Saturday 28 January 2017

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. 

Monday 9 January 2017

Cancer Sucks

Christmas came and went and it was all quite quiet and cosy. It is a bit sad quite how quiet and cosy it was but one can only do what one can do. You’ve gathered by now I’m not running a triathlon in a pink t-shirt grinning like a poster girl I expect.


The only minor excitement came after everyone had gone back to work because I’d rung genetics to find out if my results were back. They then discovered my bloods had not reached the lab, which have a lead-time of 3 months. That would have been just in time for surgery. The lovely professor found another lab who can do the BRCA1 and BRCA2 test in 3 weeks. This is very tight for time and I didn’t pick up the messages from the lovely professor for a couple of days because I’d just had chemo and was abed with the poorliness. One of the messages said the lovely professor was having trouble contacting me and maybe I was away, chance would be a fine thing I thought. 

I was too poorly to get to the hospital for another blood test, so someone from genetics came out to me, they were at a local clinic. This would have been great except that I could tell in 2 seconds she would not be able to get blood out of my chemo hardened veins. My confidence wasn’t helped by finding out that she was an hour late because she had got lost and had just kept driving around instead of calling me as I had suggested when the appointment was arranged. It was painful and I was a pincushion who was being asked by this person what had happened to my previous test (really as if I would know) and who told me how difficult I was as she failed to take blood. I reminded her it was my veins which were difficult as she asked me what to do during he second unsuccessful and painful attempt. 

I was ill, ill enough to not have got out of pyjamas, and I’ve had to keep myself awake during all that getting lost time. It was time to take charge, so I just told her to stop and I would get myself to the hospital the next day where one of the phlebotomists would be able to take blood. More flapping took place because she wanted me in first thing but the timing of this was governed by OH being able to take me and prop me up, he not surprisingly had some work commitments. Genetics person rang her manager, I spoke to manager, 10.30am was fine. At this point I am reminded that everyone involved in this dialogue wanted to know why I was on my own at home and where my husband was, I did point out that one of us needed to work because I couldn't. How do people think you keep your house when you have cancer I wonder? 

Even the phlebotomist struggled, but bloods were taken, leaving me in pain. They were handed over to another genetics person and I went to bed once home. Results should come back the Friday before my Wednesday surgery and will affect what the surgery is. I’ve written to my surgeon to say I trust the date for surgery will not alter, and I don't think it will, because the chances of the test results being positive are low. It will though be a right pain if we don’t have the results and they come back positive because that would mean more surgery. I think they should just do a double mastectomy regardless, but they don't like removing healthy tissue, and without the genetic link it doesn't lower the risks. I don't understand that but all the research says so. 

The only other thing going on is that the effects of chemo are cumulative (probably said that before) so it is taking me longer to get over the last one. That makes it harder to be glad that the last one is over and done with, as are the injections I self-administer to raise my white blood count and which I hate doing. Today is 10 days post chemo and I still had to lie down after doing one thing due to nausea and dizziness. I also have weird tingling in my fingers and feet, which I know some people have a lot longer and worse than I do, but still hoping it goes away as the side effects wear off. If that and the skin peeling goes away, the only thing I have really lost is hair. That said; never again with the chemo thing. I shall take my chances and the risks of whatever else is doable. Having spent at least half of the past 4 months unable to function and in pain, quality of life wouldn’t be worth a repeat visit.

I’m now getting scared about surgery, which whatever it is, will be big surgery. Some people wear their scars with pride, you’ll probably have gathered by now I don’t. I’m scared of going under the knife, of the pain, and the outcomes. All of which is why I don’t want that surgery date moved. It needs to be done and over so I can get on with the next scary thing. Least this feel all doom and gloom, I do get on with things and stay positive, but cancer sucks. There isn’t a way around that. I'm lucky that I don't have anyone around me who expects me to be somebody I'm not.