Recovery

18-Green shoots…

30 June 2020

Just finished the first two weeks post-treatment. What a trip! No surprises though, others had told me these could be the worst and they were pretty much spot-on.

The first week post treatment was awful – the neck burns had worsened and involved a trip to the local A&E along with almost daily attention by nurses.

My neck is unfortunately a difficult area to dress burns. Even though I’ve lost over 20kg, I still have more chins than a Hong Kong phone directory, so this did at first challenge the nurses. It took an unexpected trip back to see the radiologists at Cheltenham, where they had the perfect answer.

The pink coloured dressing is called Polymem and is a very sophisticated product. Read more about it here

The worst parts of the burns were additionally treated with Intrasite Gel and morphine mixture. This gave additional topical pain relief, exactly where required.

Within 10 days, the results have been amazing and to all intents and purposes completely healed. There is long-term damage to the skin though. I must moisturise this area twice a day – forever. Also, sunblock factor 50 must be applied whenever exposed to sun. Again forever.

I won’t dwell on the remainder of that week, suffice to say I never want a repeat. Finally, this last week of June has seen the first green shoots of recovery.

My voice is coming back bit by bit, although still squeaky. The coughing and thick mucus is still there 24/7. I’ve been tentatively trying to eat, although the burns in my mouth make for a quite unpleasant experience. And that is still really painful, even considering the morphine dose I’m on.

First thing I tried was some Manuka Honey from New Zealand (thanks Gill). Difficult for me, although Samros and Nisa love it.

A soft-boiled egg did go down, but that was a lot of effort. So I’ve decided to wait a week or so, before attempting solids again. I’m in no rush. I have my liquid nutrition feeds 4 or 5 times a day, giving 1200-1500 calories total.

So, all in all a very slight improvement day by day, but I’m pleased with that and hopefully the worst is over.

It won’t just be over for me though.

I receive so many best wishes and notes of bravery – and they’re all sincerely appreciated. But as is said – behind every man is a great woman and there’s no truer case than mine.

Samros has been an absolute pillar of strength. And I don’t say that lightly.

This is a woman that is not only grieving the loss of her mother in mid-April and of course, because of covid-19 not able to travel to Cambodia for her funeral, but also coming to terms with a husband stricken with stage 3 cancer.

I guess I’m fortunate that because of the lockdowns and shutdowns, Samros is on furlough and therefore she’s been taking care of me continuously, day and night. I can see the pain in her face as she sees the pain in mine.

I’m now in my 3rd week of sleeping sat upright on the sofa. It helps alleviate coughing due to the mucus. So Samros now sleeps on the lounge floor alongside me. If I wake with say, coughing - she’s immediately awake too. Ready to get me a sip of water, add some more medicines through my PEG or just to comfort me.

I try not to show the pain and we laugh off as much as we can. This humour has been one of our great strengths in the 7 years we’ve known each other. So the little in-jokes, the smiles, glances, touches and a lot of ‘ I love you’s ‘ are for sure been the best medicine I could have.

My next scheduled meeting with doctors is on 7th July. This is the first of monthly check-ups that I understand will be for the next 5 years. I won’t have any definitive answer about the tumour or prognosis for a few months, while we wait for all the radiology to settle down.

So in line with these meetings – and unless there’s anything significant to write about in-between (eating a decent plate of anything comes to mind), I’ll update the blog monthly after the doctor meetings.

In the meantime, if I could just convince Samros to buy a nurses uniform, that would be the ultimate aid to recovery 😉

19-On the right track

13th July 2020

Sorry to be mixing metaphors – from boxing ring to motor racing (or horse racing?), but I’m really pleased to feel I’m on the right track to recovery.

I had the first of my monthly meetings – post treatment, with the ENT team. We discussed how I’m feeling – and they definitely caught me on the best day so far.

My voice is getting stronger and is good for 15 mins or so of conversation, before it weakens. I guess many people would prefer that to be permanent 😉

Still only managing a tiny amount of solids and liquids by mouth, but the team are pleased I’m trying different textures of foods, to see if any work.

My taste buds are effective perhaps 5%, in that I can barely taste anything – but the they seem to work well for things I should enjoy, but now taste awful. Goodies such as marmalade, chocolate and trifles unfortunately fall in this category.

