Medications

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 – to be more of the same. Now that the week is over and completed 10 treatments out of 30, I’m starting to get the feel for things.

And oh boy, can I feel them…

So I get a ‘fractional’ dose of radiation each day. My treatment calls for 65 grays (Gy) of energy over the six weeks period. With 30 days of treatment, that’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 – yep, still feeling tired but that’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 – it’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 – 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 it’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. It’s vital to keep trying food by mouth so that I don’t lose swallow function – but isn’t at all easy in practice.

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

I’m going to need to get my ring craft sorted quickly…
Float like a butterfly, sting like a bee was all well and good for Ali – he did it with style.
I perhaps more resemble: Fly like Buzz Lightyear and sting like a butterfly 😉
Bring on round 3 anyway!

Week 2 round-up:

Weight: 122.7kg
Appetite: 30%

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

14-The inns and outs of eating

22 May 2020

Week 3 / round three

It’s been a funny ol’ week, all things considered.

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

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

I did have a word with my team about pain relief – 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 – 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 – commonly known as Oramorph. It took a couple of days to get my dose correct…

I guess a) so that I’m not zonked out all of the time and b) to control any thoughts of long-term dependency.
So, since Tuesday I’m taking 20mg every 4 hours and most of the pain is under control now. I say most, because I’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 – and they’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 ‘use it or lose it’. Yes sure, the Wozzer bravado of a few weeks ago about losing weight is still around – but not at the cost of losing the ability to eat in the long term isn’t. So I’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 inn’s and out’s ☹

Here’s the thing… 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 messages… 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 – no progress forwards and even worse, no way to reverse the process. And now I was getting worried – not least because I’ve read of middle-age men having heart attacks in exactly this same situation.

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

Reminded me of an old joke – ‘Did you hear about the constipated mathematician? Worked it out with a pencil’.

Google must have a better answer, eh?
Manual evacuation is the term I found – using a small lolly stick(s) or one’s own fingers. A glance around my en suite didn’t elicit any lolly sticks. So…

All I’m saying is I glad I’m okay with simple problems and counting and didn’t need to use my toes to help 😉

Oh by the way – on Friday the laxative finally kicked in – just in time to ‘help’, now that I’m on 100% fluids. Not even thinking of describing this.

On the bright side – I can’t believe I’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 – but not too many 😊

 

Week 3 round-up:

Weight: 123.5kg
Appetite: 10%

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

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 link

or this link: https://thyg.uk/BUU004253830

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