A NEW TREATMENT REGIMEN

When I got back from Greece I had a meeting with a doctor at the Marsden. Once again it was someone I hadn't met before, but this time she was a consultant and instead of just feeding back the decision of the team (which was what mostly happened before) we had much more of a dialogue, which was great. She told me that the team had spent a long time thinking about and discussing my case, which was very reassuring - the disadvantage of any large hospital system is that it's harder to feel seen, let alone cared about, as an individual, so it was good to know that they do assess each case attentively.

I'd been told last year that there were no other chemo drugs suitable for my condition, so I'd braced myself to hear that there was no more treatment they could offer. All drug treatments, even once cancer has spread, are based on the organ where the original cancer cells are from, so the problem with cancer of unknown primary is that there's a degree of guesswork in finding the right drugs - and as it's a pretty rare condition there aren't many research trials to draw on. So it was a huge relief to hear that they've come up with a new combination of 2 drugs which target the whole upper gastro-intestinal system (liver, gall bladder, bile duct, pancreas etc.), and which therefore have a reasonable chance of being effective wherever my primary tumour is / was. 

It will be systemic chemo (i.e. given intravenously), like I had from December 2010 to June 2011. The chemoembolisations I had in Germany target a specific tumour, which is why the side-effects are fewer, but you can only treat one area at a time, so now, as I've now got several areas of growth (all in the liver still), that's no longer an appropriate intervention. Also, while cancer is growing there's a risk of micrometastases (migrating cancer cells) in the bloodstream, which is how it spreads from one organ to another, so I now need chemotherapy which will go through the bloodstream as well as the liver to try and eliminate or control that. The doctor explained their rationale very clearly, answering all my questions, and it makes perfect sense to me. 

So, after consulting with Dr Herzog and confirming that he's in favour of this too, I've cancelled my planned trip to Germany (I was due to go this week), and instead I'll start chemo at the Marsden next week. Previously I would have been sad to lose contact with the clinic and miss out on the support from other patients, but I'd found the travelling and disruption to my life was becoming more and more wearying, and I've now established a group of close friends from the clinic who I keep in email and phone contact with, so I feel well supported. Also, as I posted in July, I was already looking into alternatives, so I feel very ready for a change of rhythm. (I'll keep Dr Herzog updated though and would certainly consider going back again in the future if it seemed appropriate.)

I'll be on a combination of Capecitabine, which is taken in tablet form for 14 days on, 7 days off, and Oxaliplatin, which will be given intravenously once every 3 weeks. The plan is to do 4 cycles (providing I tolerate it OK), and then do a scan and review how things are going. This combination is apparently usually fairly well tolerated, but as with all chemo drugs there are a number of possible side-effects - some a nuisance, and some potentially very serious. To my relief I won't lose all my hair, but as with the previous drugs, thinning of the hair is possible. It was horrible having my hair falling out and becoming really thin last spring, and now that it's all grown back to its previous thickness and health, I'd be gutted to lose it again. But I'll have to wait and see. 

There can also be some neurological side-effects which cause tingling, pain or numbness in the fingers and feet. This is triggered by exposure to cold, so you have to use gloves to take things out of the fridge, and wrap up warmly in cold weather. Usually this peripheral neuropathy, as it's called, is temporary and stops after the end of treatment, but it can cause irreversible damage to the nerve endings. That would put an end to my violin-playing days, so I'm certainly going to be very careful (they'll also monitor me closely).

More rarely, there's a risk that the windpipe can go into spasm and make you temporarily unable to breathe or swallow - again, this is triggered by cold, so you have to avoid eating or drinking anything chilled. I'll have to become very organised and take things out of the fridge an hour or two before I need them so that they have time to reach room temperature - I'm sure it will be manageable, but will take a bit of adjusting to.

So although I'm very relieved that this is available, I was initially quite scared about starting full-on chemo again, with the unknowns of how it'll affect me (and whether it'll work). I haven't asked but I'm pretty sure the sensitivity to cold will rule out going skiing (even if I feel up to it - nausea, diarrhoea and fatigue are other common side-effects), and I've felt pretty gutted about that: after a year of feeling relatively well it's tough to face the limitations this regimen will impose, and accepting that I'll have to take things easy. 

However, after a week or so of worrying about how it's going to be, and feeling upset about all the things which could go wrong or be distressing, I've realised that I need to just take things a day at a time. It's not always easy to do, but I'm doing my best to focus on where I am right now, and deal with things when and as they come up rather than worry about them in advance. It feels more important than ever to enjoy things whenever possible, and alongside the bleaker stuff I've had some really nice times (including a friend's wedding, some Proms, and a lovely Bank Holiday weekend in Edinburgh with my friend Amy). 

So I'm in a much better headspace than I was, and now I'm keen to get started. I'll post again once the new regimen's underway to let you know how it's going!

GREEK IDYLL

So with a bit of trepidation I went off on holiday to Greece, to Skyros, an island in the Aegean where holistic, creative and inspirational courses have been run from the Skyros Centre for 30 years (see http://www.skyros.com for more details).

View from the terrace of the Skyros Centre

Skyros Town from the beach

I did a course on "Life Choices" over 10 days, which was essentially an experiential group, run from a Gestalt / psychodrama orientation. It was intense and challenging, but incredibly effective and powerful. It focused on helping us become aware of our patterns, particularly in how we relate and communicate, and although I thought I knew myself pretty well I found it extremely enlightening. I've always found it hard to ask for or accept help, hating feeling vulnerable or not in control, and not only did I gain new understandings of the underlying fears and how those patterns play out, I also discovered new ways of positioning myself which allow different kinds of interactions. Over the 10 days I felt some very significant shifts, especially about letting go of what's outside my control and allowing myself not to have to be strong all the time -  extremely relevant for the challenges I'm facing back at home.