So I’m still with Ms Peggy the PEG for my feeds and medications. I still need the morphine for the left side of my mouth, which continues to be extremely painful.

The thick mucus is subsiding – and that’s a real blessing. In some respects, it’s the worst of all the side effects from the radiology treatment.

The physical examination was good – I had the scope thingy put up my nose again. Not painful at all, but it does make me want to sneeze! Anyway, the doc said things look very good and there didn’t appear to be any sign of Larry the Lump.

We’ll know better about that in September, when I’ll have a full scan.

But for now – I feel I’m definitely on the right track to a knock out.

Also…

I’ve just started preparing some fundraising for Macmillan Cancer Support

This is going to be by way of their annual ‘Worlds Biggest Coffee Morning’ to be held on 25th September 2020. Here’s a promo video of how anyone can host a local event.

Of course – Wozzer has to be different. So I’m hosting a ‘virtual’ coffee morning, with friends, family and of course my wonderful blog subscribers around the world.

I’m planning to combine Zoom Video Meeting and share a meetings link, so that we can see and speak. Timezones won’t be an issue – I’ll do my best to meet you for a coffee, wherever you are in the world.

I’ll update my blog with more details and times as we get closer to the day, but for now there’s some information with an RSVP link here

20-Off the wrong track…

It’s been a funny old month really. I had a 2nd checkup last week, a bit cursory really – just a feel around by neck and chin(s). No lumps that shouldn’t be there, but really I’m waiting for September’s scan, so that I’ll have a proper answer on my status.

This scan will be head to foot (more or less) and the objectives are twofold: first to check on Larry the lump in my throat and second – more importantly, to see if there’s any spread,

So that’s just a waiting game.

I still have to smile at the irony of my medics insistence that I don’t lose any weight – and we almost got into an argument at last weeks checkup, because they say I’m losing too much weight – too fast. I must admit, they may have a point.

It’s a bit of a difficult one – I’m pushing myself to eat and am certainly doing better than a few weeks ago, but the actuality is I can’t eat much of anything. Mostly because I still have very little sense of taste. But also, because of almost mon-existent saliva production, it’s difficult to eat without drinking some water with every mouthful of food, else it won’t go down. So I don’t have much appetite for anything and waste a fair bit of food, because I rarely finish anything.

I did decide to cut down on my reliance of Peggy the feeding tube. And now I can see that set me back – a combination of low-calorie intake, some dehydration and cutting down on morphine, left me feeling pretty poorly for a few days.

Hey ho! Back to doing what I should and amazingly, I feel better. Until the next time.

Also in this last month was my 65th birthday. That should have been ‘retirement’ day and I’d have been a pensioner. What an awful thought 😉

Yeah, for Wozzer this was a milestone to become more active. Or should that be simply, active? Anyway – what better than a cycle ride in the nearby Forest of Dean. There are a number of trails and bike hire there – downhill mountain biking looked a bit iffy for me, so we settled on the 10 miles Family Trail.

I mean, how hard can that be?

Actually, I hadn’t been on a cycle since 2009 when I was volunteering in Siem Reap, Cambodia. I used to cycle around 3 km each way to the project.

West Baray, Siem Reap - Dec 2009

It was murder every day – not only all the locals (especially the kids), ranging from staring agog to outright pissing themselves with laughter at the sight of Wozzer perched on a rickety bike. But also the 30-35 deg C heat and humidity had me puffing and dripping with sweat. And that was just getting on the bloody thing!

It took a little while of leaving it unlocked at night, but finally thankfully – someone stole it. And I swore then it would be my last time on a bike.

Shame my memory failed me when I most needed it…

 

Back to present days… We started off well – for the first 50 yards anyway. Then it was a rocky downhill section. Better that I got off and pushed.

On to a long steady upward incline (on an old railway route), which was nice – but interspersed with me not having much stamina, meant a few brief stops  - we got some great-looking family shots here.

But – what goes up must come down. I mean – you have to try picture this…

All 115kg of Wozzer , hurtling downhill on a well-oiled mountain bike. We were in a line – Nisa up front, me in the middle and Samros at the rear.

