Six weeks off.

 The visit to see the Consultant went quite well really ...   My ' numbers' have started to creep up again so I am going to be given a different treatment. I am going to be given a break of six weeks before starting the new treatment so that is better than nothing although it is not the remission that I had been hoping for .

 I was also given some news regarding the lump in the middle of my chest. The latest scan has shown it to be where two broken bones have fused  together badly overlapping and causing the lump. 

Apparently I had broken my sternum and that created the two separate bones that have now joined together badly. Breaking bones is one of the effects of the cancer. I have already broken various ribs etc. I must admit I did wonder why it hurt so much when I tried to take a deep breath. It was  my rib cage being forced apart where the sternum had broken .

 On a different note I am thinking of closing this blog down. Ten years ago I used to have large numbers visiting the blog and leaving comments but in those days my content was purely cycle related. Since then Vlogging on youtube has become popular and I think that it has had a big effect on the humble blog.... Also I don't think that people really want to read about the day to day problems of a cyclist with Terminal cancer..

 Anyway.  ....   these days the number of visits to the blog is very low and the number of comments is also low apart from a few regulars who comment every time they visit the blog. Without those comments it often feels that I am blogging to an empty audience and I now feel 'what is the point'. 

With Terminal cancer some weeks I really do struggle to post anything to the blog and I often feel that I am talking to myself. Anyway...  over the next few weeks I will think more about this but if the blog doesn't appear for sometime you will know that I made the decision to stop posting.As with life all things must come to an end 

The picture at the head of this blog post shows just some of the flowers that Anne manages to look after on our pitch.

Cancer is Rubbish...

 

Cancer is Rubbish ..... After two years of chemotherapy treatment and getting good readings from my weekly blood tests it seems that my cancer has now started to go wild. 

The bone cancer is now playing up and seems to be causing problems right across my skeletal system. The lesion on my breast bone is growing at an alarming rate. There are also other lesions in various parts of my body. 

I was hoping to have a remission at the end of March.... It was the thought of that which has kept me going through all the treatments and tests. This latest news has been a major psychological knock back. I am really struggling to get on top of it. I have a meeting on Monday with the main Consultant who will take me through the various options (if any) that I have open to me going on from here. 

As I said Cancer is Rubbish ...........

No cycling talk this week as my mind is still a bit numb from the cancer news above .

I will let you know the outcome of my meeting with the Consultant in next week's blog post ...

I will say it again Cancer is Rubbish!!!

Guilty.......

 This week I had a visit to the Oncology dept to have my Radiology treatment on the cause of the severe nerve pain which I have been having which is a mass in my lower spine.

 

I don't normally visit the oncology dept. I am linked to the Heamatology dept because my cancer is a blood based one. To receive specialised treatment so rapidly has just made me feel guilty .....

I look at the reports from the Ukraine and see young children with cancer

 who are now hiding underground unable to access their treatment and I just feel guilt that mine comes so easily.....

This week I have nothing further to say other than there are others far worse off than me .....🇺🇦🇺🇦🇺🇦🇺🇦🇺🇦🇺🇦🇺🇦

Sending good Karma...

 With everything that's going on in the world it seems right to send out some good karma.... There are a lot of people who need it right now......

Moving on to my bike dislikes I have another one this week. Tubeless tyres..... On mountain bikes it's all fine and dandy but I am against it on road bikes ...... Tubeless sealant can be messy..... If it does spill out it can leave a real mess over the bike. It also has to be checked every so often because it can dry out and needs to be topped up. I'm sticking with tubed tyres and change or repair the tubes as I have always done.

Health wise I was called into radiology on Wednesday to have a mapping exercise carried out. The growth in my back was matched up on a CT scanner and small tattoos were made on my body so everything can be lined up perfectly when the actual treatment is given which will be this coming Thursday. 

It seems that one treatment could well be sufficient sometimes a second one is given. In the meantime I have had my nerve pain medication increased slightly and it does seem to be helping.

I will find out soon if I am likely to have period of remission.  

Stormy Delayed Post

 Well the storms certainly made their mark. Over half the awnings on site were destroyed with snapped poles. The noise was horrendous and the caravan was rocking all night. There's nothing better than being close to nature but it can be scary at times ..

Following my thoughts on gravel last week I see that Chris Froome wants to see time trial bikes removed from stage races. He feels that training on a time trial bike is dangerous with a real risk of accidents. Even though a lot of his wins have been made on the back of time trials he feels that so much can be lost in a moment. So much time and effort goes into the race and it can all be snatched away. 

The same applies to cobble sections when they are in stage races. They are fine in one day monument races but shouldn't be included in a stage race when so much is resting on it.

