June 22nd 2022: meeting with consultant urologist at the Victoria Hospital in Kirkcaldy where I was told that surgery was not an option because of the danger of leaving some cells behind requiring Salvage RT.
I also signed the consent form for HT and discussed Options on RT, which were 20 sessions of RT plus possible an HDR Brachytherapy boost. I didn’t find him very empathetic and helpful, perhaps because surgery had been ruled out. Anyway, at least I am now signed up to start treatment. Given Bicalutamide tablets to take for 4 weeks with my first RT injection in 2 weeks.
July 6th 2022: Here we go…start of HT. Appointment at the Vic for first Prostap3 injection. Injection in the left side and CSN explained that they do it on alternate sides.
Fairly uneventful, no pain or discomfort after it and feeling fine.
July 22nd 2022: Meeting with Oncologist at Western General in Edinburgh. Much more forthcoming than the urologist. He informed me that HD Bracytherapy Boost in addition to RT had been ruled out because my flow rate was not good enough. I mentioned that it wasn’t long since I had my biopsies when I had the flow test, so it was agreed I wou”d have another flow test ASAP.
Then he spring something new on me…the option of having 37 fractions rather than 20, where they would treat the whole pelvic area to include the locally lymph nodes, as well as the prostate and Seminal Vesicles. This completely threw me as nobody had mentioned this before. He indicated that the side effects would be worse but I could reduce the chance of recurrence, although there was no clear evidence that this would be the case. I said I needed a short time to think about this with my wife to discuss and it was agreed that I would contact my CNS it’s my decision.
July 24th 2022:
Contacted my CSN to say that I had some questions I would like answered by the Onco. Also to arrange another flow test. She said she would contact the oncologist. She tried this several times without success. I get a bit frustrated because I am ready to make a decision on treatment, I just need my questions answered to make that decision.
Aug 1st 2022: Severe anxiety kicked in, finding it really difficult to get out of bed in the morning. I have to sit with my wife for a considerable time just to get out of bed. She is so supportive to me, don’t know how I’m going to repay her. It gets better as the day goes on but it’s so debilitating, I just can’t function at all.
August 4th 2022:
After reading this forum and other peoples experiences, it appears that Sertraline has greatly improved their mood so I’m going to phone my GP and ask to try it. He thinks it’s a good idea so prescribed me 50mg to be taken once per day. He warned me that it will take several weeks to be fully effective.
Aug 7th 2022: Due to fly out to Fuerteventura to our holiday home today but just can’t face the airport and flying. Luckily it was a Ryanair flight and didn’t cost much so will just have to right it off.
Aug 14 2022: After a few days on Sertraline I feel a bit better and feel I can cope with the journey so we rebooked and fly out to Fuerteventura today. A bit apprehensive but all went well and got our place in paradise to enjoy some sunshine and relaxation.
Aug 18 2022: A letter arrived from The Western with another appointment with the Onco…..on 25th November, 3 months away. I have no idea why I can’t have an appointment sooner so decide to speak to the CSN to see if it can be brought forward. I just want to make a decision and then get on with the treatment ASAP. I’m now thinking it may be next year before my treatment starts, which will be after 6 months on HT….maybe that’s no a bad thing?
Aug 25th 2022: Returned to Scotland after a good rest and chill. Palpitations are now greatly reduced but still felt really anxious during the holiday. Didn’t do much, just couldn’t face it and still find it difficult to get out of bed in the morning.
Mid September 2022: Anxiety greatly improved. I feel much happier all round despite still now word from the Onco or answers to my questions about the treatment. I’m really impressed with the Sertraline, it really has helped me deal with the situations which would have brought on anxiety.
hot Flushes still a real problem though. I’ve read some reports that Sage Leaf can help so I’m off to Holland and Barret to get a supply.
Oct 5th 2022: Second Prostap Injection, this time in the RHS of the belly. PSA down from 36 to 3 which they are very pleased with. Spoke to the CSN about having to wait until 23rd November for another appointment and said she would follow it up and and try and get it brought forward.. I’m getting really frustrated now…it’s coming up for 3 months since my meeting with the Onco and still haven’t managed to speak to him about the treatment.
