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.