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 šŸ™‚

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 weekĀ  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 ā€˜Worldā€™s Biggest Coffee Morningā€™ in aid of Macmillan Cancer Support, on 25th September 2020. Iā€™m hoping to chit chat with friends, colleagues and family around the world ā€“ so Iā€™ll be hosting the video ā€˜meetingsā€™ 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 Oā€™Clock for those in the Far East and down under. Hopefully youā€™ll all fine some time to get online with me ā€“ even if only for a few minutes. Donate the cost of a coffee or two and weā€™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.

Iā€™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 youā€™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…

Itā€™s been a funny old month really. I had a 2nd checkup last week, a bit cursory really ā€“ just a feel around by neck and chin(s). No lumps that shouldnā€™t be there, but really Iā€™m waiting for Septemberā€™s scan, so that Iā€™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 ā€“ more importantly, to see if thereā€™s any spread,

So thatā€™s just a waiting game.

I still have to smile at the irony of my medics insistence that I donā€™t lose any weight ā€“ and we almost got into an argument at last weeks checkup, because they say Iā€™m losing too much weight ā€“ too fast. I must admit, they may have a point.

Itā€™s a bit of a difficult one ā€“ Iā€™m pushing myself to eat and am certainly doing better than a few weeks ago, but the actuality is I canā€™t eat much of anything. Mostly because I still have very little sense of taste. But also, because of almost mon-existent saliva production, itā€™s difficult to eat without drinking some water with every mouthful of food, else it wonā€™t go down. So I donā€™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 ā€“ 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 ā€˜retirementā€™ day and Iā€™d have been a pensioner. What an awful thought šŸ˜‰

Yeah, for Wozzer this was a milestone to become more active. Or should that be simply, active? Anyway ā€“ what better than a cycle ride in the nearby Forest of Dean. There are a number of trails and bike hire there ā€“ 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 hadnā€™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 ā€“ 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 ā€“ 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 itā€¦

 

Back to present daysā€¦ We started off well ā€“ 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 ā€“ but interspersed with me not having much stamina, meant a few brief stopsĀ  - we got some great-looking family shots here.

But ā€“ what goes up must come down. I mean ā€“ you have to try picture thisā€¦

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

Then we werenā€™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 ā€“ 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 Samsosā€™ scream. She turned round and noticing one missing and asked ā€˜whereā€™s dadā€™?ā€™

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 ā€œ Iā€™m okay, just trying a short cutā€.

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 ā€“ but in fairness, it was a memorable day!

Also, Iā€™ve done a bit more planning for the ā€˜Worldā€™s Biggest Coffee Morningā€™ in aid of Macmillan Cancer Support, on 25th September 2020. Iā€™m hoping to chit chat with friends, colleagues and family around the world ā€“ so Iā€™ll be hosting the video ā€˜meetingsā€™ 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 Oā€™Clock for those in the Far East and down under. Hopefully youā€™ll all fine some time to get online with me ā€“ even if only for a few minutes. Donate the cost of a coffee or two and weā€™ll be eternally grateful. It all counts and all donations are going to a great cause.

Iā€™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 donā€™t install in advance, no worries ā€“ when you click the invite link that Iā€™ll send next month ā€“ it will download and install on whichever device you use. Just say yes to the permissions it requests (use audio, video etc) and youā€™ll be good to go in just a few minutes.

Until then, stay safe and well šŸ˜Š

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 ā€“ from boxing ring to motor racing (or horse racing?), but Iā€™m really pleased to feel Iā€™m on the right track to recovery.

I had the first of my monthly meetings ā€“ post treatment, with the ENT team. We discussed how Iā€™m feeling ā€“ 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 šŸ˜‰

Still only managing a tiny amount of solids and liquids by mouth, but the team are pleased Iā€™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 ā€“ 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 Iā€™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 ā€“ and thatā€™s a real blessing. In some respects, itā€™s the worst of all the side effects from the radiology treatment.

