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.
Hi Annette Eddie & Minmax,
I’m writing this from Udaipur India - I made it!!
The day before I flew the pain was awful but I managed to control it until Delhi, where I developed a bladder infection. The minute I start taking antibiotics, the pain went away … very odd. No doubt my team will tell me why that happened but meanwhile I’m taking the gift 
. I’m managing about two thirds of the activities even though it’s not a challenging tour and having a great time. Thank you for your advice re travel - it was most helpful.
My friend who I am travelling with has been very understanding and I’ve been clear that she needn’t hang back or around if I’m having a quiet one. I’m getting very tired now and no doubt will need serious recovery time when I get home but am sooo glad I made it and didn’t chicken out and let the cancer stop me.
XXX Guilia
Hi Minmax 
I learned the hard way, after my immunotherapy I always go for a laydown. After a few hours I feel OK. I've just had my 50 round and if my next scan is OK it will be my last. Hi Lisa As you say positive all the time is hard, but we get back on the horse 
After a down day, day by day is the way to do it. I had lots of days were I wallowed ate snacks and cried. It's a hard journey we'er on and it's only natural. Spoil yourself. Be kind to yourself. XX
Moi
