A very delayed update I’m afraid. This rollercoaster certainly sweeps you up and barely gives you time to catch your breath before plunging you to the depths again.
Anyway, my daughter and I headed off to the consultation armed with a face mask and packet of tissues each. I’d spend the morning crying with fear and had managed to compose myself, until my son rang to wish me luck and set me off again. I was really hoping I wouldn’t break down during the consultation as I wouldn’t take anything in.
we took our seats in the waiting room and the first thing we saw was a priest lurking around. Jen said, ‘that’s just what you need to see isn’t it!’ And then we giggled a bit. Then we had our first sighting of the consultant when he emerged from his office to call someone else in. But no one came. Then he had to go on a recce to hunt them down, and found them. And we waited but not too long until it was our turn.
The consultant was a very nice man. I can’t remember all he said or even how he started off the consultation. The first sentence I heard was, “It’s very serious”. And Jen grabbed my hand. The tissues went unused. To be honest, when I think back on it, we must have been like 2 rabbits caught in the headlights. For some reason I was fixated on hearing the grade and stage of the tumour as this is what I’d researched. I knew that the lower the number the better. I think it was one of the very last things the consultant told us, and then only after I’d asked. He said that the numbers were always changing but he did tell us it was T2b G3.
Obviously what he told us prior to this was far more important and to be fair, when we got home, I was able to relay every bit of information to the family quite clearly.
Thinking back too, on what I had been told previously about the process, I was lucky to see the consultant as soon as I did, as my full results had only come back the day before and their team meeting was due to be held the following day.
So here it is in a nutshell -
My options are a course of radiotherapy or a radical cystectomy.
The latter involves removal of the bladder, uterus, ovaries, part of the vaginal wall and my appendix, if I still have it, which I do. The reason they take everything out is because once they’ve been in and created the stoma, they don’t want to have to go back in and take anything out at a later stage as there will be so much scar tissue.
if I opt for the radiotherapy, they wouldn’t be able to perform the op if the radiotherapy didn’t work. Apparently radiotherapy makes the outside of the organs very sticky and it would be difficult to remove the bladder without damaging other organs that might have fused to it.
If I opt for the cystectomy and it doesn’t work, I will still have the option of radiotherapy afterwards. He said both options had a 60% survival rate, which could both be increased to 80% if I had a round of chemo first. Well 3 cycles to be precise. Each cycle covering a 3 week period.
I have an additional problem, in that my right kidney is not draining properly as my cancer was situated where the kidney drains into the bladder. My current kidney function was 55 and he would like it to be at least 80.
The chemo can impact the kidney and it’s really important that it drains properly otherwise the toxins would just sit in my kidney and cause damage.
So he said I would need a Nephrostomy (kidney drain) before the chemo.
After the chemo, if I opted for the surgery, he would be able to remove the kidney drain and plumb it in to the stoma as with my left kidney. If, on the other hand, I opted for the radiotherapy, I would have to keep the kidney drain in for life.
He said he would order a CT scan to check that the cancer hadn’t spread to my lung. If this was the case, they wouldn’t perform the surgery and palliative care would be the only option. BUT he said, he didn’t expect that it would be in my lung as the CT of my pelvis and lymph nodes were clear and it would usually travel to the lung from there.
He wanted a decision on the Nephrostomy and the chemo there and then, so I said yes to both. He referred me at that time for an oncologist appointment, ordered the CT scan and blood tests to check my kidney function and coagulation.
I think the only question I asked him was why it was necessary to remove the whole bladder as, when I’d seen it at the time of the cystoscopy, the rest of the bladder looked fine.
He said that, if I’d smoked, which I have for a very long time, the toxins from the cigarettes would have been sitting in my bladder and damaging all the cells in it. I guess what I thought looked like a healthy bladder should have looked more pink than grey. Anyway I was satisfied with the answer.
From the consultant’s office we were taken through to talk to a nurse who gave us a folder full of info to take away and went through everything again. To be honest we weren’t really happy with the nurse. I don’t know if it was getting too close to home time or what, but it did feel a bit rushed.
We came home, still dry eyed and a bit shell shocked. We chatted and had a cuppa and I updated the family via WhatsApp and then Jen went home.
I forgot to mention that we had both come to the same conclusion on the drive home that the radical cystectomy was the only option. At least that option gave me another chance of survival if the radiotherapy didn’t work and I would rather live with a urostomy that I can manage alone than life with a Nephrostomy that requires district nurses changing 3 times a week and the tube itself replacing every 3 months - for life!
I didn’t have much of an appetite after that visit but managed to force down some food and had an early night. Sleep evaded me though. I wasn’t upset or anything - the only thing that was playing on my mind was how to tell my Mum the following day.
I decided to practise on my boss, to see if I could actually speak the words down the phone without having a melt down. I succeeded with flying colours, so now it was time to ring my Mum (aged 93). She always rings me at 9 am but rather than wait I rang her.
My voice cracked as soon as she said, “how did it go?” I told her it was serious and a lot to take in and that I’d tell her now on the phone and then pop over later, go through it all again and write it all down for her (she does like to relay everything to everyone so I thought writing it down would make it easier for her).
It turned out that I had to be quite short with her, and I’m never like that.
As soon as I started telling her what the consultant had said, she started saying, “Oh why can’t it be happening to me, I’ve lived my life”. I can totally understand where she was coming from as I’d be exactly the same if it was one of my kids and the whole saving Grace in this journey for me, is that it is happening to me and not them.
Anyway, I snapped a bit and said it’s not happening to you and it’s really hard for me to get all this out but it would make it so much easier for me if I thought you were listening to me. It is happening to me, not you and no amount of you wishing it were you will change anything. That did the trick and I managed to relay all the options. I popped over later as promised and wrote it all down.
The rest of the day was spent relaying it all over again to everyone that knew I was going for the consultation but most of that was copy and paste texts and stuff, which I always find easier.
Oh. I did get a phone call on the Friday (day after the consultation) with a date for my CT scan. It was to be the following Tuesday. The NHS doesn’t hang about!
I don’t know if I was in semi shock still or just happy that I finally knew what I was facing, but I shed no tears and didn’t feel particularly scared. The one unknown was still whether I would even be having all this treatment, as the results of the CT scan would determine that.
Saturday was spent playing with the granddaughters and I think Sunday was probably Google day, and reading through the folder full of stuff I’d been given. I also compiled a list of questions to ring and ask the Urology nurse.
I’ll leave this here for now, and write some more updates tomorrow.
