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.
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 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.
Diane was 59 when she was diagnosed with grade 2, pTa non muscle invasive bladder cancer. Here she tells her story:
My name is Diane Gooch I am 63 years old and am a 3 time bladder cancer (BC) survivor. In 2014, I was diagnosed with grade 2, pTa non muscle invasive bladder cancer.
In January 2014 I had a massive bleed when passing urine. I went straight to my GP’s surgery taking a sample with me. This was sent for testing and I had an ultrasound 2 weeks later and in March 2014 I had my first operation; a TURBT (Transurethral-resection-of-bladder-tumour) followed by Mitomycin being placed into the bladder.
It was found that I had a cancerous tumour in my bladder about the size of a golf ball which, when you consider the bladder is about the size of a large pear, was quite something.
I have no idea why it bled, but I am very pleased it did as the Surgeon estimated I had had this since 2012, with absolutely no symptoms. The tumour was confined to the lining of the bladder, and was removed in the TURBT procedure, but the placement meant I had to have a stent fitted from the kidney to the bladder. This was removed 6 weeks later, but felt very odd whilst it was in place. The cancer came back again in 2015 and again in 2016. This time after the operation I was given 6 x weekly doses of Mitomycin which is a quick and painless procedure and takes about 5 minutes, but you do have to go into the hospital to have the treatment. Check with your hospital about parking fees as at my local hospital cancer patients are exempt from hospital parking charges, which does make a difference when you are making lots of visits. I also found at that if you are under 60 you can get free prescriptions. I did not know this at the time and I was 59!
So how did the diagnosis of bladder cancer affect me personally? Well it’s the word isn’t it? Cancer. The hospital recommended I take someone in with me for the consultation after the first operation. I know why now. As soon as they say it was cancer it is like you are underwater. I could see the Consultant’s lips moving but could not hear a word she was saying. I could feel my husband’s hand as he squeezed mine but I was frozen to the chair and couldn’t move.
After I got home I went straight to “Dr Google”. It is a natural thing to do but please make sure you get good information from an NHS or cancer charity website like Action Bladder Cancer UK. There are thousands of people out there trying to sell you a miracle cure; drink this tea, take this oil, the list goes on; but you need proper advice and information from a reputable source. There is real help available for the 1001 questions you and your family will have. Remember they are on this journey with you and to a lesser degree it is their cancer too.
I have to have regular checkups; about every 6 months. It was longer between appointments but I have had a couple of urinary tract infections, so they brought the appointment forward. I am not currently having any other treatment.
Over the years I have had bad days when I would feel like howling at the moon; and sometimes I did! My husband, on the other hand, stayed calm almost to the point where I thought he didn’t care, which was really hard. Later I found out he had bad days too but he hid them from me so as not to upset me. We all react differently to things like this and find different ways to cope.
My personal life has changed dramatically since the diagnosis. In 2014 I was made redundant as my boss of 23 years retired. Unfortunately the Government had changed the state pension age from 60 to 66 so here I was, a 59 year old recently diagnosed with cancer. My job prospects were to say the least minimal. Then with the return of the cancer I gave up looking for work. My husband retired in 2016 so we went from 2 incomes to his state pension and a couple of small private pensions, so it hasn’t always been easy. On the plus side we have the time to do all the things we love, including going to rock concerts!
If I had to give one piece of advice it would be that if you have any worries about your bladder or wee get it checked out, don’t just put it down to a urinary infection. If you see blood in your wee get it checked out straight away. Do not put it off, do not make excuses, do not say ‘I’ll go next week’, do not think ‘I don’t want to bother the Doctor’, or ‘I can’t get the time off work’. The cemeteries are full of indispensable people and whatever you do; do not die of embarrassment! I am so pleased that I got checked early and would urge everyone to do the same.