JOLTINGS

One of the things I find most difficult is the collision between what sometimes feels like two completely separate worlds: the normal everyday mundane stuff, and the medical. A couple of weeks ago I spent a lovely few days in mid-Wales with old family friends, along with my sister and nephews, and although I was aware of feeling weary at times, overall I felt pretty normal. The bloating and poor appetite were better (helped by big communal meals so that I didn't have to spend time thinking about what I could face eating), but also everyone there knew about my situation so we didn't have to talk about it. I felt surrounded by caring compassionate people who have known me all my life, and that meant that we could just have normal conversations - including lots of joking and banter - and that was wonderful, really restorative. 

Then I returned to London and had my routine blood tests, and was immediately transported back into "patient" mode. My liver functioning, which had been deteriorating a bit, had declined further, and I was put on a course of steroids (the rationale being that my liver could be inflamed, possibly as a result of the radiotherapy which can disrupt blood chemistry for quite a while after treatment, and steroids reduce inflammation). My haemoglobin was also pretty low, so I had a blood transfusion at the end of last week. What with waiting for the blood tests results, waiting again for a prescription for the steroids, having to come back on another day to give a blood sample to match with the donor blood for the transfusion, and spending more than 5 hours having the transfusion itself, suddenly a large portion of my week was spent at the hospital. 

Sadly that's continued this week too: I've had bad bloating, distention and discomfort since last weekend, and follow-up blood tests showed that my liver functioning hasn't improved. The Marsden team were worried there could be some blockage and I had an urgent ultrasound scan. Urgent, by the way, means that they fitted me in the same day, but it meant waiting 3 hours for a slot and then another 2 hours before someone was free to give me the results. The waiting around is very stressful, as you don't even want to go and get a cup of tea or a sandwich in case you miss being called, and spending all day on uncomfortable plastic chairs is not great when you're in pain and feeling exhausted.

The ultrasound didn't show up anything obvious, and I'm very relieved by that, and thankful that they took it seriously and investigated, but I still don't have an explanation (or even any hypotheses from the medical team) for why my liver isn't working properly, and that's an incredibly scary position to be in: at one stage I was terrified that my liver might be about to pack up at any minute. Once again, that comes partly from the lack of continuity and communication - I very briefly saw my specialist nurse, who arranged the transfusions and set up both the ultrasound scan and a CT scan for tomorrow, but she only deals with the practical things, and the doctor she spoke to was (I think) whoever in the team happened to pick up the phone - certainly there was never any suggestion of me actually talking to a doctor in person. Later on a very junior on-call doctor told me that the ultrasound was inconclusive, but she clearly knew very little about my case, asking whether I was on chemo now and not appearing to know about the SIRT procedure in April, and that's very frustrating and doesn't really inspire confidence.

But I was conscious that alongside my worries about the blood results (why now? what's going on? what if this is the start of something serious?), I was also very upset by having my life taken over again (as it felt) by the reality of my health problems: having to drop my plans for the week to accommodate medical appointments, and needing to cancel a number of nice social things I'd been looking forward to because I felt too unwell. (I'm going back to Scotland to see the healer next week, and I've had to cancel my final session with him and change my flight home in order to be able to go to the clinic appointment for the scan results - not the end of the world, but a nuisance and extra admin all the same.) I guess it boils down to a control thing: it's felt like losing my autonomy and the illusion of being in charge of my life, and after a period without feeling defined by illness, it was a bitter blow to have to readjust again. It's tough having to put your life on hold, to relinquish whatever plans you had, to accept that the needs or crises of the body actually have total dominance over what we like to think of as our "free will".

I hope this doesn't sound as if I've got my priorities wrong: what I'm trying to convey is how I can be coasting along fairly comfortably, knowing what the week holds, doing normal things like seeing friends, going to appointments, shopping, doing admin etc, and then suddenly the cancer comes crashing abruptly in and takes over. It's also weird going back the other way and being in a "normal" social environment while trying to explain to other people what's been happening. 

So it helped enormously that my friend Catherine was with me on one of the longest Marsden days (putting all her own plans on hold to stay with me till I was allowed home, bless her), and that she witnessed something of these two slightly contradictory worlds. I guess when people see me socially it's easy to assume that I'm fairly alright, and that despite a few medical appointments I'm as in control of my destiny as anyone else - not many people see me in the enforced passive role of being a hospital patient, helpless in the face of the endless waiting of the system, and feeling like my life's been taken over. I don't like to dwell on those aspects of my existence, but it's certainly part of my reality, and one that I find very challenging, both in itself, and in the suddenness and unpredictability of switching between the two worlds.

However, the other thing which has really helped has been my alternative practitioners: once again, it's made a huge difference having people who actually know me and my history talking me through what might be going on, and having helpful suggestions about how to improve things. Both the alternative doctor and my osteopath believe I've been having an immune system overreaction to the blood transfusion, rather than a blockage or a build-up of fluid in the abdominal cavity (ascites) - which makes sense to me since I've had swollen glands and felt generally achy, as you do when your immune system is working hard - but, whether or not that's "true", having an explanation other than my google searches on end-stage liver failure has, not surprisingly, taken a lot of the fear away. In addition their treatments have eased the pain and reduced the swelling considerably. I don't mean to dismiss the expertise of the Marsden, but I'm very thankful to have a support network which means I don't have to rely solely on their somewhat patchy communication for making sense of what's going on in my body. I'm so lucky to have the money and education to make use of the different forms of care which are out there - it really makes a difference, especially in the tougher times.