The physical examination was good ā€“ 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 didnā€™t appear to be any sign of Larry the Lump.

Weā€™ll know better about that in September, when Iā€™ll have a full scan.

But for now ā€“ I feel Iā€™m definitely on the right track to a knock out.

Alsoā€¦

Iā€™ve just started preparing some fundraising for Macmillan Cancer Support

This is going to be by way of their annual ā€˜Worlds Biggest Coffee Morningā€™ to be held on 25th September 2020. Hereā€™s a promo video of how anyone can host a local event.

Of course ā€“ Wozzer has to be different. So Iā€™m hosting a ā€˜virtualā€™ coffee morning, with friends, family and of course my wonderful blog subscribers around the world.

Iā€™m planning to combine Zoom Video Meeting and share a meetings link, so that we can see and speak. Timezones wonā€™t be an issue ā€“ Iā€™ll do my best to meet you for a coffee, wherever you are in the world.

Iā€™ll update my blog with more details and times as we get closer to the day, but for now thereā€™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 ā€“ 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 Iā€™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 ā€“ forever. Also, sunblock factor 50 must be applied whenever exposed to sun. Again forever.

I wonā€™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. Iā€™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 Iā€™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 Iā€™ve decided to wait a week or so, before attempting solids again. Iā€™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 Iā€™m pleased with that and hopefully the worst is over.

It wonā€™t just be over for me though.

I receive so many best wishes and notes of bravery ā€“ and theyā€™re all sincerely appreciated. But as is said ā€“ behind every man is a great woman and thereā€™s no truer case than mine.

Samros has been an absolute pillar of strength. And I donā€™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 Iā€™m fortunate that because of the lockdowns and shutdowns, Samros is on furlough and therefore sheā€™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.

Iā€™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 - sheā€™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 weā€™ve known each other. So the little in-jokes, the smiles, glances, touches and a lot of ā€˜ I love youā€™s ā€˜ 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 wonā€™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 ā€“ and unless thereā€™s anything significant to write about in-between (eating a decent plate of anything comes to mind), Iā€™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 šŸ˜‰

17-Ring that bell Woz

12 June 2020

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

Iā€™ve been using E45 moisturiser since week one, twice a day ā€“ all around my neck and under chin. It hasnā€™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 itā€™s another drug that I have to be careful of, because of my kidneys. So Iā€™m limited to one a day. And that isnā€™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 ā€“ so go through the whole rigmarole again.

I just deal with it ā€“ I find option (a) ā€“ 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 ā€“ final treatment. No matter how much pain and discomfort I have and have been through, this is a day that Iā€™ve been counting to, since the start of treatment on 4th May.

And itā€™s a happy day. Iā€™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 Iā€™m saying goodbye to some good friends.

But I donā€™t want to see them again ā€“ 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 Iā€™m saying thanks to.

As an added ā€˜bonusā€™ 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 ā€“ to Ring The Bell ā€“ announcing that radiology treatment is over !!!

So thatā€™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. Iā€™m prepared for this ā€“ 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, Iā€™ll just pierce myself in a few places, cook according to instructions and stand for a few minutes, before serving the next post šŸ˜‰

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 thatā€™s how I understood it.

So ā€“ another first in my life, sitting in a comfortable chair looking up at a plastic bag of blood thatā€™s been donated by others and ready to be infused into Wozzer.

I will admit to wondering where the blood came from and if itā€™s okay. But as with everything, I have faith in the system ā€“ so signed the consent form for the transfusion to begin.

Again, nothing is left to chance. Two nurses come to check me ā€“ 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 ā€“ just to be double sure I presume. They donā€™t mention all the previous cock-ups with transfusions, and I donā€™t ask.

Anyway, 2 bags (units) of blood ā€“ 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 Iā€™ve found a link to it. First shown on BBC on 23rd June 1961 making it almost 60 years old. Itā€™s still a classic.

They said Iā€™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 ā€“ others have written blogs and laid it out. But that still didnā€™t really prepare me for what was to come.

