James was diagnosed at the age of 29 with CIS and multiple T1 tumours - following the initial TURBT, he underwent intravesical chemotherapy with Mitomycin C (electrically stimulated), he has had several recurrences and had a further round of chemotherapy in 2024.

Hello my name is James Attwood, thank you for taking the time to read my story and I hope it helps in some small way.  I was diagnosed in 2012 at the age of 29 with CIS and multiple T1 tumours in my bladder, which were removed via a TURBT and follow up chemotherapy with Mitomycin C.  I've since had a number of relapses, and recently (in 2024) gone through a second round of Chemo, again with Mitomycin C. One thing everyone asks me is how I found out I had Cancer.  For me it was a rather strange time leading up to it as I presumed, I was passing small kidney stones as I had a history of them, and that must be the cause of the blood I was seeing. This was in the run up to Christmas of 2011, and knowing I had an appointment at the stone clinic in January I figured I would just mention it then. The blood was intermittent, so I figured maybe I was overdoing it and not looking after myself properly, after all I had just changed roles at work, had an 18-month-old daughter, and was trying to run my own business on the side. January rolled round and I mentioned it - with the upshot of being sent for a flexible cystoscopy a few weeks later.  I was terrified of what they were going to do, the idea of a camera being pushed UP my penis….!  So, I wait in the clinic, and wait, and then after a few hours it turns out there is an issue with the equipment in the room, so I get rescheduled for the first week of March.  I wasn’t too worried as the consultant told me it was likely a million to one chance it was anything but a stone.

March rolls round and my luck is about to become evident. Again, there is an issue with the scope equipment so they can’t hook it up to a monitor, but we press on, and the doctor has a good look inside me while I lay there very nervous.  “I can’t tell you for sure, but in my experience, it looks like cancer” were the words.  Then the very British comedy of trying to angle the scope so that he can take a photo of it with his iPhone to add to my records, while I lie there a little numb (in more ways than one thank goodness).  Scope out and I’m sitting there on the edge of the bed half naked asking him “am I going to die?” - because that’s what Cancer means right?  The whole team were quick to say that I would be seen quickly and the quicker they catch and examine these things then the better the outcome.  The quicker.  How long had I ignored it thus far I wondered.

I dressed and was immediately sent to pre-op clinic with a handful of paperwork to sit in another set of seats.  I called my wife and said things were running late and perhaps she’d like to come into town and meet me for lunch? No? OK, I tried to sound light and breezy, I’ll call you when I’m on my way home. I don’t remember much of what happened next as it was a parade of tests and moving from room to room until I was given more leaflets and kind smiles and told I’d be in for something called a Transurethral Resection of a Bladder Tumour under blue light, or TURBT.  So, I got on the train to come home, still numb, and called my wife to meet me at the station with a brolly as I’d come out without one or a coat.  As we walked back home, I told her the news, to which she loudly but politely asked why I didn’t wait until we got home.  “I figured you wouldn’t make as much fuss if we were in public” I weakly managed with a smile.

The weeks passed and I told my work what was happening, and they were incredibly supportive.  I told my vicar, some friends, family, and then got reading and sorting out what I would need to put in place for post op care etc…  Organisation and project planning allowed me to see it as an adversary to beat, something to address rather than feel like this was something being done to me.  Bags were packed and last days at work for a while were had.  After the surgery I was told I had both several T1 tumours but also had what they described as a “patch” of carcinoma in situ or CIS.  This was the more aggressive issue, but they were hopeful as nothing seemed to have penetrated too deep.  I had my first chemo instillation that evening and had the catheter in for a few days before being sent home.  Later, I started chemo with instillations of Mitomycin C into the bladder but being electrically stimulated. This was something of a trial at the time and because I was young and (well almost) healthy it involved passing a current from inside my bladder to one attached on my abdomen just above my penis.  I’m not going to lie, that hurt, but it did its job.

Through all this, my amazing nurses helped me learn how to use things like mindfulness and breathing to get through the process of being catheterised, the chemo, and after that the three-monthly flexible cystoscopies I had for follow up.  I quickly went from being rather shy and apprehensive of “uncovering myself” to it becoming normal and having conversations with the team.  And then students.  And then I began to talk to them about other things, like how they were doing, how they were coping with it all.  You see I realised that I had the allowance to have my numb moment and then be surrounded by good people to help me cope. But how do you cope when you have to tell multiple people a day that they have cancer? How do you cope when sometimes it isn’t early, or there isn’t a good outlook?  I started to talk to patients who were nervous too and do some small part to help them over that hurdle and into treatment.

