I was hoping I wouldn't have to post in here again, not on medical matters anyway.
It's been six months since I finished my Radiotherapy alongside Chemo, and initially, I was fine. the odd bit of discomfort, but nothing major - but over the past few weeks I've had nothing but horrible pains in my bladder area - from one side to another, in the centre, and now right across the top. I can only describe it as it feels like I've had surgery and I'm pulling on stitches.
I feel like pulling out what hair I have left (natural baldness, not cancer related!) as I feel like I'm getting nowhere with my medical team. I say team, as I use the word loosely, reasons for which I will come to.
My CNS - can never get through to them due to long term staff sickness, annual leave - calls not returned, nor emails responded to.
My Radiologist team - the most helpful of the bunch - but getting conflicting information ranging from 'You shouldn't be getting pain now, see your GP as you might have a UTI to 'It's perfectly normal, things are still settling down.
My Oncologist - new doctor, wasn't even sure what treatment I'd had, and when I'd had it. I had to tell him what was done and when. Very reassuring.
My Urologist - "I'm a surgeon, you need to speak with your Oncologist or Radiologist team".
My GP - "I will refer you for an Ultrasound, as this is beyond what I've seen before. If it gets to unbearable, go to A&E" A young fellow, and at least he's honest.
Well, it DID get unbearable a couple of weeks ago. Unceremoniously dumped out of A&E at triage stage and sent over to the out of hours GP who was rammed. Didn't get to see a GP but saw a nurse instead, who said she had no idea, and to try and phone my Urologist secretary next working day and arrange an appointment. So, quite evidently back to square one, as per above.
I have swelling in my groin, and it even worked it's way to the base of my man bit and that's swollen up too. Perhaps in a younger life I would have been grateful for that, but not so much now.
I'm still really bloody sore, hurts to pee, have done dip tests and had samples sent off, and it's not UTI.
Which leaves me to ask, have those here that have had radiotherapy had anything like this? Because I'm kinda getting sick of it, the not being able to get answers from those that should be giving me answers.
I do have a CT scan booked for 13th Jan, finally, after yet another cock-up where someone somewhere had forgotten to book my in for my post-treatment scan )you really couldn't make it up could you?) which I am hoping my give me answers.
Oh, and before I forget, Happy New Year to you all!
Hi Nick, and a Happy New Year to you, although it sounds as if things have not started great for you. I had radiotherapy. Fortunately I did not have the symptoms you describe, but I was warned that something like this was a possibility. Have you had a cystoscopy recently as you should be due for one? I had one every 3 months at first. Sorry I have no good answers for you, only to keep trying with urology. Best wishes.
I was waiting for you to turn up 
I had my Cystoscopy at the end of November, and did wonder if the other swelling may have been related to that - but over a month on, I'm not sure how it could be, unless it's just taking a long time to go down.
I did, however, have the pains in the groin start at the end of October, and it's really been pretty relentless since then.
Urology did say to me that I won't be called back in to discuss my CT Scan results unless they've found something, and they'd write to me if they didn't find anything.
So in other words, if a letter comes through with an appointment, time to start pooping myself! Bit of an odd way to do it in my humble opinion.
Hi Nick. Late response because I nipped out for a couple of pints. Thinking back, I did have some unusual and worrying pains later on after treatment. I had regular consultations with my urologist and I remember him poking around my abdomen but could find nothing. Things have faded in to a distant memory and hoping for the same for you. I was told long term after effects take years rather than months. The blood vessels rise to the surface over time and sometimes cause discomfort or bleeding. In most cases, not a problem. You can see this for yourself at flexi time. One thing I have picked up over the years is that regular nurses and GPs do not have much knowledge of bladder cancer, which is why I suggested trying to contact your urology staff. Best wishes.
