10 Into 2021

It's March already and I have yet to update this year's activities, mainly due to feeling poorly and very little energy thanks to the lack of activity from my Adrenal Gland. I must try harder!

So my ongoing Adrenal issues restart at the beginning of the year. We change steroids again from Fludrocortisone to Hydrocortisone, another steroid that will (hopefully) compensate for the lack of a functioning Adrenal Gland. Not convinced as the evening headaches are still there and not at all pleasant along with a general feeling of just plain rubbish. Energy, enthusiasm, appetite etc just not working as I'd hoped for. I'm slowly getting annoying rashes braking out on my arms, hands and lower back. Not had these since Cycle 1 of Immunotherapy. Really aggravating and can only assume a reaction to Hydrocortisone. We had a Consultant video catch up on 7th January in which I highlighted my steroid issues. For the time being we will increase the dosage to 40mg over the day to see if things improve.

I was informed that I've been referred to Endocrinology for a Short Synacthen test which will determine the Adrenal function or lack of. This is booked for Friday 5th February.

As I am now classed as clinically extremely vulnerable due to pneumonitis, T2 diabetes and Immunotherapy (makes me feel so good!) I have been booked for my first Covid jab, which happens on the same day as the Synacthen test. Busy Friday then and apparently OK to have both on the same day.

With February on the horizon I have been booked for my 3 monthly MRI and CT scans (that came around quickly).

The Synacthen test took just over an hour. It involves taking a blood test then injecting something that stimulates the Adrenal gland, wait half an hour then for a second blood test, the two tests are compared and the difference should be the Adrenal response. It went OK, more needles but I am so used to them now. Covid jab at 14.00 and back home. Felt OK after the Covid jab, and went to bed at around 22.00. Woke at 02.00 and every part of my body ached, everything, even my eyelids. Could not get back to sleep so went downstairs and watched the TV, fortunately the Test Match from India was on so that kept me going for the morning. It was like this all day, didn't feel like eating or moving so pretty much stayed where I was. Off to bed at the usual time, had a good nights sleep and woke on Sunday feeling fine! Panic over!

Next date is the quarterly review in the 25th Feb so MRI, CT scans and blood tests in preparation.

Key points from the review

  • The recent scans have confirmed excellent ongoing disease response and no deterioration in the pneumonitic lung appearances.
  • He was recently reviewed by the endocrine team after his Short Synacthen Test test confirmed primary hypoadrenalism and they suggested that he stays longterm on steroid replacement.
  • While the scans are on face value very reassuring in terms of ongoing disease response, the clinical picture is suggestive of ongoing immune toxicity. In the first instance I have suggested he goes back on prednisolone 30mg for one week followed by a drop to 20 mg to see what effect this has on his symptoms.
  • Should his headaches fail to respond to this then further investigations, including an LP would be appropriate. He is aware of the need to contact us promptly should he develop any new or worsening symptoms and I plan to review him again in 2 weeks to find out how he is getting along.

So, good news bad news. Long term steroids means no getting away from T2 Diabetes which is very very disappointing.

We also discussed issues with my left eye vision, this is the eye that was impacted by the tumour which was removed. I am fully aware that there are remaining issues with scar tissue but my vision seems to be deteriorating and this eye gets very tired and constantly waters. Also I have the ongoing perception issues. I was asked to book an eye test asap to confirm if there are any significant changes.

I booked a test for the following week but was told that my prescription remains unchanged. This is a bit worrying, something is going on with this eye. 

I started the Prednisolone the next day and I feel fine on 30mg although I had a few sleepless, wide awake nights at the start (more reading then) but it settled down after a couple of days. Feel so much better with renewed energy, evening headaches disappeared as well. Went down to 20mg after a week, I felt OK but the headaches were there in the evening, not as bad but borderline.

I tried the alternate day reduction to 15mg Prednisolone, not great to be fair and got woken at 01.00 the following morning with an almighty headache which would not go away. Back to 20 mg then and no really bad heads since but a few borderline ones.

Two meetings on the horizon, 26th March I have my first meeting with the Endocrinology Clinic discussing all things Adrenal, should be interesting hopefully and then my three weekly follow up with the Oncology team on 1st April. I'm staying on 20mg a day till then.

So how do I feel, it is almost four months since the Adrenal issue was discovered? And now only six weeks or so away from my first cancerversary!

As I have said before, I get good days and bad days and there are far more good days and this is pretty much the theme since last May but since November I am more aware because, to be honest, after getting thru the pneumonitis I was beginning to feel OK really. It was only when we dropped the Prednisolone to 15mg that the issue was picked up. What I will say though is that I very rarely get dark days, I've had a few, mainly after the operation when the MRI picked up eleven more mets and after Bristol when the MRI picked up thirty five, that was enough to give anyone a dark day! I am fortunate as I have a wonderful wife who looks after me and great family who keep in touch all the time also a great network of friends who constantly offer support and lots of laughs to keep me going. It will be so good to meet them all whenever this virus ends and I can finally stop shielding.

