16:  Year 3 H1

It's May again and I move into my third year fighting cancer. I have lost count of the amount of scans, hospital appointments, needles in my arm,  the amount of different meds I have taken and the sheer number of tabs I have swallowed.

I recently read a post with a comment that you are not 'Fighting' cancer as cancer will do what it wants to you. I'd have to disagree to a point as it would be easy to just give up and pull the duvet over your head. I've had days where it has taken all my energy just to get out of bed and believe me, it's a fight. I have way too much to look forward to so I ain't giving up just yet. No one said it would be easy.

I'm changing my blog to half years rather than quarterly as my cancer journey seems to have plateaued somewhat and in a way I struggle to update, my journey now is about how many meds I take and how fatigued or sick I feel. The fatigue and nausea I can manage but headaches and migraines wear me down. Nothing new there and no highlights. Good days bad days, the same as everyone else.

May is also scanxiety month or at least it should be. I have yet to get the dates for my scans and the Oncology review is on the 19th. 

On a far more positive note, Bournemouth won on Tuesday evening so are promoted back to the Premier League after two seasons out.

I'm slowly increasing my Amitriptyline dose so in May 3rd we upped it to 30mg in the evening. The immediate impact is I sleep for around 9 hours a night and it takes me ages to get going on the morning. I didn't go to the gym on Tuesday or Wednesday and today I managed only 20 minutes on the cross trainer. I'm intrigued to discover how long this lasts. I need a bit more action first thing and I wont be going higher than 30mg for a while yet.

At this time I seem to be getting more bad days than usual, twice a week was the norm but lately it is every second day. Strangely on the good days I seem to have way too much energy so maybe I over-do it on the good days, don't know but I'll have to take it easier for a while. It may be the Amitriptyline increase which is is always strange for a few days. Last night I went to be at 23.20, straight to sleep, awful dream which woke me up just after midnight. Then I was awake till around 03.00. Could not get back so read just like I used to do!

BTW, Amitriptyline gives you weird dreams, really vivid and not very pleasant dreams. Most nights to be fair though I sleep for eight to nine hours.

Just finished another Peter James book, 15th in the series all since I started on 15th May 2020. How different the world was for me back then. And Covid has still not gone away! I've started reading the Lee Childs Reacher books now, they're very good for nights that you cannot sleep but maybe that's where I'm getting the weird dreams from.

My average nights sleep over the last week is just under nine hours, I also had a two hour snooze Wednesday PM as I could not keep my eyes open. It's about the only thing I can do very well now!

I had been eagerly awaiting my scan dates as I have the Oncology Q review on the 19th of May. The head MRI came through as the 24th?? That's not going to work so I called them and the review is now on 9th June. Just had confirmation of the CT Scan, Saturday 14th at 15.15. Not an ideal time as the F.A. Cup Final is on at 16.45 heres hoping I don't get delayed. Additionally the European rugby semi finals are on and Leinster playing at 15.00 so that wont work but fortunately Saracens are on later at 20.00. A sporting Saturday with a CT scan crammed in the middle. 

So, CT scan no worries, very quick and back home in time for the FA Cup Final. Cracking game right up till Chelsea lost on penalties (again). Saracens were unable to redeem the day later so disappointment all round unfortunately. Had a nice day though and a very nice Chinese in the evening, no too bad a day. Well all was going well until I woke at around 00.30 next with a banging head which just got worse and worse through the night, full on migraine which my meds did not touch. I started vomiting around 06.30, not as bad as the February one still, unpleasant and not my ideal Sunday. Always the worry that I need to take my steroids so there is a potential emergency. I finally started recovering around 16.30 so took my steroids and panic over till the next time.

I had a few reactions now to the Contrast injected during the CT scan and this is the second time I've suffered a migraine post scan. Chinese food is maybe not the best idea either as MSG can set me off as well. Must have been the excitement of all the sport as well. Too much for one day. I'm still on 30mg of Amitriptyline and will increase to 40mg next week. Not seen any change with the migraines whilst taking them although the frequency has dropped. We'll see.

By the way, that was also my second cancerversary on Sunday 15th May. I did say earlier that I really didn't feel in a celebratory mood as I approached two years but it would have been nice to enjoy the day feeling much more positive. I should celebrate as I have got through two very difficult years with bundles of support so what's not to like about that. As I said last year and I need to remember....I'M STILL HERE.

In 2020 I was not convinced I'd last this long πŸ˜€πŸ‘

Milestones induce reflection, you cannot help it and part of the reason I do this blog is to remember what I was going through and feeling at the time. Sometimes I go back to read earlier pages and think oh my God did I really put that in here? The point is that's where my head was at the time, so...so what? A friend said to me that 'I really left it all out there'. That in fact is what I wanted to do. Possibly you may read this and think it's rubbish but it's where I was at the time and how I felt. I guess you need to be there yeah.

Anyway, in my time reflecting I recalled the story of the mighty Wilco Johnson, one of the finest living Englishmen and a guitar hero of mine way back in the 70s. I remember seeing him playing with Doctor Feelgood around 75 or 76 and as a guitar worshipping teenager I was mesmerised by his guitar technique, bloody impossible but majestic.

