Saturday, December 17, 2011

Just like that, it was gone

I mentioned a couple of posts back that I had been preparing for my fourth surgery on 1 December. Was that really two and a half weeks ago?

My first surgery was on 20 December 2009. I had been admitted as an emergency after the tumour that was almost completely blocking my bowel decided to finish the job, and block it completely. There are no words that can tell you how much pain I was in at this time. It was painful to eat, to move, to do anything...excruciating pain that left me doubled up in pain and in tears. I had been in so much pain for the previous few months, and this felt like the peak of agony. I was expecting to have an ileostomy when they did the main surgery to remove my tumour, but that wasn't planned for another six months. When the surgeon suggested doing the ileostomy early, to give me a chance to get through the chemotherapy and to give my bowel a rest, my first reaction was relief. At last.

The surgery did not go well, and the surgeons had to do it again. 2009 was the Christmas I spent in hospital. Having something like an ileostomy is so strange that it is very hard to know how to deal with it mentally. It had been explained to me beforehand, but it wasn't until the nurse came round to mark my tummy that I fully understood what it was - and I was horrified. A piece of my bowel poking out of my tummy? Could it be any worse?

And yet...despite the mental somersaults required to get my head around biggest feeling was relief. The relief of being able to eat. The relief of not being in constant pain. The relief of not spending all my time being sick. Throughout the chemotherapy that followed, and the radiotherapy after that...I could only be grateful for what I had, rather than hating my stoma for what it was. Since then, I think I've coped pretty well with life as an ostomist. You see, I even got a label. There are societies and online forums full of people to talk to. I got a special nurse at the hospital. I got into a routine with washing/changing my bag, I found things I was comfortable to wear, and discovered that I could eat pretty much anything without any problems.

Two and a half weeks ago, I went back to hospital to have my ileostomy closed. This was my third date for surgery, but the first time I felt even able to do it. No-one was able to tell me what it would be like - 'every patient is different'. I was very scared, and perfectly willing to live with a stoma for the rest of my life. Why change something that works, right? The thing that changed my mind, ultimately, was that I developed a hernia around my stoma, which was starting to cause a lot of painful problems. The surgery would fix that as I might as well go for it and try the closure. If it really didn't work, my surgeon promised he would give me an ileostomy again.

After having something for two years, it is very hard to adjust to it being gone. I keep stroking my tummy to check - and remembering that it's gone. Every time I go to the bathroom, I go to empty the bag - and then remember that it's gone. It is a very strange feeling. I have had two years of fighting cancer, and my stoma was in some ways a label, a badge of courage. Proof of what I have been through and the effect it has had on my life. Losing it in some ways feels a little bit like being cut adrift. I am not fighting cancer any more. I am living a life after cancer. I spent two years waiting for this moment and now that I'm here - I hardly know what to do.


wilky said...

Wonderful, it brought a lump to my throat :-)

Sam said...

Kate, such a moving piece. I am so pleased that all your surgery is over, wishing you a wonderful xmas and a great new year, sam x