“I’m sick of going through these treatments month after month. It’s exhausting, the worry of it all. Every time they cut it out it comes back.”
My name is Paula and I’m 43.
I met my husband Stu 18 years ago. We love walking and hiking in the Lakes with our two dogs. We have two children, Natalie age 22 and Mike who’s 20. In my spare time I do a lot of reading, oh, and I love camping. We’ve been camping for a lot of years now ... but I’m a tent kind of girl rather than caravanner. I love it, but I suppose I’m a bit of a glamper – I take my TV, DVDs and a fridge – you’ve got to have your home comforts haven’t you?
No, it was nothing I knew anything about.
All I had was a pain in my back, which I put down to working too hard or wearing high heels. Even when I had blood in my wee occasionally at the time I thought it was because of something I’d had to eat or drink the previous day. I was rushed into hospital in late 2012 with a blocked kidney and I ended up with septicaemia. They put a stent in my left kidney and I was supposed to go back a month later, but they ended up leaving the stent in for three months. I went for a CT scan in the spring and they told me they had found two tumours in my left kidney. They wanted to do a biopsy, however the consultant told me it probably wasn't cancer because of my age, because the kind of cancer it would be mainly affects old people. So, as you can imagine, I was very shocked when after the biopsy the results said it was cancer and that my kidney would have to be removed. They also told me that the cancer was all through my bladder and up through the urethra into my kidney. I was in shock.
T2 G3 – an upper urinary tract bladder cancer.
My consultant was fantastic. I had my kidney removed in a nine hour operation, in which they also removed nine lymph nodes. Two weeks later when they gave me the results they told me my bladder contained almost every stage of bladder cancer you can find. Up until that point I had assumed I had kidney cancer. They also told me the cancer was growing outside my kidney, but I was lucky the lymph nodes they removed were clear. Then they said they were going to put me forward for a new trial called POUT. But two weeks later they told me I didn’t make the trial. This was a really low point ... I felt like I was just left to my own devices.
I had a follow up in the summer and they found more tumours, so it was back again. I took it on the chin. This time it was a stage 1 so they gave me a Mytomicin chemo wash. In the autumn I went back for another check and it was back again, this time at the entrance to the other kidney. I felt like this was more of a panic situation as it’s the only kidney I have left. I had another six weeks of Mytomicin chemo washes. Three months later, more checks, and it was back again. The surgeon cut it all away, again it was stage 1. Three months later and it was back again at the same stage. They offered me a new microwave treatment. They don’t want to start me on BCG because of all the operations I’ve had now and the problems it can cause for your bladder.
I started the Synergo treatment. I am one of very few women in the country to have it. It’s a very painful treatment mind, they put a catheter in with three electrodes and they connect you to the machine and then they put the Mitomycin wash in and they heat it up. Every treatment they increase the temperature. It starts at 40 degrees and then they gradually increase it. Your bladder is being heated up. Each week the pain increased more and more. By the fourth week it was excruciating.
In the end they stopped the treatment because of the pain. I don’t know if the treatment was successful or not. Since then I’ve had a biopsy, and they told me the cancer was still there but it was now ‘flat’ (whatever that means). Now I’m waiting for the histology report.
It changes everything. Paula, the person who I was before, a successful business woman, a mother, is gone. I was at a point in my life with my children moving to adulthood, where Stu and I were going to buy a B&B in the Lake District. It was going to be mine and my husband’s time. We had such brilliant plans, I was at the happiest point in my whole life. Then it all came crashing in on me. When I was first diagnosed I went into this bubble, stepped back from reality. I didn’t realise the impact it was going to have on my life. I loved my job, I was very career focused and to not be able to go to work ... it was hard to disconnect myself from that. It’s so hard to stop living your life and start living the cancer life.
I was made redundant because I had to have so much time off for treatments. The business I worked for lost contracts when I couldn’t work. I need work as I have that drive and determination, I really was a career girl and enjoyed going in to work. Losing my job was awful, I always thought it was something the cancer couldn’t get hold of, but now I’m living with the discrimination of cancer. Not only that but with bladder cancer you need checks every three to six months. Who wants to employ someone who needs so much time off all the time? I have to live with that for the rest of my life.
You also lose friends. Some people just can’t deal with it. I think people don’t want it to affect their little bubble so you just never see them after diagnosis. It’s hard on your children too, and the rest of your family. Everything changes about you. I think I’ve become an entirely different person. I have taken some positives from it though. It has changed how I look at life, dealing with my own mortality. Things that used to bother me just don’t anymore. You've got to appreciate what’s really important.
We need to do something about the lack of support and information on bladder cancer. Everyone seems more concerned about prostate cancer than they are about bladder cancer. Bladder cancer just seems to be left behind, which is terrible. We all know the impossibly hard statistics we are facing.
I also want to help people not feel alone. Because I felt so alone. There was nothing for me when I was diagnosed. It’s really important to me that people understand this isn’t a disease that only affects old men. My consultant told me first that I couldn’t have this type of cancer because I was too young. People need support when they are going through this. That kind of support is priceless. If we can help other people not feel like they are in a big black hole, if we can shine a light on them and make them feel like they can fight this, that’s a really good start. It doesn’t have to be all doom and gloom.
No. In the end I think it will beat me. Don’t get me wrong, I hope to God it doesn’t. But because it keeps coming back every check up I just feel really tired. Bladder cancer has such a high recurrence rate. I keep on fighting every day, every operation I have, but every time I wake up from the op it’s bad news. I’ve had two bouts of chemo and so many operations. If I had had some time of being clear I might have a different answer but for me there’s no light at the end of the tunnel. I am scared that I’ll end up losing my other kidney which would mean a life of dialysis, or maybe a kidney transplant and I’m only 43. I’m happy to live the life of having my bladder removed if it means it stops the cancer coming back. I’d like to give myself a better chance of life and a better quality of life. I’m sick of going through these treatments month after month. It’s exhausting, the worry of it all. Every time they cut it out it comes back.
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