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I Didn’t Plan My COVID 19 Experience To Include Cancer And Losing A Kidney But It Happened. And When It Did I Just Had To Get On With It.

I didn’t plan my COVID 19 experience to include Cancer and losing a kidney but it happened. And when it did I just had to get on with it.

Obviously, nobody could’ve predicted how 2020 would play out. But, as much as I wasn’t ready for Covid-19, I definitely wasn’t ready to lose a kidney to cancer too.

So I can safely say that my fiftieth year on the planet has been an interesting one. It all started so uneventfully, too. Birthday celebrations, colds, walking the dog, Cheltenham. Then a letter landed on my doormat, inviting me to meet with a consultant. I’d honestly forgotten that I was on a waiting list, following an infection back in May 2019. Eight or nine months later (this was around February/March), I was told that the NHS was backed up and busy, so I was being sent private – to the Spire Hospital up at Murrayfield. I thought about not bothering. There was a little bit of pain in my side, but not much else. In that typical male way, I thought it probably wasn’t worth the bother.

In the end I went. A good thing too.

At the appointment I met Dr Al Jaafari, a lovely man who gave me a thorough once over, then told me he’d take a look at my old scans from the year before and send me for some new ones. He sent me for an MRI there and then on the Wednesday, he called the next morning, worried. “There’s something on the right I don’t like, I will need to give you a deeper scan”. A shadow, and it wasn’t Hank Marvin.

It was the last week before the scanning units shut, as the hospitals got ready for a storm of Covid patients. He got me in on the Friday, there were just two members of staff left to do the scan on the whole unit. This time, he was 95% sure – I had a 10cm tumour on my right kidney. But, in his words, a good cancer to have, because an operation could take it out. A letter came, confirming all the details, it was dated the 1st April. I felt lucky they had found it.

For my operation, I was referred to the wonderful NHS. (And I truly mean wonderful. No amount of doorstep clapping will be enough.) I had a series of conversations with my consultant, Dr Steve Leung. What a wonderful man, talented beyond belief and someone I had numerous conversations with across two stays. I found out that they’d be taking the whole kidney out and that the tumour was extremely close my heart valves. This would be a big op with all options possible.

But I remember feeling lucky and that it was just like having your appendix out.  “I can deal with this, I am a strong person.”

Dr Leung sent me for yet another scan, which offered even more news. The left kidney wasn’t very big, so I’d likely end up on dialysis. Hmmm. Cancer was one thing, but now I’m thinking that I’ll be a renal patient for life. This news came with a final piece of advice: “You could catch Covid – you are big guy, you have high blood pressure, you’re type-2 diabetic and the surgery is open”. My brain went into a state of denial, confusion and in truth I felt scared. I had a few bad days thinking about my impending terminal decline then I got some really good advice, “They wouldn’t be doing this surgery if they didn’t think they would be successful”. I have to say it really helped me click on, but a another friend told me that it “won’t all be plain sailing. There will be good days and bad, and more bad news”.  The delivery from the Doctors was hard, there was no sugar coating (it has to be tough, maybe a bit more empathy at times mind!) and it did knock me for six, but you have to find your way past it and it was two pieces of advice from people who had been there that helped enormously.

Boxes

Before then, I never fully how realised how my brain works. I realised that, through years of being a problem-solver, I use boxes to get my head round things – compartmentalising any issues I’m facing. It’s part tick-list, part survival strategy. It’s been vital when family members have passed away, when I failed my O Levels and – of course – for multiple times in business. Without thinking about it, I was putting together my plan.

My first box was preparation. I needed to get fitter and I had around six weeks to do it. I got walking more and more each day, and went onto my renal diet that allowed just 2 grams of salt a day – (One small tin of baked beans equivalent,try it for a day – it’s very tricky). Funnily enough, I had asked the consultant about getting fitter and he said, don’t worry about that or your diet, just live normally. I ignored that because it helped me focus and it was the right thing for me to do. With all the golf courses closed, it was me and the dog walking round Kilspindie and Cragielaw, pounding away as much as I could do. Although I was shielding, there was nobody about. It was tough. I wasn’t fit enough to do 2500 steps when I started, but I was doing 12,000 steps in a walk without any problem by the end. I also needed to prepare my finances, have a will drawn up and sort out all sorts of paperwork. I spoke to Macmillan and they do such a good job, for me I didn’t feel like I needed them perhaps as much as others do. Mental toughness is one of my great strengths, and that was a prop I didn’t need. I did however stay off the internet as much as possible – you could end up throwing yourself under the bus.

The second box was communication. Telling people was hard. It’s up there with death – something we just don’t speak about. What do you say? What do you expect your pals to say back? Do you pick a select few or broadcast it far and wide? Putting it out on twitter wasn’t for me. So I’m sure that some people will only be finding out now – if so, don’t take it personally. Having the same chat again and again just wears you down. I had lots of proper chats with the people closest to me, I wasn’t dwelling or feeling sorry for myself and hopefully it helped put the people who care for me at a bit more ease. “I can’t believe how positive you are” was a sentiment I heard often. I was truly thankful with all the people who took time to show me love.

Reality was the third box. It was like opening a door to get to the next room – once I’d made my preparations and talked to people, the most important thing was to get through the op. A guy also called Tony took me through to the operating theatre, where I was surrounded by a team of people who just took over. I went to sleep thinking about my family, my partner and my dog. It still grabs me in the tear ducts thinking about it,  but I was completely accepting of my fate then, whatever was coming.

