“I’ve seen someone die of bladder cancer, and seeing the alternative, I look on my stoma as something that’s saved my life.”
Hi, my name is Annette but everyone calls me Snettie. I’m 61 years old and I was 57 when I was diagnosed. I’m pretty happy go lucky, I love people, oh, and I’m very impulsive. I married my husband just six weeks after we met, but we’ve been married for thirty years this year. I’ve got three children and a gorgeous grandchild. I’m quite an adventurer – last year I travelled to the States and rode a Harley Davidson 100 miles along the Delaware River, something off my bucket list. I’d like to do more travelling and I’d love to go and walk the Great Wall of China.
No, not a bloody thing. I’d never heard of it.
It was blood in my urine really. I’d had ongoing cystitis problems anyway, so I thought it was that to start with. There was such a lot of blood. I managed for five weeks, in episodes, one minute it was there, then it would go. Then I’d go to the loo again and it would be bright red. I thought it was normal cystitis flaring up and I didn’t have any other symptoms. In the end my daughter pushed me in to taking a sample of wee up to the doctor.
My GP was extremely good. At the time I finally went to see my GP about it my husband was in hospital recovering from a heart attack so it was a bit of a strange time. They gave me a course of antibiotics, which of course didn’t work. I went again a fortnight later and they asked me to take another sample with me. I saw the lady doctor and she dip sticked my sample and said it was full of blood, but it wasn’t showing any signs of infection. She said that I needed to get checked out. She told me I needed a camera put into my bladder to see what was going on.
I went to the clinic a couple of weeks later and then I could see the cancerous area bleeding on the camera … there were four tumours. Then I had a TURBT, and unfortunately my bladder was so thin they perforated my bladder during the operation.
They found and removed four Grade 2 Ta1s.
They decided I needed a six week treatment with intravascular Mitomycin chemotherapy. After that I had three all clears over a nine month period which was good, but I kept getting bladder infections and I still felt that something wasn’t right. Another three months later they found quite a lot of red patches that they needed to take a biopsy of. Two weeks later one of the urologist nurses called me and said it was extensive carcinoma in situ (CIS).
As an existing arthritis sufferer, and with my bladder so inflamed, my urologist told me that BCG treatment was not an option. We discussed my remaining options, and he told me a neobladder wouldn’t work for me either, because of my previous urinary problems. Having my bladder removed and having a stoma was the only option left. By that stage I’d had enough to be honest. I’d had such a long period of bladder related issues over the course of nearly ten years. I just wanted to get rid of my bladder and get on with my life. I had my bladder removed and had a stoma.
I have met some amazing people and it has made me really want to make people sit up and listen about bladder cancer so that people don’t have to go through what I’ve been through. I think that for a woman, having bladder cancer, and having your bladder removed really changes the way you feel about yourself, especially at first. I still don’t particularly like walking about with a bag of wee stuck to my stomach, but as time goes on you do forget about that and you just deal with it. I’ve seen someone die of bladder cancer, and seeing the alternative, I look on my stoma as something that has saved my life. To be truthful with you, I feel I am one of the luckier ones.
It’s also affected my family life big time. My husband wraps me in cotton wool all the time and is always asking if I’m okay. It impacts on every aspect of your health – you start to analyse every little thing that’s wrong with you. It’s definitely changed me ... and it’s made me re-evaluate the important things in life. You have a tendency just to go along with life without thinking about what you really really want to do with your life, but never make time to do those things. Having bladder cancer really made me think about that and also that there are a lot of things in life we worry about that aren’t really very important. There are a lot of things we don’t appreciate. It’s a bit like being a blind person and then suddenly being able to see. I now see everything differently, things are much more beautiful and I appreciate everything more. I’ve been lucky really ... even the bad things have always shaped who I am. There is so much of life to experience.
The campaign is really important to me. I want to get the message across that if you notice any signs or symptoms that you’ve got to make sure that your voice is heard and you are seen. If you notice blood in your wee and you know that you’re not feeling right then you’ve got to go to the doctor. I also want this campaign to come to the attention of people who pull the strings, so that they help those who may not know as much. I would like some of the medical profession to sit up and take notice, get onboard and help us to promote bladder cancer. I want bladder cancer to come to the top of the tree, otherwise one day this cancer will come up and slap everyone in the face. So many people still smoke and they could all potentially develop bladder cancer, even years later. Bladder cancer is just not promoted enough and no one is aware of it. I hope that those who can do something to help change it do. These are the people who need to come onboard.
Too true I am!
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