Where are we now....?

 Well it's been a few weeks since my last blog post so it's probably a bit overdue for a proper update.....

 The palliative care team have now adjusted my morphine doseage in an attempt to get my pain under control. To a large extent it appears to have worked but the downside to this is that I spend a lot of the time asleep and also have problems in turn with constipation for which I then have more drugs to try and control that. 

The pain comes from lesions on my bones which can cause growths on my skeletal system to both break and distort the bones themselves. Surpressing the pain with morphine doesn't stop the continuing damage to my bones which is the cause of the pain in the first place but it does make it a bit easier to deal with. 

One thing that I find difficult to take on board is the fact that apart from visits to the hospital and the occasional socially distanced bike ride and a few other odd occasions I have effectively been locked away for almost two years.

 Because of my completely useless immune system I have to keep away from other people as much as possible so I have hardly left the confines of the caravan for those two years. Obviously if the weather is good I can sit outside but to all intents and purposes I have been effectively a prisoner for the entire time with almost no contact with others...... There are lots of crimes that I could have committed that would have given me a shorter sentence........

The latest easing of the 'rules' does not improve things for me and if anything increases the risk..... For people like me we will still have to remain locked away. The hospital constantly reminds me of the risks and to be honest at the moment I can see no way out of the situation...... Christmas and New year was just like every other day almost a case of Groundhog Day.........

 I have had one complete cycle of chemotherapy since Christmas and am currently on a two week break following an infusion of a bone strengthener.....  The week before last I had an X-ray...  an MRI scan and a CT scan all within the same week... For some people a scan is a major event but for me it is a regular occurrence. 

I hear a lot on the news about people's mental health suffering because of the restrictions that COVID has made on their lives..... To be honest I don't feel that my mental health has suffered by being locked away... It's just something that you have to deal with. I have to admit that having a terminal cancer would be bad enough on its own but having it during a major pandemic has not made it any easier to deal with..... 

On top of all this there is also my heart condition to be dealt with which makes the control of the cancer all the more difficult because the treatment for that is in lots of ways the opposite to that required for the cancer..... 

On Monday I have a meeting with the consultant in charge of haematology to discuss my ongoing treatment.... It seems likely that I will have one more complete chemotherapy cycle and then hopefully I will manage some level of remission.. How that will tie in with me having to remain locked away I don't know but I will deal with that at the time one way or another.....

 I don't know how I will do it at the moment but my main concentration of goals is to achieve some level of endurance ride on my bike this year..... With this in mind most of my upcoming blog posts will be about my thoughts on bike riding....  I know that if I concentrate on this it will help me to achieve some level of bike riding success....... 

And now to answer the question that you are all asking .... What is the photo about at the top of this post.... Well I had to have some sort of anti pneumonia vaccine this week and I was made to sit in a waiting room with this huge plant that I had not fully looked at before..... It dominated the room a bit like my cancers seem to be trying to  dominate me........... It seemed to be a good idea to kick off this post with that image.......

My last blog post for a few weeks...

 Yes this will be my last blog post for the next few weeks.

I am currently approaching the end of my current chemo cycle and then I will have a break over the Christmas period. Following that I will probably have two more chemo cycles taking me to about March. 

I am praying that after that I am lucky enough to get some kind of remission that will allow me to get some proper riding in on the bike. I have lots of cycling planned but I will need a proper full blown remission in order to allow me to do it. 

I am very aware that the cancers will get me in the end but a remission is what I have spent the last year fighting towards. Without it the past years struggle counts for nothing ....

The top image shows what the view out of the front window of the van has been like for most of the week. It seems as if it has been in permanent rain mode although we have also had hailstones and some snow. 

The next image shows the exterior of our awning which is being turned a filthy green from all the atrocious weather. Come the spring it will need a session with Fenwick's awning cleaner which will clean it up a treat. It also smells nice too.

 After using the Fenwick's it will then need a spray on waterproofing as the awning cleaner takes out the waterproof properties. Obviously I will need a remission to carry out this task. If I don't get it I can see me sitting outside giving cleaning instructions to Anne......

I will be back on the blog again hopefully in about four weeks time. I hope everyone has the best Christmas possible..........

Even more in the locker...

 We now have even more meds in our top locker. The longer the treatment goes on the more meds I am taking ..... 

On Friday's and Saturdays I am taking 26 tablets. We have recently altered some of the tablets by having dispersion meds to try and reduce the number I have to swallow which was becoming a bit of a problem for me. 

The weather last week was terrible with massive winds and trees being blown down in the lane that runs along outside the site.

 We got so worried that the large tree on the other side of the lane would come down across the rear of our van that we moved from our two single beds at the rear of the van and made up the double bed right of the front of the van in the hope that if the tree did come down it would just miss us right at the front. In the end the tree wasn't blown down but like a good boy scout we needed to be prepared.

 We have had snow to add to the winds as well as loads of hailstones.... The weather has not been good but is typical for life on Dartmoor. 

Health wise my mind continues to have a disconnect from my body. It's like having a permanent brain fog. I am unable to think straight and seem unable to remember how to do a lot of simple tasks. It all seems to be down to an imbalance in my bodies chemistry. Levothyroxine levels not right yet plus calcium levels not sorted... I will be glad when it's all worked out. 

