sooner rather than later and most likely collapse in a heap for a while which is probably no bad thing given everything I have been through. However if I do collapse in a heap I shall probably stay there for a little while as it may do me some good before getting back up, dusting myself off and carrying on!
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