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 bladdercancer.
If you would like to tell your story please do get in touch with us by email at firstname.lastname@example.org
We can arrange for Sara Jane, our Patient Programme Officer, 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.
Nikki was 50 years old when she was diagnosed with muscle invasive bladder cancer in 2017. Here is her story:
Hi, my name is Nikki Taylor, I live with my partner Ian in Barnsley South Yorkshire having relocated for work from Oakham in Rutland back in October 2015. Ian has been the one who has supported me through all of this - none of my family lived close by so it was Ian who went through everything with me.
I was 50 when diagnosed with G3p T2+ bladder tumour which was muscle invasive in March 2017.
I used to work in Wakefield but in February 2018 the business closed and we were all made redundant. Throughout my treatment my employer was very understanding and set me up to work from home meaning I didn't have to travel every day to the office and through the chemotherapy meant if I did feel sick I could just go to bed. I also got full sick pay for the 12 weeks I was off, which was lucky as my partner, Ian, isn't working.
Due to under active thyroid and now fibromyalgia I do not work.
In November 2016 I had a really bad water/kidney infection that floored me for a week then in March 2017 I noticed blood in my urine, luckily I had a sample jar which I took with me to the doctors and was asked if I wanted a cystoscopy to have a look inside my bladder, which I did. The image showed a dark red angry tumour in my bladder which I now know was muscle invasive bladder cancer. Barnsley Hospital gave me a Macmillan booklet and even then it really didn't register as I wasn't 100% sure. It was only when I had the TURBT and received the results did the roller coaster of emotions start... Crying. Angry. Just in a cloud with no lining!
Chemotherapy started in May on a 6 week cycle for two rounds ending end June. And in between this I had to move house - 2 days after my long day of chemotherapy - joy!
I was relatively lucky and tolerated the chemo well. Although I had a metallic taste in my mouth and a thirst for lemon drinks due to no taste buds and did on one occasion feel tired and sick, but in general the anti sickness tablets worked for me. My hair also started to fall out but luckily I have lots of hair so it just looked really thin.
The operation day was booked, with a neobladder, for August 8th. I spent a week in Royal Hallamshire Hospital and Professor James Catto was my surgeon. I had no complications and was lucky to leave after 7 days - I was put on the enhanced recovery programme. When I got home I had constipation and my bowels didn’t want to work but with a bit of help and encouragement eventually (after 3 months) all returned to normal. My neo bladder was slow to heal meaning I had a catheter and bag for a few weeks longer after the surgery.
Having gone through this I had to change my GP and in October was found to have an underactive thyroid and following that Fibromyalgia. I don't know if this was linked to the chemo or after effects of the surgery but it is just something else I now have to manage - the thyroid is a bit more complicated and I am being monitored by Barnsley Hospital for this now.
I still have CT Scans and have to visit my nurse Rachel at Royal Hallamshire hospital about bladder training and capacity every six months; but nearly a year on from the operation I am still here.
My only thing to say is please, please do visit your GP if you notice blood in your wee, it could just save your life - it did mine!