Interesting points which I agree with. Time trials are a separate discipline and should be ridden as such . I started on time trials and there were a number of accidents with riders ploughing into the back of stopped cars because they were in the head down position. A time trial bike is difficult to train on. With your arms on the skis you don't have quick access to the brakes anyway. All  a bit different from the reasons that I dislike  gravel but similar in as much of a ride being ruined...... 

I had a meeting with a oncology radiology  consultant on Thursday and she showed me the scan images from a week ago and explained why I have been experiencing huge levels of pain that have been impossible to control. 

I have a growth on my lower spine and it is pressing on the nerves in the spine. Nerve pain does not respond to morphine. The plan is to reduce the growth with radiotherapy and remove the pressure on the nerve. Not all pain is equal so I have bone pain and nerve pain no wonder I've been in agony. On Friday I had chemo and an infusion so throughout the stormy weekend I have also been trying to recover from that ........

Just in case you were wondering my awning is still standing. It is an all season air awning and when the winds gust the air poles just collapse and then bounce back again. Solid poles try to resist the winds and that's why they snap..  The picture at the head of this post?  Just an image of the ordinary drop bar on the Tifosi.... no time trial bikes for me 

No gravel for me........

 Check out cycling channels on YouTube or have a look at cycling bike and component suppliers and all you see is gravel bikes...... 

Well let me tell you now I hate gravel. In this country most so called gravel routes turn into mud and slime. I have always liked to ride with clean components. Everything runs smoothly just as it was intended to do. Ride with the bike covered in mud and it will all grind into the components and speed up the wear. 

The riders on a lot of you tube channels are sponsored often riding bikes that are given to them to ride... They don't have to worry about wearing out the components as they often haven't paid for them. Currently there is a shortage of componentry. My local bike shop is having great difficulty accessing new bikes and parts.

 Why would I want to ruin my new bike that cost me almost £5k. I can understand the fun that some people get from riding gravel but it really doesn't suit the type of riding that I enjoy as well as making it more expensive. 

Another thing with gravel is the popularity of the 1x drive train. My Focus has a 2x with a 50/34  and a 11/34  11 speed cassette.. It's great for climbing with the emphasis on climbing gears with fairly close jumps between cogs. Use the front 2x properly and the chain keeps in line reducing the wear on the chain and cassette. 

A lot of 1x drive trains have some big jumps on the cassette wth cogs going to 44 or 46. Aside from the extra wear on those components a 1x will be slower uphill. The chain is not going to run in a straight line being prone to twisting because of the 1x and the very large dinner plate of a cassette. Add in all the mud and muck grinding away and the lifespan of the components will be reduced by quite a big margin..... 

No gravel riding is not for me. No way I want to keep replacing parts on the bike assuming that I could get them in the current climate of bike and part shortage couldn't afford it any way. 

The image above shows the cassette and chain on my touring bike ( now sold on) Nice and clean and smooth to ride. That's the condition I like all my bikes components to be in .......

My cancer pain has still not been brought under total control yet but it is still being worked on by the palliative care team. My bones have lesions that distort my skeletal system. They have a mind of their own... The one on my chest is really bad. It's a bit like the film Alien with something alive inside me and trying to burst out.:-)

My worry is that now Boris has decided that COVID is virtually no more people will not bother with sensible caution..... For me I have to maintain very strict care as  a person at extreme risk. Once the better weather arrives I will be able to sit outside and have visitors but I still need to observe very strict social distancing. I can't believe that I have been socially distanced with a few exceptions for almost two years now.

I do plan on visiting some friends this year but I will be super cautious.

Could it be rosy...?

 

This week I had a meeting with my consultant and I was told that all my results from recent tests are looking good. Some of the figures have fallen as low as trace. One of the figures had fallen from 19000 to 18.

 I have one more complete cycle of chemo over the next 4 weeks and one more infusion of Zoldronate to strengthen my bones...... It looks promising that I might manage a remission in March.... Things could be looking rosy ...  I am not going to believe it until it happens...  

  One thing that I have suffered with this past week has been agonising bone pain in my left shoulder. The consultant is going to arrange for me to have  radiotherapy directed at the point of pain which will reduce the pain. 

Even when remission is achieved pain in the bones can continue. This can happen because bone damage can continue to cause symptoms even though the myeloma is in remission. The consultant has explained to me that I will have some level of pain for the rest of my life however long that is...... 

The consultant was surprised that I have managed to ride my bike occasionally because even if I feel good I still have to overcome the bone pain...... Having always been keen on endurance cycling events I am used to managing certain levels of pain and I am sure that helps me control the pain with my bones when riding. I am planning to do a multi day ride in June if the remission materialises..... It could be rosy....... 

Most of my thoughts now are about riding my bike and cycling in general. Next week I will share some of these thoughts with you ..