Hello, been a very long time since diagnosis, getting on for 10 years, but, still battling burocratic obstruction to obtain post op assistance for incontinence and ED.
Underwent RRP by Robot; 7.5 hours on the table, my Prostate was the size of an average mans’ fist; a lot of nerve damage resulting incontinence and restricted life-style with ED amounting to little natural ‘activity’ in erection capability.
Just over 18 months ago, after having to lodge a formal complaint with the Hospital PALS Team, due to complete inactivity in obtain assistance, and having to pay for pads, I underwent fitting of an ATOMS device internally to address the incontinence. The procedure was successful in that unless, I push hard in manual labour such as digging the Allotment, or try to be as active sports wise as previous to the op, within reason given my age, when small pads are necessary, there was a marked improvement, in that probably now 90% dry.
I should add I am a fit, recently turned 67 year old and apart from recent diagnosis of early on set Glaucona, am as healthy and not over weight as I could hope to be, at my stage of life, after a life time of keeping fit etc.
The ED issue is entirely another matter, however. After years of going through all the hoops one must to prove that I am incapable in that department, I got no further forward, Until recently. After more gentle but persistent persuasion, I was prescribed Caverject, which on its strongest ‘setting’ of 35-40ml is successful, but, as I have oft explained, the use of the Caverject for me does not permit a relationship with a partner, as by the time the ‘programme’ is prepared, rather like the old Amstrad games machines, the participant have long since given up waiting - not funny trust me and means I have been unable to sustain any intimacy with a partner for all this time, after several disastrous attempts in the early days, post op.
The situation is Difficult for an otherwise normal, healthy chap to manage. I have tried to bury that ‘urge’, but that route, led to all sorts of mental stress and issues. The Caverject, merely serves to prevent total atrophy of penile tissue, albeit I can achieve a dry ejeculation, when desperate.
Finally, over a year ago I was referred for Penile Prosthesis Surgery, but, have yet to receive any acknowledgement of that referral, even though I have politely requested such, now twice - no response to the first enquiry and still waiting for the second.
Now, my Caverject prescription has been arbitrarily terminated, over a month ago, and a recent appointment with my GP to discuss this matter, was cancelled, without prior notice on the day, and as yet no new date has been set.
There we are, not a happy outcome for an otherwise, successful outcome for cancer treatment.
I have to state, the Clinicians until a recent change over on retirement, have been absolutely brilliant, but they have clearly, been completely at the mercy, of faceless burocrats, who, for some reason, really seem to have it in for me. I am aware other gentlemen who , unlike myself have had no such issues with post op care, although one was forced to go private to address his ED, issue, similar to mine. I have now been indicated verbally, thus deniable, that I am unlikely to undergo this last piece of the post op repairs, due to the expense involved and the low priority.
I am not argumentative, or rude by nature, but, tried recently to complain to the NHS Commission. Today, I was informed after review of my case, there are no grounds for complaint.
I am grateful to the clinicians who literally saved my life; for sure I would have been long gone, however, the post op procedures in my case have not been followed through, properly and there appears no will to do so, or indeed, interest in assisting me to cope, either, early on post op, or, these days.
Why am I writing, partly to inform and partly to advise that if in the Portsmouth/Southampton catchment NHS area, please be aware, should you be unlucky post op as I was, you must be prepared to fight, with no guarantee of getting satisfactory resolution.
If resident in this catchment area for Prostate Cancer treatment you will receive absolutely wonderful, top notch, skilled treatment, however, post op issues that can arise, serious for the unfortunate, will not be any where near as proficient or caring, given my experiences, over the years, so please be warned.
End of the Road for me, it seems.