11 Keto and heading on to my 1st Cancerversary
This year is flying by, it's half way through April already and rapidly heading towards my 1st Cancerversary. I cannot believe that it's been a year of living with this disease. I'm getting very reflective as we're heading into May and rather glad I've made it this far as the past twelve months have given me some very frightening moments.
Its taken me a while but I have finally come to terms with my T2 Diabetes diagnosis, I don't like it but I've gotten over it finally so I'll embrace it. I've got it so what do I need to do about it?
In the spirit that everyday is a schoolday and I have spent the last year learning so I now look forward to a new subject to research and the challenges I'll set myself for dealing with it.
I felt really ill and groggy after Easter, all self inflicted of course so started looking into the T2D subject. As if I need to frighten myself even more, things can get very nasty if you don't take it seriously and manage it through diet and lifestyle.
I have been messing around the edges of the carb free diet since the T2D Zoom calls that started in November last year. I guess I wanted to manufacture a diet that would work for me but including bread and chocolate 🤪 Now that was never going to work was it, I was just hoping to get away with it! Worth a try I suppose.....
To kick off I bought four recommended books to get me going at entry level, more for my expanding collection. I started with Ahmed Afifi and moved on to Tom Watson, both are very much real life experiences of two sufferers Ahmed is T1 and Tom is T2. I easily related to the Tom Watson story as, like many other sufferers, myself included, denial after diagnosis and getting over it is the first step. I never realised just how life changing T2D is. But there again so is stage 4 cancer, pneumonitis and a dodgy adrenal gland. I'll just add it to the list then.
On Friday 9th May, still suffering the effects of my Easter indulgence I started the Keto low carb/ high fat diet, it was a rotten week of feeling crap and I couldn't face another weekend of messing around with trying to fit my preferences into my diet
The first step on this journey involved a full clear out of the pantry, remove all temptation! There's a packet of chocolate hobnobs screaming at me every time I open the pantry door, they're first to go. We looked at carb/ sugar content of fairly innocent products like 'healthy soup', healthy? no chance, packed with carbs, sugar and bulked out with potatoes, honestly, everything we checked was like this. finished with two large bags for the local foodbank and our youngest daughter got the Hobnobs and all biscuits and chocolate, she was more than happy to accept the gift.
The Tom Watson book Downsizing includes a chapter about 'Tackling Big Sugar', it is a massive eye opener especially the way sweetened food products are aimed at children. I'm not going to preach on this and will leave it up to you if you want to delve into this further, I will say though, it is worth exploring. There are currently around 3.5 million T2D patients in the UK with another estimated million over the threshold but as yet undiagnosed. This is getting rapidly worse year to year. This has phenomenal impacts on NHS resources and budgets. Apparently this currently costs the NHS around 10 billion pounds a year!
I read today that you cannot reverse T2D so the best I can hope for is remission that will allow me to carry on without medication but need to control my diet and keep fit. No problem, I can do that!
The book is thoroughly inspiring, I am in awe of what he has achieved. A 22 stone middle aged man with a shocking diet and lifestyle, barely able to walk any distance at all, now down to 14 stone with regained fitness and new lust for life, well done mate! It can be done.
Podcasts are a great way of digesting information so I've been listening to '2 Keto Dudes' whilst in the gym every morning. Bundles of information put across in a fun way. Worth a listen
I did state previously that one objective of getting my T2D under control is to understand if my constant headaches are a result of the steroids due to the Adrenal gland or my poor management of my diabetes. One thing going on at the moment is some sort of head fog from the long term use of all these meds, I'm having severe difficulty focusing and I tend to 'zone out' all the time, just drift off into my own little world. This is only in the last month or so but not how I want to live my life. I'll work on this diet and see where it leads me.
We are managing my Prednisolone down by 1 mg every four days so currently down to 17 mg a day. No evening headaches so far, we'll see.
We're now into May and I'm getting ready for a busy month of scans, tests, conf calls and a F2F at the hospital with my Consultant for my one year update, must be the usual scanxiety then, always a worry. Also throw in two dental appointments as well, my calendar is full for the first time in over a year!
