Life one year on from diagnosis

Hi all. and I hope you all managed to have a happy and enjoyable Christmas.  

 My details are in my profile but briefly, just before Christmas 23, I was diagnosed with T3a 16 of 26 biopsy samples show cancer, Gleason 4+5 = 9 GG5, CPG5 (We didn't find out it hadn't spread until the first week of January so, Happy Christmas pal!) Luckily, according to scans/tests etc. it hadn't spread - despite the cancer being extremely aggressive and having burst out of the prostate (capsule) - it looked like a cauliflower floret on the scan and I thought for a short while that my days were numbered!

My wife, who has a chronic condition of her own to deal with, took the initial diagnosis very badly.  I found her being so upset was dragging me down emotionally and it took some realising how worried and scared she was feeling and supporting her loads before she started to feel better. However, as time went on she's managed to accept the situation now and she's supporting me. 

I was asked if I wanted to take part in a clinical trial? To which i answered; do bears......?  

So, I was put on Bicalutamide tablets on the day I was diagnosed and after 3-4 weeks, I had my first Zoladex implant - I've been getting these every three months. I had a 'pre-pre-op' appointment at the back end of April this year, where was given a date for a 'targeting scans' for SBRT which followed quite soon after. I had my 5 sessions of SBRT.  I won't sugar coat it, I was in some pain after the 5th session but, it went away after about 2 weeks

OK, how am I feeling??  I have noticed that I'm tired quite a lot and I have short periods of exhaustion (not the same as 'tiredness'. The only way i can describe them is like being the other bunny in the Duracell advert) However, they go away after about an hour.  I have also identified mood swings which came more frequent as a result of the hormones - i have to consciously think when i start to get crotchety and say something hurtful - this is working well. My sleep is regularly interrupted and I had the classic pee issues of slow-flow and not felling that my bladder was empty then not very long after, needing to go again (several times during the night too!). I mentioned this and was prescribed Tamsulosin to help reduce the prostate swelling that restricts the urethra (pee pipe).  At first, there was a marked improvement but, I'm still having some issues with regular peeing and having sleep interrupted by needing to go for a pee. The consultant doubled the dose of Tamsulosin for a while after my SBRT and I'm now back on the original dose. I have PTSD (treated by another agency) and I'm neurodiverse, consequently, this lack of sleep has undone some of the long term and prohibitively expensive treatment I had for these conditions. I get regular hot flushes and i have a fan by my bed to cool me down when i can't get to sleep because I'm sweltering!

One thing I noticed after starting the pelvic floor exercises - 4 weeks, doing them regularly several times a day was; I started to feel an ache in my perineum and feel some minor abdominal pain. I raised this at the next catch-up with my assigned MacMillan nurse and the next exercise session and was told to cut back on them.  I don't feel the need to carry on with the pelvic floor exercises now, as I've never leaked or dripped and haven't any issues with incontinence.  I do a full bladder empty nowadays and boy, do I appreciate it! :-):

I was warned about PSA 'bounce' and that it's not unusual so, shouldn't be taken too seriously if it happens, luckily, it hasn't.  So, a year later and PSA tests have been encouraging. The last two PSA tests were 0.15 and 0.02 so, I'm happy with that.  

I still get some outrageous hot flushes and i have a theory (ok, I'm not medical but i know how to identify a trend or pattern).  So, my hot flushes tend to come just before, or just after I feel the need to pee.  I'm trying to go as soon as I feel the need, to see if peeing will 'head it off at the pass'.  

To put this into context, all of these individually are 'inconvenient' rather than 'troublesome'. However, combined, they do have some effect on my quality of life. I'm not at my 'wits end' by a long chalk but, these issues are discussed with various (Mac nurse, consultant and GP) during scheduled consultations and my catch-up reviews with the cancer researcher.

I try my best to carry on as normal (whatever normal is), despite, the fatigue and hot flush 'hits', life isn't so bad.  My youngest got married this year and his new father-in-law did a marathon to raise financial support for those who struggle financially to attend treatments.  This Christmas has been excellent, despite the mother of all colds - made worse by being a little immunocompromised.  My wife says; I don't understand you, you're like; 'cancer? Meh, get on with it' but  a cold and oh, my goodness! look at the poorly little soldier Haha!  

So, that's me over the last 12 months.

I wish you all a Happy New Year

Cheers,

Axel