Real stories

I’m Liz, 61 years old, single. I live on my own and I love it. I do what I want, when I want (within reason and finances permitting). What I really like doing is absolutely nothing – seriously, I am very happy sitting around doing nothing in particular. I read, watch TV,  love to shop and I enjoy visiting my family – two brothers and a sister with two nieces and two nephews and two great nieces and four great nephews between them.

How did bladder cancer come into your life?

Nothing spectacular ever happened in my life but I was happy and content until one day in November 2013. That’s when I saw blood when I went to the loo. At the time there was a campaign running on the radio about blood in your pee, I used to hear it every morning when I was getting ready for work. The thing was as soon as I saw it I KNEW it was something serious. So, I was a good girl and made an appointment at the doc’s as soon as I could. Cutting a long story short, I was lucky and the doctor referred me to the hospital within a couple of weeks and I got a letter with an appointment for a flexible cystoscopy (where the doc has a look inside your bladder – lovely).  I was scared to death and I remember my blood pressure was through the roof at the time.

I saw the consultant afterwards and I remember her asking had I brought anyone with me. Uh oh, I thought, this is bad news!!! She told me there was a tumour in my bladder and I would need a TURBT (long-winded name for a more detailed look at the tumour and taking biopsies etc. so it can be tested). Again, I was terrified but at least this one was done whilst I was asleep. I had to spend a night in hospital but afterwards, I was fine. The consultant told me the day after that the tumour did look cancerous and the biopsies would be tested and I would get the results within a couple of weeks.

Fast forward 2 weeks. I got a phone call asking me to go for a CT scan, which puzzled me as I’d had one before the TURBT so I questioned why I was having it. The receptionist just said the consultant wanted another CT and it was for a different area – very strange. Then I got another phone call asking me to see the consultant within a couple of days – uh oh I thought (again). Thankfully I took my best friend with me (everyone should have one) and off we went. The consultant was very nice, right up until the point she dropped a 10 ton truck on my head!!! She told me, “Yes, it was cancer and it was muscle invasive,” – that is it had invaded the muscle of my bladder – not good. She told me the treatment for this was to remove the bladder and that I could be in hospital the following week – it was that blunt. Some consultants are not very good at delivering devastating news.

That’s when I got on the bladder cancer rollercoaster. The next few weeks were filled with appointments with oncologists and surgeons and my head was in a whirl. It seemed like every time I went for another appointment the news was worse. I started out with one tumour, then it was two and then it went to multiple tumours. The upshot of all this was three cycles of chemotherapy (not a walk in the park but could have been worse) followed by an operation to remove my bladder – eeek! Before all this started, I didn’t even realise you COULD have your bladder removed. I spent 16 days in hospital and then escaped to my brother’s for a couple of weeks. At times, I thought I’d never survive it all and never thought I’d manage after the operation. I chose to have a stoma (now called Egor, cos at the time I felt like I was living in a bad 1950s horror movie and the mad doctor’s assistant was always called Egor) and bag, and before the operation, I hated the very thought of this. However, once it was there, I got used to it within a matter of days and whilst it’s not the prettiest thing in the world, it’s not as bad as you think.

Now here I am, just over 1 year later, still here and living life just as before, just with the addition of Egor and his equipment. Most of the time Egor and I get along fine and I am conscious of the fact that without him, I might not be here.

What was the initial cancer diagnosis?

My initial diagnosis was T2 G3 (this changed to T3/T2 after my RC op).

What life changes have you made now you are affected by bladder cancer?

Well, I haven’t really made any – I still do pretty much what I always did (apart from dealing with Egor and his stuff). It’s more about what I don’t do now – I don’t worry about rubbish and I try not to do stuff I don’t want to do – life’s too short!!

What positives can you share about your experience?

You learn a lot about yourself when you get diagnosed with cancer. I never thought I could cope with as much as I have in the past 18 months. I’m stronger than I ever knew.  All the hospital appointments, all the treatment, the massive operation and all the emotional baggage that goes with it. You learn what’s important, petty differences don’t seem to matter any more and I find myself laughing at little things that go wrong rather than stressing about them. I’m much more tolerant of other people now – you never know what’s going on in their life.

How has Fight Bladder Cancer helped you?

Luckily for me, I found FBC very early in my bladder cancer nightmare – I would never have made it with my sanity intact if I hadn’t. I remember my first post, it read, “Hi my name’s Liz, I’ve just been diagnosed with bladder cancer – T2 G3 and I’m terrified. Has anyone got any words of encouragement????” I got 70+ replies (and the FBC support group was only small then, around 400 or so members) and I can’t express how much it helped. No matter what you felt or what you said, there was always someone there who understood or even if they didn’t, had virtual hugs to spare. I’ve always been so impressed with how welcoming and friendly everyone is and surprised by how much it helps.

What advice would you give someone who has just been diagnosed?

To anyone newly diagnosed with bladder cancer, I’ll say this … DON’T PANIC! It’s terrifying at first until you know what you’re dealing with. You become an expert in your own cancer really quickly and FBC will help and support you all the way. Whatever your diagnosis, there’s always someone who’s been there and if you have questions, there’s always someone who knows the answer. You don’t have to do it alone – people want to help – just let them.