BACK ON TRACK (NEARLY)

I'm glad to say that once I was out of hospital I recovered reasonably quickly. Although I'd done nothing but lie in bed all day, I was pretty exhausted, both by the round-the-clock diarrhoea and the incongruous mixture of nothing happening and constant interruption that makes up hospital life.

So after a few days' relaxed convalescence at my sister's, being wonderfully pampered and loving having some normality again, I came back to my own flat, and slowly got on top of the accumulated emails and admin. I got myself registered for internet ordering and delivery of supermarket shopping, which takes the physical effort out of shopping, and bit by bit built my strength up again. Friends and family have been great in visiting, helping me with cooking and washing up, going for gentle walks with me, and boosting my morale with phone calls, texts, emails and a wonderful array of flowers - thank you so much to everyone who's been so supportive.

Just some of the beautiful flowers that have been cheering up my flat

I returned to the Marsden at the beginning of the week, and they recommended reducing the dose of both chemo drugs to 75%, to make it less taxing on my body (and in particular on my immune system - although all chemo can affect the white blood cell production, you wouldn't generally expect the first dose to knock out the whole immune function as comprehensively as happened with me). They also prescribed some injections which stimulate the bone marrow to produce more white blood cells and thereby bolster the immune system. I'll inject myself with these mid-cycle - I've been doing sub-cutaneous injections of a naturopathic remedy from the German clinic for more than a year, so I'm pretty used to the process (although it's not exactly something I look forward to). 

(Not such a bad idea....)

So I started on cycle 2 on Tuesday (2 weeks delayed because of the hospital admission), and I'm very relieved to report that it's been much less punishing than the first cycle. I've felt a bit weary, but nowhere near as exhausted as I felt a month ago, and the tingling and sensitivity to cold hasn't been as bad either. It did feel quite daunting to start chemo again, especially when I'm still not back to 100%, but on the other hand I didn't want to leave too long an interval without treatment, given that the tumours were growing over the summer. I'm trying not to anticipate how it will be over the next couple of weeks - either desperately hoping it'll be OK, or dreading it being like the last cycle - as neither of those seem very helpful ways to approach things. 

Emotionally it's been a bit mixed. When I was in hospital I felt too lousy to really care about very much - I certainly wasn't well enough to feel bored or to be concerned with how long I'd be there - but I accepted that I needed to be there and that this bout of illness was simply something I'd have to ride out. I was really pleased about that, because when I was admitted to the Marsden in June 2011 it was very different: I so didn't want to be there that I was in denial that there was really anything wrong, despite being in acute pain, with a very inflamed abdomen and a spiking temperature. With hindsight, I was absolutely terrified of being properly ill, and just would not let myself believe I really was. The result was that I was quite bolshy, argued with the doctors about every intervention, and felt outraged that I was being kept in when I didn't feel too bad. I determinedly sat on the chair beside the bed all day, rather than staying in bed, as though to prove that I wasn't really ill. However (of course) these defence mechanisms all collapsed eventually when I realised the reason they were being so careful was that any complications could have been very serious, if not life-threatening; and I then spent a few days feeling extremely scared and vulnerable. 

So I can see how much progress I've made in coming to terms with my situation over the past year, that this time round I viewed it as "unpleasant but that's just how it is", instead of railing against reality. I also wasn't scared of the implications of being in hospital - I knew that although viruses can be very nasty and I was extremely weak for a while, they're self-limiting and I wasn't in any danger, and my symptoms were related to the chemo rather than any progression of the cancer. It amazed me how much easier it was to bear the discomfort and unpleasantness of being unwell when I wasn't simultaneously frightened, trying to convince myself that things weren't really how they seemed, or angry and frustrated because I didn't want things to be as they were.

So finding some greater equanimity felt like a real achievement. However, as I recovered I've found it hard accepting that I still need to take things easy and limit how much I do. I guess when you're ill it's very clear that you're not up to doing your usual routine, as you don't even want to; but now that I'm back in the category of "basically well, but under par" I've found it very galling to have to be sensible and only book in 1 or 2 things to do each day. And at times I've felt very sad about not being able to be my previous carefree self, who packed loads into life and chose what I wanted to do, without having to think "no, I'll need to rest". It also feels really tough at times not knowing how long I'll be on this chemo for (it will depend whether it's working or not), and not be able to plan trips away without wondering if it's realistic or whether I'll end up having to cancel. So I'm struggling a bit at the moment. But overall I'm focusing on trying to let go of wanting / needing that illusion of control and certainty, and instead just take things a day at a time. It sounds so simple, but I'm discovering it takes real skill!

What do you mean your crystal ball can only see one day at a time?