Monday 28 November 2016

Round 4 Ding Ding

I've probably said before I don't update the blog when I'm in the middle of a bad time, whether that means physically or emotionally, the former because I don't really have the power of either communication or concentration, the latter because I'm too miserable. I  also suspect some of what I write is a difficult read anyway, well I know it is because people have told me, and I'm not in the business of scaring anyone. The gaps between blogs are generally the 9 days post chemo when being upright would be an achievement, I understand it is a breeze for some, that triathlons are run. In this house directions are taken from my bed and being up and about, as I am on the 10th day (today) is cause for much excitement. 
So I am up to having had cycle (as they are called) four of chemo.  FEC-T is three cycles of FEC and one of T, so I'm up to the first T. I knew what the side effects could be but it is impossible to tell what one might get, the list is endless, but it is so different for everyone. The headlines were less nausea, flu like aching, weight gain. I knew I could also start getting mouth problems such as ulcers, nail issues such as them falling off, and pins and needles.I was hoping mainly for less nausea. What they don't tell you is that this drug can cause permanent hair loss. People in America are suing the drug co. I've emailed Phillip Kingsley for hair loss reversal type advice post chemo. 

I can say nothing but that today is fine and the last 9 days have been anything but. I still had nausea although it was slightly less debilitating so I could sit up in bed, but I was sick more often. The impact on my stomach and digestion may result in a chart at some point, having become slightly obsessed. The aches and pains are more like being run over than flu like symptoms and all of that mean dehydration headaches. It was all very painful pretty much everywhere and the pins and needles were astonishing. Sleep was over challenging with that much pain and the worst of it is that some of the side effects don't go away post treatment. Now I am back to 'normal,' up and about quickly shakes off the previous week. Back at my desk doing some work and not quite fit and active, but enough near normal to feel happy about it. 


In other news, Cancer Research are using the film of my wig fitting so they came to see me pre chemo to show me mine and the other films. they are all really good, mine is funny. I pull a lot of faces saying no to a lot of wigs, I can see why children find me funny now, my face is like plasticine. You don't see that when you look in the mirror now do you. Will post link when it is up, no idea when that is. At least I know now which charity it is for now, I said yes to the Macmillan man at the hospital because he is so nice, didn't register that bit. Oops. #CANCERRIGHTNOW

Sunday 13 November 2016

Up Close and Personal

Its a long time since my last post because although this last week has been mostly fine, there were a good 10 post chemo days that weren’t fine at all. I don’t post when I am not okay because not being ok mainly means lying down trying not to move my head because that make me feel ill. There was a lot of sleep because sleep is a very good way to not feel ill. There were also some dark thoughts not helped by the afternoons being darker. I’ve not done a lot of why me’s since I was diagnosed, I always thought why not me, given cancer stats are up to about 1 in 2 (breast cancer is 1 in 7 or 8 depending on what your read). Last week there were lots of feelings about why me, it’s not fair, and how grim this treatment is. I felt like giving up, in the knowledge I wouldn’t, but being halfway through felt like there was a long slog ahead. I also felt like I just wanted to know if this was going to work for me. I haven’t felt despair, dread or fear very often since my diagnosis; the practicalities of managing treatment sidelines emotions, but the last post chemo period was utterly miserable.


There are all sorts of horrible things that people can get, cancer is just one of them. Like other things, I am sure everyone with cancer fears it coming back, because secondary cancers are not curable. Ever. The knowledge that chemo doesn’t work for everyone just makes me want to know whether it has worked for me and I won’t know that. There are a couple of reasons that my chances of secondary cancer make me more likely to be in that 30% group that it happens to, much as I would prefer not to be in that club. Secondary cancer can be treated, and basically that means it can be held at bay, or not. In reality it means chemo after chemo, a pause to see if it is ‘working’ and switching to different drugs until you run out of drugs. The treatment gives you time. The quality of that time is another matter and cancer is not a good death. 


This week is better, I am not veering from thoughts of death to optimism, but getting on with life. That does mean I have been doing some work, which I was very grateful to for taking me out of my head. I can’t ignore the side effects completely but they are tolerable. All of my organs are involved in being poisoned and my body felt that. My veins feel like someone poured acid down them (which they did) and the pain from that has made me sleep funny so now I have one of those annoying muscle tension type things down my left side. I am hoping it will be ok to drive, because this is the week of all the oncology appointments and blood tests before the next chemo. It only feels like I have had 5 minutes since the last one. One day I might be grateful for the treatment but right now it feels like this is grim, the approaching surgery is brutal (and I already have pain from the surgery I've just had) and the radiation is just icing on the case of burn upon burn.  

Next Friday is at least a different chemo drug, my nails are likely to fall out, my mouth will get ulcers, and my limbs will ache as if I have flu, but there may be no nausea. You can see how hopes become quite small, just no nausea please. I was broken last week, I walked around like a very old person, and needed a 3 hour rest after a bath. I'm not broken today which is why I can write this, I am grateful for a character that means I am not frightened that often. But like this blog says, there is nothing good about this cancer, and any cancer diagnosis means death gets up close and personal.

Tuesday 1 November 2016

When Half Way Still Feels Like Uphill


The day of being half way through chemo felt good, for a day. Well not even that, by 4pm I was in bed. The session itself was enlivened by the only person I have met in the western world who thinks Trump will put America straight. She'd seemed such a lively, lovely, kind lady and luckily left the rest of us speechless. The alternative of the ward agreeing would have been depressing. One lady I also see in clinic finished her last session and there was a sense of just trucking on through it but that has come to blows with the struggle that is being able to do nothing. Now it feels like three more to go, of a different drug, so different and unknown side effects. For now I can do literally nothing. When standing up makes you feel sick you tend to stay prone and this is the first time I've been able to prop myself up to read or write. That's four days of lying down, trying to eat so I don't feel weak and feeble with hunger, because that feels ever so slightly worse. As this veers through it's disgusting path, the thought of surgery looms. Whilst you can only take one step at a time, feeling this battered and weak whilst more brutal surgery approaches feels like I'm trying to do a marathon without any training. People say you would have to have more chemo if you needed it, I am still not so sure. Today I feel like giving up on this round, of course I won't, but I really hope tomorrow is better. I have new meds, let's hope they make the next few days better, even if they don't make the immediate aftermath that much more tolerable. The cards I should credit