This is my second blog but my third time on the ‘kidney cancer rollercoaster’. Previously I shared my experience of how I lost one kidney to cancer, only for it to return some years later in the other and explained in a video for Kidney Cancer UK  how I was treated using cryoablation in 2016.

This is Mike Tunstall’s update blog, June 2020.

My follow up CT scan showed the treatment had been a success and it was agreed I’d receive annual follow up scans to monitor any possible new growths.

Moving on to December 2017 and my next follow up where I received an abdominal CT scan. Unfortunately, this revealed a tiny tumour in the uncinate process of the pancreas. It was suspected to be metastatic kidney cancer or a neuro-endocrine tumour, but further tests were needed to confirm the diagnosis.

I was promptly referred to the Hepato-Pancreato-Biliary (HPB) team at the Royal Liverpool Hospital where I had several more specialised scans and biopsies to ascertain the type of tumour and to determine treatment pathway.

Several months later I was diagnosed with metastatic renal cell carcinoma in the pancreas. Kidney cancer spreading to this area is apparently very rare. The good news was the tumour hadn’t grown too big and initial scans had suggested it was far enough away from the large portal vein to allow surgery. But there was still a small chance that once they had started the operation, if they felt it was too close to the vein then surgery would be aborted leaving palliative care as my only option.

On Sunday 30 September 2018, I was to be admitted to hospital but first Kaye, my girlfriend, and I had a huge carvery; the last supper as I dryly referred to it! On the Monday I received a pancreaticoduodenectomy, also known as a ‘Whipple Procedure’. Half of my pancreas together with the tumour, gallbladder and part of the duodenum were removed during a mammoth eight-hour operation.

They monitored me overnight while I was in the post-operative critical care unit before going back to ‘5A’ Ward -also known as PERU (Pancreatic Enhanced Recovery Unit) – the next day with a multitude of tubes hanging out of me! The operation had been a success with only one complication, a pancreatic leak which I had drains inserted for. I was very sore but regardless, I was out of bed the next day, getting stronger and more mobile over the week. My surgeon, Declan Dunne is a great believer in fitness both before and after surgery and made sure I didn’t lay in bed all day! And Declan has his own story of recovery to tell, too.

After 11-days I returned home to continue my recuperation. I have to take medication with every meal- to do the part of the job my pancreas would normally do – but it’s a small price to pay for still being alive.

My first 6-month scan was clear, as was my first annual scan and my next is due in October. I am most grateful to my surgeon Mr Dunne, my specialist nurse Phil Whelan and all of the team at the Royal Liverpool Hospital. They truly are amazing.

Everybody stay safe, Mike.

Allan Richardson is four years into his kidney cancer journey having had a radical nephrectomy in May 2016; Stage 1 grade 3 at Norfolk and Norwich hospital. He is currently being monitored for two lung nodules which his last three scans have classed as benign. In this time Allan’s life has been stressful and complicated. He’s been trying to sell his property in Spain, so has been travelling back to Norwich every four-weeks or so, as his partner had a kidney and pancreas transplant a year ago, but she is now unable to travel or go out in the sun due to the possibility of skin cancer. Alan splits his kidney cancer treatment between UK and Spain and has just returned from Norwich stopping off on the way, they closed the border and so he found himself locked down in Gibraltar; stuck between his home in Norwich and his Spanish house in Marbella.

This is his lockdown story:

I’ve been out of lockdown in Gibraltar for three-weeks now, the first week we were given two-hours a day to leave our homes and go to designated beaches to exercise and get some fresh air. Prior to that, I guess I was lucky as I was able to go down to the basement car park in the apartment block and walk round and round with my dogs for a couple of hours each day. It was mindless but, we got out safely into a lift, sprayed all the buttons and wore a mask.

I was lucky because I had no issue with getting food deliveries, and I wiped it all down each time before putting it away.

In lockdown here in Gibraltar, like all of us, the only contact I had was by video but this, for me, was a double edge sword. Yes, lovely to see all my friends and family, but at times finding it very very hard being alone even though my two dogs are great company.

Now I’m back in my home in Marbella, sat on the patio looking at clear blue skies, the dogs are happy they’re back in a house with a garden, they are no longer sleeping all day with nothing to do.

I’m sure like all of us, I coped, but now with the ability to go out, walk the dogs, and with freedom I’ve changed. I’m still keeping my distance from everyone, I’m not shopping, I’m still getting deliveries, and also some friends are doing it for me and leaving it outside the door.

I’ve mentally and physically aged these past months. Physically, I’m not able to do gardening or exercise in the gym, my scoliosis has been so bad this last four-months without the gym, there have been times when I’ve just had to lay on the floor for hours to ease it. And then getting up off the floor was a nightmare!

Mentally I feel I’ve aged, it’s hard to explain. Maybe it’s more drained than aged.

I still haven’t seen any friends or family as I can’t travel, neither can they, but hopefully soon we can. Will I travel; yes. Coming back to the UK will mean renting for two or three weeks and just seeing my partner and aunts through windows as they’re still self-shielding, but that is better than nothing.

Like many, my scan has been delayed, hopefully I’ll be able to have it in July, which is eight-months instead of six, but that’s fine and I’m ok with that. I know the strain that many of us have had with delayed appointments/ scans/ follow-ups etc. have been hard to deal with, and of course now maybe some of us are still wary or even a little afraid of going back into a hospital, but we need to and we have to realise that all precautions in hospital units are in place to keep us safe.

I know so many of us have felt alone, anxious may be slightly depressed. But, we are slowly coming out of this, though some like my partner and aunts are still self-shielding and its so very hard for them, as it is for anyone who is still self-shielding.

I also have friends who were self-isolating, a few are still fearful of going out or having relations and friends in the house. They are just seeing them in the garden or through a window.

I am not the same person I was in March. The simple things in life have taken on a greater meaning, things that I took for granted, like seeing people, friends or relations, are now so important to me. Sitting in the garden seeing flowers, hearing birds sing, freedom albeit not as before. I’m walking my dogs along the seafront, I have my mask, but as its 28c here it’s impossible to wear it walking so I just avoid people. We have to wear them in shops, not that I’ve been in any, I do wear it if I stop at a cafe, sitting away from everyone, but I still feel uneasy doing that.

Life hopefully will return to some normality, but the world has changed, and we need to adjust. Maybe, like me, you’re finding out that some things you thought were important in the past are not so important anymore.

Family and friends mean more than before now and I no longer take them for granted.

Keep well, keep safe and look to a brighter future together with our loved ones

Alan