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.....

Thyroid Success ...

On Monday I had an appointment with the ENT Oncology Surgeon for an update on my recent operation. It would seem the  procedure was a success as there are no signs of the thyroid cancer that I was diagnosed with back in December......

It was thought that the cancer had spread from the thyroid itself to my lymph glands and two levels of those were removed as well. In terms of long term prognosis the thyroid cancer was the least threat to my life of the three cancers that I have....

 It is a pity that the Bone and Blood cancers can't be treated as easily. As I have said previously there is no actual cure for these only treatment to slow their growth down and help me with pain control. 

The Hematology department have wasted no time in getting me back on the chemotherapy indeed I was back in the chemo ward yesterday for treatment. (Image of ward above). 

Today I am feeling pretty poor following the treatment and will probably end up spending the day in bed. Other than exhaustion I don't have any major side effects when I have chemotherapy. What I have found in the past is that after the treatment I have a couple of days of feeling very tired and then I am back to normal..... Well as normal as you can be when suffering with blood and bone cancer.

 Some people are really badly affected by the treatment and have ongoing sickness and general nausea as well as tingling in the feet and hands and lots more luckily I seem to get away with very little in terms of side effects. 

These new rounds of chemo will probably take me up to Christmas.

Day out for the Tour of Britain.....

 On Monday Anne filled me with my medication and took me out to just the other side of Yelverton so that I could watch the riders in the Tour of Britain come through. 

It was great to get out and have a picnic at the side of the road . I had a seat with me so that I could take the weight off my legs which is pretty important as the bone cancer certainly restricts the amount of time that I can stand even with the pain killers that I take.

 Before the cancers took hold last year I had started to ride on these local Dartmoor roads and was learning the best way to tackle the hills to Princetown.... Two Bridges and the Warren House Inn so it was great to see the Pro cyclists riding what are now my local roads..... Mind you I paid the price for my day out as I was completely wiped out right through Tuesday and it was only this morning that I felt that I was starting to get back to where I was before Monday. 

Next week I have an appointment with the surgeon who removed my thyroid and lymph nodes so I should find out how successful the procedure was at removing the thyroid cancer bearing in mind that it had spread. A couple of hours after that appointment I have another one with the consultant from heamotology and will then find out when they will reintroduce the chemotherapy for my blood and bone cancers.....

The Best View I've Had ...

 These views were from the ward I was in moments after I was brought up from the Recovery Unit following my surgery. 

I have been lucky in my life to have seen some wonderful scenic views in some wonderful places in the world when I have been backpacking or cycling......but believe me none of them had the same impact as these views ...

 Because of the risks involved with the surgery due to my multiple heart conditions I really did not expect to survive the operation. The requirements for the treatment of my multiple cancers are the complete opposite to what is needed to control my heart conditions.

 Everything had been spelled out to me by all the various medical departments involved regarding the risks involved in proceeding with the procedure as well as the certain outcome by not having it done ... 

I really did not have a choice but I was certain that I would not get through the surgery so to wake up and see the above views had a real impact on me. Going in to the operating theatre I felt that they were my last conscious moments of my life. 

It was very difficult trying to hold all my emotions together but I did manage it. I wanted to at least leave this life relaxed and under control. The euphoria I felt when looking out of the ward window elevated the view to the best and most stunning view I had ever experienced.

 So where do we go from here?

 Well we won't know for a few weeks how successful the surgery actually was. The Surgeon who did the procedure has a reputation for being the best in the south west of the country for this type of operation but we need to wait for the results from the lab from some of the material that was removed......

If it still shows the possibility of cancer remaining then I will need to have follow up radiotherapy of some kind to try and eradicate it. However this is all just part of what is going on as I still have the other two cancers that need to be dealt with and I am only part of the way through the treatment for those.

 I was told when I was first diagnosed back in November last year that there is no actual cure and as such my cancers are terminal. Remission is what we can hope for and trust that it will be a long one.

 I have been told that there is only a 20 per cent chance of surviving beyond two years from the date of first diagnosis. I am very determined that I will be part of that 20 per cent group !!

Well I Survived....!!!.....

 Well I got through the surgery ok. The operation was delayed from Friday the 13th and took place yesterday. I will post a more detailed report on it all in about a week's time......

Taking the Risk....

 

I mentioned in my last blog post the choice that I had to make regarding surgery for one of my cancers.... The thyroid cancer.

Well after lots of visits to different departments at the Plymouth Derriford hospital I finally made the decision to accept the risks and go ahead with the surgery. I really felt that I didn't have any other choice. 

The date has now been set for the surgery to take place on Friday 13th August. It's a good job that I am not superstitious as the date wouldn't fill a lot of people with optimism. 

On the assumption that I survive the surgery the chemotherapy for my blood and bone cancers is likely to start again in early September. 

Yes .....!!

 

Yes!

 Since my last post and after two months of building up to it with the use of my turbo I finally managed to get out on the roads on the new bike.

I have now managed four rides out on the roads but it has not been easy. I have to be on a good day when I am not suffering with too much pain.... and the weather needs to be dry as riding in the rain would not be good with my health condition.

 Getting these things to match up is not easy as so often when the weather has been good I have felt so ill that riding a bike would be impossible and then there have been days when it has been pouring down with rain but I have felt able to ride.

I have not ridden far on each ride .. the first time I managed seven miles and my last ride was fifteen miles.

My consultant has been pleased with my response to the chemotherapy and other treatments and currently they have temporarily stopped treatment for the blood and bone cancers and are looking at options for my thyroid cancer which by the way has also spread to my lymph nodes. 

The problem is that the surgeon is not satisfied that I would survive surgery due to my hypertrophic cardiomyopathy condition.

 If he doesn't operate then the thyroid cancer will kill me sooner rather than later and if he does operate it is likely that I will die on the operating table. That is my current choice.

 

At the moment I am having more tests to get as much information as possible before I have to make a decision on which way to go.... I will let you know what these additional tests etc come up with in my next post.....