09 To the end of 2020, what a strange year!

I've had over two months off from blogging. I needed a break and I was beginning to repeat myself as it seemed like I was living Groundhog Day. Pretty sure it must make boring reading going thru the same thing everyday especially the Immunotherapy stages so I'll summarise what's being going on since.

In October we managed to get away for five days to Swanage, the Isle of Purbeck is one of my favourite places. It gave us a good chance to catch up with our friends Sue and Roger and get in a bit of quality walking. Purbeck has loads of great walks and I need to stretch myself a bit more. I'm still very light headed and the dizzy spells are there all the time. My lack of stamina still annoys me, this is a good challenge then.

On Tuesday we did Ulwell to Corfe Castle along Ninebarrow and Ailwood Downs, 5.28 miles, a great walk apart from the brutal uphill at the start from Uwell (well it never used to be brutal!). Thursday we had a trek from Studland to Agglestone Rock then Old Harry Rocks and back to Studland for lunch. 5.48 miles.

Both walks were a stretch and took much longer than it would have taken 12 months ago. The days were sunny with occasional showers and as this is the first time I have been walking since my diagnosis I am very aware I need to cover up, no more T-shirts and shorts and importantly, a hat required at all times.

We had a lovely few days but unfortunately I started feeling unwell on Thursday evening which was worse by Friday AM so we decided to leave early. We missed out on Lunch with Sue and Roger at the Purbeck Golf Club, we'll be back so here's to next time!

It seems that Medication is my main issue. As I keep telling people, I rarely talk about cancer, it's all about the meds and side effects.
I continued to reduce my steroids again (Prednisolone) all goes OK until I hit 10mg a day. I start getting shortness of breath again and headaches most days so struggling again. I call in with the Acute Oncology Team in Southampton for a check up. Nothing major to report but the feeling is that as I had been reducing the steroids by 10mg a week this may be too much as we get down to the lower doses. They ask me to go back to 20mg a day then reduce by 5mg a week and monitor. Disappointed as I was a week away from being rid of them!

November is a key month I have my three monthly MRI and CT scans with the follow up Consultants review.

26th November 3 monthly review key points

  • He has now had restaging investigations that have revealed an excellent disease response with a shrinkage in size of the adrenal deposit as well as multiple small intracerebral deposits and no new sites of disease. Importantly The generalised groundglass changes within the lungs noted on the previous study showed generalised improvement consistent with resolving pneumonitis.

  • Clearly this were very good news; the priority now was to safely wean him off steroids, and I suggested that we do this very cautiously to avoid an immune toxicity flare , initially by 5mg per week down to 10mg prednisolone daily and then cut down by 5mg on alternate days.

  • 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 our clinic in 3 weeks' time to assess whether it is safe to continue the steroid wean or whether he would need a Synacthen test first to assess his adrenal axis.

So good news with the obvious exception of the Adrenal Gland, Melanoma moving around my body makes me nervous but the Immunotherapy is doing its job very well so I'll relax.

I did mention that I'm still getting the dizzy/ wobbly spells coupled with my left side perception issue (walking into things on my left side). The reality is that after an operation to remove a 3cm tumour and the immunotherapy working on shrinking the other thirty five there is a lot of scar tissue in my brain so my issues are probably something I'll be living with forever. Still, could be a whole lot worse so onward and upward.

I had a follow up Consultants meeting scheduled three weeks later on 17th December, the final one of a very strange year for me.
Again, I am down to 10mg of steroids a day and getting the same issues as before, breathing and headaches and just feeling crap. So this was my main point to discuss.
There is a concern that the damage to the Adrenal gland may be impacting the bodies production of hormones and natural steroids in particular so when I reduce my intake of steroids there is a deficiency as my body is not producing enough to cover, hence the issues. So back up to 20mg a day again, will I ever get away from them?
They have also prescribed Fludrocortisone (another Steroid) which helps the Adrenal Gland recover. Also prescribed Calcium  to help with bone weakness due to long time steroid use. I'm still on Co-Trimoxazole anti biotic for the pneumonitis recovery. I have a catch up call on 23rd December with one of the Consultants to discuss how I am feeling and how we proceed moving into 2021.

One more point to mention, as I am now classed as Type 2 Diabetic (T2D) i have been drafted into a weekly diabetes webinar run by a member of the local health team. There is around eight other T2 diabetes patients on the call. We discuss and are advised on diet, exercise, Sleep, inflammation and lifestyle.

Key point is carb reduction in your diet so no bread, potatoes or any cakes etc. and obviously no sugar. Now this is an interesting challenge with Christmas coming up!

It is worth pursuing as I have my weight down to 93kg from 102kg prior to the op in June so need to keep going as this will help. My target is 88kg but let's get through Christmas first.

I have one more call with the Consultant on Wednesday 30th December to discuss how I am reacting to the Fludrocortisone and (yet again) discuss my reduction route to zero steroids so hoping for some degree of success. 

To tell the truth the week of Fludrocortisone made little difference so another plan is required. We have a further consultation on 7th Jan so will follow up then. 

My Reflections on 2020

We had discussed my retirement at the start of the year as I was 64 in November, I've been working full time since 1973 and could do with getting away from it all.

As part of the slow down we have two of my bucket list cruises planned for this year. One in March from Chile up the west coast of South America, through the Panama Canal, across the Caribbean and finally to Miami. Another in November from Cyprus, through the Suez Canal with a trip to Petra then around the Arabian Peninsula and finishing in Dubai. Can't wait....

