Fast forward a bit and I am to have a series of 6 BCG installations into the bladder –not painful, but not the most pleasant experience in the world. Oh yes, and it didn’t work as was shown at the next cystoscopy.
So I was faced with two choices to try again with the BCG or to go for bladder removal and it was decided that BCG was pointless as it had had no effect. It’s at this point I am sent to see Bill Turner In Addenbrookes hospital,(we are now up to June of 2009) – lovely man – he did a cystoscopy and by this time they have found cancerous cells in the neck of the urethra so he gave me two choices, well ultimately 3. I could go for a Urostomy, an Indiana internal catheterisable pouch or I could do nothing. Well, obviously the latter was not on the list. My initial reaction with no info whatsoever was, I don’t want a bag, “they show and they smell,” ignorant right? Well, I’d never even thought about bladder cancer and the thought of a bag filled me with horror. However, I still needed to get my head into gear and sort this out. So I started to read, I was given a couple of leaflets but that wasn’t enough info to make such a massive life-changing decision with. So I went to the Macmillan site and read up on there about both procedures and the more I read about the internal pouch, the less I liked the high chance of complications, the messing about with self-catheterisation, the training of the pouch to stretch it, oh yes and the very real possibility that I would need a Urostomy anyway. I wanted this to be a hassle and hitch-free as possible so despite my initial reaction I chose the Urostomy.
The op was done in Addenbrookes because at that point my local hospital simply didn’t have the capability to deal with such a huge op. And so it began. On 8th August 2009 I was admitted to a single room on the MALE urinary unit in Addenbrookes there was another lady in the room opposite to me who had also had the same op. I was absolutely terrified, anyone that knows me will not associate that particular emotion with me but I was most definitely terrified and I was certain I wouldn’t come out of it alive. But obviously, I did.
I passed a dreadful night –despite the sedation, early next morning I was taken down to premed and they inserted an epidural –this was for postop pain relief if it worked –I expected it to hurt like hell but it didn’t it’s the weirdest feeling, feeling your legs going cold and numb. Then I got the “good stuff”, the next thing I remember is being woken up. As it turns out straight out of surgery – by Mr. Turner tweaking my big toe and pushing a phone in my face. The surgery had taken twelve and a half hours and my husband was climbing the walls. I think he said Mr. Turner rang him 3 times during the surgery. I was now in fast-track recovery with a nurse literally sitting at the end of my bed monitoring my every breath. And the worst part was my mouth was so dry it felt it was full of sand. Gradually a probe was removed from my neck – I was glad of that- and after a couple of hours, I was taken back to my room. I was monitored constantly and all was well. I didn’t get out of bed for 5 days because of the epidural, but when that had gone to be replaced by oral pain meds I was out and about. I was into the hospital for a total of 9 days during the op they removed my bladder both ovaries, 20 lymph nodes, and my urethra. I accepted the stoma because plainly it was bag or box no choice really I didn’t fancy death so stoma and bag it was. My husband has no problem with it, he says he would rather have me alive and it’s just a part of me. 8 yrs later it doesn’t bother him at all.