THANK YOU

I'd like to say a heartfelt thank you to all of you who responded so generously, sympathetically and warmly to my last update - in blog comments, emails, texts, cards, letters, on Facebook, and by sending flowers. I tried to reply individually to as many people as I could, but if I haven't been in touch with you directly, please know that I'm truly grateful to know there are so many people out there who care about me. 

I also really appreciate the offers of practical help as well, and I'm sorry that I don't really know what to suggest people can do. Although I do feel quite weary at times, and it can be a bit of a drag to do normal household chores and so on (as I'm sure everyone feels from time to time!), that's not really a problem: what's hard is dealing with things emotionally, keeping on top of all my appointments, making decisions, and holding it all together - and no-one else can really do those things for me. I realise it must be very frustrating for friends and family who desperately want to help by doing something concrete - but please know that (at the moment) the support I need is mostly to know that I'm thought about, and having people interested in what's happening with me, rather than having things done for me. 

So please don't underestimate the importance of simply getting in touch every once in a while (even better if I don't always have to reply!), as so many of you have done recently. 

However, on a more practical note, for those of you I see regularly: coming up with ideas of nice things to do, trips out and so on, would be wonderful, as when I'm feeling low in spirits or energy it can be difficult to think creatively, or even imagine what might feel fun. Plus it can feel a lot of effort to research or organise things, so having someone else take charge of the arrangements is even better. I hope that helps a bit.... 

I'm feeling a lot better now than I did when I last wrote. It's funny, I understood at the time that the news from the last scan wasn't particularly bad (certainly not as bad as some results or consultations I've had), but it kind of tipped me over into realising just how much effort it takes to hold things together emotionally, and how utterly exhausted I feel after more than two and a half years of keeping myself going, picking myself up each time I get knocked back, and trying to maintain a balance between a "normal life" and adjusting to a completely different way of relating to my body, my identity and my future. Definitely a case of the last straw breaking the camel's back (or at least resulting in the camel lying down and feeling unable to carry on for a while)...

Yet I think that's bound to happen every so often, and isn't necessarily a bad thing. In a way it's reassured me that I can have a period of feeling weepy and overwhelmed and unable to keep up my "normal" front, and still come out the other side and be able to carry on again afterwards - my default setting is being afraid that if I let my feelings fully come to the surface, I'll simply get swamped and never be able to recover, so this last fortnight has proved that that's not the case. I certainly feel more stable again, and am trying to make the most of that while it lasts.

DIFFICULT NEWS

I'd been dreading the scan 3 months after the radiation procedure. Every scan I have is anxiety-provoking, but I was particularly worried this time as I've continued to have distention in my stomach, some gut discomfort, lack of interest in food, and I've felt weary and tired no matter how much I sleep. In addition I've had some backache and tenderness in my lower ribs (on both sides) which can make it hard to sleep. I assumed that this was due to enlargement of the liver putting pressure on my abdominal cavity, which I'd experienced in the run-up to my diagnosis, so I was fairly sure these were all ominous signs.

However, the feedback from the scan reports was that there had been some small growth in 2 areas of the liver, and some shrinkage in another area, meaning that the overall conclusion was that things are stable. What I hadn't been expecting at all was that there are a few spots in my lungs - all very small, but in this context they have to be viewed as most likely to be further metastases (secondary cancer tumours).

I was totally devastated by this. I'd read somewhere that when metastases are only in the liver it's unusual for them to spread to other organs (in comparison to, say, breast cancer, which once it spreads often appears in the liver, lungs and bones), so I'd assumed that progression to other organs was one thing I didn't need to worry about. It scares me hugely: I can't generally feel my liver, so although I know it's carrying a large burden of disease I'm not aware of it inside my body, but my lungs I feel and am conscious of with every breath - somehow I feel much more intimately connected to my lungs. The idea of them becoming increasingly affected is terrifying, and, despite my best efforts to rein in my fears, for a few days I couldn't get the image out of my head of choking and gasping to death, drowning in my own fluids. I've been very tearful since hearing these results, and also had a kind of heavy despair: a conviction that this is the beginning of the end. As you'll see later in this post, the medical view is (for once) less pessimistic, but this is what's been going on in my head. 

The other emotion that's hit hard is disappointment. A high proportion of people undergoing the radiation treatment have a good response (i.e. it stops further growth for a while or shrinks things), and I felt very unlucky to have had such an equivocal result. I'd also seen the healer in Scotland a couple of weeks before, and had come away feeling quite positive, yet these results left me wondering whether any treatment is ever going to work, given that every scan for a more than a year has shown deterioration. So it's shaken my faith and knocked me back in a big way.