Nothing new ā€“ just even more intensity of all the previous side effects, now coalescing into one feeling of total malaise. Itā€™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 itā€™s also becoming a mental issue. I just want it to stop ā€“ or at least give me a break for an hour now and then.

Nope ā€“ itā€™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, Iā€™ve taken to sleeping sitting upright in a chair in the lounge. Laying down doesnā€™t seem to be an option any more.

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

Iā€™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 ā€“ 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 hereā€™s an update on how the fight is goingā€¦

Iā€™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 ā€“ and lolly sticks, in case the need arises again.

The eating problems havenā€™t gone away though. The condition causing this has a name ā€“ 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 šŸ˜Š

Iā€™m solely on the nutrition liquids now ā€“ 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, itā€™s best I donā€™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, itā€™s when I donā€™t demand it and it comes up and then slithers down my chin, like some kind of old geezer - losing bodily function control, that Iā€™m in danger of becoming.

And if thatā€™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 ā€“ at the back and above the neck (see photo).

I donā€™t mind that, itā€™s no worse than some ā€˜home haircutsā€™ Iā€™ve seen during the lockdown! Seems 50/50 on whether itā€™ll grow back. I donā€™t mind that either ā€“ a small price to pay in the big scheme of things.

This does come with a bit of a burning smell ā€“ seems to linger on and around me all the time now. I donā€™t mind this either. But along with the gunk dribble, the weird haircut, croaky voice zonked out morphine look ā€“ Iā€™ve no worries about social distancing. Seems everyone is giving me a wide berth these days!

I canā€™t quantify this, but having a poke around under my chin I donā€™t think Larry the Lump is anything like the size he was originally. So I do think confidently that while Iā€™m getting a bit of a battering ā€“ the Lump is getting more.

Just have to keep focussed for the next few weeks šŸ˜Š

Week 4 round-up:

Weight: 124.3kg

Appetite: 10%

Meds:

Fluoride toothpaste 5000 PPM

Mouthwash ā€“ Caphosol

Pain: Paracetamol and Oramorph

Local anaesthetic: Gelclair oral rinse

Laxative:Laxido

14-The inns and outs of eating

22 May 2020

Week 3 / round three

Itā€™s been a funny olā€™ week, all things considered.

Iā€™ve certainly been through it and realised the first couple of weeks were most certainly shadow boxing. This week Iā€™ve been hammered from all angles.

My speech is now altered ā€“ it varies from my normal gruff through to something more akin to a high-pitch squeal. I reckon I can do four octaves ā€“ sometimes in a single sentence!

I did have a word with my team about pain relief ā€“ my mouth is pretty well sunburned throughout its inside now and this is where we do need some strong painkillers. I'd moved up from Paracetamol to Codeine and Paracetmol combined. Known as Co-Codamol 30/500. Did that over last weekend, but that failed to relieve the pain.

Anyway ā€“ a phone call to the team on Monday decided that Morphine was the way to go. My version is Morphine Sulphate Oral Solution 10mg/5ml ā€“ commonly known as Oramorph. It took a couple of days to get my dose correctā€¦

I guess a) so that Iā€™m not zonked out all of the time and b) to control any thoughts of long-term dependency.
So, since Tuesday Iā€™m taking 20mg every 4 hours and most of the pain is under control now. I say most, because Iā€™m really struggling to swallow anything by mouth now. Even sipping water is seriously painful as I try to swallow.

Thankfully Peggy is already in place and 99% of my intake is by the feeding tube, directly into my stomach. The other 1% is me trying odds and sods of things to try and eat ā€“ and theyā€™ve given me lists of medium and soft foods to try. Hardly anything is going down (and staying down) including Weetabix, custard, stewed apple etc.

Typical mealtime goodies

I can see this could become a serious issue, because it can be a case of ā€˜use it or lose itā€™. Yes sure, the Wozzer bravado of a few weeks ago about losing weight is still around ā€“ but not at the cost of losing the ability to eat in the long term isnā€™t. So Iā€™ll need to work on this.