He was diagnosed in 2013 with terminal pancreatic cancer and given ten months to live. Instead of facing his last months going through the pain of Chemotherapy he decided to get his band back on the road for a farewell tour and go out in style. What a man!

Rather than me telling the story follow a link to the Guardian newspaper interview with him in 2015. There's also a YouTube link to a TV appearance from 1975, dear me that looks so dated! Enjoy the manic guitar playing. There's also a cracking film on YouTube all about Wilco. That's three links for you to be getting on with, far more interesting than me 😊

I guess part of my reflection week should include where I now find myself after two years. Of course I can feel proud of this achievement but where am I after all that cancer can throw at me. I started thinking about this whilst I struggled through my time in our little gym this morning.

My fitness and stamina has been slowly and incrementally deteriorating over the time. After the operation  to remove the larger brain tumour I was advised not to put any strain on my body and certainly no strenuous exercise so I had very little in the way of gym sessions for a few months. Then I was hit with Pneumonitis which had a massive impact on my breathing and with the help of QiGong and gentle exercise I improved but not as quickly as I wanted. My balance or lack of it has had a major impact on how I approach fitness. All the gym items we have don't require any balance even the Treadmill has side arms which I use. Mainly I use the cross trainer and rowing machine so I can sit down or hold on. It works for me.

After Pneumonitis I did have a good period of recovery however, interrupted every now and again by calf muscles or either Achilles popping which drove me mad but I got through it. The hold ups frustrate me. I constantly have visions and targets of where I want to be but some ailment always bites back to slow me down. Last year I decided to do the Macmillan Mighty Hike which was frankly ridiculous from my point of view as my walking is severely impacted by my balance, fitness and further dragged down by Addisons as my energy levels are non existent. Fatigue sets in very quickly. I use walking poles all the time for anything other than a short walk, as I tire my stamina disappears. But I did it with the help of steroids of course. Just as well I wasn't drug tested! 

My gym fitness was actually progressing well until last November when I started taking the enco/ bini cancer drug therapy which knocked my energy levels sideways. They also impacted my appetite to the point where even the smell of food being cooked made me feel ill causing a lack of fuel input which didn't help much.

Then Amitriptyline was added to the mix and all I want to do is sleep or just laze around. Up till this point I had been getting up around 07.00 and going down to our gym for around 45 minutes or so. Now my challenge is waking up and when I do just getting out of bed takes ages some days. This morning I forced myself to go to the gym and managed 30 minutes on the easiest setting on the cross trainer which, at various points, I nearly gave up on. I really did struggle, But I did it and the felt knackered for the rest of the day.

In summary, I am a stubborn bugger so will persist and hope this improves, I have no desire to become a TV watching couch potato all day, I'll keep moving even if I need more steroids to do it πŸ˜€ πŸ’ŠπŸ’‰ I forgot to mention T2d as well, more impacts!

The last two weeks have been a struggle with more bad days than good. I keep getting severe fatigue, short, shallow breathing and increased heartbeat and fear that a hospital visit may be imminent. My mate and band member Graham came to see me in the afternoon for a bit if a jam and working on some songs, had a good two hour session which literally wiped me out for the rest of the day. I couldn't even manage too join the Melanomamates Zoom call later in the evening. I slept for almost ten hours last night yet still wiped out today. Something is amiss.


I'll include these two images below as everyone I meet tells me that I look fine. I'm sure some people barely believe that I am even ill. Now I just state that maybe it's the 23 tablets I take each day, they're bound to help eh.

It reminded me as we met our near neighbours recently and they kept telling me they were amazed that I look so well, in fact I looked so much better than I did last year. I must really have looked awful then 😱

We upped the Amitriptyline to 40mg a day on 23rd May and had a lovely, undisturbed sleep of just under nine hours, forced myself out of bed and did 45 minutes in the gym. Feeling OK today but I've been in my shaky dizzy world for the best part of the last week and I cannot say that I am overdoing it.

The band I play in, Devils Courthouse have a gig lined up at the end of the month. Our first gig since November 2019, ages ago. So we've been rehearsing whenever possible, seems a bit strange after two and a half years away from it. We hired a local hall yesterday just to set up all our equipment and get used to singing into microphones again. Totally different sound from playing in my conservatory! I recorded it but haven't had the time to  play it back yet. We have two more rehearsals then the real thing. I'm not getting stressed as I now treat everything I do as the last time I'll do it. I've done so many things that turned out to be the last time I did it but never realised it at the time. So my feeling now is that this is the last gig I'll ever do and I will enjoy every single minute of it. We only do this for fun after all. If we do another one then that will be the last! And so on ?οΏ‚οΎ What I have noticed over the last month or so at rehearsals is that I get very very weary after a while, I started taking extra steroids to get through it and will take 5mg extra before the gig. Yesterday we ran through the set twice in three hours but I was 100% wiped out by it when I got home. Wasted!

What I may or may not get stressed about is my MRI head scan later. Someone said recently that there is no point in getting stressed over scans, well maybe they didn't have a head full of Metastases. There must be a reason for the dizziness I have been suffering lately and remembering that this is where I started over two years ago.

