So here we are, Wednesday 5th October and I am sat typing this out on my phone ahead of starting immunotherapy today. Honestly I am a bit sceptical about this, there is no guarantee it’ll work and if it does work when it will work, add in that last year the testing they did on the tumour removed during my operation they said immunotherapy would not suit me, I just can’t see how this will work effectively. The pain I mentioned in my last blog entry has also been getting steadily worse, still sticking with the lower back and right side, but now also spreading to my left hip, my bum and sometimes right in between my cheeks just below my spine, my current feelings are, if immunotherapy works, will I just have to go through all this pain again when the time comes to come off immunotherapy, because if so, there is a part of me that isn’t sure it’s really worth it, it’s horrid to go through and I can see how unsettling it is for my wife to see.
More about this pain, I am now on paracetamol, codeine, liquid morphine and morphine slow release tablets to try and manage it, however I am struggling to get on top of it and I am not really managing to sleep at all that well, which really doesn’t help me on a day to day basis. Last week I had to cancel seeing a friend as I just couldn’t sit down, it’s incredibly frustrating. I am not ashamed to say I’ve cried quite a few days just because I am tired of being tired and in pain, it feels like there is no escape. On Saturday morning just gone I unintentionally woke my wife up crying as I was just so done with the pain, again I wasn’t sleeping and it is becoming a real drain physically and emotionally on me. Another annoying factor on this is oncology have told me that there is nothing on my latest scan (end of August) to suggest why I’m in this pain, that is as far as it gets. It feels like I am being dismissed as being wrong, that I can’t possibly be in pain, I’ll happily do any test to find out what the issue is so we can find an explanation, but nothing is offered, I find that infuriating.
On a plus note, the final weekend of September myself and my wife managed to get away for 3 nights to the Isle of Wight to spend 2 nights with my wife’s Dad and then 1 night with her aunt. It was nice to get away from home and to a different part of the country (& the bit that is like going back in time) however the pain at this stage was beginning to creep up on me, both nights at the father in laws I had to go to bed at 8:30 as I was getting uncomfortable and just wanted to lie down. However at the aunts I was much worse, feeling out of sorts I had a lie down during the afternoon but then couldn’t bring myself to sit down for food, so literally ate a plateful of food standing up and had to go back to bed straight away. I felt so guilty keep going to bed early and struggling in front of people. I admit I have strayed away from the plus side, but it was great to get away and good for my wife to see her family, we survived two ferry crossings as we got used to being in a public place again, making sure we wore facemasks when inside, however we spent the journeys out on the deck for fresh air. We also got to the sea front at Shanklin which was nice, just a different bit of scenery.
Some plus points to help me with the pain, we had a meeting last week with Thames Hospice about pain management, they recommended getting the slow release morphine tablets to try, should I continue to struggle I can request to go into the hospice for a couple of days for them to work with me and see if we can get a regime together. I also have their occupational health worker coming to the house next week to see if there is anything they can suggest/offer to make my life easier/more comfortable at home.
