About Me

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Now retired but busy still living..

Saturday, 4 December 2021

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.......

Saturday, 20 November 2021

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....

Saturday, 13 November 2021

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....... 

Saturday, 6 November 2021

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.... 

Saturday, 30 October 2021

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..... ....... 

Saturday, 23 October 2021

A bit of an obsession...


 I thought that I would tell you about a bit of an obsession that I have. I have always been really interested in cycling culture and have had a bit of a thing for the history of cycling jerseys.
 Not only is it a bit of a thing but I have always felt the need to add to my  collection even though you can only wear one jersey at a time.
 Now I know that you can get a lot of cheap copy jerseys from China but they tend to be just that...cheap. 

Back in 2009 I became impressed by what was then a new company called 'Shutt Velo Rapide'... (SVR). I bought a couple of items of cycle clothing that were in vintage styles and I loved not just the look but also the quality of their clothing products.... Since then I have been a regular customer adding to my collection on numerous occasions.

They are described as a boutique cycle clothing company and as such are probably similar to Rapha in as much as they have their own distinctive signature strip and produce quality items although they do tend to be a little cheaper.... 

When we sold up in Bournemouth and started touring I did prune my collection of jerseys as there was obviously a limit to the number that I could cart around in a small Eriba caravan but since lockdown and cancer I have started to add to my collection again.

 Recently SVR have introduced a limited edition range of Countries and Counties jerseys and I was rather taken with the Devon county Jersey which is based on the Devon County Flag..... Cornwall (Kernow) is another of this collection which I like although I did resist the temptation to purchase that as well. I figured that if I  was going to be riding the killer hills in Devon I might as well show that I am based down here in my adopted county and not a tourist :)  
With the white cross on the front and also the rear it does make the jersey pretty visible to other road users.
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I would like to point out that other than as a regular customer I have no connection with SVR and am just sharing my experience of this company with other cyclists.....Shutt jerseys are made in Italy and the latest range is manufactured from Repetita 100 per cent post -consumer recycled yarns. Google Shuttvr.com or Shutt Velo Rapide and check them out....

As for my health this past week it's been a bit up and down. I had a growth in my throat. and my throat started closing up and I was finding it really difficult to swallow. I saw the ENT consultant who checked my throat and says that all is well and the growth seems to have now disappeared. He made an adjustment to my Thyroxine dose so hopefully that will sort out my fatigue.

 The staff levels at the Chemotherapy day ward have been halved and yesterday I had to wait two and three-quarter hours to be seen. The staff were working flat out but due to staff shortages due to illness and staff leaving they are desperately trying to treat everyone. I had taken pain killers before I went but due to the huge delay to be seen they ran out before I was seen. I was in agony and they had to give me more paracetamol to help with the pain ....


Saturday, 16 October 2021

I need batteries....




 I thought that I would add some more images from Anne's colourful flower display at the head of this weeks blog post as my lack of energy and total fatigue continued this week.

 I really do need some batteries as if I sit down for any length of time I just fall asleep. When I wake up again I find that I am confused and my mind and body don't appear to be working together. 

On Monday I decided that I would go for a ride and as with the week before it was obvious early on in the ride that I was going to have to limit the distance due to the fatigue that I was having to deal with. 

There were road works at the top of the lane blocking the road entirely and not even a bike could get past. A diversion had been put in place making all traffic travel an extra three miles along single track lanes instead of the couple of hundred yards from the top of our lane to the campsite. The route was so narrow with traffic trying to travel in both directions that it was impossible for caravans and motorhomes to get to the site as the diversion was in place for four days it had a real impact on the caravan site. 

When I set out on my ride I did find a very narrow rough gravel track that avoided the diversion and gave it a try however it was so rough and I was riding with Continental Grand Prix 5000 tyres that were really unsuitable for that kind of surface that I felt that if I came back the same way I would almost certainly end up with a puncture so I decided that on my return I would follow the diversion. 

Well it was bad enough on a bike but I really would not have wanted to drive the route. First it was downhill all the way to the village of Buckland along single track lanes that even on a bike meeting something coming the other way was pretty terrifying then there was more level single track lanes as far as Buckland Abbey and to finish off there was a mile and a half of uphill all the way up to the Campsite... .

I did it but it was three miles instead of a few hundred yards but at least I saved my expensive road tyres from a puncture.....

 I had two sets of blood tests during the week as it seems that my fatigue is being caused by me no longer having a thyroid and the doctors not being able to find the correct balance of thyroxine to maintain my energy levels.... This coming Monday I will be seeing the Consultant so will find out those blood test results so hopefully the situation will be sorted soon.....

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 Saturda...