Of course the change of diet / foods in and the mixture of medicines also have an affect of, shall we say, the innā€™s and outā€™s ā˜¹

Hereā€™s the thingā€¦ Strong painkillers (even 1000mg of Paracetmol), but certainly codeine and good ol morphine, come with a sting in the tail (so to speak), in that constipation can be an issue. I was ready for that and already had a supply of Laxido laxative. Had been taking one a day since last week.

But it was becoming a bit of a concern that all was going in and for a good week or so, nothing was er, coming out.
Wednesday 20th evening I finally got the feeling that all was ready to go.

Talk about mixed messagesā€¦ 40 minutes of grunting and groaning and just a little bit of movement. But it so happened that the little bit of movement was all ā€“ no progress forwards and even worse, no way to reverse the process. And now I was getting worried ā€“ not least because Iā€™ve read of middle-age men having heart attacks in exactly this same situation.

No way is Big Wozzer being found dead like that ā€“ in his en-suite, with trousers around ankles, phone still in his hand. Oh no sir ā€“ not at all.

Reminded me of an old joke ā€“ ā€˜Did you hear about the constipated mathematician? Worked it out with a pencilā€™.

Google must have a better answer, eh?
Manual evacuation is the term I found ā€“ using a small lolly stick(s) or oneā€™s own fingers. A glance around my en suite didnā€™t elicit any lolly sticks. Soā€¦

All Iā€™m saying is I glad Iā€™m okay with simple problems and counting and didnā€™t need to use my toes to help šŸ˜‰

Oh by the way ā€“ on Friday the laxative finally kicked in ā€“ just in time to ā€˜helpā€™, now that Iā€™m on 100% fluids. Not even thinking of describing this.

On the bright side ā€“ I canā€™t believe Iā€™m halfway through the 6 weeks of radiotherapy treatment and still upbeat pretty much every day. It does seem a tired old line at times, but Onwards and Upwards is definitely the feeling to have each week of treatment.

Just take the punches ā€“ but not too many šŸ˜Š

 

Week 3 round-up:

Weight: 123.5kg
Appetite: 10%

Meds:
Fluoride toothpaste 5000 PPM
Mouthwash ā€“ Caphosol
Pain: Paracetamol and Oramorph
Local anaesthetic: Gelclair oral rinse
Laxative:Laxido

13-Float like a butterfly, sting like a bee

15th May 2020

Last weekend did allow some recovery from the week-one treatment and by the start of week 2, I was feeling pretty good, all things considered.

Week 2 / round two seemed, on the face of it ā€“ to be more of the same. Now that the week is over and completed 10 treatments out of 30, Iā€™m starting to get the feel for things.

And oh boy, can I feel themā€¦

So I get a ā€˜fractionalā€™ dose of radiation each day. My treatment calls for 65 grays (Gy) of energy over the six weeks period. With 30 days of treatment, thatā€™s a fraction over 2Gy per day. It has a cumulative affect (building-up) of adding to the previous dose(s). Therefore, it follows that the side-effects also build up.

And they do.

Monday and Tuesday ā€“ yep, still feeling tired but thatā€™s easily manageable, just add sleep (so to speak). Then on Wednesday my throat became a proper sore throat.

Funny really, even with Larry the Lump still in place ā€“ itā€™s never been even the slightest of painful to touch. The original left-side throat pain was still there and still with the mildest of pain.

The best I can say is Larry either got a sucker punch in while I was dancing around the ring in true Mohammed Ali style, or he somehow got a handful of broken glass for me to chew. Whatever. Suddenly, swallowing became a pain ā€“ a real pain.

On its own no real problem but combined with my sense of taste failing has resulted in a loss of appetite. Not something that Big Wozzer is used to!

I guess itā€™s been coming, because I weighed in at 4kg / 9lb lighter in just a week. Added to this are the ulcer-type sores developing on my tongue and inner cheeks.

