By Nicky Rogers
My husband Neil and I moved to Wymondham, Norfolk, a fortnight before the nation went into lockdown in March 2020, just two months ahead of my 60th birthday. Two years later, we found ourselves at Norfolk and Norwich University Hospital after I fractured my foot. We joked about how convenient the hospital was for us, being only a 12-minute drive away; a year after that, it became very apparent how lucky we had been to be near the ‘N and N’, as we became frequent visitors.
In the summer of 2023, I noticed what I thought were symptoms of a mild UTI. I didn’t do anything about it for a few weeks, but eventually I made an appointment with my GP. Following two urine samples which both contained traces of blood, I was referred to the Urology Department, and six weeks after my first visit to the GP, I was diagnosed with bladder cancer. This came as a total surprise to me; I knew that blood in the urine was not a good sign, but otherwise I really didn’t feel unwell.
Trips to A&E
A day procedure to remove the two tumours was arranged for a month’s time, but before that appointment, my condition became much more challenging when I suddenly realised that I couldn’t pass any urine. A trip to A&E resulted in me being catheterised, and I soon understood the seriousness of my illness, as for ten difficult days I passed truly bloody urine.
I ended up at A&E several more times as my urine flow still wasn’t right, and the worst point was when one of the doctors told me that she had seen the results of my CT scan, which showed that I also had an ovarian cyst. Luckily, this proved to be benign, so following my first (only partially successful) procedure to remove the bladder tumours, my ovaries and fallopian tubes were also removed.
Surgery and beyond
The second procedure on my bladder had to be delayed as I came down with COVID, but it took place before the end of the year. In January 2024, I met with my consultant and we discussed the possibility of BCG vaccine treatment. But the option of removing my bladder had already been raised, and when the biopsy and CT scan indicated that the cancer had almost certainly begun to invade my bladder muscle, we all agreed that the best way forward would be an operation to remove my bladder and create a urostomy. It took place on 29 February 2024.
Eighteen months on and for the most part, my stoma – named Omar after my consultant, and with a nice ring to it – has been relatively straightforward to adjust to. My stoma nurse was invaluable in the early days after I returned home. After a couple of weeks, I experienced some leaks, and she swiftly identified the issue, which was that I needed a convex bag with a barrier ring. I have continued using these same products with no problems.
Eventually, I began to recover my strength and started doing the things that I had been doing before the operation – Pilates and swimming weekly, walking and cycling locally and working in my local community bookshop. Then, six months after my operation, I woke up one morning shivering, vomiting and with a high temperature. Thirty-six hours later and feeling no better, I was directed to A&E, where I learned that I had cellulitis. This necessitated three nights in hospital on intravenous antibiotics before I was allowed home. I recovered after another week of oral antibiotics but, unfortunately, I had the same experience four months later – more days in hospital and lots of antibiotics.
This time, I started asking questions, such as was this second occurrence because the original infection had not fully cleared up? My GP agreed to do a blood test to check the infection markers really did indicate that the infection was gone, but he also looked at my leg and suggested that I might have lymphoedema. It turned out he was right. I knew that some lymph nodes had been removed by my operation, but I had had no idea of their function at the time.
Once I started to attend a lymphoedema clinic, it became obvious that I now had a condition that needed to be managed. They advised me that prophylactic antibiotics are recommended following two occurrences of cellulitis within 12 months, so I am now taking these.
Silver linings
Aside from adjusting to living with a stoma and side-effects from the operation, I have managed to go back to the hobbies and occupations I enjoyed before my cancer diagnosis, although of course, life will never be the same. One consequence has been that I have decided to retire from my job as a freelance archaeologist.
Sometimes, when I tell people of my experience, I reflect that the cancer diagnosis still doesn’t seem real. I had no real pain, just discomfort for a few months, and it is hard to be grateful for the loss of an organ that had been working so well for me for 60-plus years that I had hardly ever thought about it. But what I can say is that I have discovered positive things about myself and others that I might not have done otherwise.
I was very touched that so many of my friends offered support and put themselves out for me. And I discovered that I didn’t need to worry how my family would deal with my diagnosis – they have been magnificent.
I have been hugely lucky in getting other support for dealing with my health – literally five minutes’ walk away from my house is the Starthrowers Cancer Charity Centre, an amazing organisation. Thanks to the centre, I have had access to a nurse, a dietician, and a counsellor, as well as getting treatment for my lymphoedema. I can also take advantage of their other therapies and support services, such as Reiki, massage, and reflexology, all of which are free to both patients and carers.
Art as therapy
This has all been fantastic, but in addition I have been going to other types of therapy sessions. Every month I do an online writing for therapy class, and I have even had a short story published in my local magazine! I have also joined an art therapy class. As well as being a great place to talk and make friends with others who have been through similar experiences to me, I’ve discovered that, despite being written off at school as being ‘hopeless at art’, in fact – with encouragement – I can express my new self artistically in ways that I had never considered.
I was inspired to try and do some art at home, and I discovered a website where ostomates had decorated their pouches (https://www.bag-art.eu/). I have started to do something similar, and have found it very satisfying, even though I am no Tracy Emin! This just shows that anyone could do the same – just get some pens and paper. Or, if you want to decorate your pouches, you may need acrylic paints or fabric pens – then off you go.
So, my top tips would be…
- Find a local support group – hopefully, there will be one somewhere near you, or you could join one of the UA’s online support groups
- Develop new interests – you might surprise yourself
- Most importantly – love your stoma!
