“It’s a chance to stand up and show that people are getting this disease who don’t fit into the standard ‘old man’ profile that bladder cancer has.”

Hi, my name is Melanie. I love music and gravestones. Seriously, I've always loved music and festivals. People might think I’m a bit crazy because I don’t fit into a normal box that fits most people. I tend to do my thing. When I was growing up I never wanted to be like everybody else so I need to be true to who I am. I love architecture, I used to be a technical draftsperson and I really love art. That kind of thing is really important to me. I’ve had mad things happen in my life, I have so many stories … I’ll save the one about the time I had to take control of a coach on the way to the airport for now though!

Had you heard of bladder cancer before?

I had heard of bowel cancer, cervical cancer, breast cancer and all of those, but I’d never met or heard of anyone with bladder cancer.

What were your symptoms?

I knew there was something wrong for a long time. I constantly felt like I needed to go to the toilet but then couldn’t go. I was in so much pain and it got worse and worse and then I started to have blood in my wee. This all lasted for months before I was diagnosed, by which time my whole life became about not being able to go to the toilet. I felt dehydrated all the time. I lost so much weight too. My friends were so worried about me – they thought I had an eating disorder. I just wanted someone to shoot me, as every waking hour became impossible. I’m angry now that it went on for so long and the doctors did nothing.

What was your initial diagnosis?

I was Grade 3 T1 but they said it was unusual as the cancer was like a carpet that covered my bladder.

What has your treatment been?

Well, I had two TURBTs to remove as much of the growths as possible. I started having the BCG treatment but then on the second treatment a weird lump appeared in my shoulder. The treatment continued and I had six full courses of BCG. Then they gave me an all clear. I had one more treatment after that and meanwhile they became concerned about the lump on my neck. After stopping the BCG they removed the lump, which turned out to be a swollen lymph node. They discovered it was disseminated BCG, a very rare disease that can affect people having BCG treatment. This means I probably can't have any more BCG treatments, so I’m not sure what options I have left if my bladder cancer comes back.

I have a cystoscopy scheduled for next month and I’ll just have to wait and see what comes back from that. I feel like giving up my treatment as it’s been so hard. The BCG treatment is such an excruciating thing to go through, you can’t imagine. Then I’m meant to start TB medication for this rare disease I’ve contracted for nine months. They have never seen this happen before so the medical team really don’t know what will happen. Now I get to choose between BCG disease or bladder cancer. What kind of choice is that?

How has it changed your life?

From the date of my first TURBT operation I started to put weight back on. Now I’m not scared what’s going to happen. My quality of life since diagnosis has been amazing. Now I can do what I like. If I need to go to the toilet nowadays I can hold on and I couldn’t before. Since I’ve had the treatment my life is so much better. I spent months feeling awful and not knowing why, so it’s an amazing relief to feel so much better.

My boobs and my bum have come back and I feel wonderful. Even though the surgery made me feel rough, I actually just feel so different now ... I feel like a human being again. It changed my life so much that I didn’t care about the bladder cancer, it was such a relief just to be able to go to the toilet like a normal person. Unfortunately, because I have this rare side effect of the BCG treatment it makes things much more complicated with my treatment in the future.

I tried so hard to get people to listen to me when I first started being ill. No one took me seriously and they told me my symptoms were just in my head. They said I was too young for it to be cancer and that I didn’t have the right symptoms. Then they said they thought I had an eating disorder and tried to give me build up drinks. I couldn’t go out or do anything because of my urinary problems but no one was listening to me. They told me I had an anxiety disorder but none of them spotted the real problem. I’m not sure I could go through that again. That really affected me and my life over the past few years.

Why is this campaign important to you?

I thought about it long and hard before being part of the campaign but I think it’s a privilege to be in it. It’s a chance to stand up and show that people are getting this disease who don’t fit into the standard ‘old man’ profile that bladder cancer has. I’m just a normal person and I didn’t know the symptoms before I was diagnosed, so I am hoping I can help other people in that situation.

Are you going to beat it?

Instinctively, this time I don’t think so. There’s something in the way it feels … I get the feeling they will eventually find something and it will grow. I’m quite resigned to what will happen. I just think if anything is going to get me it’s going to be this. Whatever happens, I’m completely alright with it.

Mel

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