24-One down…

Looking back through this blog, I’ve started a few by saying ‘it’s been a funny old …’

This month, I should start by writing ‘it hasn’t been funny at all…’

Well, at least even I’m struggling to find anything funny about the latest news following last month's scan. To cut a short story even shorter, I’m not out of the woods yet.

And unlikely to be.

This upshot is that so far the treatment for my throat cancer has worked well - and in fairness, physically I’m doing quite good right now. Even my sense of taste is improving marginally. And my swallowing of food is also going the right way - so to speak.

So it was pretty devastating to learn some more cancer terms, which I was aware of - but hoped wouldn’t apply to me. Because I now have secondary (or metastatic) cancer.

The scan shows two tumours developing on my right lung and one on my sternum (breastbone). Secondary cancers are named from the primary site (in my case throat) and in my case are officially metastatic throat cancer of the lung and breastbone.

It’s early days yet in terms of any proper prognosis but generally, secondaries are not normally curable. They’re treated as they develop, with chemotherapy or radiotherapy (or both), or not at all, depending on how things go.

Dr Warren Grant was of course open to all the questions I could think of and I know there’s no bullshit in his answers. So I know right now no treatment is planned - at least if nothing changes, until my next PET/CT scan in January 2021. I don’t have any pain and the tumors are not particularly large (approximately 7mm to 13mm).

So the judgement is to monitor me over the next few months and then make a further decision in January.

I was shown the last scan and talked through it. I have to say, it was pretty amazing to see a 3D computer image of my insides, traveling virtually from my feet up, as though I was laying down on my back. A number of my organs were seen (thank goodness) and the tumors are also highlighted by the ‘contrast fluid’ that I described previously. The PET bit of the scan.

I should also say that this isn’t an exact science like say, mathematics. The doctors have to make the best interpretation and judgements of the computer images that they see. But the tumors are there and even if small with no pain, it’s a huge disappointment mentally right now.

If there is some upside - and I have been digging deep to find any, at least I have some more material for my blog going forward 😉

On a lighter note...

I received a number of emails about my anecdotal story of the Haloween fancy dress sketch in 2010 and it’s given me the idea to recount some further notable (or forgettable) episodes that only Wozzer could get up to mischief in.

So here’s a quick story about Wozzer on the frontline, doing his best to destroy a temporary ceasefire between warring Cambodian and Thai troops, back in September 2010.

For a bit of background, there’s a piece of land on the Thai / Cambodia border, near the magnificent Khmer temple of Preah Vihear in northern Cambodia. The two countries have been arguing about the land nearby for a hundred years or so. Fighting flared up in 2008 and lasted on and off around three and a half years.
There's more detail here: https://en.wikipedia.org/wiki/Cambodian%E2%80%93Thai_border_dispute

 

Preah Vihear Temple, on the Cambodia / Thai border. Perched on top of a cliff, over 500m up in the Dangrek Mountains

It wouldn’t have been a big issue in world affairs, except that the fighting coincided with Wozzers arrival in Cambodia. My having diplomacy skills lower than say Idi Amin didn’t help matters when I went up to the battle zone during a lull in the fighting.

Actually that’s not totally accurate. I was quite happy being 100 miles or so from the fighting.

But when the author of ‘Rough Guides for Cambodia’ made contact with the tour company I was working for, and requested logistics to visit so she could research first-hand how safe (or not) for the latest revision of the book, it did seem an opportunity not to be missed by yours truly.

So off we set with Beverly, Luna, Ta (our chief guide) and myself as driver for the day in the company Landcriuser.

 I remember the vehicle well, it was a beast of a car - ex United Nations from the UNTAC days when the UN were peacekeeping in Cambodia.

We took some essential supplies with us for the troops. Ta knew what they’d  appreciate and so, we loaded up with cases of beer - always good for fighting on.

Well it was a helluva day up there - an amazing temple and super friendly troops. Well, certainly more friendly when we cracked open the beers.

I so much wanted to fire one RPG (Rocket-propelled Grenade) across to the Thai side, just to see what would happen.

Alas, the peacekeepers wouldn't let me - no sense of adventure!

