Where to start?
I presented to the Urology dept. with a PSA of 5.1, I thought I was getting a biopsy that day but after a digital examination was sent back to my GP for another PSA test. This time it was 5.3 so I had a biopsy (some 2 months later). 2 Days before my appointment to get the results I was called by a nurse to arrange a bone scan and after consulting Dr Google I find there is only one reason for such a scan in a person with prostate problems so in effect I knew I had cancer before the specialist nurse informed me and I picked up on her annoyance that the cat was out the bag. Cancer had been found in all samples with a Gleason count of 7. I was scheduled for an MRI as well as the bone scan. The following week my GP called to see how I was taking the news, I have to say not well, he was able to tell me the bone scan was clear.
The MRI was some weeks later and I had appointments arranged with first the Urologist and then the Oncologist. I saw the Urologist before he had the MRI results but that didn't inhibit his keenness for surgery about which I read a considerable amount and had decided that if that option were available, if there had been no spread, that is the route to take since that cut the cancer out and read like it was a cure. A no nonsense sort of fellow I was left in no doubt I was facing temporary incontinence and permanent impotence. Robotic surgery wasn't an option in my area and in any event he preferred to “feel” his way around. I declined his offer to immediately sign me up for surgery preferring to wait until the MRI results and to first see the Oncologist.
The following week I had my first appointment with the Oncologist who with the benefit of the MRI results informed me that there had been spread and that consequently surgery was ruled out. I trusted this woman instantly, similarly no nonsense, she already had a cunning plan of hormone therapy for a year with radio therapy in a few months. I was surprised at my lack of disappointment almost as if my former preference for surgery and a “cure” did not fully appreciate the side effects. I felt relieved at having to face neither the temporary incontinence nor the permanent impotence and although the term cure was never used the words “very satisfactory outcome” were. She went into very fine detail about the treatments and possible side effects and I left with a whole set of her self prepared notes to absorb later. I felt relieved to have a plan and however bad the side effects were they can't be worse than incontinence and impotence, right?
Jury still out on that last question. During the Oncologist visit I had used the ultra stupid words “this couldn't happen at a worse time” but that was the reality. I had kept the news to myself and I seriously needed to offload. I'd went to two “support” meetings to find them both cancelled, I hadn't been to any before so therefor was not on any email list to be forewarned. I told myself it's a good thing that there was such little need for them in my area. Anyway after the preparatory two weeks of pills I had my first injection on Hogmany and my first, and so far only, hot flush that evening, it was a doosey but libation was involved and I spent the last two hours of last year sitting on a garden bench in a T-shirt. A few days later I told the biggest gossip I know and now everybody knows, that upon reflection, wasn't the best course.
Hot flushes haven't been a problem, the side effect that has is the mood swings, that's a misnomer, they aren't swings, they have been dives, there is no pendulum swing of elation, it's all downhill and that's the way until sleep comes. There are triggers and there are also no triggers, I can be set off by a charity ad on the tellie or I can be Zen like empty headed and my top lip will tremble, eyes well up and the next thing folks are moving away from me on the bus. I'm taken to dark places I didn't know I had and no matter how much I tell myself that it's the therapy doing this it simply does not help. No matter how often I tell myself this is self pity, that it is the therapy doing this to me, it does not help. There was always the thought that though it was the therapy causing it maybe it was tugging at already loose threads. The first three months of this year have easily been the worst of my life, it's like I haven't had a rational thought this year. I found it debilitating, I wouldn't inflict myself and my permanent dark cloud upon others. I became a recluse and totally unreasonably bit the heads off those who reached out to me and equally unreasonably had the most hateful thoughts about those who didn't.
My radio therapy started at the end of March, the nurses were amazing and I had weekly contact with my trusted Oncologist. I had several severe emotional bouts, one two hour weep on the bench outside the Maggie Centre but mostly I felt less inflicted if not better. I had the second injection at the sessions and had been told by two fellow sufferers in the waiting room that the second quarter was easier. I had all the side effects of the radio therapy, fatique, digestive distress, a little blistering but all those physical effects were a piece of cake compared to the hormone deficiency screwing with your emotions. My Oncologist proffered 5 mins of professional solace, my concerns were addressed and she pointed out that empathy feeds the emotional trauma, if anyone offered comfort it got worse and that I realised was so true. I started to feel better, I was in my second quarter, my daily 4 hour bus commute for 10 mins of therapy felt like I was attacking cancer for once and my PSA after week 1 was 0.6, if that were to remain consistent she would think about reducing it to only three injections with only one more. I saw her again last week, 6 weeks after radio therapy finished and she repeated that pledge though I don't yet know what the PSA taken that day was. Another MRI is scheduled for mid August to clinch the deal or not. My GP is, I hope, arranging for some CBT sessions but it's possible my cancer therapies will be over before that waiting list kicks in.
My apologies for my verbosity, reading these threads has given me great help over these months and I wanted to contribute, I wish it didn't read back as such self indulgence but I guess I'm trying to say that there is help out there, take all that your friends and family offer but definitely reach out to fellow sufferers, theirs is an informed and understanding viewpoint. I'm off out to my area's quarterly group meeting tonight.
Riddle me this
I've checked the shower drain, my bed sheets and my clothes. I know what causes my body hair loss but does anyone know where it goes?
Mike
PS Didn't post this last night, I was the only one to turn up to the meeting so I benefited from an hour long 1 to 1 with the Specialist nurse and I talked her ears off. The professionals know their stuff too.
Good fortune on your individual journeys and my gratitude for your sharing.