I havent been here for a while but feel the need to let off some steam.
I’m 9 months into treatment after the initial stage IV melanoma diagnosis. I started on Pembro, which seemed to be working if slowly. During this time I felt really good, able to do things, people asked if I really had cancer, I looked and acted so well. Then, at my 6 month scan, the tumours had started growing again - the Pembro was no longer working. This was quite a blow given how I’d been feeling and the initial positive results.
On Monday I had my second combo Ipi/Pembro treatment. This treatment (and anything other than Pembro), is not funded here in NZ so it’s cost $25,000 + NZ which is a fair chunk when I’m no longer working and needing to use retirement savings to fund everyday living. There’s no government assistance available either because we do have savings. After the first dose I got every side effect under the sun plus it kicked the pain from my tumours into high excruciating gear. I’ve never been in so much pain or so miserable. The side effects aren’t as bad with the second dose but I’m still struggling with managing the pain and am now on both slow release and fast acting morphine.
I've always been a bright side of things, glass half full, optimistic person, but this is really hard. I’m finding that attitude harder to maintain in the face of the pain and resultant closing down of my world and what I can do. Then I start beating myself up because I don’t want to wallow in self pity or allow the pessimism to take hold. I’m also worried what happens when we run out of money. I really don’t want to sell our home - if for no other reason than it’s my main source of joy.
I have good days still but today is not one of them, today is a struggle day. This really is a rubbish place to be.