What I didn't know - and couldn't believe, was that many of the troops had their families with them on the front line - wives and kids. The army didn't get fed much by the government.

It was heartbreaking to see kids running around and playing amongst the stockpiles of munitions. This is one of the most emotive pictures I've ever taken.

A fitting way to end this little story.

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

 

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

21-Cold Turkey and a CAT

All in all, I'm happy to report a pretty good month of improvement. Some 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 subsided now - so I was preparing to ease off the morphine. I've have been quite hooked - being on a pretty high dose since mid-May.

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.

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

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

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

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 😉

17-Ring that bell Woz

12 June 2020

Into the final week of treatment and I certainly know I’ve been in a fight. All of the previous 5 weeks malaise continues, with the added complications of neck burns and sickness (vomiting).

I’ve been using E45 moisturiser since week one, twice a day – all around my neck and under chin. It hasn’t been a problem until late in week 5, but now the whole area is quite tender and sore.

The feeling of sickness and vomiting is again, an expected side-effect of radiotherapy. There is medication for it, but it’s another drug that I have to be careful of, because of my kidneys. So I’m limited to one a day. And that isn’t enough to stop the queasy feeling in the mornings.

So my mornings upon waking are now a decision to hold off on my PEG tube feed until after sickness, or go straight into my feed and meds:

  • a) before feeding leaves me retching with nothing to bring up (not even bile) or
  • b) after feeding and just brings all back up – so go through the whole rigmarole again.

I just deal with it – I find option (a) – the morning retch is good exercise as well. Good enough for Woz, anyway.

And so the final week goes on, counting down the days until 12th June – final treatment. No matter how much pain and discomfort I have and have been through, this is a day that I’ve been counting to, since the start of treatment on 4th May.

And it’s a happy day. I’ve brought in some tins of biscuits for the reception and radiology teams. They have been ever so helpful over these six weeks of my life and never failed in either their friendliness, helpfulness or professionalism. I feel like I’m saying goodbye to some good friends.

But I don’t want to see them again – professionally that is. There are too many to list all, but Will, Abby, Liam, Eloise and Anthony are just some of the amazing radiology team I’m saying thanks to.

As an added ‘bonus’ Samros and Nisa were allowed into the unit for my final day, so they could see the setup of me on Ms Cherry, collect Manny the Mask and then finally – to Ring The Bell – announcing that radiology treatment is over !!!

So that’s the six weeks of treatment over. But it doesn't stop there.

Some people say this week and the subsequent two weeks post treatment are the hardest, because at maximum dose. I’m prepared for this – at least there is light at the end of the tunnel

All of the radioactive energy that has been administered over the weeks, is now continuing to work inside of me. Much like a microwave keeps 'cooking' food for a while.

So for now, I’ll just pierce myself in a few places, cook according to instructions and stand for a few minutes, before serving the next post 😉

16-Mine’s a pint please

5th June 2020

Week 5 / round 5

When your week starts with a blood transfusion, you know things can only get better.

Or can they?

Blood monitoring is an important element of my treatment and its drawn and tested every week. It seems the last one has given some concern regarding haemoglobin levels. This is something to do with red blood cells and the efficiency of moving oxygen around the body. My haemoglobin was low, so it was decided a top-up was necessary. At least that’s how I understood it.

So – another first in my life, sitting in a comfortable chair looking up at a plastic bag of blood that’s been donated by others and ready to be infused into Wozzer.

I will admit to wondering where the blood came from and if it’s okay. But as with everything, I have faith in the system – so signed the consent form for the transfusion to begin.

Again, nothing is left to chance. Two nurses come to check me – DOB, full name and address. Then they cross check what I said with my wrist band, then with the doctors instructions and also with the labels on the blood vial.

Then they did it all again – just to be double sure I presume. They don’t mention all the previous cock-ups with transfusions, and I don’t ask.

Anyway, 2 bags (units) of blood – which is a bit over a pint - and six hours later, I was fully refreshed with as many thingys of haemoglobin and red blood cells as I needed.

All of this reminded me of an old TV programme: Hancock, starring Tony Hancock. He was a deadpan actor and comedian. Many said his character was based on himself.

