Hello anyone who reads this!
I’ve been a member of this forum for nearly two years now, and although I rarely comment I have read conversations and threads avidly.
Back at the beginning of this awful journey, I found the knowledge, experience and generous kindness here really helpful and reassuring, even though reading posts from people farther along the journey scared me sometimes at what lays in store.
I’ve dipped in and out since then, generally finding myself back here when things weren’t going so well. It’s been quite some time, which means for us things have been kind of going ok, but now we’re joining the ‘running out of options’ club, and well - here I am seeking a safe space where I can keep a record of this time and know that there are others who understand who might read it.
I’m not really sure why I can’t just write it down in a journal, I think there’s something about placing my thoughts and our experience in a place specifically focused on the prostate cancer that crashed into all our lives and changed them irrevocably. I hope it’s ok to use this forum as a kind of ‘dear diary’ because I feel that’s exactly what I need right now.
But I’m not sure where to start. Should I give a quick outline of the last two years, or start with yesterday’s phone call with the consultant? Maybe I can do both. But perhaps I should start with who we are.
So, my name is Fran. My partner, and the love of my life, is Steve. And he is approaching the final months of living with prostate cancer. We don’t have a clear idea of exactly how many months, but it’s definitely not years.
He’s been through so much, his diagnosis was out of the blue (thanks to Bill Turnbull appealing to men to get checked, and my nagging) as he had no symptoms. From the initial PSA results of 7, which didn’t seem particularly high, or so we thought - we quickly learned a whole new lexicon, and that 7 took on a whole new meaning. Numbers started to rule our lives.
His tumour was a Gleason 9 (5+4), and even though things moved quickly and he had the RARP in August 2018, it was too late to stop the spread. His first PSA after the surgery told us that. He was away with his daughter who was visiting from Australia when he got the results, and I remember the phone call clearly when he rang to say his PSA was 8. He was really happy about it, as it had climbed rapidly prior to the surgery, so in comparison 8 seemed a great result to him. I remember feeling sick. And not saying anything. I didn’t want to ruin his precious weekend with his girl.
When he got home, I sat him down with a drink and told him straight that a PSA of 8 was not good at all. We both cried. And then on we went. He was put straight onto hormone therapy. I quietly put the £50 copy of ‘Saving your sex life’ away.
He had a bout of sepsis which put him back in hospital by a blue lighted ambulance. He had a stricture in his urethra which put him back in hospital in dreadful pain as the doctors couldn’t catheterise him and he had to be transferred to a teaching hospital. He stayed positive and hopeful, even when we found out the PETPSMA scan he needed wasn’t available on the NHS )it should have been) and we had to pay for it privately. We never got that £1,600 back despite endless letters to NHS England and our MP.
He has seven weeks of radiotherapy. We did the daily 60 mile round trips after he finished work each day. That held the progress of the cancer back for a bit. For his 65th birthday last year we went to Naples, we celebrated the day with a trip up Vesuvius, and then watched the sun go down amidst the ruins of Pompeii.
He continued with the Prostap injections. And then, gradually at first, and then faster and faster, the monthly PSA results headed in the wrong direction. From 0.06, up to 0.1. And then 2, 6, 19. Alarm bells were ringing. His consultant phoned him on a Saturday afternoon to explain that new interventions were needed. We picked up a prescription for Bicalutamide just as the government announced the country was going into lockdown.
The next PSA test a month later was carried out by a nurse dressed like an astronaut, in full PPE. The results came back that evening. 119.
Cue more urgent phone discussions with the consultant. A new prescription for Enzalutamide was issued, and after an alarming phone call with the pharmacy about all the possible side effects, and a further PSA test four days later (154) off I went to pick up a month’s supply.
That was two months ago. After the first four weeks things seemed positive (apart from the global pandemic, obviously). His PSA went down to 96. The pains and debilitating fatigue, the brutal hot flushes and sweats all were worthwhile. It was working.
Except it wasn’t. On Monday this week the latest PSA came back as 223. Yesterday we finally managed to get hold of his consultant. The conversation was realistic and honest. It’s months, not years now.
So, here we are. Clinical trials are a possibility. But Covid-19 might mean they’re not. Chemo is a possibility. But Steve wants quality of what life he has left. So that’s probably not an option.
Right now we’re both still very sad, a bit scared, both separately veering between trying to buck ourselves up and find the positives in this crappy situation, and buckling under the enormity of it. I know things will evolve as we process the information that we both knew but had hoped against hope wasn’t the case.
There will be more scans done in the next few weeks. He is continuing on the Enzalutamide for now. It’s going to be 32’ today and the sky is a brilliant blue. It’s all surreal.
I’ll come back to this safe space and keep telling the story of this time as we go through it. I don’t know if reading it will help anyone. I hope it might. But writing it down is helping me feel some order in this unreal chaos.