Today I found out that the reason I have bad impacts with the contrast at CT scans but no noticeable impact from the contrast at MRI scans is that at the CT you get 100mg of contrast but only 10mg at MRIs. Everyday's a schoolday!  


I have missed out a few weeks, my energy levels are poor and I seem to be spending most of my time sleeping. Not very productive is it really.

So looking back over the month so far. The gig was wonderful, it was so good to be playing live to a great audience. The team at the wheel had set up a large marquee for the bands to play, just in case of bad weather. no need as it was a lovely day and the garden was full for out set and we went down well. Looking forward to the next one.

Click on the band picture for a link to Copperhead Road


Funny but I posted the image on my left a few months back before Amitriptyline seemed to take over my life. Fast forward to where I am now and so far this week my average sleep is 9 hours 8 minutes, this also includes Saturday night when we were away for the night in our Campervan when I slept for 10 hours  18 minutes. Previously I used to manage 5 hours max in the van!

I have not updated this for ages now which I guess is a good thing as it means not much going on health wise. Fatigue wise I am getting worse but I will put this down to the very hot UK weather recently and everyone seems to be tired. I'm sleeping OK though but even nine hours sleep is not making much difference. I'm still getting late in the day headaches which is more often than not accompanied by nausea, at the last review my Oncologist prescribed Metoclopramide 10 mg tabs for nausea. Whilst I've not had a full on migraine with vomiting to test them out so far they work a treat on the nausea to prevent it getting worse. Sometimes I do wonder what all the different meds do but this one does exactly what is supposed to do. Perfect.

Strange that everyone is behaving as if we have gone back to normal but Covid apparently is on the increase again

We been to two festivals which for me is a big step as the energy levels are very poor and I need to manage how I behave in the very hot weather at both of them. This usually means overdressing and/ or Factor 50, with a big hat!

The New Forest Folk Festival in July was baking and I could not sit out in the afternoon sessions, it was just too hot so I had to hid back at the camper van. The Black Deer Festival in June was OK heat wise but unfortunately a big thunder storm hit on Saturday night so they had to shutdown power to all stages. Right in the middle of the Waterboys set, still we throughly enjoyed the weekend and at around 120 miles from home, the longest drive Annette has done in the campervan.

I nearly forgot to take my 15th June photo so the Grateful Dead T shirt got it's yearly outing. I think I do look a bit better than last year and I have lost another three pounds over the year, not that it shows. Looking Skinny though and the majority of my clothes hang off me but slowly adding new ones that fit! I better gets some carbs in my diet as there will be not much left soon if this carries on.

Updates are few and far between this year and, as I have stated before not much is happening and I'd prefer not to keep repeating myself. Amitriptyline has gone up to 50mg so my sleeping is amazing, I am reading nowhere near the amount of books I was getting through when I was awake for half the night. Migraines I still get but the frequency at this time is reducing but when I do get one it is not very pleasant. The sickness comes with the migraine along with vomiting but the anti sickness tabs help reduce the the sickness and I seem to recover quicker. I had a brutal one in September which lasted for two days so maybe these will stay with me for the rest of my life. I should be used to them now really. What has improved though is the evening headaches that I was experiencing three or four days a week so there are steps in the right direction.


My quarterly reviews with the Oncology team have slipped back a month due to a late MRI in May. So it's September rather than August now. Well it has all slipped back another month now as the MRIs are working 24/7 trying to catch up post Covid so they could not fit me in before the scheduled review date. Not a problem for me as I haven't any urgent problems that need dealing with (and long may that remain).

The band had another gig lined up for the August bank holiday Sunday which we were all looking forward to. We penned in an extra rehearsal on the Saturday before the gig. We all carry out Covid tests prior to meeting up and believe it or not I tested positive! Tested again and yep, still positive. So I had to miss the gig the following day. We'd been to Purbeck Valley Folk Festival the week before so I'll hazard a guess that I caught it there. It is funny as we'd cancelled going to the festival last year as we were concerned with catching Covid! Strangely though I felt no different, it seemed to have no impact to me but kept isolated as I did not want others to catch it. It lasted for a week then back to normal, I tested negative for the following weekend. I've had four jabs so these must have helped.

One annoyance though is that I had my CT scan booked for Tuesday 30th August but had to cancel because I was testing Positive. Rescheduled for Monday 12th Sept along with my blood test and the review on 15th Sept. The CT results were not back in time for the review so that was cancelled as well. I finally got my MRI on Sunday 25th Sept so all set now for my Review on 6th October. 

The results for all scans were just about the same as the last few, so everything is going fine. MRI shows no further brain mets, always my biggest worry. CT results are stable, mets still there but not growing, enco/ bini doing their best to ensure no growth. Brilliant.

Nothing to report then. It's funny doing a cancer blog when there is nothing to report which has been the picture pretty mush for most of this year. Anyway, as they say.....be careful what you wish forπŸ˜€ πŸ‘ I guess that's it for year 3 H1. Onward and upward to November , which incidentally is a landmark month for me.

Life is not about waiting for the storms to pass

It is about learning to dance in the rain