Hi all. Long time lurker, infrequent poster here. Been on this cancer train for over 4 years now and for the most part been very lucky to have a relatively normal life.
I have a scan this week to see if 3 cycles of pembrolizumab has made any change to my extremely rare type of skin cancer. It’s a complete shot in the dark and based on one paper my consultant found about a response in my cancer. I’m lucky to have private insurance through which I managed to get funding to pay for these cycle but anything further is not guaranteed and dependant on the outcome of this scan. My consultant says that it can take some time for a response and things can seem to get worse before they get better so it could well be too soon to know one way or another. If I’m not able to secure more funding I don’t know what my next options are as there is no approved treatment for my cancer.
ive had no side effects at all to the treatment which is good albeit disconcerting. I think I’ve started to get a bit of a tight chest and a very slight cough but it’s so light it could just be in my head because of the upcoming scan. What makes the scanxiety worse is that I think I also have a tender spot on my left collarbone and possibly a swollen lymph node. I say think because it’s not completely obvious and is probably not helped by me prodding myself too much. The paranoia about the collarbone stems from an mri I had last August. The consultant at the time said nothing but in the report that i was sent afterwards I saw a sentence on a possible lesion on the collarbone but was very small and not conclusive. Because I was scared finding out anything further I’ve never asked about it and taken the stance that they would tell me if it was something I needed to know.
Another complicating factor is that the insurance that I am dependant on right now which I get through work, has expired and I am responsible for the renewal and this is still in progress. Partly because of my ongoing claim, premiums have rocketed this year. We’re using a broker to negotiate with the insurer but until that’s concluded they will not authorise any further treatment regardless of my Scan.
The timing of these events happening together is so unbelievably stressful. I manage to hold things together pretty well to everyone around me but inside I am absolutely terrified about the week ahead and can’t stop thinking about all the what if scenarios at the same time as prodding around my Collarbone.
Want this week to be over so i know the results from this next scan but at the same time really don’t want to know because I have no idea what follows afterwards.