One stand-out sketch was The Blood Donor and I’ve found a link to it. First shown on BBC on 23rd June 1961 making it almost 60 years old. It’s still a classic.

They said I’d feel better after the transfusion and not so tired as well. Oh really? Week 5 turned out to be the hardest so far. Yep – others have written blogs and laid it out. But that still didn’t really prepare me for what was to come.

Nothing new – just even more intensity of all the previous side effects, now coalescing into one feeling of total malaise. It’s getting beyond the physical sense, by this I mean I can deal with the pain in my mouth, the severe pain of swallowing even a sip of water, the constipation, the horrible thick mucus, the milk-shake meals 4 times a day and everything else.

But now it’s also becoming a mental issue. I just want it to stop – or at least give me a break for an hour now and then.

Nope – it’s with me during all my waking hours and most of my sleeping hours too. I can be up minimum 4 and max 7 times a night, either through seriously dry mouth or most likely the mucus settling on my lungs and needing to be coughed up.

By the end of the week, I’ve taken to sleeping sitting upright in a chair in the lounge. Laying down doesn’t seem to be an option any more.

Dig deep Woz – Larry the Lump won this round. Pretty sure I’m still ahead on points overall, but no way is it the walk-over I thought it would be.

I’ll be in a better frame of mind for the final week of Radiotherapy coming up next. But for now just saying thanks to everyone commenting, sending me messages and for putting up with my whinging this week.

Love to you all x

 

Week 5 round-up:

Weight: 123.0 kg

Appetite: 0%

Meds:

Fluoride toothpaste 5000 PPM

Mouthwash – Caphosol

Pain: Paracetamol and Oramorph

Local anaesthetic: Gelclair oral rinse

Laxative:Laxido

15-Keep your distance

29 May 2020
Week 4 / round 4

Looking like Wozzer is slightly ahead on points after a month and here’s an update on how the fight is going…

I’m sure everyone will be pleased to hear that the er, bodily function saga is behind me, so to speak. No problems there. And I have a good supply of pencils – and lolly sticks, in case the need arises again.

The eating problems haven’t gone away though. The condition causing this has a name – Mucositis. For head and neck cancers that are undergoing treatment, either chemo or radiotherapy will damage healthy cells in the mucus membrane. This is the soft tissue that lines the inside of your mouth and oh boy, does it hurt. This is what the morphine is really helping with 😊

I’m solely on the nutrition liquids now – everything is fed to me via Ms Peggy the PEG and my weight is (unfortunately) holding steady. I say that because my team want me to keep my weight up and as they sign-off all the prescription drugs I need, it’s best I don’t upset them too much.

On top of this, my in-built saliva factory has started a new production line of extra-thick, gooey gunk. The closet I can think of is heavy-duty wallpaper paste and I can produce this by the bucketful (well, cupful), pretty much on demand.

Unfortunately, it’s when I don’t demand it and it comes up and then slithers down my chin, like some kind of old geezer - losing bodily function control, that I’m in danger of becoming.

And if that’s not enough, then the burning from radiation is now becoming apparent. My neck is turning a nice shade of reddy-brown and hair has been burned away from one smallish section of my head – at the back and above the neck (see photo).

I don’t mind that, it’s no worse than some ‘home haircuts’ I’ve seen during the lockdown! Seems 50/50 on whether it’ll grow back. I don’t mind that either – a small price to pay in the big scheme of things.

This does come with a bit of a burning smell – seems to linger on and around me all the time now. I don’t mind this either. But along with the gunk dribble, the weird haircut, croaky voice zonked out morphine look – I’ve no worries about social distancing. Seems everyone is giving me a wide berth these days!

I can’t quantify this, but having a poke around under my chin I don’t think Larry the Lump is anything like the size he was originally. So I do think confidently that while I’m getting a bit of a battering – the Lump is getting more.

Just have to keep focussed for the next few weeks 😊

Week 4 round-up:

Weight: 124.3kg

Appetite: 10%

Meds:

Fluoride toothpaste 5000 PPM

Mouthwash – Caphosol

Pain: Paracetamol and Oramorph

Local anaesthetic: Gelclair oral rinse

Laxative:Laxido