Then we weren’t in a line.

I hit a rocky section on a bend, pulled the brakes too hard and ended up tumbling off the track and rolling about 20 feet down a ditch. Oh boy, that hurt a bit – I did bang myself up on a few rocks and even worse, slid through what must have been the local nettle farm.

Nisa stopped cycling when she heard Samsos’ scream. She turned round and noticing one missing and asked ‘where’s dad’?’

She got her answer when looking down in the same direction as her mum. And there I was, lying face down, bike on top of me and trying to say “ I’m okay, just trying a short cut”.

The real pity was they were both too shocked to get a photo of me, in that prone position.

So that kind of cut short my birthday trip – but in fairness, it was a memorable day!

Also, I’ve done a bit more planning for the ‘World’s Biggest Coffee Morning’ in aid of Macmillan Cancer Support, on 25th September 2020. I’m hoping to chit chat with friends, colleagues and family around the world – so I’ll be hosting the video ‘meetings’ for 12 hours (7am to 7pm UK time).

This should allow coffee mornings in the US, coffee afternoons in the UK and Europe and Beer O’Clock for those in the Far East and down under. Hopefully you’ll all fine some time to get online with me – even if only for a few minutes. Donate the cost of a coffee or two and we’ll be eternally grateful. It all counts and all donations are going to a great cause.

I’m using Zoom Video Meetings. It will work on all devices (Windows, Apple, Android etc), it's FREE to use and can be downloaded in advance by clicking here

If you don’t install in advance, no worries – when you click the invite link that I’ll send next month – it will download and install on whichever device you use. Just say yes to the permissions it requests (use audio, video etc) and you’ll be good to go in just a few minutes.

Until then, stay safe and well 😊

Oh, and please feel free to share this post with anyone you might think would like to join-in. Also my Macmillan page is here

21-Cold Turkey and a CAT

All in all, I'm happy to report a pretty good month of improvement. All the pain has gone. Well, my pain that is. I'm still a pain to my lovely suffering wife, who has to contend with my regular moans and groans! Eating has become easier in terms of swallowing, but unfortunately my sense of taste is still minimal, which makes for a less than enjoyable eating experience. A minor issue in the big scheme of things, but a bugger to someone like me who really enjoys his food.

Of course, this has also had some 'upside' in that I've now lost aorund 33kg / 5 stones / 73lb since January of this year. I'm well happy with this - but my NHS dietician not so.

Dropped 3 dress sizes too, from 5xl to xxl. Actually, the photo from this Tuesday shows an xxl shirt - and even that's becoming a bit baggy too 🙂

Cold Turkey

As I mentioned, all the pain has gone now - so I was preparing to ease off the morphine. I must admit, I haven't really needed it for a month or so, but have been quite hooked - being on a pretty high dose since mid-May. Can't say it was bothering me, but better off without it I reckon.

Oh - easier said than done! I mentioned it at last months hospital meeting and they seemed pretty cool about it. 'Just ease off the dose over a while' they said. But perhaps their idea of a 'while' was a few weeks, whereas Wozzers idea was 3 days..

Oh boy oh boy, I really went cold turkey last week. I was a real mess, with the typical junkie runny nose, aching joints and mad dreams. I put up with it for a few days and was tempted to start on the morphine again. I spoke with my GP after 4 days and she said I should be over it in a couple more days - and she was quite correct. By the weekend, I was back to my normal (mad) self, instead of a drug-induced mad self.

But the upside is I'm now drug-free again. Currently no medicines of any kind and hoping to stay that way.

PET/CT Scan

Yesterday I had my first scan post treatment. As they promised for September. It was a CT scan with 'contrast'

It was a full-body scan, one to check on the treatment so far and two, to check if there's any further spread of cancer. This is pretty much the main concern of every cancer patient post-initial treatment.

The procedure itself is painless. It starts with an IV/drip of saline with a mild radioactive drug, which shows areas of the body where cells are more active than normal, indicating the possibility of cancer. This is the 'contrast' bit.

CT (CAT) Scan

A CT scan is a test that uses x-rays and a computer to create detailed pictures of the inside of the body. It takes pictures from different angles. The computer puts them together to make a 3 dimensional (3D) image.

