So after a really interminable wait, I finally started treatment last Monday. In reality it was under 4 weeks since I’d had the ‘bad scan’ at the beginning of January but it really did feel painfully long.
I met with my doctor last Monday morning and to my immense relief the terrifying Brain MRI was clear – being given the results made me pretty giddy and I think the nurse who was then looking after me during treatment probably thought I was slightly odd. The treatment all went very smoothly. Having spent so long on a blinded drug trial where every bag of treatment has the ‘drug name / placebo’ on it – it felt very strange seeing the names of the actual drugs and knowing that is what I was receiving. To be honest it’s pretty daunting seeing Ipilimumab and Nivolumab gently being fed into your veins when I know what hideous side-effects they can cause. However, a week on from the first infusion and I’m feeling pretty well. I’ve had a slight headache, have been a little tired and suffered an extreme amount of paranoia and hypochondria…… but generally all is well. I’ve been told that if I’m going to have a bad response to the drugs it’s likely to happen within the first 6 weeks so my fingers are firmly crossed that I sail through the next dose as well as I have the first.
The one upside of all the waiting over the last month has been that I’d totally got over my sadness about being very much back in the hospital system. I’m already used to it. I’m used to the fact that I’m going to be going backwards and forwards between home and The Marsden and having treatment really did feel very familiar.
Funnily the bits that I struggled with are to do with the move from the NHS treatment to private treatment. I miss the nurses in the MDU and the general set up – how the treatment chairs are arranged, silly things. I know that I’m hugely lucky to be able to get my treatment paid for privately and because this is the treatment I really wanted I’ve had to opt to do it this way but morally I really struggle with private healthcare. It frustrates me that the nurse to patient ratio is better and so my nurse was able to give me a much better sense about the timings of the treatment whereas previously that side of things has often been a little vague. Whilst the NHS nurses have always been amazing about spending time with me when having treatment they simply don’t have the time to come and update you about why there might be a delay or how long it’ll take for pharmacy to send the drugs to the unit when you first arrive. This seems like something that ought to be doable but somehow it doesn’t happen.
There are other differences – you get offered a menu to choose your lunch and they bring you tea and coffee when you ask whereas downstairs there’s a vending machine and whilst they do bring lunch round it’s pretty limited.
The main difference, and it’s the one that makes me most frustrated, is that when you’re seen privately you automatically see your consultant at every appointment. Whilst I understand that this is what happens when you’re essentially paying it seems very unfair. At my appointment on Monday, whilst it was very nice to see the ‘expert’ it really wasn’t necessary. We had a chat – we talked about the importance of patient advocacy and the process that drugs go through in order to be licensed – all very interesting but I could have had that conversation with someone else. When I was being seen on the NHS I met my doctor on my first appointment and then only met the senior doctors when I was admitted with side effects in april 2015 and when I requested to see one of them after the ‘bad scan’ last month. To be fair, for much of the interim period, my case was very straightforward. I was given the drugs, they worked, no problems, no need to bother the big doctors. However, there were points along the way when things happened that frightened me – the throat infection right at the beginning of treatment, the lump on my head, the beginnings of the side-effects throughout February to April last year – on those occasions I did ask if I could see the senior doctors but it was never possible. I genuinely feel like I would have benefited from their knowledge and experience but as I’ve said it as never possible. So, whilst I know I’m incredibly lucky to be able to access the drugs, to be covered by private insurance and to have access to the doctors I do feel like I’m sacrificing my beliefs – it’s a no-brainer as staying alive as long as possible is always my end goal – but I hate that the system is so warped.
Sorry for rant…. not sure quite where it came from but I guess under the circumstances it’s not surprising that I’m feeling a little angry with the world!