The funny thing about the cancer journey is you seem to spend the whole time waiting for the next meeting, the next scan, the next set of results. It's all part of the journey and although the scans are scary I always feel that there is hope so I'll keep being positive and keep away from those dark days.

I have been forcing myself to work out first thing in the morning. My strength and stamina have not returned to anything near where they were this time last year but maybe I shouldn't be so hard on myself. I just work on the cross-trainer and rowing machine as both help with upper body strength. I'd love to get running again, we added a treadmill to our gym last year but I keep pulling my achilles when I use it! I'l leave that for a while then. Some days it is a stretch to get going so I made a pact with myself, I go everyday, first thing unless I'm struggling with a bad day which more often than not is preceded by a bad nights sleep involving headaches. It's a good way to remember the count of bad days as well. I bought a Fitbit last year as well so that works as a good reminder to keep moving! Keeps you focused.

I doubt if I will ever return to how I was before but after thirty five brain mets I guess it is not my main target.

So how do I feel? Not too bad at all and I am fully aware that this journey could be a whole lot worse.

End of March meeting with Endocrinology was a telephone call. We discussed my current situation and and my difficulty weaning off steroids. The doctor stated that for my height and build I should only require 7.5mg of prednisolone daily not the 20mg that I am currently on. If I am having issues dropping below 20mg it is not related to the Adrenal issue. I got the feeling as well that the preference would be for me to be on Hydrocortisone not Prednisolone. A report will be sent to my Oncology team and we will discuss on the April 1st consultation.

I was hoping for something more positive than this as it does not solve anything for me and just adds more confusion as to what the issue is. A bit disappointed really.

This was the main discussion on April 1st. My Consultant suggested that I increase my dose to 25mg a day but then reduce by 1mg every four days, hoping that slowly reducing will remove the impacts. Agreed and this is the way forward for now. 

He will book my MRI and CT scans for May and we'll have our one year review on 20th May. I cannot believe that it is a year already, this has gone so quickly.


We had a very busy Easter with a few friends dropping by for garden catch ups and a family BBQ on Easter Monday. As it was Easter and I do like chocolate I kind of eased up on my T2d diet and between carbs and sugar I overdid it. This was fun at the time but by Tuesday I felt awful, sick and headaches. On reflection and in reality I have not taken T2d as seriously as I should and had strayed somewhat recently, it is too tempting not to stray and I miss bread, crusty rolls and chocolate. 

My reality check suggested that I really do need to get my house in order as I did wonder are the headaches etc a symptom of blood sugar issues rather than the adrenal gland and steroids, especially after the comment from Endocrinologist that I should only need 7.5 mg of steroids a day. So the end result is a full no carbs - no sugar diet and very strict about snacking between meals. It's not much fun I guess but far better than feeling crap most of the time. Additionally this will help with my weight reduction as well.

I have to be strict about this as I need to understand what is causing my issues. Got a few books to read on this as well, I need to soak up as as much as possible asap.

I bought this book as my introduction to the inner workings of the body with food and to broaden my knowledge of how I need to behave. Just like my cancer, this is not going anywhere quickly so I have to live with it.

One very interesting quote to share which hits the nail on the head in relation to the impact of carbs on the body

"So for breakfast, you could have a bowl of cornflakes with no added sugar, or a bowl of sugar with no added cornflakes. They would taste different, but below the neck they act more of less the same"

Dr. David Ludwig

When I use our gym in the morning, usually for around 45 minutes, I enjoy a nice large bowl of Granola when I get back in. This book tells me that any gains I may have received by my hard work in the gym have now been cancelled out by my breakfast choice. They taste wonderful but that is a manufactured taste designed to make you like it. In reality it is full of carbs, sugar and 'natural flavourings' whatever they are. Throw in gluten as well and it's not helping me much is it. This is just one example. I could list quite a few more but I wont, you get where I am coming from.

Essentially go for three good carb and sugar free meals a day and no snacking in between. That's my plan for the next two months. My weight has been stable at 14.7 stone for ages now so I'll set my self a target of getting back into the 13 stone bracket (I don't care if it's 13st 13 lbs, just in the 13st bracket again!) by 10th June. This is the day I mentioned at the start of this blog, in prep for my forthcoming brain surgery in June 2020. I weighed in at 16.1 stone, my heaviest weight ever. Thankfully now long gone.




Currently listening to ....

Came across John Moreland at the start of the year and he just keeps getting better. Fantastic Americana singer songwriter guitarist and will be spending many more hours listening to him.

Trying to workout the guitar for 'Hang me in the Tulsa County Stars' that will keep me going for months to come

Focus on the positives
There are too many negatives in life
Negatives drag you under
Positives raise you up