My medical team will have the scans this week  and will discuss during the next week. I'll have the results good or bad, within a couple of weeks from now. Hopefully in time for our coffee morning zoom video meetings on the 25th September. Which brings me nicely on to updating you with the details...

I'm pretty much ready for the ‘World’s Biggest Coffee Morning’ in aid of Macmillan Cancer Support, on 25th September 2020. I’m hoping to chit chat with friends, colleagues and family around the world – so I’ll be hosting the video ‘meetings’ for 12 hours (7am to 7pm UK time). Please, please join at any time that suits you.

This should allow coffee mornings in the US, coffee afternoons in the UK and Europe and Beer O’Clock for those in the Far East and down under. Hopefully you’ll all fine some time to get online with me – even if only for a few minutes. Donate the cost of a coffee or two and we’ll be eternally grateful. It all counts and all donations are going to a great cause.

 

WIN THIS UNQUE COFFEE MUG

With a thank you note and spersonally signed by Wozzer!

This Macmillan Coffee Morning mug will be posted to the winner anywhere in the world - subject of course to delivery being available. I might even put a stamp on!

All zoom visitors get one entry, and the winner will be picked by an online random generator thingy.

I’m using Zoom Video Meetings for the all-day fundraiser.

It will work on all devices (Windows, Apple, Android etc), it's FREE to use and can be downloaded in advance by clicking here

If you don't download in advance, clicking this MEETING link, should start the download automatically:
https://us04web.zoom.us/j/73794084522?pwd=TER5amVWN3FVbUdJbVZRNVhyaHBJZz09

Just say yes to the permissions it requests (use audio, video etc) and you’ll be good to go in just a few minutes. If it asks for meeting ID or Passcode they are shown here:
Meeting ID: 737 9408 4522
Passcode: 8cmAGM

Also my Macmillan donations page can be viewed by clicking this text

or this link: https://www.justgiving.com/fundraising/warren-garber

If you have any problems on the day, please SMS or WhatsApp to me on +44 770 82 92 274

Finally (for now), please feel free to share this post with anyone you might think would like to join-in.

Hopefully see you some time on the 25th xx

22-Macmillan Coffee Morning (and Beer)

Let me start with an apology!

24 September 2020

When I started planning for the Macmillan Worlds Biggest Coffee Morning, they also set up a donations page which I could use to raise funds for the charity. Alas, for such a large and well-known charity - it appears their fundraising platorm isn't as good as it could be.

It appears it was very difficult for donors (friends / relatives) to leave their name and any note for me. Also, they could only accept payment by a card registered in the UK. Of course, that's not so easy for many of my friends / family around the world.

So it's impossible for me to personally thank anyone that has donated. And for that I sincerely apologise.

The image below shows kind donations from the last week or so. Please feel free to comment if you donated - or send me a private message on facebook or email to wozzer (at) warrengarber (dot) com

Recently received...

Justgiving for Macmillan

I have a new fundraiser page on Justgiving (the funds also go direct to Macmillan) and there are links below -or just click the image. It's ever so easy and you can leave your name and/or a message.

If you haven't already, donating even the cost of a coffee (or two), makes a difference!

So, with this post I'm ready for the ‘World’s Biggest Coffee Morning’ in aid of Macmillan Cancer Support tomorrow.

I’m hoping to chit chat with friends, colleagues and family around the world – so I’ll be hosting the video ‘meetings’ for 12 hours (7am to 7pm UK time). Please, please join at any time that suits you.

This should allow coffee mornings in the US, coffee afternoons in the UK and Europe and Beer O’Clock for those in the Far East and down under. Hopefully you’ll all fine some time to get online with me – even if only for a few minutes.

Take care and chat soon 🙂

Wozzer

 

WIN THIS UNQUE COFFEE MUG

With a thank you note and spersonally signed by Wozzer!

This Macmillan Coffee Morning mug will be posted to the winner anywhere in the world - subject of course to delivery being available. I might even put a stamp on!

All zoom visitors get one entry, and the winner will be picked by an online random generator thingy.

I’m using Zoom Video Meetings for the all-day fundraiser.

