Today I celebrate a whole year of having Sally Stoma. It’s surprising the difference a year can make. Whilst it was the BIGGEST operation I have ever had, it has changed my life so much… and for the better!
This time last year, my operation was underway, it may of been a “routine” operation for my surgeons and the Da Vinci robotic machine, for me it was a life saving operation. Don’t get me wrong, it wasn’t a life or death situation however this operation WOULD improve the quality of my life drastically.
The quality of my life had been impaired by chronic pain, having a pee was painful, and it was constant trips to the toilet. Constantly waking up in the night, sometimes 5 or 6 times. Each time I woke, the Hubs would use the light on his phone to guide me. Neither of us had much sleep!
I would sometimes would wonder how I would get through the day, the hours felt so long, and trying to function normally seemed beyond my control! I tried to stay happy and appreciate the fact that, here I was still alive, despite my prognosis. I tried to stay positive and I even tried telling myself that I wasn’t in pain.
Think of the worse pain you can. Like toothache, it was constant, it was niggling, sometimes it waned. Sometimes it made me cry. It made me snappy, it took away my patience, it made living my life impossible.
I knew, deep down, that this was the only option I had. My urologist has already told me that I couldn’t keep having “turbts”. My bladder was in such a poor state, ulcerations that were not healing and causing me extreme pain. This was my only option.
I had barely slept, listening to the noise of the fans outside of my window and my anxiety levels were rising with each minute that passed. The Hubs and the Son has come over to see me, to show their support. All I wanted to do was cry but not in front of them. I had to show them that I really believed that this operation WOULD help me. Although at the time I didn’t believe it myself.
This photo was taken just before I left my room and walked down to the operating theatre. Nerves had set in BIG TIME!
The time had come, I walked down down to the theatre with my porter, who was very jolly and happy, said my goodbyes to my boys. The one thing that kept me going was that my wonderful Specialist Urology Nurse, Anita had asked to watch the operation, so I knew that I would see her friendly face.
Thank goodness Anita was there. I don’t think I have ever been that scared before. She hugged me and held my face with her hands whilst the spinal anaesthetic was given. Oh my, I had no idea that this was coming. I also had no idea that they would have to do this whilst I was awake and sitting on the edge of the trolley.
I remember saying “Goodnight” as the drugs were given through my cannula… then nothing until I woke up in Intensive Care.
The Hubs and the Son, tackled sorting out the garage, trying to keep their minds off what was happening. I cannot imagine what those hours felt like for them.
Thanks to my bladder removal, I am now living my best life, I am now “living”.
My quality of life is amazing, I get tired often, but who doesn’t? I am able to go out and meet up with friends. I can do anything I want to do without being hindered by pain.
I now promote awareness of Bladder Cancer and I take great comfort in supporting those who have yet to have their “Radical Cystectomy“. Yes… it is a HUGE huge operation and recovery can sometimes be slow, 1 step forward, 2 steps backwards but you will get through it.
To all those who are having to make this difficult decision or have just gone through it, my words of advice are…
- Take your time to heal and rest, listen to what your body is telling you at all times.
- Don’t rush your recovery, just because Fred was out and about after 2 weeks doesn’t necessarily mean you will be to.
- Take your painkillers until YOU decide that you don’t need them, don’t be a martyr and stop them too soon, you do not have to suffer and be in pain.
- Eat little and often, yoghurt, jellies, rice pudding. To be honest you won’t feel like eating much at all, your bowels will be adjusting to all the changes.
- Be prepared for that first bowel opening.. it feels very weird and you won’t have much control, this does take a while to sort itself out.
- Be patient.. Rome wasn’t built in a day.. recovering from a major op won’t happen overnight.
- Be kind to yourself, you WILL get back to being “you”, hang on in there, you HAVE got this!
- I found having a V shaped pillow helped to support me in bed, and allowed me to sleep in a “sitting up” position, which eased the pain.
My Big Fat British Bladder Tumour 