I updated my GoFundMe campaign at the beginning of the month so its probably time to put an update on here. Both this blog and the campaign get posted to facebook and people get a bit inundated f I do both at the same time!
I’ve been to Southampton twice now and I’m sure the treatment is working, I don’t have the pleasure of seeing tumours disappear anymore so all I’ve got to go on are the side effects. I’ve had a bit of indigestion and pain in my abdomen so I’ve started taking the stomach protection that The Hallwang clinic gave me again; Pantoprazole. I’ve also started taking Probiotics to make sure that my digestive system is working properly. I had no side effects whilst at The Hallwang but despite the high incidence of Colitis associated with immunotherapy drugs the NHS just give you the drugs with no protection.
It certainly isn’t the same standard or as relaxing as the Hallwang at Southampton Hospital, but the key thing is getting the drugs and not bankrupting ourselves in the process.
The other side effect that has just manifested itself is general itching and a rash that has appeared on the tender skin where I had my surgery and radiotherapy on the right side of my head. I had the itching previously (mainly on my stomach) but not a rash, so I’m heading to my GP tomorrow for some strong cream to sort it out. It’s apparently a good sign to get a rash as in trials on Melanoma patients, those that got a rash were the ones that had the best response. Fingers crossed!
Also launched this month was the Ripon Sailing Club naked calendar, an ideal Christmas gift for the sort of person that likes to see naked sailors! Ooh-err! I believe that well over 70 have now been sold and the profits will go towards my treatment costs, thank you Ripon Sailing Club.
So that’s the ups but there was a couple of downs.
My oncologist in Leeds had submitted an Individual Funding Request for the costs of the current round of treatment (around £31,000). Just before I headed off to Southampton last week I received an email from him telling me it had been turned down as my case was not exceptional.
He forwarded the letter and the application so I could see the two. The reasons given for the refusal bear no relation to the application details so I doubt it was even looked at. It had been approved at the local level in Leeds and both oncologists (Leeds and Southampton) thought it had a good chance of succeeding, but it was refused by some set of bureaucrats called “The IFR Screening Group”.
I’m not going to rant too much here as I’m going to do a full blog post about it in due course. I also might be getting some media coverage so I don’t want to preempt a journalist’s story. I am disappointed but it was expected, it would be interesting to see if they have ever funded anyone in this way or is it just a case of “Computer says No”.
The other down was the attitude of The Royal British Legion. If you remember, some time ago they refused an application via SSAFA for funds to help me get treatment. Their adverts keep appearing on my facebook page crowing about how much they help Veterans and eventually I got a bit sick of it so commented that they hadn’t helped me and gave a few details. A few other veterans did the same, well more than a few actually. The RBL’s response? They have blocked me and a good few others from commenting on their Facebook page and removed any comments that were critical of them in any way. If that wasn’t bad enough they responded to an old Army mate of mine who took them to task for their attitude by stating that they never do this and wouldn’t remove posts which is an absolute lie. The RBL is run by civvies now and has turned into the standard sort of charity where most of the funds raised go in costs and the salaries of the executives. They have also disassociated themselves from the RBL branches who are made up of Forces veterans who still blindly continue raising funds for them despite the number of branches that have had to close after the RBL sold off the buildings they ran from. It’s a shame really.
End of RBL rant.
Going forward, I have one or two more treatments in Southampton then in the New Year I’ll have another PET CT scan to see where I am, hopefully No Evidence of Disease (NED).
I’m also taking part in a research project in Southampton whereby they take a good quantity of white blood cells from my blood so they can see what my T-cells are doing. I’m patient number 9 but all the previous ones have not responded to immunotherapy so hopefully my cells will give them more information to work with. I’m not really looking forward to the process though, which is called Leukapheresis, I think it involves rather large needles and i don’t really get on with needles!