My name is Mark Williams and the 8th August 2019 is the day my life changed forever. A routine bathroom visit before bed and I instantly noticed something was not quite right. What were my initial thoughts? Fear? Ignorance? Secrecy? Panic? – Not quite, I knew I had an early start the following morning. A delightful airport run as my husband was off to visit his family in Poland; before that bathroom visit I was looking forward to a week at home ALONE!!!
In my mind I knew I had to have a conversation with my GP about the previous evening’s bathroom discovery, one I was not relishing but I had to park that and focus on getting my husband to the airport, not just any airport in the West Midlands but Luton!! A 6-hour round trip, extortionate airport parking and in the back of my mind making plans for the week ahead whilst maintaining a persona of normality for my husband.
His trip to Poland was to update his family on his recent autism diagnosis, not something that can be shared over the telephone, so he had enough on his plate. I couldn’t and wouldn’t add to his stress levels. We arrived at Luton, I reluctantly entered the short stay parking, knowing I will need to sell an organ to pay for it, and made our way to the terminal.
We had some lunch, talked about the week ahead, predominantly his, I couldn’t possibly share my plans; other than those I had shared already. My focus was to make sure he had no worries about me. As we ate, talked and watched the world go by time soon crept up and it was time for him to make his way through the usual airport formalities. We said our goodbyes and I made my way back to the car park.
At this point I am thinking, how much? how much? – £23 that’s how much for 2 hrs!!!It’s bizarre how a parking space earns more per hour than the average working man!! I reluctantly paid the fee, jumped in the car and called my GP to book an appointment for the following Monday.
I arrived home after a terrible 4-hour journey, 2 hours of which spent on the M6!! In this time, I had spoken to hubby no fewer than four times and his flight was delayed by 2 hours. Eventually, after a 6-hour delay he was airborne and I could finally take a breath. I went to bed and I can honestly say I didn’t sleep very well, the weekend passed in a blur and soon enough Monday arrived.
My GP carried out the usual tests and decided to refer me to a urologist at my local hospital. My appointment came through very quickly for the 19th August 2019 by which time hubby was home I could update him. Needless to say he was annoyed I hadn’t told him sooner, however with some context he understood why.
Fast-forward to the 24th September of the same year and I was booked to see the urologist for an update on all the tests had under gone – the importance of which I will share later;
• Renal Ultrasound;
• Contrast CT MRI Scan.
And boom….my mind went blank. I had kidney cancer!! I don’t really recall the conversation with the consultant but I do recall my world being turned inside out, upside down and a numb feeling throughout my entire mind and body.
Hubby was amazing, I could hear everything he was saying, asking questions I would have asked but most importantly he “picked me up and carried me”. My treatment was to have my right Kidney removed, and a provisional surgery date was set for the 29th November 2019. I had to have more tests before surgery, most terrifyingly a full chest scan to see if the cancer had spread. I took two days off work to digest the information I had been given, to put plans in place for work and surgery and I was back to work. There was no point in staying at home, I needed to keep busy and work certainly did that for me. My role as a Learning Delivery Officer (LDO) keeps me busy and took my mind off the diagnosis.
I had the chest scan on the 4th October and the results came in on the 9th October, my chest was clear – no spread to my lungs!! I was ecstatic I was so scared of the cancer having potentially spread to my lungs, surgery had been bought forward to the 29th October – I thought let’s get this done!!!
I just had one more hurdle to overcome and that was sharing my diagnosis with my son who was in his final year at Uni. This was the hardest conversation I have ever had to have and I had to wait until a week before surgery because my son had the flu so had to steer clear. Me and hubby took a trip to North Wales, where my son lives when not at Uni in Liverpool. Me, Hubby, son’s mum and son sat down and shared with him what was going on.
He took the news fairly well and like me has a very pragmatic attitude, he had a lot of questions, such as will I need chemotherapy, radiotherapy or immunotherapy? I could honestly say I was lucky, my consultant had explained the tumour was contained within my kidney and the course of treatment was to remove kidney and recover….no need for additional treatment.
Tuesday 29th October 2019 – the day of my surgery; to say I was nervous would be an understatement. You know you are in good hands, you trust the experts but you can’t be 100% certain all will be well and there is a slim chance you won’t come out of it.
To account for the worst case scenario, I had put safeguards in place for hubby and my son. My Will was updated, a letter, final Christmas presents, funeral plans and a network of support for hubby and my son were all sorted.
I don’t recall much after being given an epidural – yes you read correctly and epidural – I thought for a split second, hold on and epidural I am having a kidney removed, you won’t find a baby anywhere, have they mixed me up with another patient does my stomach look that big?? I was soon reassured as it was normal practice for such surgery to apply a pain blocker for the lower part of the body. I thought PHEW!!
I was in surgery for 6-hours, all performed by a robot (DaVinci Robot), no complications and hubby and son were waiting for me to come back to the ward. I was in hospital for two days’ post-surgery and sent home to recover.
Recovery went well, I had to go back to hospital on the 5th November 2019 to see if the catheter was safe to be removed, alas it was, and I was discharged again. I was recovering well until the early hours of the 7th November when I woke and felt awful. I was rushed back to hospital and was diagnosed with sepsis!!
Oh my, I had never felt so poorly or vulnerable. I was in hospital for a week and it was worse than the stay following surgery but I got through it with the support of family, friends and work colleagues.
I returned to work on the 3rd February 2020 and full time the following month. My Line Manager listened to everything I was sharing with him and gave me control of my own sickness absence and return to work under PTMG.
I wanted to share my story with you all to raise awareness, so my advice is this; kidney cancer affects both men and women, it has no barrier to age and the most common symptom is haematuria (blood in the urine) or lower back pain. I had the former. It is absolutely terrifying, but it must be checked out. It may be something or nothing. Men are most likely to notice immediately but it’s not so noticeable for women, so please check once you have finished your ‘seated performance’!!!!
If you are referred for tests, make sure the tests I mentioned earlier are carried out – ALL OF THEM – don’t be fobbed off by your age or symptoms. Demand the tests are carried out.
Moving forward, I am having treatment for PTSD (post-traumatic stress disorder) , although I have recovered physically I still struggle psychologically, I am supported by PAM Assist, MacMillan and Kidney Cancer UK who have been brilliant, but my aim is to become a regional and national ambassador for Kidney Cancer UK.
A special thank you to all who have supported me, hubby and my son during the last 10 months.
I am taking part in Kidney Cancer UK’s Walk for a cure and would love it if you would support me with a donation, no matter how big or small, I would be so grateful. My fundraising page is HERE. Thank you.