Trials and Tribulations

So the appointment to see Dr Greystoke in Newcastle came quickly and we went up to see him on Friday 15th July. We were both disappointed to discover he didn't star in the 1984 adventure film (he's also far too young!). Options for treatment are:

1. Do nothing, watch and wait

2. Have second line Chemotherapy

3. Have second line Immunotherapy (single agent; drug)

4. Be referred into a Trial (single agent immunotherapy and a PARP inhibitor)

(anyone else think PARP sounds like the noise a whoopee cushion makes?)

So, option 1 sounds like a crazy thing to do with a growing cancer and being 39 years old?! but a choice it is, regardless. Option 2 would be a stronger (more aggressive) Chemotherapy than the first one, which sounds grim. Option 3, single agent immunotherapy (Nivolumab), according to Dr Greystoke has about a 10% success rate. Option 4 is to be referred into a trial called MiST (5) a multi-arm stratified experimental therapy based clinical trial for patients with relapsed mesothelioma (try saying that after a few gins!). There are 28 spaces on the trial and it is the only trial I am eligible for at present.

So they are the options. But annoyingly....................

Double agent immunotherapy (nivolumab and ipilimumab); which has a far greater success rate (with at least one person I know of having been given remission status), has been authorised by NICE (National Institute for health and Care Excellence) to be given on the NHS for first line treatment only. This means I am not eligible for it as I have had chemo as my first line treatment, I am now onto second line treatment. Now, I agree there has to be standards and rules but howay! So they will authorise it for someone newly diagnosed who is 80 but not a 39 year old because they've had a previous treatment! (nothing against the 80+ generation obvs, I am your biggest fan!!) but come on. Anyway, as with all things, there is nothing I can do about it, I have to work with the cards I've been dealt. All my nearest and dearest said could we fundraise, but it's £40k per month for 2 years, that is just shy of a million quid! Even with a million cupcake sales and a few shaved heads we wouldn't reach that kind of money! So thats my rant :-)

In other news, there was a select committee meeting in parliament back in 2021 (you might remember my story was told and the picture of me shown was me in my xmas PJ's!), this was to lobby for the government to take action to remove asbestos from all public buildings within 40 years, it also requested a digital central register of said buildings so that people going in and out of them are aware of the danger. Yesterday (22nd July) the government rejected both requests, saying it would be more dangerous to remove it so best leave it be (plonkers!), when these buildings fall into a state of disrepair (which they will obvs!) that will be so much more dangerous, prevention is better than cure an all that. To say I am disappointed is an understatement! Livid!! But, in the last week I have been interviewed for the Sunday Mirror, and I have been interviewed for The Daily Mail, I've told them the craic and I don't plan on stopping there, so today, I have emailed my local MP and have also emailed ITV and BBC news, because honestly, shy bairns get nowt!!

I have also been trying my best to spread the Meso word and I have been interviewed for a 'Cancer Insight' journal which highlights hard to treat cancers, and told them my story too. https://www.teddy.eng.cam.ac.uk/cancer-sight-blog/june-2022-mesothelioma-and-me I have also been invited to speak at the national patient & carer conference in Nottingham, in October this year.

This cancer has one word associated with it that sticks in my throat, avoidable.

So, if there is anything I can do to prevent this happening to others I will, if you give me a voice I'm going to use it.

In other, other news, I bought a motorbike! it's so cool! Move over Carl Fogarty! (or maybe not, haha!).