Discussed all this on Thursday with my specialist nurse Vicky and one of the nutritionists, Laura. Itā€™s vital to keep trying food by mouth so that I donā€™t lose swallow function ā€“ but isnā€™t at all easy in practice.

For comparison – on Monday night I polished off a decent place of fish, chips and peas ā€“ vinegar, tartare sauce.. the works. By this weekend, it took 30 minutes to finish half-carton of fresh soup.

Iā€™m going to need to get my ring craft sorted quicklyā€¦
Float like a butterfly, sting like a bee was all well and good for Ali ā€“ he did it with style.
I perhaps more resemble: Fly like Buzz Lightyear and sting like a butterfly šŸ˜‰
Bring on round 3 anyway!

Week 2 round-up:

Weight: 122.7kg
Appetite: 30%

Meds:
Fluoride toothpaste 5000 PPM
Mouthwash ā€“ Caphosol
Pain: Paracetamol
Local anaesthetic: Gelclair oral rinse
Laxative:Laxido

12-Swings and roundabouts

7th May 2020

Iā€™m four days into my radiotherapy and 4/5 of week 1 (round 1) done. Iā€™ve done really well. Larry the Lump hasnā€™t really laid a glove on me. Not feeling pain or anything.

My radiographer team ask me every day how I am ā€“ and yep Iā€™m well upbeat. ā€˜Thatā€™ll changeā€™, they say ominously ā€“ ā€˜but donā€™t worry Woz, weā€™ll get you through itā€™. That comes across 100% sincere and itā€™s a warm feeling. The connection is already there.

I had a blood test prior day, to check kidney function and this was discussed with me by Dr Grant.

ā€˜Ah, itā€™s your kidneys Warrenā€™ he says, looking straight at me. ā€˜Theyā€™re getting on a bit ā€“ nothing to worry about, they ā€˜re doing just enough work, but the particular chemotherapy drug we planned for you – Cisplatin, does attack the kidneysā€™. I understood that ā€“ doing just enough work is how Iā€™ve got through many jobs in life!

ā€˜Also, he continued, weā€™re obviously making risk assessments on all chemo patients regarding COVID-19; the age of the patient and the possibility of contracting the virus, because of lowered immunity due to chemoā€™.

Iā€™d flagged that up previously as a concern of mine ā€“ the sheer irony that Covid might finish me off in the early stages of curing a tumour ā€“ because of the treatment, wasnā€™t something I wanted to consider ā€“ although it is of course a very real issue.

ā€˜So on balance, weā€™ve decided that no chemo is the best course of action in your case.ā€™ Dr Grant continued ā€˜ The chemo only ever shrinks a tumour ā€“ itā€™s the radiology that eradicates it ā€“ and thatā€™s of course the plan all alongā€™.

The old 'uns are best - background to Cisplatin cancer treatment

So itā€™ll move the ā€˜wellness sliderā€™ a notch or two to the left, but the long term prospects (kidneys etc) around 10 notches to the right. Swings and roundabouts to a man of simple explanations such as me.

Life and death decisions that my team are making on my behalf.

As Iā€™ve said before, I have complete faith in my doctor and his team. No argument from me, no request for a second opinion ā€“ just get on with it Doc, Iā€™m with you 100%

So now I have a clear run at Larry ā€“ no chemo to slow me down and 5 weeks to go.

Larry landed a couple of blows of Friday 8th just as the bell was ringing for the end of round1/week 1.

That only winded me, but I felt it nonetheless. Seems to make me feel 20 years older, Iā€™m walking at one-third pace; Ā eating is minimal and I could already win a sleeping-contest.

At least I have the weekend to get some strength back ā€“ bring on week 2 šŸ˜Š

Week 1 round-up:

Weight: 127.4kg
Appetite: 70%

Meds:
Fluoride toothpaste 5000 PPM
Mouthwash ā€“ Caphosol