Longest month of my life , and sorry probably the longest post of my life. It’s awful that humans have to go through anguish like this.
I’m not brave nor a coward , I’m not an inspiration ( Irun is !! ). I am a thinker , well educated and a bit of a risk taker.
I’ve actually not wanted to post for fear of unwelcome comments, but felt this huge thread needed updating.
Not once in this 5 yrs post op have I had the luxury of a tiny psa nor a glimmer of hope cure-wise. Even the much refused SRT was always explained as unlikely to be curative , so I took the QOL path and have no complaints that the last 5 yrs have been a great adventure for us all. And the nicest little job as school caretaker that I’ve ever had ( but just decided to hand my notice in ).
So 5 long years of watching my psa go stupid , at least 6 CT and Bone scans and 2 PET scans , all with nothing to show until recently. A true case of micro-mets for sure with last psa months ago at 440.
I’ve had a bit of a cancer bomb go off inside me this last 6 months. Multiple spine , rib and a hip met. Two large abdo lymph’s which have decided to travel to clavicle and a lung also.
It’s been 2 weeks of long talks with Onco , GP , specialist nurses and hospice councillor. At this point you realise just how specialised and empathetic and supportive all these people are and how neutral they are with no pressure. My GP is director of palliative care at a local superb hospice and has already secured me a place there and counciling within a week. He’s known me 8 yrs solid and my 28 yr history of mental struggles and bipolar. Seeing the state of me at the moment he feels we should treat me and my fears and wishes , rather than just the cancer. Most councillors say there is no right nor wrong and that you have to make your own decision. Ultimately you aren’t responsible to anyone nor have to justify yourself to anyone. The buck stops with you.
A close friend lost his wife to breast cancer. He told me at the end she wished to hell she hadn’t had all the treatments and felt she had just wasted time ill and depressed , and all the blue lights and pointless invasive procedures sounded horrible. I asked my Onco to his face if he thought I was a tit and he laughed really loud. He said he way preferred a challenge with an educated couple rather than someone who just did everything he was told.
In the next few weeks I’ll be getting a large single palliative dose of RT to ribs and spine which should cleanly end all this griping pain I have. Other than that I’ve stuck to the plan. No HT and chemo not available anyway. Big family holiday booked and hopefully some lovely trips with my wife over the next year. That’s what I love most.
Sorry for the epic diatribe
Love and wishes and support as ever to all going through this