We are very grateful to everyone who has shared their story with us on this website. We know that many people find reading the story of other patients very helpful when trying to make sense of their diagnosis or cancer journey. We also know that these stories can be very powerful in helping to raise awareness of bladder cancer and highlight the urgent need for new treatments, research and support for those with bladder cancer.
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We can arrange for one of our Patient Support Officers to get in touch to help you tell your story, if that would be helpful, and we also have a 'hints and tips' sheet to give you more ideas about what to write.
Danielle's Story (and Zara)
On World Cancer Day in February 2017, I decided I would like to raise awareness of bladder cancer. Not for attention, but for ACTION!
No one really talks about bladder cancer. Many people don't know the signs or symptoms, and when I watch TV programmes on how to look out for cancer symptoms, bladder cancer is never mentioned - and as someone who has experienced the diagnosis first hand, this is really worrying.
When I was pregnant with Zara, I had recurring urinary tract infections along with some pain, and even after several courses of antibiotics they kept returning. I asked my GP and midwife if this was normal and their response was "some pregnant woman are just unlucky". I accepted this but something still didn't sit right with me.
A few weeks later during a cardiac ultrasound (suspected abnormality with Zara's heart which turned out to be a simple murmur) the consultant noticed a small growth inside my bladder which she said needed investigated. She assumed just a polyp or stone, which made so much sense due to all the infections I'd been getting! The same week I was admitted for a cystoscopy and biopsy (a look inside my bladder and tissue samples taken for testing). Even during this procedure, the consultant said it didn't look suspicious and was unlikely to be anything to worry about.
While I waited for biopsy results, health professionals would tell me "don't worry, it will be fine...you're too young for bladder cancer." But for some reason I couldn't get it out of my head. What if I had cancer? I was pregnant! Could it reach my unborn baby? Would this harm her? Would I need chemo? Would my baby be okay? Would I be okay?
Within a week or so, I was asked to attend a consultation with Mr Param Mariappan, Consultant Urologist, who is also a specialist in bladder cancer. He was, and still is AMAZING! He explained I had a high grade, fast growing cancer and we needed to get it out, so I was booked in for surgery as soon as it was safe to do so.
Being pregnant I had to have several steroid injections before surgery to make sure Zara's lungs were strong enough, should she decide to make an early appearance... I prayed she was going to be okay. I was 27 weeks pregnant when my consultant removed 2 small tumours from the inside lining of my bladder wall. The operation was a success! Due to being pregnant it wasn't safe to have any additional chemotherapy or chemicals into my bladder, this is likely to happen in the future.
I was so lucky it was caught early enough. If it wasn't for my little cherub growing inside of me, they wouldn't have had any reason to do a scan, and it may have been a completely different story today! Unfortunately, my cancer has a high chance of returning, but I am lucky enough to have close contact with Mr Mariappan and his team, and I have check-ups every 3 months due to the risk of recurrence.
Bladder cancer can occur amongst men and woman, but most commonly found in men. Every year in the UK, approximately 10,000 people are diagnosed, and according to the NHS website, more than half of new cases diagnosed are in adults over the age of 75 years old! It is the most expensive cancer for the NHS to treat, and is seriously lacking research funding. Despite being the 7th most common cancer in the UK, it is still not publicly talked about as a 'common' cancer.
Symptoms can include BLOOD in the urine, PAIN when passing urine and frequent UTI's. If you have made it to the end of this post, I applaud you! - and if you wouldn't mind sharing with your friends that would be amazing. If I can raise awareness of bladder cancer, even just for a few more people to talk about it, then I will hopefully have made a small difference. I would also REALLY appreciate it if you donate even a couple of pounds to ACTION BLADDER CANCER UK by following this link https://mydonate.bt.com/donation/start.html?charity=144408
Thanks for reading. Lots of love