Next Stop Surgery ...

It's been hard to write anything, partly because things were a bit up in the air there for a while with genetics, but also because I have only been well enough to do stuff the last couple of days. It's been a bit of a slog, recovering from that last chemo drug, mainly because the fatigue and nausea didn't pass for ages. The fatigue is the punishing kind which means I wake exhausted after night's sleep, even with extra hours of sleep I've stolen in the hope of catching up in some way. I had to lie down one day after sorting the laundry because the task had taken all of my strength and I sometimes take naps which really just involve me passing out unable to move a muscle. Eating has become a little more do-able, in so far as everything is beginning to taste of what it is, not just paper pulp but nausea puts me off eating. Exercise is supposed to be beneficial but feels like some kind of unattainable fantasy at the moment, going to try for a walk tomorrow if it is a nice day, and not too cold. 

I've been discharged from oncology (well the chemo bit, I guess it is all oncology really) and they described me in their letter as tolerating chemo admirably well. In oncology world that is probably true, I had no hospital admissions and no infections, but that doesn't even come close to the way I experienced the side effects or described them in clinic. For all the talk about not keeping quiet about the side effects, because they can do something about them, my nausea and pain were inadequately managed. I also have a really nasty burn on my hand, which started from the inside when some of the chemo drug leaked. It's been burnt since the 9th December, and still hurts, but when I told the nurse how much pain I was in at the time she did nothing except move my hand slightly. I don't really see the point in talking if nobody listens. Now that chemo is over, they can't tell me if it has worked. It feels absolutely bizarre that I would have such a toxic treatment and there is no scan, no test, no nothing to tell me if it was effective. 

Apart from that there has been a bit more too-ing and fro-ing with genetics, not terribly easy to manage when unwell, and I needed to go back to give more blood. There weren't enough white blood cells because of the chemo and there probably wasn't enough blood because it is so difficult to take from me now. They have been lovely and I just tried not to be anxious about getting the results back in time for surgery. Anyway they got enough blood eventually and tested me for the genes, results came back the morning I saw my surgeon and there is no significant mutation. I think that means negative. This is good, it means no double mastectomy, so at least I will have one position I can sleep in, and no delay to surgery. 

I also had to have more blood taken for my pre-op assessment which apparently wasn't quite the right kind of blood test because there was also more blood to be taken before surgery ... they bank some of my blood so they know my group if I need a transplant during surgery, which is very unlikely, but more likely post chemo. I don't really understand any of this because they have my blood group already, but the nurse just kept saying it is different, and once someone has said that three times you know that is all you are getting. I wouldn't mind all the blood taking usually but my veins have hardened, so taking blood is not only difficult, but also painful. My arm hurts constantly and I do wonder if that will ever wear off. 

So next it is surgery next week; a mastectomy, lymph node removal, and immediate reconstruction which involves an implant. Having got my head somewhat around having an alien thing on my chest, I know the reconstruction doesn't always work, so hoping it does. The op is only the affected breast now, it was going to be both so they matched, but apparently they are more likely to be a good match if I let the first surgery calm down first. So I go back later for that if I want it and, depending on how everything turns out, I may not. I also don't have to have an expander thing in to stretch the skin before the implant, I won't go into all of that in case you are squeamish, but it is straight to implant. Although I may have to go back for a second surgery on the other breast, at this stage it means one less surgery, which is also good. 

It is good that there is no genetic link and surgery is a bit simpler than it might have been. I still have fear and anxiety about the surgery, the pain, the outcome etc. but guess that is all normal. I have fears about recovering from all of this because it has quite broken me, I can't imagine ever being the same again, and ever being free of fear that it will come back. I have absolutely no confidence in this conveyor belt of treatment where nobody listens to me, they just throw the kitchen sink at you. My main fear is secondary cancers, but they can only tell me what my risks are of the cancer returning in the next 5 or 10 years. There is a risk analysis model which applies to all the people with my risk factors and tells me nothing about me or my response to treatment. As far as I can tell, detection will rely on me identifying symptoms, so I can only hope that it doesn't return, and if it does that there is a very obvious lump in a place I can find it like there was this time and not like the other four cancers that were lurking somewhere I couldn't and didn't find them.