By 2015 I’d been clear a while and thing were on the up.  I was being posted overseas with work to the USA, and the medical team were happy to sign me off. We’d welcomed my son into the world in late 2014, and things looked good.  We spent 4 years over there and returned in 2019, and I tried to get an annual check-up.  Then Covid hit.  It wasn’t until 2021 that I got a check and while I was optimistic since I had not had any symptoms, on the screen were two tumours when we looked inside.  Small little pink avocado looking aberrances that needed to be evicted.  On return to the UK, I had moved to a different part of the country given we needed a bigger home etc, so it was a new medical team I had to brief on my history and try and get notes sent over from London.  The process was much the same though, appointments were quickly made, and I would be sent for another TURBT to remove them. 

Luck was either not with me, or really was looking out for me though.  It’s hard to work out.  I became something of a frequent flyer at the hospital as I had relapse after relapse. I was up to ten weekly cystoscopies after frequent relapses between ’21 and ’23.  Again, I’m at the point where students come in and I talk them through the cases and answer any questions they have to help them.  The nurse I see the most cried when I had another relapse, and we had the comical moment of me checking on her and giving her a hug only to realise I should probably put my pants back on first.  After the relapse and TURBT in November ’23 it was decided that we would try Mitomycin again over six weeks to see if that might help and at least slow down any recurrence.  Thankfully this would just be an instillation that I needed to hold for an hour without the electric this time, so small mercies and all, eh?

Between TURBT and Chemo I also had my gallbladder removed, the wounds sealed with purple glue, so of course the first thing I said was “looks like you put too much mito in” on my first chemo.  I am a dad after all, poor jokes come with the job.  It was somehow rougher this second time around, but as was pointed out by my loving, tender, caring wife “well you are in your 40’s now.”  Also, it was pointed out that I had a lot more scar tissue down there in the bladder and a number of strictures on the way out, something the mito would attack. Chemo was also another opportunity to pay some of it back for me by allowing students to take part in my care and talk to them about the patient side of thing.  Having seen the US healthcare system where people have to decide on critical life support care based on finances, I figure the NHS is something we should continue to not only defend but also engage with wherever we are able. 

Once again, work, friends and family have been supportive, and that has helped a lot. 

Not just with me but with my family too who I fear often get forgotten among all of this.  I always tell people that services like ABC UK and Macmillan etc are there to support our loved ones, not just us.  I continue to make jokes about the whole thing and try and lighten the mood where possible, and I was privileged enough to take part in a talk that ABC UK did at my work just a few days after my November TURBT where I was able to give a patient perspective.  Hopefully it encourages people to go see a doctor quickly if they need to.

I would be lying if I said that it was all smiles and good humour, and I suppose you are reading this for a bit of insight, hope, or just to see how others have dealt with this.  I get scared, I sometimes have issues sleeping.  I get grumpy sometimes, I get sick and fear the worst. It’s been 12 years now, and I face the fact that this is a rest of my life issue.  The recent chemo I had took place in a specialist cancer centre at my local hospital, a beautifully built place to focus the Trust’s efforts and provide all kinds of treatment, help and support.  On my first day there I told my nurse that I felt a bit of a fraud given that all these other people had it much worse than me, something they were very quick to tell me off about.  Bladder cancer has such a high recurrence rate that while we hope this latest round stops any further tumours coming back, given my age it means that I have a very good chance of being back for another round of treatments in the future. It is something I have to continue to come to terms with, and not do myself down on.

But let’s close on a bright note.  I’m back at work, I’m feeling good, and I’m planning on starting running again and getting back to the things I love.  In about six weeks I’ll have a check cystoscopy under GA to see how the chemo has gone, and then back on the cycle of checks which I see very much more as a benefit rather than a pain.  I will of course continue to make jokes about it, if only to lift my own spirits, and tell all the new students when they come to learn and practice on me that “its OK to laugh, but please don’t point while you do it.”  If you’ve read this, and you are worried still, then please cut yourself some slack.  Its OK to be worried, to have those fears. None of this is normal, but we are resilient and can normalise this.  Talk to people who know, reach out to specialist services or other patients.  Remember to find the joys you can in the little things, and then build up from there. Never be afraid to ask your medical team about things, and never be embarrassed to go see a doctor.  They have seen everything and heard everything before, and it’s better to blush a little and get over it than hide it away and not.

My very best wishes and hopes for you.

James

March 2024