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Now retired but busy still living..

Saturday, 25 September 2021

Cycling with Myeloma



 One of the entrances to the Nature Reserve at Derriford Hospital..... I seem to spend quite a lot of time at the hospital these days.......

Myeloma is the blood and bone cancer that I have it develops from plasma cells. Plasma cells are a type of white blood cell made in the bone marrow. The bone marrow is a spongy material inside the bones and it is part of the bodies immune system.

Normally plasma cells are made in a controlled way but in people like me with Myeloma the process is out of control and large numbers of abnormal plasma cells are made.

Myeloma is a rare cancer with only about 5000 people diagnosed each year. Doctors don't know what causes it.

Symptoms are varied but can include constant bone pain....  Extreme tiredness       ( fatigue) Tingling or numbness in the hands and feet. It is one of the most painful cancers.

I have multiple myeloma which means that the bone pain is in numerous bones of my body... Severe symptoms such as spinal chord compression are also a problem indeed I have already shrunk by about an inch due to this ... I have had bone marrow samples taken from my hip bone not very pleasant as a sample of liquid from within the bone marrow is drawn into a syringe..pretty uncomfortable as the marrow is drawn into the syringe ....I have also had bone marrow tissue removed for testing and none of this represents a good day out at the hospital. 

I am currently back on Chemotherapy for the cancer and this year I have had half a dozen MRI scans as well as x-rays etc.

Myeloma cannot be cured so there is no way that I will beat this but it can be treated so as to improve my quality of life and to try to control the symptoms.

As a keen cyclist there is no way that I can contemplate giving up cycling. I must admit though that the consultant was amazed that I had started riding my bike again and even mentioned it in his latest report on my condition.

Cycling with Myeloma is not without it's problems though. I used to be able to ride 80 to 100 miles before getting an aching neck. Now with the myeloma I suffer real agony in my neck after just 5 or 6 miles. It's all about trying to control and shut out the pain and luckily I do seem to have a pretty high pain threshold. 

If you have ever suffered with a bad tooth ache that causes you pain in your gum and jaw... well that is what the bone pain with Myeloma is like except it can be all over your skeletal system which obviously just adds to the difficulty of riding a bike....

I can take morphine for the pain but that is not a good idea if you are planning a bike ride for obvious reasons.....

I am determined to continue with my cycling indeed on my last ride I beat my furthest distance as well as my most ascent since being diagnosed so I am making progress on the bike.

People often ask why I am not on Strava but what would be the point. I am riding with a massive handicap so any Strava data would be of no value in comparison to other riders..

I thought that I would explain all this to you because due to it's rarity most people know nothing about this cancer and some people seem to think that it can be beaten in the way that some other cancers can be. A good remission is the best that can be hoped for and obviously that would allow me to continue with my cycling.

Most people who are diagnosed with this disease had never heard of it before the diagnosis and I count myself among them.....

6 comments:

Frank Kernow said...

Thank you Trevor for your detailed explanation of the problems you are having. Wishing you all the best. Frank & Sue.

TrevorW�� said...

@ Frank Kernow
Thanks both of you.... I thought a detailed description of my condition would be useful. Appreciate your comments as always...

Dave said...

Again, thanks for the explanation. But just being able to go for short rides is wonderful therapy in itself and just pootling around locally will fill your soul with joy. I'm desperate for them to sort my hernias out so I can get back on the bike.
I'm on Strava, mainly because I can record my routes and distances, likewise with my friends. Its always interesting to see where people have been.
All the best.

TrevorW�� said...

@Dave
Thanks for the comments Dave.
I do feel lucky that I am able to get out on my bike and as you say just pootling around can definitely improve the state of mind..... I am now up to twenty mile rides and later this week I hope to break the twenty eight mile goal with approx 1100m of climbing.
I don't know what sort of hernias you have but I too have had a hernia for the past few years. Mine is a Iguinal Hernia but seems to be kept in place when riding by my Lycra bib shorts.....The doctors don't seem keen to operate on this with every thing else that I have going on....

The bike shed said...

It's not the miles or times that count - it's the delight in the turning of the pedals and wheels. Take joy from it all!

TrevorW�� said...

@The bike shed.
For me the miles and times 'do' count. They are what gives purpose to my rides. I have always been a challenge/goal style of rider ever since I started time trialling in my teens. It is a personality trait of mine which pushes me on..lol

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