I'm not feeling too bad apart from the usual fatigue. I'm down to 13 mg a day Prednisolone now and it's going OK. I have a conf call with Endocrinology next week so will discuss progress with them and options for the best way forward, is this Hydrocortisone as suggested on the last call? Possibly may improve my sleeping, so worth exploring.
I saw this on line recently and it reminded me (in case I needed reminding) that I am never going back to work and all that stress again, my head could not take it, honestly. It is definitely the way forward. Work is overrated!
I cannot imagine fighting cancer and trying to work effectively, I'm lucky as that must be so difficult and I admire anyone who does it.
Spent last week away for a break in Swanage again, it is one of my favourite places (I know I've said that before). Had a few great walks and met up with our friends Sue and Roger a few times for beers, food and laughs. Thoroughly enjoyed myself but it became apparent that my walking stamina had deteriorated somewhat since our visit here in October last year. Annette tells me not to be so hard on myself which is probably a fair comment but it is disappointing. However, as I have said many times before, this journey could be a whole lot worse so I'll put up with it.
The gym works fine for a bit of good cardio everyday but I need to get back to stretching myself on walks. We live in a great area for walks so no excuse.
We found a lovely peaceful walk yesterday following a local stream along the Hythe Woodland Trail which takes you down to Southampton water. It is about 200 yards from our front door and we have lived here for nine years now and only discovered this yesterday, we must try harder!
We had a wonderful 3.5 mile walk and took our time, no need to rush on a walk like this. Full of birdsong and wild areas, believe it or not the route is surrounded by roads and houses on both sides, not that you'd notice. Perfect and more exploring to follow. One of the joys of both Hampshire and Dorset is that they have managed to retain many of their green areas and long may it remain so.
My Keto diet is going remarkably well and I'm surprising myself. So almost four weeks into it now and I have lost all sugar cravings and behaving myself. Even last week away where restaurant menus are extremely limited for carb free Keto dieting travellers I managed to find something to eat. Even burgers are fine but obviously without the roll and chips! You really do not need them anyway. Annette is helping by going carb and sugar free as well so removing any temptation.
One key point on the diet is that your hunger reduces unlike other diets. This helps additionally especially with things like late night snacking.
My Keto Dude friends also tell me that fasting is a great way to progress. I tried this today as any hunger pains have disappeared. Last meal was yesterday evening at 19:00 so today I missed breakfast altogether thru to lunch at 13:00. Just had a bowl of Greek Yogurt, berries, flax and pumpkin seeds. Worked fine so must do it more but doubtful if I do this every day, I'll aim for a couple of days a week.
This is my 'How it started, how's it going' Moment. The scar is obviously healed now although I do have an indentation down the back of my head where part of my skull was removed.
The funny thing though is that my hair over the scar has grown back grey. When I do eventually get it cut it will be a nice grey stripe! Yes, I know it needs cutting!
The picture kind of tells the story of my year as the first two were at rather scary, uncertain moments on my journey. Not much fun was being had at either point.
By the last two things had calmed down somewhat thankfully. Which sums up my year perfectly
The first six months were manic with things changing almost daily and quite hard to keep up with.
The second half has been a slow drag of nothing much going on apart from various steroids being reduced and failing, T2D and a poorly functioning Adrenal gland. Looking back the first half was far more interesting really but the end result to this point is immensely satisfying as I'm still here!
I'll settle for that and more of the same.
Aside from my Cancerversary May has turned out to be a manic month. I'm almost not used to going out much but this month I have a calendar full of appointments and things to do for the first time in a year!
8th May: CT Chest/ Abdo/Pelvis Scan
11th May: Endocrinology - Steroid awareness
11th May: 2 of 3 dentist app
15th May: Cancerversary and Chelsea V Leicester FA Cup Final
16th May: Head MRI scan
17th May: Blood Test
19th May: 3 of 3 Dentist app
20th May: F2F at hospital 1 year review with Consultant
29th May Chelsea V Man City Champions League Final
I will be worn out by the end of May especially if Chelsea win both finals!
I had my CT scan this morning and the guy doing the scan said 'Hi my name's Jude' and without thinking I said 'Hey Jude'. He just smiled at me, I knew what he was thinking... Yeah, I know I'm not the first idiot to say that am I?
In my defence I'll state that I was very tired for various reasons however the day got worse.
