Mark has kindly shared his journey and what it has been like for him, shielding during the Covid-19 pandemic.
The first sign of symptoms was a dull ache in my left kneecap area, my left pelvis towards my back had a lump, which I was told ‘it was a trapped muscle that can’t relax’ and the bottom of my back used to hurt whilst sitting down for a long period of time or sleeping at night.
I had these pains for around six months with a few visits to my GP. Then one day when I couldn’t keep down any food or water without being sick and not knowing where I was, Hannah, my fiancée took me to A&E for the second time but to a different hospital. I had yellow eyes and a bloated stomach, and they asked if I had an alcohol or drug problem with the colour of my skin and eyes.
They rushed me through to a bed and gave me morphine. I don’t really remember much about it all, but I had a CT and they told us they had found a lump in my groin. I was admitted to a ward and they carried out an MRI scan. The doctors then told us they had found a tumour and referred me to Gobowen Hospital. I had an appointment a few days later and they confirmed with a biopsy I had Ewing sarcoma.
I was then referred to The Christie Hospital in Manchester and given a treatment plan. I had loads of tests done to check my kidney’s, liver and heart were all working well enough to start chemotherapy. I had a double Hickman line fitted and I started treatment exactly one month after being admitted to A&E.
From being admitted through A&E to having the biopsy it was just 5 days, then another 10 days to confirm the diagnosis.
It didn’t really sink in when they told me, I just wanted to get on with it all and get better.
I chose to be put on a trial, EuroEwing2012. I ended up having the VIDE/VAI leg of the trail. I had six sessions of VIDE, eight sessions of VAI and 30 sessions of radiotherapy. The chemotherapy was hard going, I had so many side effects. Radiotherapy wasn’t bad. The doctors and nurses that have seen my skin throughout the treatment where shocked how well it had dealt with the amount of treatment I received. I found a cream that worked amazingly.
The first set of scans showed that my tumour in my pelvis had shrunk. My tumour in my spine (T12) had shrunk and my lungs were now showing clear. The second scans, halfway through VAI showed that my pelvis had shrunk a little more. My spine was stable and my lungs clear.
I am still in treatment, and in June 2020, I received my results from the latest CT scan and MRI scan. My scans show my pelvis and spine are stable. My lungs are currently showing spots, but it could be scar tissue from the radiotherapy treatment I had. I will have more scans in around two months and go from there.
I used to ride mountain bikes and BMX freestyle a lot, that doesn’t happen to the same intensity anymore, but I still manage to get out on the mountain bike a little bit. My left leg feels heavier than my right and doesn’t move as quick but still useable. It doesn’t stop me from hiking and walking miles with the dog.
Shielding during the Covid-19 pandemic has been a massive change on my life. Once I had finished treatment, I got the ok to go back to work. I went back but on reduced hours. I was working for about a month or so before Covid-19 was announced, which put me under the shielding list.
I have been lucky enough to be able to get home delivery most of the time during the pandemic, also family members have helped too. It has been hard getting used to the shielding but it’s better to be safe than sorry. I have still managed to walk the dog where people don’t tend to be, local fields and woodland area’s close to the house.
My strength has been having my partner next to me throughout the whole thing. Helping me on the days when I didn’t want to get out of bed, or eat, or drink, she helped me through it all. She has always been looking for more help with the side effects, this is how we found out about the cream for the radiotherapy and the changing little things every day that helped with the side effects of the chemotherapy.
My advice to others is to stay positive as much as you can. Some days are hard but accept them. Take that day when you want to sleep all day in bed. If you want a pizza at 2am when you haven’t eaten all day, then go and get it! Do stuff that makes you happy when you feel like you can. Light exercise, just a walk around the block in the fresh air will help you so much!
I had never heard about this form of cancer before I got it. They say it’s rare but there are A LOT of people out there with this type of cancer. It needs research, it needs noticing.