I woke up and, in truth, I couldn’t believe it. With the worst of it done, my mind went straight to how do I get better and fitter. After my mum had open heart surgery at 85, she always tried to do a little more than the doctors asked her to – and I thought the same. So, even though I’d woken up in High Dependency Unit with a collapsed lung and a temperature, I was determined to get into that bloody chair next to my bed on the first day.

Health Food

It is funny that throughout this little things give you signs you might be ok, I woke up and my first two nurses to look after me in HDU were called Elizabeth and Ian – my mum and dads names, a good sign! These nurses are super natural in pandemic conditions, in a sweltering ward, swaddled up in PPE, they were beyond amazing. All the staff on the HDU were. (The food, not so much, bar Anne’s Toast.)

I got into that bloody chair, I even wandered around the corridors a bit and then I got off that ward.  They thought I had Covid as I was running a temperature and had a sore chest, so I ended up in my own room.  Thankfully it was ‘only’ pneumonia.

Getting treated during Covid was bizarre – there was literally nobody in the system. The usual day-to-day operations were all cancelled and everyone “medical” was waiting around for patients who were just not turning up. Daily briefings and headline warnings had scared everyone away, with the perception that going to hospital meant catching the virus.

In my mind, hospitals were clean and clear with their strategies – I never saw anything Covid related where I was. I did have tests, but they were routine. I do fear for the backlog this has created, which is even more reason to get yourself to your GP if you think you need to, don’t sit there worrying and doing nothing.

Obviously, lockdown meant no visitors. So it was just me, my nurses and my consultant against the world. For entertainment I had a telly (without remote) and a few lively whatsapp chats, with friendly banter, piss-taking and dog pictures, not to mention my missus keeping me sane and updated.

My job then was to practice breathing and move about as much as I could. They let me loose on the wards, walking with my new friend Kenny the Mannequin trolley – he was awfully thin and didn’t say much, though he did keep beeping at me.

Since I got home, I’ve been through a bunch of other boxes: exercise, sleep, low-salt diet, lots of water. A slight detour back to hospital to have an emergency stent, then another operation to remove a kidney stone. But I’ve had the all clear from cancer, and I’m clear of dialysis too, so far. Every time something has been put in front of me, I’ve managed to open the door, not always straight away but I have just kept pushing. You have to.

Thanks

Oscar speech time: I owe huge thanks to the staff at the Western General. From consultants and cleaners to the nurses and even the admin folk, they are all wonderful. Thanks for the laughter and the caring. To my consultant Dr Leung for all those chats. To Dr Al Jaafari, who took the time to make certain I got that scan knowing what was coming.

Scarlet

To my friends and family who have been generous to a fault, just being there has been such a support – the list of people has been truly phenomenal: Rob, Alistair, Bob, Mags, Derek, Annie, JC, Mickey, Teresa, Kenny, Mike, Hazel, Gareth, Nik, Zander, Mark, David, Dougie, Ziggy, Crunchie, Giles, Stuart, Grant, Alan, Steve, Emily, Dawn, Louise, Joe, Sarah, Cathie, Ian, Fiona, David Ashforth for sending me his new book, Commander Bob, Lynda, Brian, Gary, Clare, Claire, Steve H, Peter, Craig, John C, Andy, Jervo, Jappo, Wilson and far too many others to list everyone. To the clients who have all stood by me and have kept giving me bits of work to keep my brain from turning to mush: Gareth, Nik, John, Lesley, Dougie, Laura, David, Tala, Michael, Dougie, Stuart, Nathan and Simon.

To all the nurses in Urology, Lorraine, Rachael, Nat, Paula, Anne, Nicola, Elizabeth, Carol, Ricky and so many more who have been brilliant. To Dr Leung who is the best in the business, a man who is not like many others I have met. To Dr Al Jaafari who didn’t have to go as far as he did, thank you.

Big hugs to my partner Elaine who has taken on so many things on and lived through everything. My walking pal – my cheeky dog Scarlet and the rest of my family. I love you all.

A few coppers and a few pence always helps – Cut and paste https://www.standuptocancer.org.uk/donate?gclid=EAIaIQobChMI6Ouw8sno6wIVY7R3Ch20GACMEAAYASACEgLLPvD_BwE&gclsrc=aw.ds

Finally

I really wasn’t sure whether to write about this whole passage of my life, but these things are so important and not often talked about.

You must go to the hospital or see your doctor if you have any doubts about your own health! – I’m very lucky. If things had been slightly different, I would probably be sitting on my settee, completely unaware what was happening to me. I had no real symptoms, just that very occasional tiny pain in my side. So, if you are reading this and if you’re not sure about something, if you’re feeling sore, if you’re worried – just go and see your GP! Don’t wait!

It’s good to talk and share experiences – I have always thought that when you lose someone close to you it helps you deal with death and the sorrow that we will all suffer. Sadly we will all have close relatives, friends and loved ones who will get Cancer. Our job is to help them keep their spirits up by being positive around them, sending them funny things, and just talking to them normally as much as you can. It’s a huge part of the process. Help them focus on the things they can actually do, getting in that chair, walking the dog, altering their diet – just talking. I am not sure we know the vocabulary to use but I am not one who wants to  talk about ‘fighting’ it. Courage and spirit are all well and good. But, for me, having normal conversations – talking, laughing and listening are so much more important and powerful.

After her heart operation, I used to say to my Mum when she felt low that it was better than the alternative. I can safely say that it is.

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