It will work on all devices (Windows, Apple, Android etc), it's FREE to use and can be downloaded in advance by clicking here

If you don't download in advance, clicking this MEETING link, should start the download automatically:
https://us04web.zoom.us/j/73794084522?pwd=TER5amVWN3FVbUdJbVZRNVhyaHBJZz09

Just say yes to the permissions it requests (use audio, video etc) and you’ll be good to go in just a few minutes. If it asks for meeting ID or Passcode they are shown here:
Meeting ID: 737 9408 4522
Passcode: 8cmAGM

Also my Macmillan donations page can be viewed by clicking this text

or this link: https://www.justgiving.com/fundraising/warren-garber

If you have any problems on the day, please SMS or WhatsApp to me on +44 770 82 92 274

Finally (for now), please feel free to share this post with anyone you might think would like to join-in.

Hopefully see you some time on the 25th xx

23-What a day!

My Macmillan Coffee Morning 25th September 2020

It was astonishing, astounding, surprising, breathtaking (literally), awesome, phenomenal, extraordinary, incredible, unbelievable, wonderful, marvellous...

Yep - it was a pretty good day!!

My thanks to everyone that joined-in on Zoom video throughout the almost 13 hours that I was online. And to all of you that kindly donated... Well, you contributed towards a total donation of 1300 GBP / 1675 USD.

To put this in perspective, this would pay for a Macmillan Support Worker, helping people with cancer for almost 2 weeks. I've been a direct beneficiary of this support, so I'm humbled at the response from you all.

On the day, I started at 7am here in the UK and soon enough has some past work colleagues (also great friends) now living in New Zealand. Soon enough Australian friends were on line - followed by Asia, Europe and finally the USA. There were 28 people (well more including couples) from 10 countries. Some I hadn't seen since perhaps 2010, when in Cambodia. Some were more recent friends, including some of my Macmillan team - thanks Sarah and Olly for dropping by!

It was truly heart-warming to not only catch up again, but to know everyone took the time and trouble to join me and reminisce.

I must make a special mention to Dally in the Philippines, who had the unknowing misfortune to buy a ticket on the Mekong Express overland coach from Saigon to Siem Reap. A journey that takes around 14 hours. That in itself is bad enough, but finding that Wozzer was in the next seat for the whole trip...

And so the day went on and I loved it all. I really can’t thank everyone enough.

Draw for the Macmillan Coffee Mug

I screen recorded the draw, using a list of unique participants (as reported by Zoom), each with a number and an online random number generator. You can see how I did it (for transparency and fairness) in this short video.

I wish you could have all won – all are equally deserving. But one winner only for the jackpot, which goes to Phil Butterworth, now living in the USA. As it happens, Phil was (is) a great mate from our Cambodia days. He’s a helicopter pilot, used to do sightseeing flights and also some pretty cool commercial stuff too. I distinctly remember him flying with university professors to discover (and map) a completely hidden ancient city.

There’s an excellent article and video here: https://www.bbc.co.uk/news/magazine-29245289

I had many nights out with Phil, including one outstanding Haloween / fancy dress pub-crawl around the Old Market (Psar Chaa) area in 2010.

We knocked ideas around on one of our many man-dates, over beers and a curry. He thought I’d make a pretty good Shrek and I thought he’d make a very good policeman – and so it came to pass…

Man oh man, what a night. I had literally hundreds of tourists wanting to pose with me – mostly Korean as I remember. This allowed me to get into full character – complete with a dodgy Mike Myers Scots accent… “What’s up with you? Have ye never seen an fookin ogre on a Saturday nite in Siem Reap’??

They had no idea what I was on about 🙂

Phil also really went to the limit. Well, past it really. He obtained a full, real police uniform and stuffed all the pockets with banknotes - imitating in real-life the local corruption that goes on.

It was a real hoot - until the real police carted him off. I was terrified that they'd lock him up and forget about him (as they were prone to do in those days). As it was they relieved him of his uniform - and all his money, and he was back with us within an hour or so. Scary though !!

Back to reality...

Next week (6th October), I have my appointment to discuss the results of the PET/CT scan that was done a couple of weeks ago. Watch out for my next blog update a few days after.

Until then - take care.

Woz x