There are pros and cons to writing a blog reflecting on difficult times. I plan to catch up and write in the present as I go forward, but I felt it was it was important to catch up properly first. So back to the pros and cons. The pros in my case are that I can reflect back and know I got through the difficult time of the wait for the surgery. The con is I forget how challenging it was. I’m a glass half full kind of girl but sometimes I need to be honest with myself and acknowledge that life isn’t always easy.
I did get through that time though. In no short part thanks to my amazing family and friends. Telling people you love difficult things is challenging because you don’t want to hurt or scare them, and because it upsets you, but they were brilliant and were so supportive and encouraging. It really helped. In the days after our meeting I kept much of the details of the surgery to myself save for family and close friends. It also gave me some more time to process my own thoughts. I knew that ultimately I was going to get through, but I just couldn’t imagine what life would look like living with one stoma let alone two. I really didn’t want to lose my bladder.
However one of the many amazing things the Marsden did for me was to arrange for me to speak to a former patient who had a very similar operation to me with the same surgeon. I can’t tell you important that was for me. I first spoke to her on the phone in early February. She’s about a year and a half ahead of me in terms of surgery , so near enough to remember what it was like but far enough ahead to tell me of how life can go on.
Whilst being very honest, for which I’m eternally grateful for, she was amazingly positive. Almost the most first thing she said to me was that she owed her life to Mr Rasheed and the staff at the Royal Marsden. She said she’d been given a second chance and that she was now more active than she’d ever been. This, by the way, is a lady in her early sixties.
At the time I wasn’t sure what exactly she’d had done so when I mentioned that I was probably going to lose my bladder, she said “Clare, I’ve had all that done too.. ” I could have cried. Here was a woman who was living a full and active life with two stomas. If she could do that then surely so could I. We spoke a little about what to expect in hospital but also of what to expect when coming home. This was something I really appreciated. I’m pretty independent and it took our conversation to help make me realise this was a time I really did need to lean on family and friends in a more practical day to day sense.
She told me that she thought it was important that we meet so I could see her. So we met up a few weeks later when we both had clinic meetings. It was so lovely to meet her and ask more questions. Nothing was off limits and we even sneaked to the ladies so she could show me her stoma bags and how discreet they can be. She told me half of the waiting room probably had stomas too. I would never have guessed. We shared stories of diagnosis and treatments and plans for the future and agreed to stay in touch. She told me that I could always contact her. No question was too much. She’s been true to her word and we plan to stay in touch always and indeed will meet up again soon.
Clinically, things were managed fantastically by my nurse, and I met all the various teams who would be involved in my surgery. They were all very patient and supportive as they explained what they would be doing. I was particularly proud to hear that the plastic team thought I had very strong stomach muscles too!! Thanks to my boot camp and PT trainers… those core exercises paid off!! In terms of the bladder, meeting the urologist was very important. It seemed that even if I did get to keep my bladder then it could still be problematic and I might eventually lose it anyway. I think that’s when I began to accept that life was not just possible with a urostomy but that I could flourish too. He told me of patients of his who were marathon runners!
I had my day procedure with my surgeon in which he performed the colonoscopy and OGD. It went well and it made him even more confident of getting all of the cancer. However he did take biopsies of polyps in my duodenum which is part of the small intestine. I already knew of these as they had shown up on earlier MRIs, but because they were not considered urgent no action had been taken. Mr Rasheed wanted to make sure that these were benign before moving on. If it turned out to be cancer then i would need other treatment before my surgery.
The short story is that they are benign. However at the time it was an anxious wait. Although the biopsies proved him right, ideally he wanted them out before surgery. This meant I was was referred to a gastroenterologist for another Endoscopy, only for him to rule that they were too big to be removed in an endoscopy which meant yet more surgery. Whilst being not cancerous his investigations concluded that they were the type of polyp that would eventually turn malignant. Another gift from my FAP diagnosis. He also found a large gastric polyp in my stomach. This left the team with a dilemma. Could they perform a resection on my duodenum at the same time as everything else? Ultimately they decided it would be too much in one sitting.
At the same time I’d been given a date of 30th March for my operation. However in a twist of fate, a surgical audit was scheduled for that day, so no surgery would go ahead. By this stage I just wanted to get on with the operation. Waiting was excruciating. I’d love to say I used mindfulness to help ease my anxiety but in reality those last few weeks were full of uncertainty and questions.
I was able to distract myself by going back to boot camps and catching up with friends. I was able to go out a little and let my hair down and to speak to family and friends about how I was feeling. With their support alongside my amazing cancer nurse specialists, I was able to rationalise that I would eventually have the surgery. And all of a sudden I realised it was indeed going to go ahead. The week before surgery I had my CT and MRI scans. This was a good sign, and indeed on the same Friday I was called in early to meet with Mr Rasheed before he left hospital for the day. As I got my notebook out ready to write notes he told me I wouldn’t need to write down what he had to tell me. “I’ve got a date for you. Are you ready for this? ” ” I think so” I replied. “Next Friday” he said. “Yes” I thought. “I’m ready”.