As usual I received the contrast during the scan. I completely forgot to drink loads of water for the rest of the day to flush it out of my system and in the evening I started to feel very ill, which may be a result of this or not, no idea. Took some tabs and went to bed but woke in the middle of the night feeling even worse with a banging headache as well. Got up and had a cup of tea and some more tabs but ended up going back to bed for most of the morning, got up for lunch feeling even worse so went back upstairs for another snooze. Got up again around 16:00 still feeling rubbish then realised that I'd neglected to take my morning meds so now I'm taking Prednisolone in the middle of the afternoon, never a good idea if you want to sleep that night. But I did, all through the night and woke at 06:45 Monday morning. Still barely functioning and almost sleepwalking, I just feel so tired but at least I feel better today. I wont do that again in a hurry.
Moving on to much brighter things.
Early last year we found out that we were to become Grandparents for the first time around the end of September/ early October. So when I was first diagnosed with my 'Lesions' and I spent a lonely sleepless night in hospital, one of my main thoughts was that I have to make it to October, I have to make it....I had no idea what the future held in store for me or what the task of 'making it' really entailed.
The thought of not making it frightened me more than what I had to achieve to get there, I didn't really care about that. So it became my key driver for my journey and subsequently kept me going through the dark moments from May to September of which there were many especially after Bristol.
And I made it, by October things had calmed down considerably so on October 5th my new best friend Niamh Elsie came into the world to brighten up all our lives and made all the pain, trauma, and uncertainty evaporate. It was all worth it in the end. I was unable to meet her for a while as I was isolating due mainly to the after effects of pneumonitis but we've had great fun catching up since then to make up for it
Throughout my first year I have made many new friends all on their own paths with this journey, all at various stages. Unfortunately due to Covid all have been on line through support groups, social media or Zoom which is a shame as it would be so good to meet people in person, I guess that will have to wait.
I met Melanie, a fellow traveller on Instagram, Melanie has been travelling this road far longer than I have and it appears that we both share a love of the sun. One of Melanie's poems touched a nerve with me. The message is hope, positivity and humour, I have tried to live by this all year but as I had stated previously, some days are harder than others. More good days than bad days though so all is good!
I liked the poem so much that I asked Melanie if she'd mind if I shared it and she has very kindly agreed.
Melanie, thank you!
Focus on the positives
There are too many negatives in life
Negatives drag you under
Positives raise you up
Currently in my office updating my Blog (again! I said I'd finished it yesterday but had forgotten to update what I'm listening to!
So it's Tuesday and I'm listening to the 1st Clash album. This is in my top ten greatest albums of all time, certainly one of the finest debut albums and one of the best killer opening tracks ever! Janie Jones, The drum intro and the dirty guitar breaking in, perfection. Got the album on a loop so on the third time round now.
Couldn't do that with vinyl...
I bought the CD again last year (I have it on vinyl, most tracks on compilations and an old CD copy in those awful plastic 'Jewel' Cases). So a re issued, re-mastered, card digisleeve copy and it's awesome. Compilations are rubbish, you need to listen to the complete album, 35 minutes and 20 seconds of pure awesomeness! It's like the summer of 1977 all over again :-)
This is one for an empty house with maximum volume and, guess what? The house is empty apart from me today.
If the neighbours call to complain I wont hear the doorbell, Oh well.......
A quick summary of my year then....
I started off with two brain tumours, one large one small. Brain surgery required for the larger of the two which went very well. Biopsy confirmed tumours were secondary stage 4 Melanoma. Follow up MRI located eleven further brain tumours (metastases). Referred for Gamma Knife and Immunotherapy. MRI prior to Gamma Knife located a total of thirty five brain metastases so treatment was cancelled.
Long term steroid use caused type 2 Diabetes. Three sessions of ipi/ nivo Immunotherapy caused Pneumonitis so further treatment cancelled. Back on high dose of steroids, when weaning off steroids it was discovered I have a fried Adrenal gland. Confirmed now as Addisons disease meaning I will remain on steroids for life.
Oh, and the fatigue of course, monster fatigue!
Every day when I wake up and get out of bed I look in the mirror wave and smile at myself and think
I'm still here then, It's great to be alive!
