26/06/2023

I've had todays date, 26/06/2023 etched into my mind for the past two months. Waiting and waiting for my next cystoscopy, it has been looming at the back of my mind almost relentlessly since the appointment was made. I'm pretty sure that now, this date will be etched on part of my brain forever. 

I don't know if it was because this was the first time in a while I had been able to have a 6 month gap between checks or if it was the recent issues with my last round of BCG treatments (I was treated to my first BCG related infection and and the side effects were no joke, it took a lot out of me for the best part of a month). I have also had some leg pain, with shooting pains all the way down to my toes and lots of cramps and stiffness...it turns out this last bit was due to a strained pictinious muscle from doing too many squats! LOL but it got me thinking and feeling that this next check wasn't going to go my way...it turns out I was right! 

I think I have known in my gut for a long time that the BCG wasnt really going to be the miracle cure, I saw it more as a means of kicking the can further down the road before more radical alternatives were needed. Of course I optimistically hoped that that could be a few years maybe, but in my gut I knew. This cancer has never stayed away very long really and a recurrance is inevitable. 

Today was that day. Today was the day that I asked the doctor if we could consider bladder removal and today was the day that he ran out of alternatives to give me. You could tell he was nervous of my reaction, he wouldn't even say the words bladder removal so I said them for him because the truth is I have been preparing for this day for the last five years. 

Becausae the first thing I did after my diagnosis was look up worst case senario and when I discovered that this wasn't a death sentance the next 'worst thing' was bladder removal. I decided on that day that if I could get comfortable with my worst case senario then this cancer would no longer be able to hold me hostage with fear, and that is what I did. 

I have spent the last five years reaserching urostomies, urostomy surgery, the best ways to prepare for major surgery, the recovery time for bladder removal, the possible complications of surgery and life with a urostomy, the types of clothes I can wear and how many activities I will still be able to do. 

I am pretty accepting of the way things are heading but also not nieve enough to know that this will be a walk in the park...I know it will be tough, probably quite painful and recovery might be slower than I'd like (it is always slower than I'd like) but I also know that life on the other side of this will be good, great even!

The only thing I am having difficulty with is the timings. Oscar starts school in September and I am filled with anxiety and guilt that we might not be able to provide him with the routine he is used to, when he needs it most. I have already let the school know and am hoping that we can soon come up with a plan to keep things as normal for him as possible. I am also aware I might be getting a little ahead of myself as the NHS is truly struggling and as a result nothing happens as quickly as I might be expecting. 

For now it's another surgery for me in a couple of weeks, followed by a CT scan and a multi-disciplanary team meeting for my doctors to discuss the next steps. Then after recovery I'll start to get myself prepared for a major op: More healthy eating, more fun in the sunshine with Oscar ...and many more squats!

Thanks for reading, 

Katie :)