The fun doesn't stop just because my bowel cancer is in remission. My stoma for life is compromised by a hernia my specialists are avoiding addressing though it is getting worse. My specialist has just changed the date of my next quarterly check up with him from February 20th to May 7th (a three month leap). I phoned his office to ask whether I am on the waiting list for a hernia op. Answer, emphatically not.
After my Gastroscopy throat camera examination, and on advice from various friends and medical folk, I contacted my specialist team to see about getting more information on my vaguely promised hernia removal procedure. I now have two hernias, a Hiatus hernia, only recently learned of by me through a letter sent from one surgeon to another but copied to me, and my longer established and expanding Paracolostomic Hernia right by my post-bowel cancer stoma for life. now the size of a large melon slice. After a 1st November CAT scan I was promised I was under serious consideration for surgery to remove the hernia and mesh it to reduce the chances of it returning. Though warned that they can come back and have complications the indication was that some kind of procedure would take place.
From 21st December 2024 onwards I was hit with severe gastric flux causing dehydration, severe vomiting, dizziness, stomach cramps, stoma constipation and stoma diarrhoea. Hospital and surgery visits led to my gastroscopy which largely confirmed what I already know.
My condition prevented me attending any Xmas and New Year events and the cancellation of three of my performance poetry events. Photo walks (essential to some of my publishable (I already have some in print) local pub history books, and a trip to Belfast in Spring, are now in jeopardy.
I asked why I’m not on waiting list for a hernia op and got a lecture on how they often fail rather than succeed and can cause even more gastric issues than I have already. Yesterday’s tests were cited as evidence for why I still need to be considered carefully before a decision on doing the op can be considered (the CAT Scan from two months ago now being rendered pointless). I asked why I have to wait until May to have even a discussion with my specialist on this and I was told (by his secretary even though he may have been in the office with her) that they can now fit me in on 1st April. Still ridiculously late given my discomfort.
I asked what my options are if the hernia op is not to proceed, only to be told bluntly, losing weight will help. That was it, though they did themselves say I should contact the PALS service who can, they said, authorise them to set an even earlier meeting event. In other words ‘Complain formally, so we can act on the basis of the complaint to do what we should/could do anyway without a need to waste time going through the formality of a complaint process. Being uninformed properly of my exact medical status (having two hernias, not just one, plus ASA II Systematic Disease (mild), Duodenitis (Mild) with patchy erythema. Activity and travel plans for the future now sound in danger of being cancelled big time.