I ended up not having my booster last week as the timing was wrong. It will now be the 21stDec before I can have it which will be a full six months since my last jab.... I continue to be fully isolated as I have been for months.......

More pain and empty pitches

 

Another difficult week with a little less fatigue but a lot more pain. The problem with the pain is that it moves around my body and needs morphine to control it. Taking morphine means that I then seem to spend hours and hours sleeping just nodding off at any time. 

One thing that happened during the week that was a plus is the flu jab that I was given. Because of my chemotherapy treatment I can only be given extra jabs between chemo cycles. 

I am currently on my first week off chemo and that's why they were able to give me the flu jab.... During this upcoming week they are hoping to give me my third Covid jab..... Following that I will be starting another cycle of chemotherapy. 

The images above show parts of our site... Top one is the route to the facilities... A bit like walking down a narrow maze with evergreen hedge on the left. The wind won't find you down there.... The other images show a couple of the empty pitches of which we have quite a few at this time of year....

It's a long time to wait......

 

A very similar week to the previous one. Although the fatigue has improved I am still not back to any form of normal. 

Yesterday I had a 1430hrs chemotherapy appointment. When we got there I was told that they were running an hour and a half late. We decided we would go down to the hospital cafe and waste an hour there.

 Two coffees and two cakes and eleven pound sterling lighter we got back up to the outer ward waiting area with about half an hour before the promised delayed time. At 1600hrs I wandered into the inner waiting area and the girl in reception told me to take a seat in a small waiting area just opposite reception.

 And there I waited until 1820hrs. A couple of times I reminded them that I was still there and hadn't been seen but it was a long time to wait. When you are already very fatigued and pretty ill three and three quarter hours is a long time to wait to receive treatment that is going to make you feel even more fatigued and even more ill...... 

All the staff on the ward are working flat out but they are currently operating with at least six members of staff short. Apparently more staff have been recruited but it takes over six months for them to be fully trained..... It looks like there won't be an improvement for sometime to come... 

 The campsite was busy during the first few weeks of October but it has now gone into winter mode with just the odd one or two visitors every now and again. They are usually campervan campers they stay for a couple of nights and then they are off again......

 90+ years old Mike is preparing to head off down to Spain for three months but unlike previous years when he towed his small Hobby caravan down through France this year he is planning on taking the Ferry down to Northern Spain and save time and hassle. .... 

We are expecting Debbie and Mark to arrive back on site from Italy anytime soon. They always overwinter here because where their property is in Italy the winters are worse than here plus they have family in the area here.  

I now have a two week break from the Chemotherapy before it all starts over again....... 

A Week on and a Difference

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A week further on and a major difference. 

Still suffering with some minor fatigue but on a different scale to last week. Still have a bit of a problem with my calcium levels but it is going in the right direction.

 The top image shows the infusion that I had yesterday. It's for a drug called a Bisphosphonate which helps strengthen my bones and reduce the pain. 

The exact one that I am taking is Zoledronic Acid. 

It is given as a drip into my hand shown in the next image. 

The infusion can bring on a mild flu like symptom and a feeling of nausea . Sometimes Bisphosphonate can cause damage to the jaw bone. This is called Osteonecrosis of the jaw. This is why I had to have dental treatment a few months ago so that my jaw was prepared for this possibility. 

Luckily I have avoided this so far.

 The next image is of the Future Inn Hotel on the outskirts of Plymouth. I have to visit there once a week for my weekly blood test. 

The NHS Phlebotomy service is based there currently and is a very quick and efficient service. 

This morning I received the latest report update on my current condition. The MRI scan I had on my thorax has confirmed that the lump on my sternum is consistent with Active Myeloma.

 There are also other Lesions in my Ribs and Vertebrae. 

They say that it is not surprising given that I was off treatment for a period of time whilst I was undergoing the Thyroidectomy. 

It is reassuring to note that this lump has improved since restarting treatment. 

I've still not managed to get out on the bike again this week although it was weather and not cancer holding me back. 

I have now set up the turbo again ready for the winter period so getting out on the new bike is not so crucial as I will have the option of riding the Turbo Tifosi. 

Just to finish off this week.....

 A couple of friends have told me that they are having problems posting comments here on the blog. I have checked it myself and all seems ok and those of you who left a comment this past week obviously didn't have a problem. If you do have difficulties let me know via my Google ID.... 

No cycling or anything else.

 This has been a bad week.

 I have not done any cycling or anything else come to that. I have been so ill that my whole week has been spent in bed. Total fatigue and really ill.

 It has been the worst week I have had since back in last December when it was thought that I wouldn't make it. This past week I didn't think that I was going to make it either.

 The terrible thing is that I wouldn't have cared less. I really felt as if I had lost the will to carry on .......

 Yesterday I was back at the Chemotherapy day ward for another round of toxins. I explained how I had been to the Doctor and we talked everything through and some adjustments were made to my regular daily medication. 

Looking at how fit I was at the top of the Swiss/Italian Alps in the photo at the top of this post I cannot believe that it was me. I would love to feel that fit again but it seems impossible at the moment.....

 Sorry there is not much in this blog post this week but I don't have the energy to write or the clarity of mind due to all the brain fog..... .......