If there was ever a set of words I didn’t want to hear it’s “You’ve Got Cancer”.
Sadly, that’s exactly what happened at the back end of last year and I’m only now ready to talk about it.
You may remember Heart Failure, Kidney Stones and Fibromyalgia. As a result of the kidney stones and subsequent scans, they found a tumour in my left kidney.
Initially, the diagnosis was “it looks very suspicious”, so suspicious it was decided there was a 90% chance it was a malignant tumour and it couldn’t be ignored.
You’ve Got Cancer
Let me take you back…
I think it was July when I was rushed to A&E with kidney stones. The Doctor ordered an abdomen and pelvic CT scan and as a result of that scan, they ordered an ultrasound.
I hadn’t heard anything for a couple of weeks so assumed all was okay, then out of the blue, I received an appointment for another CT scan, this time with dye injected into my veins. What was surprising about this scan was that it was for the following day, on a Sunday.
About a week later I received an appointment with a consultant I’d never seen or heard of. I googled him (I know, you shouldn’t google medical stuff) and it was apparent he was a Urologist who specializes in Cancer.
Bridget and I attended his appointment and as we entered his room was surprised to see a nurse in a red jacket. We’ve been around hospitals enough to know that a nurse in a red jacket usually means something serious.
The consultant started the appointment with the words “do you know why you’re here?”
I explained what had been going on and here’s what he said:
“The scans show you have cysts on your left and right kidney and your liver. It’s quite normal for people to have cysts on their kidneys, in fact, some of them were on a scan we did four years ago (the last time I had kidney stones) and they haven’t changed.”
Although these cysts were never mentioned to me, I had to take his word for it.
He then said
“But, the scans show another cyst on your left kidney. This cyst wasn’t there four years ago, it’s bigger than the rest and it reacted to the dye which suggests it’s more than a harmless cyst. Most likely, it’s a tumour.”Nephrologist
To me, a tumour means cancer. I asked him outright “have I got cancer” and he replied, “there is a 50% chance you’ve got cancer.”
At this point, poor Bridget was sobbing her heart out and was being comforted by the nurse in the red jacket. I think it was at this point I caught a glimpse of her badge “Specialist Cancer Nurse”, this shit just got real.
Okay, the consultant said there was a 50% chance I had cancer in my left kidney. I heard, there is a 50% chance you haven’t got cancer in your left kidney.
We went back and forth for a while and he explained the “Bosniak scale” which is a method used to grade cysts.
The relevant numbers:
Bosniak 3 – 50% chance of being a malignant tumour
Bosniak 4 – 90% chance of being a malignant tumour
We discussed that if it was a Bosniak 3 then under normal circumstances he’d want to do a biopsy. But, as I have heart failure he didn’t want to mess about with biopsies etc.. the easiest and safest thing to do was to remove the whole kidney.
After being pushed he said in these circumstances he’d never removed a kidney that didn’t have a malignant tumour in it. For me, this was oddly reassuring.
Obviously, 50/50 is good odds in my book and I persuaded him that surgery should be the absolute last resort as I have caring responsibilities and I didn’t want Bridget affected by this.
He then explained that cases like this go to a panel. The panel would discuss my situation and either agree with him or come to their own diagnosis.
A few days later they met and upgraded it to a Bosniak 4 which meant there was now a 90% chance it was a malignant tumour.
The next hurdle was whether I was fit enough to operate on. Of concern was my heart failure so he organised a fitness test which in my eyes I passed with flying colours. I was a moderate risk which was good news but still meant I’d need to go on high dependency after the operation.
Selfishly, I wanted to leave it. After all, I felt no pain, had no symptoms and if he hadn’t have told me I’d have never known it was there (until it was too late).
Over a period of what felt like forever but was only days, Bridget brought me to my senses and I agreed for the operation to go ahead with the caveat I could visit Cornwall first.
The operation was delayed by 4 weeks, we had a great time in Cornwall and on the 21st February, my kidney was removed.
Have you ever been in a deep sleep, so deep it was a shame to wake up?
I heard “Rob, Rob… wake up, look who’s here to see you.”
I opened my eyes and there she was, the love of my life “Bridget”. I know that sounds a bit soppy but if ever there was a face I wanted to see it was Bridget’s.
Immediately, I realised I had survived and secondly I realised I had excruciating pain in my side and stomach. But what eclipsed all of that was my sadness at not being able to hold Bridget. She was distraught and had to be taken out of the high dependency unit by my youngest son, it broke my heart that I wasn’t there for her.
I found out later that Bridget had seen me as soon as I arrived on HDU and I hadn’t been cleaned up yet so was a bit of a sight. Apparently, the tubes, machines and blood were too much for her to handle, I’m really sorry she and my son had to see me like that.
As I write this post, I’m now two weeks post-op. My stomach and side still hurt, bending is a problem and I’m shattered. Obviously, I still have heart failure which makes me tired anyway and fibromyalgia intensifies the pain so every day is a challenge.
Over the last few weeks Bridget, my Mum, sons and sister have looked after me brilliantly, I really can’t thank them enough. I feel so lucky to have them, recovery has been so much easier because of them.
I’m sorry for putting them through this and I hope they know how much they mean to me.
Before I go, there is still the small matter of a tumour. Was it a malignant tumour or harmless cyst?
Truth, I don’t know yet. I will find out at my next appointment at the end of the month. In all honesty, it sort of doesn’t matter anymore because the kidney has gone.
Update March 2018 – It was a malignant tumour. Thankfully, removing the kidney means I am now cancer-free. I will need regular scans and blood tests, but that seems to be it.
I am lucky to be in a situation where my kidney cancer has gone. So many others are not in my situation.
I’m lucky to have the NHS who caught whatever it was early and despite my reluctance to perform a successful operation, many people don’t have that luxury.
And, I’m so lucky to have a wonderful family who’s got me through this tough period.
Can I ask, if you can, please support: