Greetings all,
Apologies it’s been such a long time since my last post – it’s been a period of ups and downs, which should become clear throughout this post.
Right then, where to start?
Ipilimumab
Well the first thing to update you on is our decision regarding Ipi. So following that disappointing appointment at the Royal Marsden (described in my ‘long time, no write…’ post), we went back to clinic a fortnight later to discuss the issue further. We approached this appointment fully prepared to argue our case to go on Ipi – but the doctor that we saw presented a very convincing case against taking this option.
She confirmed that it was the consensus of the whole team at the Marsden (including the doctor who had been on holiday during my previous appointment) that Ipi was not suitable for me because of my pre-existing ulcerative colitis. She advised that she had not been able to find any examples of anyone with a condition like mine being given Ipi; she also cited examples of two of their patients who were currently in hospital, both suffering from severe colitis induced by Ipi, both on intra-veneous steroids, and one of whom they did not expect to recover from the colitis.
Weighed up against this risk was the seemingly miniscule potential chance that the drug would actually have any benefit. She explained that their typical response rate was in the region of five per cent – hardly an inspiring figure! And even then I was advised that I didn’t fit the profile of a typical ‘responder’, so my chances of gaining any significant benefit from the drug were even less than that.
In light of these factors, and after much thought, we decided to turn down Ipi as a treatment option. We felt that it posed too much of a risk to everything else we were doing in terms of our ‘integrative’ treatment approach – if I were to end up in hospital on intra-veneous steroids I wouldn’t be eating Sally’s healthy meals, wouldn’t be able to exercise, would probably have to stop taking supplements, etc.
And also very importantly, I’d only be able to see family and friends during hospital visiting hours, and my time with Saskia would be limited – there’s only so much time she would tolerate in a hospital ward (or be tolerated in a hospital ward!).
In summary, the risk of colitis and the negative impact this could have on everything else we were doing, both in terms of my ability to fight the disease and my quality of life, seemed to outweigh what looked like a very slim chance of a response. So after a lot of thought we decided to say ‘no’ to Ipi.
This was an incredibly difficult decision to make – throughout life you get used to the idea that if you get ill, you go to the doctor and they give you something to make you better. To actually walk away from a ‘conventional’ treatment option like Ipi (despite all the risks) and say ‘we are going it alone’ with diet, exercise, etc, was incredibly unnerving. Rationally we had been through all the pros and cons, and so had faith in our decision – but that didn’t seem to make it any less daunting.
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Life After Ipi
So that was it – back home from the hospital to fight this monster ourselves, with our regime of exercise, diet, relaxation, supplements, etc.
Since then life has certainly had its ups and downs.
While our integrative regime initially went well, we soon discovered the magnitude of exactly what we had taken on – fighting cancer had suddenly become a full time job. It wasn’t long before we were struggling with the time demands of shopping for and preparing fresh meals, juicing, walking, trying to fit in relaxation, etc. On top of the everyday demands of trying to manage a baby, a house, and the rest of everyday life, we found ourselves a little over-committed.
My previous treatment regime of sitting on the sofa eating scotch eggs and chicken and mushroom slices had certainly been less work, and definitely more enjoyable – although probably not offering as much towards the fight against the cancer.
While on the subject I have been amazed at the amount of admin that having cancer involves. Endless forms, e-mails between hospitals, appointment letters and planning, phone calls between hospitals, prescriptions, etc, etc. It has been truly incredible.
Fortunately just as we were reaching our wits end, we had a week long break in the Lake District, staying in a lovely cottage just outside Keswick with my Mum, Step-dad and Sister. This gave Sally and I a chance to have a bit of a rest, with all the extra pairs of hands to help look after Saskia. I personally didn’t manage to do much walking or photography, mainly due to tiredness – but we had a nice break, with plenty of good pub meals, a boat trip, and time to relax.
