• Lewis

Part Sixteen: IVE got a plan

Updated: Sep 26, 2020

On the contrary to last weeks post, which arguably showed the worst in our Universal Health Care system, this weeks post shows possibly the best. This week's fast-paced antics go a long way to prove my theory that once you are in the system, you are well looked after - it's getting there in the first place that poses the most significant issue. Especially for those who aren't able to navigate the NHS just as well as I can.


Blog posts typically are not as frequent as this. However, I have a feeling the frequency will increase. I'll take this opportunity to thank everyone for their kind words - the only emotion that can rival hope is love.


Since my last post, this week or so has been pretty eventful. Things have moved quickly - which can only be a good thing. The faster things begin, the better from a lymphoma point of view, this also rings true for my mental state, less time to think is equal to less time for you to attempt to control the uncontrollables.


Last Friday, we visited the Beatson for my PET scan. A pretty uneventful affair that was completed remarkably quick. That maybe thanks to the programme The Final Days on Netflix, which documents Barack Obama's last 100 days in office or perhaps just that it was a Friday afternoon in the middle of a global pandemic...


Monday, we were back again. This time to see a Dr Mackay about a clinical trial of a drug called Nivolumab, which acts as immunotherapy instead of chemotherapy. The idea of the trial is that if the initial "salvage chemotherapy" doesn't work, then you move onto this drug. The policy is to offer a trial to everyone. Nivolumab is used currently to treat a variety of cancers and works by activating your immune system to recognise cancer cells and destroy them like they should, whereas chemotherapy works by sheer potency. I signed up for the trial; I am still not convinced. It hasn't proved very efficient in HL later down the line, and I don't think now is the time to be fannying around for want of a better term. However, signing up now gives me more time to think about it, which I think is a sensible approach.


Today we were at Day Medicine, back in my humble abode of Forth Valley RH. I got a Hickman line today and was not looking forward to it. For those who are wheezy look away now. Under a local anaesthetic, they make a small cut in your chest and insert a long piece of plastic that sits in the jugular vein, which drains into the heart. The Hickman line stays there for the duration of my treatment and will be removed post-transplant all being well. It wasn't the most pleasant of procedures; however the diazepam helped. It currently feels like nothing but an inconvenience and I can't see that changing, but I'll post my thoughts later on if I've managed not to rip it out!


The greater powers have decided that I will get the regime called IVE as my salvage chemotherapy. I am glad about this as it seems to be the most successful from my research. IVE contains three drugs, but as usual, I'll do an explanation post.


I'm nervous, not going to lie. It is going to be hard, especially the fact I'll be an inpatient as you all know I love... Twinned with the fact that visitors aren't allowed. My most significant anxiety just now is around how quickly the lymphoma lump will shrink, and if will dissapear completley in time for a clean scan. As the lump is in my neck, I'll have a pretty good indication on what it is doing. However, control the controllables as I seem to preach these days somewhat.


Finally, as I said last week, hope makes the world go round. However, your messages of goodwill have shown me that hope is far more effective when combined with love. If love cured cancer, I wouldn't be in this situation. So thank you.