The most nervous I have been through out this whole process was on Tuesday 5th June. Results Day! After the surgery I had put this day as far to the back of my mind as I possibly could, high on the thought of our new life.
I managed to fool myself and everyone around me that everything was now totally fine and we were free to go on like nothing had ever happened. Unfortunately when the letter with my appointment date arrived I knew that that wasn't really true. For moral and practical support I asked my mum and Tom to come with me to the appointment, unfortunately my mum has been to quite a lot of these types of appointments over the last year and I relied on her knowing the right questions to ask.
As the day got closer I began to focus on the positives, if it was good news we'd be going straight to a shop and buying a bottle of champagne and planing some big family celebrations. I soon learnt that particularly when it comes to cancer things don't quite work like that.
Our appointment was a little confusing in the end, we met with my consultant and a specialist urology nurse who would now become my main point of contact for any questions I might have about appointments and treatment plans in the future, because as it turns out, this was going to be a long road.
During my operation they had managed to fully remove the tumour, which is great and pathology at Huddersfield were able to confirm the best news, superficial bladder cancer! Meaning the tumour was only on the inner lining of the bladder and hadn't spread any further into the layers below. Because of the 'rarity' of my case (starting to become a little bit of an annoying theme) a second opinion was requested from the specialist unit and St James Hospital in Leeds and even better news, they were also able to confirm a superficial cancer diagnosis!
In reality this is the best news and I feel so lucky to have received this diagnosis, it could have so easily been so different and now that I have had some time to process things more, maybe a little bit of me does regret not going out and getting that champagne. But like I said things aren't always so simple and at the time it didn't feel quite right. We have now booked a holiday instead and I'm so excited for a week on a beech doing absolutely nothing! (perhaps slightly more appropriate given I'll be 5 months pregnant)
Bladder cancer has one of the highest re-occurrence rates of any cancer (about 30-40%) the lower your grade the lower your risk of recurrence and the less treatment you will require. Unfortunately when they removed my tumour there wasn't just one (as previously suspected) there were two and one of these was over 3cm. These two factors, coupled with my age (there we go again) means that they have to grade my cancer as moderate risk. Meaning slightly more surveillance and treatment moving forward.
Surveillance for me means cystoscopies every 3 months for the first 2 years and then (provided there aren't any recurrences) this moves to every 6 months for the next 3 years and then hopefully once a year for a further 5 years. This also means that rather than delaying further treatment until after my pregnancy they would now like to do another cystoscopy when I reach 7 months and then a further surgery after the baby is born to have a much closer look at the inside of my bladder, potentially followed by a 6 week course of chemotherapy directly into my bladder.
Although not ideal, this is all still amazing news and bladder cancer when found at this stage means it's more of a nuisance or a chronic illness than it is a threat to life. It's just the realisation that my journey with bladder cancer rather than being over, is only just beginning.
It's been nearly two weeks since getting my results and I must admit I've defiantly had my down moments but I'm getting my head around the idea of living with this type of cancer and it's getting easier.
I'm starting to realise just how lucky I am and I'm determined to face this new challenge with as much positivity as I can. Life is short and although I didn't think that at 27 i'd be forced to come face to face with just how fragile it can be, I want to use this opportunity to make better choices, stop sweating the small stuff and appreciate everything I have even more.
If anyone would like more information on superficial bladder cancer I have included a link to the Macmillan booklet, which explains everything so much better than I can. I've also included a link about cancer in pregnancy in case people need to know more about that.
I know this is a bit of a long post, but its quite hard to write about this quickly, so thank you for taking the time to read it.
Katie xxx
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