Let me start by explaining that I've just passed my second 6 month MOT after having my Cystoprostectomy in October 2023, & all is well, so much so that I sometimes can't believe it was me that was harbouring that vicious cancer during 2021 to 2023. Happy days!
Before the first of my negative observations, it's important to thank Macmillan for supporting this forum, as it was truly a Godsend during my experience. Sadly, the same can't be said for the so-called "Macmillan Cancer Support". I first experienced their conspicuous lack of support some years ago when my Dear Wife suffered colo-rectal cancer. Her care at the Royal Marsden was superb, but Macmillan were conspicuous by their absence I fear. This time for me, the literature I received, along with their stoma mock up was welcome, but their actual counsel on addressing what I would possibly have to accept in recovery was absent. After the event I had just one visit from a nurse, which frankly I could have done without, & not a word out of them since!
My reason for detailing this is in the hope that they might sit up & actually start to take note of the many & various recovery experiences they have attended with their patients. However, to be fair, they did put me in touch with a patient who'd just gone through the journey I was about to embark on, which was very helpful, especially when he described his time on the recovery ward as "hellish". I wasn't sure what to make of this, until I was there myself. Were I a 'prisoner of war' I suppose it would have seemed OK, but I wasn't & the lack of any compassionate care for my very uncomfortable condition was dreadfully upsetting, so much so that when my family visited, they couldn't believe how low I was. The stoma care (Macmillan) nurse adopted the style of Hattie Jacques's Matron, which didn't help. She meant well, but was totally insulated from what my condition & state of mind needed, only referencing repeatedly "you can't go home until you're able to change your stoma pouch to my satisfaction!". Suffice to say, that lead to several days of absolute terror, not helped by the night nurses leaving the lights on until all hours. There was one absolute Angel of a senior nurse who would appear occasionally, which gave me something to look forward to thankfully!
Finally, after 7 days & nights, I was released, no cheery bye byes, no well wishing, nada, zip! Then I was back with the world's best nurse, my Dear Wife, who became & remains my absolute rock, proving that familial care & support is truly a bonus.
My Consultant Surgeon, Rami Issa, did a brilliant job & has been a great source of comfort during my 3 visits with him since, so long may he treat patients yet to emerge. I'll never forget his final recommendation, "who needs a bladder like that, let me take it out & you'll be 90% cured!". That gave me so much confidence & allowed me to remain strong during the events described.
So, in conclusion, to those on whatever stage of the journey I say, reach back into this forum for whatever is going through your mind, or how you feel, I for one & many others here will certainly be here for you, good luck!!!!