Unfortunately towards the end of the holiday I started to suffer with pain in my left arm (which we put down to nerve damage from the chemotherapy), and the pain in my back increased considerably, leaving me in quite a lot of discomfort. To compound matters I also started to suffer more and more from fatigue. By the time we were back home I was pretty much exhausted, and in significant discomfort if in any position other than lying on the bed.
And that has been the story up until now. The last few weeks have been very difficult – between the fatigue and back pain most days have been spent lying on the bed, in a half asleep stupor, watching endless episodes of Frasier, Futurama and the Simpsons on obscure Sky comedy channels (but not Friends, because Friends is rubbish, despite the fact that it is on ALL THE BLOODY TIME). The consensus of the doctors is that the physical and mental exhaustion is a side effect of the brain radiotherapy. I have to admit I thought I had passed the window for those side effects, but evidently not.
The consensus of those around me (ermm… mainly Sally) is that I have also been suffering from a little depression. I can’t say I was really aware of this myself at the time, but I can understand where she is coming from – it seemed to coincide with the period when I felt most mentally fatigued (obviously all that Frasier wasn’t doing a very good job of keeping my spirits up – perhaps I should have been watching Friends after all!). Looking back I can certainly say that over the last few days I have felt mentally more ‘with it’, and Sally seems happy that I am returning to my normal cheery happy-go-lucky self (actually I’m not sure she would go that far!).
Despite spending most of the last three weeks semi-comatose on the bed, an awful lot has been happening in terms of treatments and hospital appointments during that time. Last week on Friday I had radiotherapy treatments at Canterbury Hospital on my arm and back to try and help with the pain (yes, that’s right – it turns out the pain in the arm wasn’t nerve damage, but spread of the cancer to the bone in my arm). Excitingly this involved me getting my first three tattoos – they do a ‘CT planning scan’ beforehand to see the areas they need to target, and then they tattoo you in order to make sure that when they actually come to do the radiotherapy they are targeting the right place.
They give you a choice of what you want – so I went for an anchor, an England flag, and a big lions head. Obviously I am lying – all they did was tattoo three tiny dots on me. One on my arm, and two just above my trouser line, both of which I am currently too fat to be able to see without the aid of a mirror (not the arm, I can see that one – I’m not that fat, yet).
So far I think the radiotherapy has had some benefit – although like with the brain radiotherapy they tell you it can actually make the problem worse for a week or so. But so far it’s not been too bad, and I would say things have improved slightly. So I’m looking forward to next week when I should feel the full benefits.
I also have big news on further treatments – we have been to see another doctor at St Georges Hospital in Tooting, who specialises in both melanoma (among other cancers) and the immune system (anyone watching may have seen him on Newsnight on Monday and Tuesday nights). Given that I have melanoma, and an auto-immune condition, we thought he was worth a visit. So we have been to see him a couple of times, and he has prepared a new treatment plan for me, consisting of about four different medications.
After making that decision to ‘go it alone’ with the Ipi decision it is slightly strange to be back in the world of ‘conventional’ treatments, but it seems what he is offering poses significantly less risk than Ipi, and with hopefully a better chance of pay-off (although as with all these things, the typical response rates are not great). So I am due in hospital on Friday for another course of chemotherapy (but a different drug to last time).
That is assuming I can get there – today I managed to put my back out even more than previously, trying to pick up a towel from the bed, and so have spent this afternoon and evening lying on the bed, even more immobile than usual. So here’s hoping I am mobile enough on Friday to get in for treatment.
Before I finish I want to say my usual thank you to all who have sent messages of support over the period since my last blog. I know it’s been a long time, and it’s difficult for people not knowing what’s going on when I don’t write on here. And I’m sorry that recently I haven’t been replying to those messages, phone calls, etc – it’s not been because I didn’t want to, or because I don’t appreciate them – it’s just because, frankly I have been absolutely exhausted and not really up to it.
Right, I think I’ll leave it there for now. Now, can I make it to the bathroom without collapsing… tune in next time to find out.
Me & My Unwelcome Visitors: A blog about living with melanoma 