My kidney cancer journey
by Duncan McGhee.
In September 2014 I had a great weekend in Benidorm with friends though one evening it rained so hard, we all got soaked through. When I got back to the UK, I developed a cough which I put it down to that drenching. But, a few week later I was still coughing, now it was an uncontrollable violent and unproductive cough, so I decided a visit to my GP was in order and was prescribed a nasal steroid which didn’t really help. I went back, was sent for a chest X-ray to check for TB which was clear and given more steroids, oral ones this time. The cough seemed to ease but didn’t disappear.
Track back a few years to early winter 2006, I was knocked out with a persistent cough for about two weeks which was so exhausting, one day I couldn’t even manage to get down the stairs. I had an endoscopy for that and was found to have a hiatus hernia and reflux which was apparently burning the oesophagus, and this was causing me to cough. I was given PPI’s to neutralise stomach acid which seemed to do the trick and my cough cleared up, ever since I have taken PPI’s infrequently. I’m not saying that was connected to what came later, but it could have been the start and at the very least and it gave me a reason, and an excuse, for my cough.
Back to 2014/15. The severity of the cough fluctuated over time and was so severe I didn’t want to socialise or go out in public. It was violent and uncontrollable; a coughing fit could last for several minutes or it could be just two or three coughs with more than half an hour between. Once, I was asked to leave a restaurant as my coughing was making the other diners feel uncomfortable. This was shortly after Scottish nurse and aid worker Pauline Cafferkey hit the headlines after contracting the Ebola virus in Sierra Leone. If only I had known at the time my cough was caused by kidney cancer and it wasn’t contagious.
Summer came and my cough inexplicably disappeared altogether. I normally suffer with hay fever but not this year. That, I was happy about!
We had another great weekend in Benidorm in September 2015 but again, I came back with a cough! Was I allergic to Benidorm? It was the same cough as before but this time I was being sick on occasions. Over the remainder of 2015 and into 2016, visits to the GP resulted in more steroids, antibiotics; more antibiotics and then more steroids none of them really having any effect.
I was coughing more and being sick more often, eventually I was referred to ENT specialists who scanned my head and diagnosed a blocked frontal sinus in my forehead along with a deviated septum which was claimed to be causing a post-nasal drip irritating my throat and obviously causing my cough. I now had another reason for my cough! So, now when I had a bit of a cold, I blamed it on post-nasal drip and when I was ok, I blamed it on reflux! Visits to my GP had been pretty unproductive in the past so, I found my own excuses not to go back.
Summer came and my cough and sickness reduced once again but I noticed that I was losing fitness. A stroll to the local park and up hills was becoming more difficult. I would find myself out of breath in situations when normally, I wouldn’t have been.
September 2016, we went to Prague instead of Benidorm, (why risk it?), but my cough and sickness still came back that autumn. From September through to Christmas things got worse, I was feeling weaker, sleeping more, I was breathless and even simple tasks tired me out. In addition to that, I was being sick most days and losing weight quite rapidly. I started to experience severe night sweats to the point where the bed sheets were actually soaking wet in the morning and waking up to go to the toilet in the middle of the night became more frequent, too. There were some occasions returning from the toilet when the bed sheets were so soaked with sweat, I couldn’t get back in.
To start with I still convinced myself that the cough was caused by postnasal drip, or when my nose was fine and dry then it must be the reflux and I was tired because I was coughing so much and the sickness must be to do with mucus from my postnasal drip. I was in my 50’s so going to the toilet in the middle of the night was the norm, wasn’t it? I overlooked the night sweats and bundled it in with the other excuses and reasons. As it turns out I have neither reflux nor postnasal drip. But that’s what I had been told and they fitted most of my symptoms; most, but with the benefit of hindsight, not all.
Christmas was probably the turning point when I finally admitted to myself that something wasn’t right, this could be quite serious. I had lost about three stone, from 18 stone, so whilst that was welcome it’s not a weight loss programme I would recommend. My GP was on holiday, so I saw another in the practice, unfortunately he just referred me back to my own GP in the new year. I did that in January 2017 and told him I thought I had ‘something inside me that shouldn’t be there’. ‘You mean cancer?’, he said and referred me to Mr Kahn, a gastroenterologist as a cancer referral.
I got to see him quite quickly, in fact I remember it was on a Saturday and he was quite annoyed that I‘d been sent to him as a cancer referral without my GP having done a single blood test. However, he could see I was very ill and sent me for a full body scan and an endoscopy.
I had the scan less than 2 weeks later, the radiologist said it would be 2-3 weeks to get my results. The next morning Mr Khan called me to say I had a sizable lesion on my left kidney and referred me to the renal unit at High Wycombe. The surgeon there had seen my scan results and thought the cancer may have spread from my kidney into the renal arteries and veins and he wasn’t sure he was capable of dealing with that complexity. I was referred on to Mr Sullivan at the Churchill in Oxford.
Churchill’s scanning machines provided a higher quality image which showed that the cancer was still contained to my kidney but was stage 3A and some 6” in diameter.
It was by now mid-February 2017 and I was seeing the consultant who explained the operation details, the consequences of any complications if the cancer has spread to my veins and approximate time frames for recovery and the like. By this time, I had dropped from 18 stone to about 13, apparently being young and thin would help with the operation!
Pre-op blood tests showed the reason for my exhaustion, I was severely anaemic to the extent they wouldn’t be able to operate until my haemoglobin levels increased, so I was given an iron infusion which unfortunately provided little improvement. A blood transfusion was scheduled for the night before my operation. Having been a blood donor since my late teens it was good to get some back! I didn’t realise that would prevent me from ever giving blood again, but it enabled me to have the operation which would save my life; I’m pretty sure I would not have survived much longer.
I got into theatre at the end of March. The last few months have seemed like a lifetime, with setbacks along the way such as things being cancelled and rescheduled.
My only criticism of this time would be that when someone sets a level of expectation, for example they say they will call you back on Wednesday and they don’t; to have that expectation dashed, to not receive that call, is a really traumatic experience, even though it may be something minor. When you have nothing else to focus on, this feels like the end of the world.
The day of my operation came, and my tumour was skilfully removed along with one of my kidneys.
On waking from the anaesthetic my cough had gone, that quickly – how bizarre is that? I still had a few night sweats, but they stopped soon enough, too. There have been a few post-operative complications, a common one they didn’t warn me about is that – because of the gases used in keyhole surgery – the scrotum can swell up with fluid. Almost a year after my operation they spotted a new metastatic tumour in my lungs, luckily, I was quickly referred for thermal ablation which was a fairly simple procedure and seems to have sorted that problem.
I am still having scans at three monthly intervals which, if next time all is clear, will go to six monthly and yearly after that.
The trouble I’ve had was with my GP who wasn’t aware that a persistent cough could be a sign of kidney cancer, however I would have definitely benefited from some blood tests. I unfortunately had sufficient ‘diagnosis’, albeit inaccurate, that meant I could explain my cough and didn’t need to keep bothering my GP. For the most part I had no other symptoms other than the cough and occasionally sickness, it wasn’t until I knew I was really ill when the sickness was more regular, the tiredness and the night sweats all started. Once I got past my GP and into the NHS the level of care was incredible, and I don’t think it could have been bettered. The skill and expertise our NHS staff and surgeons have is amazing.
Though back to earth with a bump, as one of my daughters said I had made a remarkable recovery; going from young and thin to old and fat again! Kids.