Spoke to the CSN about the Sage Leaf and she said they can help some people. I haven’t really noticed much difference, perhaps they have eased slightly but not enough to give me back enough QOL, will give it a bit longer and then investigate acupuncture.
Oct 23 - 9th November
Another trip to Fuerteventura- this time feeling much better and able to enjoy it. Again didn’t do much, lots of walking and enjoyed some lovely food and drink as well as sunshine. The weather is amazing, sunny every day with no wind which is unusual for Fuerteventura.
Flushes still an issue but no worse in the heat. They seem to start by a change of temperature. One day in the local Mercadona, I went into the freezer to get a bag of ice and WOOSH! Sweat pouring off me, quite embarrassing.
Had a great time though, hope to be back soon.
Nov 23rd 2022 - finally meeting with the Onco. This time two of them for good measure. I asked them the questions I had prepared 3 months ago. From the answers they gave, although leaving the choice to me, it was clear they were pointing me in the direction of 37 sessions. My wife and I looked at each other and immediately nodded to each other without any hesitation….37 sessions it is and I’ll deal with the side effects if and when they occur. Decision made at long last….very relieved about this and feeling good about it. They said it would be the New Year before treatment started but I might have the gold marker seeds implanted and the CT Planning session before the end of the year.
Dec 6th 2022: First acupuncture session. Hoping this might help with the hot flushes. Really enjoyed it and came out feeling good. The acupuncturist was a really interesting character and very interested in me and how I was feeling.
Dec 7th 2022: Letter arrived posted on 28/11/22(thanks Royal Mail!) saying my gold marker seeds were to be implanted on the 8th December, the day after I got the letter. Still at least don’t have time to worry about it.
Seed implant 8th December
CT Planning scan 15th December
Radiotherapy starts 16th January.
Dec 8th 2022: appointment at Wester General to have Gold seed implanted. Biggest problem was finding. Parking space. All went fine and they inserted 3 seeds, one on each side of the prostate and one at the top, forming a triangle. Certainly felt them going in but not bad at all. Given 3 day course of antibiotics to take and told not to lift anything heavy for a few days. Felt slight discomfort in my pelvic area for a few days but it passed quite quickly.
Dec 14th 2022: Second acupuncture session. A lot more needles this time but still comfortable and again came out feeling good. I haven’t noticed any real difference after the first session but I know it can take 6 sessions to work.
Dec 15th 2022: CT Planning Scan. Western is good when attending for Cancer Treatment as they have designated parking and a security guard directs you a free space. Had to use an enema on arrival then drink 3 glasses of water and wait 30 minutes. After drinking the water I managed to convince myself I wasn’t goi g to be able to hold on that length of time, so I downloaded solitaire to my phone and completely forgot about the time until the radiographer called me in for my scan. All went well and I was on my way home within 30 mins.
Dec 21st 2022: PSA Test in prep for my next Prostap3 injection. Because of Christmas, won’t get the results until the 30th December. Hoping it might be done below 1 from 3 last time. I now know what Range anxiety is and it’s nothing to do with EVs!
December 28th 2022
3rd acupuncture session. After my last one I noticed a distinct improvement for a few days but then it tailed off a bit, but maybe it’s beginning to work?
Dec 29th 2022: Tried Viagra for the first time ever and it worked! Only problem is with No Libido, what do you do with it? Weird! Much prefer just being close to my wife with lots of cuddles and outercourse.
Dec 30th 2022: PSA result back. Down to 1.6 from 3. I’m a little disappointed it didn’t fall down below 1 but maybe I’m just being too optimistic?
Dec 31 2022: flushes have definitely improved, less severe and frequent. They now mainly only happen due to a change in temperature.
This has been an awful year for my wife and I and not just because of my diagnosis, so many personal tragedies and sad events. Here’s hoping 2023 is better