In February it very quickly became apparent that the March cruise would not be going ahead. Covid was slowly taking over everything. We kept hoping but it was obvious as we got closer to March that it was not happening. In our disappointment we needed to get away for a week so booked a week in a caravan at Durdle Door from 20 March. The weather for March was amazing, we got to the campsite mid afternoon, settled in and went for a walk down to the beach, it was baking hot with a good forecast for the week. Got back around six so headed for the site restaurant for fish n chips and a few beers only to find that BJ had closed all the pubs and restaurants for the start of Covid restrictions. Not going as planned then. We had to go food shopping on Saturday, that is not a holiday chore is it! We got some coastal walks in, it is a stunning coast line in Dorset. On Monday we went to Kimmeridge Bay which was closed so we went to Corfe Castle which was also closed funnily enough. We were wandering around the town when the campsite phones to tell me they were closing on Tuesday as the country was going into lockdown and we need to be packed up and off by 10.00 in the morning.

When we got home Annette found out that she was furloughed as part of the lockdown so we decided we would use the time to (slowly) decorate the kitchen. Working off a step ladder, up and down and just on the go all day I noticed that I was getting dizzy all the time then I started getting awful migraines at night, waking me up and not getting back to sleep as they were so bad. I was still working three days a week from home and was beginning to really struggle. After a week or so the migraines stopped but then I started crashing into things on my left. I ignored it but Annette didn't thankfully and eventually made me an appointment with the surgery. You know the rest...

In fairness I made it to 63 to get my first serious illness and I came to terms with it quickly. The year had been a massive learning curve for me which I have almost enjoyed as it has been particularly interesting, all these new things to learn and understand. I don't do doctors or hospitals so I didn't really get any of it at the start. I remember Consultants breaking the bad news to me on May 15th and I asked 'what is a Lesion' and they would not explain. I thought I knew what it was but not sure. So I've come a long way since then.

So how do I feel at the end of the year? Well I guess I could feel a whole lot worse than I do. I'll admit that the reliance on steroids and consequently Metformin for the T2 Diabetes they cause wears me down. I really do want to get off both asap in the New Year but will need a solution to the Adrenal gland issue first. Now this does wear me down almost daily, I run out of energy by the evening and the headaches take over, these vary in strength and duration but I don't do headaches very well. I have to retire around 10pm but then usually wake around 2am so getting through loads of reading. I do get back to sleep eventually but it's most rare to sleep through the night. In fairness I have never been a great sleeper anyway.

I've lost a bit of weight but my stamina and upper body strength have both disappeared. I run out of energy so quickly now and I do fear that this may be permanent, hopefully not.

My continuing left side perception issue continues and looks like this will be permanent. So, will I be able to drive again or even will I have the confidence to drive again? Hobbies like golf for instance may prove difficult and I'm not even sure I currently have the stamina for a four mile walk combined with whacking golf balls around. Maybe I'll try the driving range when lockdown finishes just to see if it still works. I rely on my left side peripheral vision when playing instruments and I keep making mistakes, usually about two frets out. It can be a struggle on guitar but almost impossible on mandolin as the frets are so close together. I've not played any mandolin for a few months now as it got so frustrating which is a shame as it's such a fun instrument to play. I did decide to put more effort into harmonica as I do not need my eyes for that so going through a learning process which is fun so that's enough to get on with for a while. 


I have been looked after by my best friend and now, my full time carer, my wife Annette. We've been together a very long time and I am amazed that she has put up with me this long (thankfully). She is now my full time chauffeur as well as I can no longer drive. She'll drive me to hospital for appointments and has to wait in the car as visitors are not allowed inside, no matter how long it takes she is always there for me. Sorts out all my meds into a container for each day and times to take them! She does everything, I would be lost without her so will count myself extremely lucky. I have been fortunate as well as Annette was furloughed from the first lockdown in March and we have had a great time together since. We have both spent all of our adult lives working so we have enjoyed the break, it gives you time to breathe again and just relax for a change. No stress, early starts or late nights working. We had around seven weeks prior to my diagnosis from the end of March to mid May (although I was still working 3 days a week then) when we'd go out for long walks in the evening, the weather was fantastic and all seemed perfect before my issues took over. You really do never know what is around the corner.

So where does all this leave me at the end of 2020? When you reflect on the plans you make on New Years Eve for the forthcoming year I guess this year did not go as planned and I never saw any of it coming my way.

The news in May of two brain tumours of which one requires an operation to remove is scary, finding out in July that I now have thirty five of them was a hammer blow and it does make you wonder how long you have left, it was terrifying to say the least.

When you consider the amount of people who lost their lives through Covid I have to say that I feel very very lucky, it is the biggest challenge I have ever had to face but I'm still here to fight on.

We had a nice year in lockdown together with the added bonus of becoming grandparents for the first time in October so no complaints from me.

One added bonus this year was that I got to actually listen to music again. Properly listen, as in taking the time to sit down/ lie down put on a CD and thoroughly listen, not music on the go through headphones whilst doing something else. It was almost negligent that I had completely forgotten how to listen to music as it is such an important part of my life. After the operation in June it took me a month or so to really recover, stamina and energy were just missing so I had plenty of days with bundles of CDs to get through. I had so much fun! Do yourselves a favour, throw away the headphones and MP3s and get back to listening again, you wont regret it. I'll sign off for 2020 with my five favourite albums of the year, in no particular order. Goats Head Soup is a remastered reissue so counts as a 2020 release.

Onward and upward into 2021 :-)

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