However, the doctor assured me that lung metastases (if that's what they turn out to be) can often cause no problems or symptoms at all. He also, very tactfully, pointed out that the main area of concern is still the liver (i.e. I'm in much more danger from that than I am from a few lung lesions). He said that the full response to SIRT (the radiation treatment) can sometimes take more than 3 months to show (so it's possible there's some benefit still happening), and in any case the fact that overall it's stabilised the liver tumours would indicate that it had been successful. If the stability were to last for some time, then it might be possible to consider repeating the SIRT in the future (although if it doesn't continue beyond a few months, there'd be no point in repeating the procedure).

So the team's recommendation was to do nothing at the moment, but re-scan in another 3 months, to see if there's any change over time. If I have any problems or new symptoms in the meantime I can go in and be assessed, and if necessary the scans can be brought forward - they'll also monitor my blood counts and liver function during this period. If things get worse, they'll discuss whether there's any further treatment they can offer. (I'd been told clearly, several times, that there isn't anything further they can do, but I guess if there's more deterioration they might consider riskier treatments than they would have done previously, since the process is a balance of risks and benefits.) 

Overall I'm very relieved by the team's decision. I was frightened of being discharged and left without any medical back-up, so it's hugely reassuring to hear not only that I'm still very much under their system, but they're clearly thinking very carefully about my case and are planning to keep reviewing it. I was also afraid they'd suggest re-starting chemo, which of course I would have done if it had been urgent, but I'm incredibly relieved not to have to face more gruelling draining treatment when I still feel nowhere near recovered from the last lot. And although I'm still struggling to deal with the emotional fall-out from the news, I'm grateful to have 3 months to process it, adjust to it, and do what I can to improve my physical recovery.

On that note, I saw my alternative doctor recently and told him the latest developments, and he too reiterated that these lung lesions could very well not cause any problems. Unlike the Marsden, he believed that the damage from chemo and radiation could very well explain the ongoing sensitivity of my digestive system. He also had an explanation for my tender ribs: apparently chemo can prevent nutrients and minerals being properly absorbed into the bones, leading to an effect a bit like osteoporosis, and as new bone tissue is produced to replace the gaps, it can mean bones feel tender or painful. I don't know whether this is an accepted scientific theory, but it makes an enormous difference to have a non-threatening explanation; and now that I'm not terrified it's a sign of something sinister, I'm already a lot less bothered by it. 

The alternative doctor also suggested doing some high-dose vitamin treatment (by intravenous infusion) and has agreed to put together a programme for me. Again, I don't know how much difference this might make, if any, to the state of the cancer, but it's incredibly reassuring to have someone say, "OK, we can do x y z" rather than believing that there's nothing which can be done. 

So gradually I'm getting my head round it all. In a way, nothing much has changed, but the emotional roller-coaster is certainly the most challenging thing at the moment. I haven't told many people yet (partly because I haven't been able to talk about it without crying, which is very draining), and I'm sorry that hearing this news via the blog is a rather impersonal way of communicating, but I hope you'll understand that it makes things much easier for me than having to repeat it dozens of times. 

I know that there are lots of people who care about me, but this is a very lonely process, and it's fair to say that I'm quite low at the moment (I didn't even have the heart to search for any cartoons). So if you feel moved to express support via a blog comment, text, email or card, your thoughts and good wishes would be very very welcome. 

ON MINDFULNESS

As I mentioned in my last post, last autumn I did an 8-week introductory course on mindfulness (though I missed one session when I was in hospital). I've just got back from a week in Scotland seeing the healer again, and made use of the peace and tranquillity up there to reflect on some of the ideas and concepts I've found useful, and the patterns I'm trying to change, so I thought I'd say a bit about mindfulness here. I'm sure I've interpreted some of it in my own idiosyncratic ways, so my apologies for misrepresenting it to any readers who know a lot more about it than I do!

The definition of mindfulness that we were given was: intentionally focusing attention on the present moment (i.e. not the past or the future) without judgement. I was initially rather underwhelmed by that, as a great deal of the time the present moment feels so mundane, or dull, or simply waiting for something more interesting or important to take place.

The early stages seemed very abstract, especially as the technique we were taught first was to focus on the breath, as this is something which can only, by definition, be happening in the present moment. At first I found it difficult to see how tracking each in-breath and out-breath would ever help me to deal with the fear, resentment, sadness and envy of healthy people which having cancer has produced in me. After all, it couldn't give me a guarantee of what was going to happen - or rather, a guarantee that everything will turn out OK - which is what I wanted more than anything else (and still do, to be honest).

