For the first time ever I almost had a panic attack. Having been reasonably calm for the past year my body betrayed me as we drew up to the Edinburgh Cancer Centre at the Western General hospital, and I was shaking so much I didn’t think I could pass over the threshold. Robin conceded later that he had been most daunted by all the “comfy furniture” – the obvious attempt to create a comfortable environment was so alien to the normal NHS experience it completely unnerved him.
Over two hours later we walked out with a bit of a spring in our step. We had spoken at length with a registrar, Christy, and the clinical consultant, Duncan, both of whom were amazing and had a completely transparent approach to delivering information. From the beginning they admitted this would be a “complicated conversation” due to what I am going to call the Papillary Factor. The crux of that is that I face three options:
1. They prescribe Sutent which is the ONLY option available to NHS Stage IV kidney cancer patients in Scotland. They admit this has limited success on papillary patients.
2. They apply to the local health authority for special funding to administer temsirolimus, which I would receive by injection once a week. This drug has reported good stats on holding the cancer at bay in papillary cases but they actually think they have close to zero chance of getting this application approved – especially in the current public health funding crisis… Duncan admitted that every request they have ever made has been turned down.
3. They think I would have a good chance of getting on a current clinical trial for everolimus - a trial for 12 papillary patients which has been running since last summer and is still recruiting. Everolimus is reporting great results against papillary cancer but is still at trial stage. The downside to this is that it is not open in Scotland. They asked if I would be willing to travel to Manchester to participate. We had no hesitation – of course! Everolimus (I’ve since checked and the brand name is Afinitor) is administered orally. Participation in a trial would mean I would travel up and down to Manchester once a fortnight for the first three months and then monthly thereafter. It’s a no brainer as far as we are concerned and we are pinning our hopes on this option.
If I am knocked back for the clinical trial then things look bleak. We asked about self financing – we had wondered if you bought temsirolimus privately could the NHS administer it? Nope – the treatment around administering the drug would all have to be private although you would still have access to the NHS for other elements of care, e.g., scans. Duncan reckoned it would cost approx £30,000 a year - they said they would hate for us to have to do that. We would hate that too! Robin pointed out we don’t actually have any money, or a house to sell, but we will do whatever we have to do to raise the money. Mind you, we haven’t really thought that through yet – we’d make lousy criminals and a vague initial plan on the bus home to get 200 people to give me £10 a month (this seemed an attainable ambition) quickly became unstuck when we realised we probably don’t know 200 people, let alone 200 people willing to give us £120 a year!
Christy reckoned we should probably make contact with a Macmillan nurse now – the support they can give has a proven impact with people living longer, and apparently they can help with “your dying”. Lots of staring at feet and the conversation quickly moved on.
One very positive feedback was that we CAN go on holiday to Estoril on the Lisbon Coast in two weeks time (we are flying out of Edinburgh airport on the day the Pope is flying in apparently). Yipee! Consensus all around that this would be a good idea. In the meantime Christy will try to arrange a bone scan to take place before we leave, they will put in a funding application and try to find out if I can get on the everolimus trial and we have an appointment to go back on Tuesday 14th Sept. I am so relieved that we can go on holiday – and this means that my mum and dad can go ahead with their plans to stay for a wee while in our flat in Portobello while we are away. This is great as my wonderful mum is currently completing chemo for breast cancer and a little seaside break is just what she, and my dad, who runs their household like clockwork, need before she embarks on a rigorous round of radiation therapy, which she will get in the same Edinburgh Cancer Centre. I just hope that she doesn’t feel as nervous about arriving there as I did today.
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