I was diagnosed in March 2024, had a physical examination (Marigold job) then MRI, CT and PET Scan and was told I would be ideal candidate for HDR. So after receiving all the info leaflets I did some research into what was actually involved not just in my area but 2/3 other areas. It seems the whole process differs from area to area. As I was going to have the procedure done in the Brighton Hospital, West Sussex I called the depart for more details.
Apparently, the Brighton Hospital does not have a dedicated Brachytherapy, and I will be pushed around from department to department. With the prospect of 21 needles in my Perineum and being moved around I shopped around other Regions, It proved to be very involved to change so stuck with Brighton.
So, 1st August I had the HDR in Brighton Hospital. The Staff were excellent and very attentive and the initial parts of the procedure went well even though they had to push me around the hospital. However, after waking up from the mild General Anesthetic I found myself on a bed in a storeroom, where I was given something to eat and drink. As I had to be at the hospital at 7am this was welcome as it was now midday. I remained here with all the needles still in place and on a drip and Catheter while they programmed the computer with a plan for me.
Between 4/5pm I was connected up to the Brachytherapy Machine, which had been sitting next to me all the time...looking like a Jet wash machine. After having the needles connected the Staff leave the room and the Radioactive seeds are inserted into each needle consecutively for 3/4 mins each. The Staff return and kept me talking until the Consultant arrived to remove the manifold and needles. After a few breaths on gas and air He and a nurse placed their hands either side of the block and removed the block/needles in one go. After applying pressure with pads to stop the bleeding everyone left except one nurse. At this point I mentioned that the room temperature was really warm, they said it's because the Air-conditioning is turned off at 5pm and so they brought in a couple of Fans.
It's now 5/5.30pm and the nurse is checking the Catheter for fluid flow and blood clots, is just pink coloured and there are no blood clots and she asks if I clot easily? She decides with another nurse who has returned that they can take the Catheter out, at which point one supported my groin and yanked it out in one quick pull. The room temperature was now so hot that I started to faint as they sat me up to transfer me to a wheelchair as they had to push me through most of the hospital to a side entrance to wait for a Family member to collect me. The Staff were determined to discharge me that evening and did tell me there was no facilities for overnight stays.
While waiting the nurse waited outside to meet my Family member I started to get chronic bladder pain, I managed to wheel myself to a toilet close by, even the lights had been turned off in this section of the hospital. It's now 7pm.
I stood at a urinal in agony not being able to pee, after straining my pelvic muscles I managed to pee which included lots of glutenous blood clots, the passing of these was agonising.
My Daughter arrived as I returned and drove me the 17 miles home, this was 17 miles of agony with two stops to pee more agonising blood clots. Needless to say I didn't sleep at all that night and at one point was contemplating a trip to A&E with the pain of trying to pass more blood clots, the next 48 hours was very painful. The bruising developed on my undercarriage like bruising I've never seen before.
Having time on my hands I found that the last part of the whole process which had not been done was 'TWOC' 'Try with out Catheter'. This wasn't carried out by the staff, which is why I had so much trouble with blood clots after.
Apparently, the nurse should have waited longer for blood clots to come out via the Catheter tube first then remove it to see if I could actually pee normally.
I did make an official complaint via 'Patients know best' which was forwarded to the department Manager and and received an apology........would have preferred the correct procedure.
Apologies for the length of this experience, but I wanted to outline the whole days procedure for anyone else having it at a hospital not having a dedicated Brachytherapy unit.
If you have it done at a Hospital with a dedicated unit then you will be kept in for the night to make sure everything is functioning.
Since, I have had a month of Radiotherapy and which was hard work and very exhausting continue to have 3 monthly Hormone injections.
The side affects of all this in the extreme, are lack of energy and fatigue combined with hot flushes which are really starting to get to me. I am taking Morning Primrose capsules plus sage capsules and sage herbal tea, all of which do not seem to be having any effect.
Two or three times a night is still normal for pee-ing and I continue to take the Tamsulosin.
My last PSA test was 0.5 and Testosterone also very low, but then it will be with continuing Hormone injections. Don't think I can take 3 years of these.