Wessex Bladder Cancer Support
Having been fit and well I was a bit concerned when I started to get small traces of blood in my urine, this was July/August 2014; at the time I was 51 and just put it down to hormones and lady's problems etc. About October time I thought I would see my GP just for reassurance. After dipping my urine I was told that
I had a urine infection and was prescribed a course of antibiotics, although I did think it was strange as I said I felt well and had no other symptoms! Four lots of antibiotics later and still getting the traces of blood I saw a different doctor who sent off my urine and booked me in for a urgent referral to have a cystoscopy.
This was done on 9th December. While they were doing the cystoscopy I could just tell that they had seen something. I was in total shock when they called my husband in from the waiting room to be with me while they told us that they had seen a tumour. We were told not to worry, but, of course, we did. My first TURBT was done on 22nd December and I went home on 24th with a catheter for a week to give my bladder a rest. I was told that it was deeper than they expected and I was very lucky it was operated on and not left any longer. On our follow up appointment we were told that because it was high grade and deeper than they thought they needed to operate again just to make sure they got it all out. The word cancer is so scary our world was turned upside down and I felt so scared but also very positive and determined that I would be able to fight this horrible disease.
It is now coming up to 3 years since I was diagnosed and I was referred to Southmead Hospital in Bristol at end of 2015 as the consultant at Great Western in Swindon felt after a few more TURBT operations and courses of BCG they just couldn't get on top of it and that I may need to have my bladder removed. While waiting for the appointment at Bristol I researched all I could to prepare myself.
My appointment came and myself and my husband went in expecting to find out when I would be having my bladder removed. We were told that the consultant wanted to try and save my bladder and felt that a 6 week course of chemotherapy into my bladder would be worth trying.
Part of me felt relieved but there was another part of me that felt very nervous and anxious (Was this just delaying the inevitable, and what if I didn't respond to treatment and the tumours that kept appearing would just be growing more and speeding up). I just thought - Right, I am just going to have to get on with this, and trust that this is the bset thing for me.
A few more cystoscopies, and TURBT's later all was ticking along. I just planned my life around trips to hospital for treatments and ops. I appeared to be winning and still had my bladder! At my follow up after the 9th TURBT in November 2016 I was told that there was now another cancer there, a CIS cancer which they described as a flat cancer. They explained that tumours were OK to deal with and they could keep removing them, but a CIS (Cancer in situ) needed to respond to treatment otherwise they would have no option but to remove my bladder. I remember feeling shocked, annoyed and upset. I felt I had been on a rollercoaster and was now back at the start.
I had 6 more weeks of BCG into my bladder. In April 2017 I had to have my cystoscopy under GA in Bristol by my consultant who said he would make a decision on what he saw as to whether I would need to have my bladder removed. He came to see me in recovery with the good news that he was happy with what he saw when he took biopsies, so although we had to wait to see him in the clinic to get the results not to worry because all was looking good.
All was going well until 4 weeks later when I went to the loo and loads of blood clots etc appeared and then I went into retention. I went to A&E and was told that it was from my op. That was the first time in all my journey that I was really scared and thought that the hospital had got it all wrong and should have taken my bladder out earlier. Four days after being discharged I was due to see my consultant from Bristol for the results. I really expected the worst but, to my surprise, he said he was happy with my results and there was no reason to take my bladder out. - The BCG had worked! I was then put on a maintenance BCG treatment every three months for a year, with cystoscopies in between.
I had my first series of BCG treatments in June followed by a cystoscopy in September, and for the first time in nearly three years was told there was nothing on my bladder. I was so shocked, the relief was incredible.
It is now October 2017. I should have my second lot of maintenance BCG in November and I am feeling so positive and so grateful for having such a fantastic team of health professionals looking after me. I joined the bladder support group in 2015, reluctantly going along. This has proved to have been a great help to speak to people and hear other's experiences. One thing I have learnt from these meetings is that Bladder cancer can vary so much and can change from one cysto to the next. So it is in the back of my mind that there may be the occasional blip but at the moment it's all positive.
I hope anyone reading this gets comfort that the endless ops, treatments and appointmants are all well worth it!!