Although we all confronted difficult emotions and it wasn't an easy ride, the group was a very safe and supportive environment, and as a result of sharing such intense experiences we bonded very closely. I was very moved by some of the connections I made, both within the group work and in more informal conversations socially. There was also a writing course running alongside, and both groups mixed and socialised together; there was a real sense of community, with shared goals of living more fully and satisfyingly. It was great being among like-minded people who were interested in going beyond the superficial - but alongside this we also had lots of fun!

I also went to classes in creativity, involving a wide range of exercises in thinking laterally and spontaneously, using music, movement, drawing, improvisation, and experimenting with voice and body posture. These classes were great fun, with lots of laughing and shedding of self-consciousness, but they were also very thought-provoking, and made a great adjunct to the group work. There was early-morning yoga available (which I only went to a couple of times, as I need a lot of sleep) and afternoon massages (which I did take advantage of, having 2 wonderfully therapeutic treatments). 

With all of this, plus daily meetings, a trip to the local museum, and going to another town for dinner one night, there wasn't as much free time as I'd expected, and at first I struggled with trying to make the most of everything on offer as well as making time to replenish my energy. But I soon found a balance which worked for me, and the days settled into a very enjoyable rhythm. After the group course in the morning I sometimes had a siesta or read in the cool of my air-con apartment; other days we went to the beach, or had long lunches, and discussed ourselves, our lives, our struggles and our hopes for the future. 

Entrance to my apartment

Lunch at the beach

The island itself was beautiful, and although the weather was extremely hot it did mean I had to slow down both physically and mentally. By the end I'd completely let go of my anxious city to-do list mentality, and found it much easier to focus on, and take pleasure in, the here-and-now (a skill which I'm continuing to practice). 

It wasn't what I'd call a relaxing holiday - it was far too stimulating for that - but I hadn't wanted something which was simply a nice distraction, so I was delighted to find that both the course and the interactions were substantial and profound. All in all it was an unexpectedly wonderful experience, in a very special place, and I've come home feeling quite wowed by it all. 

Leaving the port at sunrise

CHALLENGING TIMES

After getting back from Germany I asked the Royal Marsden to compare my most recent scan from mid-July with the one done in January. I knew from Dr Herzog's feedback that there was a bit of deterioration, but I was shocked to discover that over these last 6 months there's actually been quite a lot of growth - in 3 areas of the liver, and 2 of those tumours doubling in size. It was devastating news and I took it hard, feeling extremely scared and overwhelmed. I've been lucky enough that since my diagnosis all the scans have been encouraging (showing small shrinkage or a stable condition), so this is the first time I've had to deal with bad news since the initial diagnosis. Back then I was so shocked and numb that I didn't really feel anything for several months, but this time I fully felt fear, in all its cold gripping visceral force - and it's a sensation which is pretty paralysing.

Initially the news also badly shook my faith in the German treatment - how cold they have not noticed the extent of the growth? and the fact that the chemoembolisations are no longer working? Chemo drugs, even when they're successful, will kill off only the cancer cells which are susceptible to that specific drug, and after that any cells which are left are those which are, or have become, resistant to it, so all drugs have a finite usefulness. I'd been told at the Marsden in spring 2011 that there are no second-line drugs for my condition, so I assumed that if the German treatment has done all it can, there was probably nothing further anyone could do. It was a pretty awful few days. On top of my fears about what the future might hold, I dreaded having to tell people that despite many recent comments about how well I was looking, actually things in my body were  falling apart. 

However I rang Dr Herzog, and he reassured me that the growth is likely to have been relatively gradual, a small amount each month, otherwise it would have been obvious to him and Professor Vogl, and that although clearly now a new treatment needs to be chosen, since my blood counts and general health are still good there's no need for panic. I realised then how I'd instantly assumed that I was about to fall very ill and might die within the next few weeks - perhaps an understandable reaction, but not necessarily accurate. Certainly almost everyone I've met with cancer has had treatments which work for a while, then they become no longer effective and a new regimen needs to be found - it doesn't necessarily mean the treatment has "failed" (or that the doctor's been negligent), it just reflects how cancer cells are always adapting and require new tactics for controlling them. Although of course deterioration can sometimes happen very quickly, more often it's quite a long process and there are many possible interventions along the way, even if they're all palliative. His understanding but very practical and undramatic manner helped me hugely by reminding me that although of course it's not good news, this is the nature of cancer, and going into "oh my God this is a catastrophe!" mode doesn't really help. 

I was due to go on holiday a day or two later, and had been on the point of cancelling it, terrified that I'd fall ill while I was away, or that even if there were any treatment options worth trying, by the time I got back it might be too late. However Dr Herzog told me that there was no reason to cancel the holiday, saying that I wasn't in any danger and a couple of weeks away wouldn't make any significant difference. Two of the nurses I spoke to at the Marsden when I was getting my blood tested said the same: have the holiday now before possibly starting new treatment (and while I'm still well) - after all, the whole point of trying to stay well is to be able to do nice things and enjoy life! So I arranged an appointment with the consultant at the Marsden to discuss treatment options as soon as I got back (I'll post again when I've worked out what the next step is), reined in the fear as best I could, and went ahead with the holiday. I'm so glad I did, as it was a wonderful break at a time when I badly needed something good in my life. See the next post for details!