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?

SEPTEMBER DOWN THE DRAIN

After the first week of chemo I'd expected to feel better, but I began to feel rather off-colour. My stomach felt unsettled and although I didn't exactly have nausea I found it difficult to face eating or drinking much; two or three times when I tried to eat in spite of this aversion I was sick. I took my left-over anti-nausea tablets and expected it would improve once I finished the chemo tablets a fortnight after the intravenous infusion. However, instead I developed severe diarrhoea, vomiting and fever, and ended up in hospital for 12 days.

 

Although there can always be different causes and it seems it's often impossible to know for sure, the most likely explanation for this episode was that I'd picked up a nasty gastric virus, which I'd been fending off for a week or so while I was off my food. A couple of weeks after chemo is when it has its biggest effect on the immune system, and at that point my white blood cells fell to very low levels (known as being neutropenic) and I was no longer able to fight off the virus and it all flared up. The doctors didn't find any evidence of a bacterial infection, but when you're neutropenic any bacteria can be life-threatening, so they treated me with heavy-duty antibiotics as a preventive measure, and although that's essential it also takes its toll on the body. I continued to have bad diarrhoea (which the antibiotics could have also been contributing to), and occasional vomiting, and this meant I lost a lot of fluid and electrolytes (the mineral salts which are needed for cell functioning), especially as I remained unable to stomach food or water for more than a week. So I was on a drip continuously to replenish water, glucose, magnesium and potassium, until my immune system recovered from the chemo and my body gradually fought off the virus. It took rather longer than we'd all hoped, and I felt extremely weak and depleted (especially as I'd been run-down for a week or so before I was admitted), but little by little things stabilised and I started being able to eat and drink again. A dietician also temporarily prescribed high-calorie supplement drinks and vitamin infusions to help me get some strength back.

 

I was in Chelsea & Westminster hospital, as the Marsden hadn't any beds free, and the upside of being neutropenic when I was admitted was that I had my own room, in a brand-new ward far nicer than any I've ever seen in the NHS. The staff were all very friendly and obliging, and I was very well supported by a loyal band of family and friends who visited, brought me things, texted or phoned to keep in touch, and this really helped. Apologies to anyone who's emailed me and had no response during this time - I'll work through the backlog presently!

 

Although all my blood counts are fine now, this has hit me hard and I realise I'll need to take things easy for a bit. I lost nearly half a stone in 3 weeks, and am pretty exhausted - walking and standing is quite tiring, my concentration is patchy and I need to rest after doing anything, which is a bit disoncerting.

 

So I've come to stay with my sister Belinda for a few days to convalesce, and it's great both having company and being looked after while I build up my energy and stamina. Although after so long lying in a hospital bed it felt rather daunting to re-enter the world, actually it's been wonderful to regain some normality and I'm really taking pleasure in spending time with her and my nephews. For a fortnight I couldn't imagine ever wanting to eat again, but in fact I'm almost continually hungry, and loving making the most of Belinda's wonderful home cooking!

My second cycle of chemo has of course been delayed, but I'm due back at the Marsden next week, and they'll review then when to re-start. I'll post another update once that's decided - of course I need to be strong enough, but equally we don't want to leave any longer gap than necessary. At least it seems as though only the first few days of tiredness were side-effects of the chemo, and that all the later gastric symptoms were hopefully just a one-off. Fingers crossed, anyway!