However, I began to see that the discipline of focusing on the current moment, and bringing back my attention to it every time it wanders, has given me more awareness of just how busy and all-consuming my thoughts are (as indeed is the case for pretty much everyone). I also came to see that the vast majority of my most distressing thoughts are concerned with what I'm afraid might happen in the future ("what if?"), or railing against what's happening in the present ("it shouldn't be like this"). It's much more rare that what's happening right now is unbearable in itself - mostly it's the meaning I put on it. So, for example, if my stomach's inflamed and making it hard to get to sleep, or I walk up a flight of stairs and feel out of breath, those experiences might be uncomfortable, but what makes them properly disturbing is the panicky fear about what this might indicate or lead to ("surely this symptom should have stopped by now? it can't still be the chemo, what if the cancer's spreading into the stomach?" or "I can't even walk upstairs now, what if this is the beginning of the end? I can't imagine ever being fit enough to go skiing again, it's so unfair, and what's the point in being alive if I can't do the things I love?"). The thoughts about the present moment are what produces the emotional loading, not the moment itself. 

Of course, those thoughts and feelings are entirely natural and understandable, which is where the non-judgement part was a revelation for me. In the past I'd try to deal with those kinds of thoughts by trying to talk myself out of of feeling how I felt - perhaps by reasoning with myself as to why it was illogical to feel that way, or making a plan of how to change how I felt. Mostly though I'm in the habit of being much more critical and stern, telling myself how much worse off other people are and how lucky I am in comparison, or that I'm being silly and ridiculous to jump to such conclusions, or that I mustn't allow those negative attitudes any headspace because I should be thinking positively at all times and never giving up hope of a miracle. So then I'd not only be scared, sad or angry, but also frustrated and down on myself as well - not a great combination! I haven't managed to stop those thought processes, but at least some of the time now I can recognise them and detach myself to some extent so that I don't get so caught up in them.

Before I started the course I guess I'd had some vague notion that practising mindfulness would turn me into a totally serene individual who was never thrown off balance by anything, who never felt strong emotions, who accepted whatever life throws at them without trying to change it, and who always saw the silver lining in everything, no matter how bad (and who would probably be extremely irritating!). It took me a while to realise, with a mixture of disappointment and relief, that that's not at all the case. Instead, as I understand it, it's about accepting that whatever's happening right now is what's happening right now, and that's OK. I can still decide to explore different ways of looking at it, or taking steps to change what I can, but I can separate out (at least some of the time) what's happening from my thoughts and feelings about it. To go back to the examples I used earlier, when I'm feeling physically under par I've found it very grounding not to judge myself for how my body's feeling, but instead to remind myself: "I'm feeling x y z discomfort, and some anxiety about it, and that's just how things are right now". The physical experience is still the same, but it removes a great deal of the fretting and angsting about it, and about what might (or might not) be going to happen in the future. And that definitely opens up the possibility of noticing other things in the here and now which might be more pleasant, rewarding or satisfying.

Another key thing - which I've known about intellectually for a long time but have only recently started trying to incorporate into my thinking - is the idea of impermanence: that everything, good and bad, inevitably changes. Trying to cling onto the pleasurable times, and protesting and railing against the unpleasant things, are equally misguided. I've found this really helpful for trying not to get caught up in nostalgia for my pre-cancer life: I can complain about it all I like, and feel hard done by and tragic, but it's a waste of time and energy because the reality is that my life has changed - as everyone's does throughout their lifespan - and this is how things are now. And now is all we have - it's the only time there ever is. I don't have to like it, but accepting that this is how it is stops me (at least some of the time) from metaphorically banging my head against a brick wall and saying like a spoilt child, "but I don't want it to be like this!" It would certainly be a much more peaceful existence if I could let go of fighting against reality...

Of course, I still struggle with all this. Often it's only after a period of feeling stressed, upset, anxious or resentful that I can even remember any of these perspectives. And I'm rubbish at finding / making the time to practice - I procrastinate hugely, and come up with all kinds of reasons why it's not convenient to do some meditation now.

So, in spite of hoping for some dramatic epiphany where the meaning of life would suddenly fall into place, it's been much more subtle - yet still interesting and useful. Like good therapy, it offers a way of learning to observe yourself without slipping into unhelpful judgement and self-criticism, and I believe that's the space where learning, and creating new patterns, can take place. At least, I hope so!