At 7.13 am on Friday 16th May 2015 I was standing on the side of the swimming pool as I did at the same time most mornings, but something felt different. My muscles feel stiff, just like I’d played a hard game of squash the previous day. A swim normally sorts out my stiff muscles. I jumped in and wished I hadn’t. I could barely move and only just managed to struggle to the steps and haul myself out. Something was very wrong.
The GP practice was on my way home and I decided to call in and was fortunate to get an emergency appointment. I explained that I was planning to catch the ferry to Ireland the next day for my youngest son, James’ wedding. The GP was puzzled by the symptoms but took some blood tests.
The following Monday I had a call from my GP (you know you’re in trouble when the GP phones you!) to say that the blood tests had revealed that I have a CK level of 27,000. CK or creatine kinase is a product of muscle breakdown which is normally less than 190 units per litre. The GP said that these sort of levels are usually seen in pedestrians who had been involved in serious road accidents or athletes who had run multiple marathons and he asked me to go to A&E immediately.
I was admitted to the local district general hospital where I stayed for three weeks whilst a series of tests and scans were conducted. I was allowed out for James’ wedding subject to strict instructions to stay in a wheelchair and to be back at the ward by 10 pm.
The scans revealed that I had a group of enlarged lymph nodes below my liver and the muscle breakdown seemed to be the result of a rare autoimmune disease, Dermatomyositis.
In order to make a diagnosis, the doctors attempted to sample the lymph nodes using a needle biopsy but this was unsuccessful. They concluded that a major and potentially risky operation was required to open the abdomen and access the lymph nodes below the liver.
Despite having friends and relatives locally I really wanted to be treated at home and had asked for a referral to The Christie. The day before the exploratory surgery was due to be carried-out I heard from Professor Radford at The Christie that he and his lymphoma team were able to accept me as a patient.
The staff at the general hospital had been great but they had never seen this rare combination of symptoms before. It was a huge relief to arrive at The Christie and to be told that they had seen patients like me before, rather than having a series of consultations, where they all said they had never seen my condition before and would I mind if they asked a colleague to have a look.
The Christie was able to sample the lymph nodes using a CT guided probe without major surgery and confirmed that I had non-Hodgkin’s lymphoma.
Professor Radford’s diagnosis was that my immune system was attacking the lymphoma and that to my immune system; my muscles looked similar to the lymphoma so it was attacking them as well. If they could cure the lymphoma then the Dermatomyositis would be cured as well.
Professor Radford was also able to refer me to the specialist rheumatology team at Salford Royal to help to manage the Dermatomyositis.
Six rounds of the ‘R-CHOP’ chemotherapy later the scans showed no activity in my lymph nodes and my CK levels were down to nearly normal levels. I had lost three stone in weight, as well as the ability to swallow and the muscular strength in most of my shoulders, upper arms, legs and trunk.
I worked hard to rebuild my lost muscle mass and function. This was a long process punctuated by small victories, like the day I could put my own socks on, or walk to the end of the garden without a stick. At the start of this year I had progressed to a stage where I could do everything I needed to, but not everything I wanted to.
Like many patients, I really wanted to provide some tangible help and support to The Christie. My eldest son Cliff suggested that his brothers and I should cycle the 300 miles from London to Paris in 3.5 days in order to raise money for The Christie. Considering my physical condition at the time, he might as well have suggested that I cycle to the moon! Still, with some trepidation, we put our names down for the September event.
My first step was to buy a suitable bike and I can still remember the look of pity on the salesman’s face when I couldn’t even lift my leg over the crossbar. My first target was to be able to cycle five miles, which I achieved after the first month. As the months passed by I put in over 1,300 miles of training and eventually I could cycle 90 miles in a day. The unknown question on the day of the challenge was could I get up the next day and do the same and then do it again?
At 6 am on Wednesday 13th September, Team Shelton (my sons and I) assembled with another 100 riders for the briefing at Crystal Palace in London. Ahead of us was 90 miles riding through the Kent countryside to reach the assembly point in Dover by 4 pm. Then we had another five miles to reach the overnight accommodation in Calais. The weather was dry but very windy. We arrived before 3 pm to find that the ferry was delayed by bad weather and finally reached our hotel at 11 pm, tired but happy.
The next day we rode from Calais to Abbeville, 76 miles through glorious Normandy countryside. The French roads are fantastic for cycling and I didn’t see my first pothole until we passed the 150 mile mark! We were beginning to relax into the ride by this stage and chatting with the other riders, all of whom had inspirational stories to about why they were putting themselves through the physical challenge.
On the third day, we cycled the 67 miles from Abbeville to Beauvais. Much to the frustration of the rest of Team Shelton I had three punctures in quick succession. Chatting to the team mechanic over lunch he explained that he has used 600 inner tubes in the morning repairing punctures due to small flints being washed onto the roads by heavy rain overnight.
The final day involved a 56-mile ride from Beauvais to Paris. I distinguished myself by gracefully falling off my bike into a flower bed in the Paris suburbs as I forget which foot to unclip at some traffic lights. We assembled at the Bois de Boulogne for the final cycle through Paris; round the Arc de Triomphe to the Eiffel Tower.
Alarmingly we were briefed to keep going no matter what and don’t stop for traffic lights, junctions, or even injured team members! Once we got used to riding in a large group, defying all known traffic regulations was surprisingly good fun. We got a great reception from the Paris crowds with a lot of cheering, blaring of car horns (supportive I think?) and only a few shouts of Le Brexiteers!
Arriving at the Eiffel Tower was quite emotional for me. My wife, daughter-in-law and 8-month-old grandson are there to welcome Team Shelton to Paris. We were treated to a celebration dinner and then got the Eurostar back to London the following day.
I am eternally grateful to The Christie. The expertise, care and kindness provided by Professor Radford and his team saved my life.
I also have reason to be grateful to The Christie charity. Team Shelton set out to raise money for The Christie in appreciation of what it had done for me. But curiously taking on the London to Paris challenge helped immeasurably with my recuperation. For me, and I suspect other cancer patients, recuperation has a psychological as well as a physical component. Becoming a person again, rather than a patient, and regaining confidence in my own body were big issues. The London to Paris challenge helped tremendously in putting me on the road to full recovery.
Having completed the challenge, I was pleasantly surprised to be asked to speak at The Christie charity sporting reception on 7th December 2017. More than 125 guests attended, all of whom had helped the charity raise over £2m this year from sporting challenges. A further 125 had attended a similar reception a week earlier. I found the event very moving and was amazed at the range of activities undertaken to raise money for The Christie. Running, cycling, walking and parachuting were all well represented along with some more esoteric challenges such as fire walking!
Interesting presentations were given by the chief executive of The Christie on the inspirational work of the hospital, by the charity on the important contribution it makes to support the hospital, and by former patients on how they had capitalised on the second chance for life that The Christie had given them. All those who had participated in sporting challenges were presented with “I did it for The Christie” pins and I will now wear mine with pride.
We are really fortunate to have this world-class cancer hospital in the North West and we should all do our very best to support The Christie.