PEG tube feeding

9-Introducing Peggy the PEG

30th April 2020

I’m back in Gloucester Royal for the final job to be done, prior to treatment commencing.

I was booked in by my care team. A couple of days earlier, Laura my specialist dietician called me to outline the what and why.

The ‘what’ is a PEG stands for percutaneous endoscopic gastrostomy, a procedure in which a flexible feeding tube is placed through the abdominal wall and into the stomach. PEG allows nutrition, fluids and/or medications to be put directly into the stomach, bypassing the mouth.

The why is because I’ll have to take fluid feed directly into my stomach, for the times when I’m unable to eat by mouth.

Laura continues… ‘I don’t want you losing weight, Warren,  you must maintain weight to close a possible to where you are now’
‘Do you have the correct notes with my name on? I ask…

‘ I’m 20 stones as it is and was hoping this condition of mine might knock a few more off, without much effort from me’ I’ll be happy around 100kg and a six-pack. Well, even a 12 pack at a push.

No way she says – I want you on blue top milk (full fat) and good protein, carbs and all.

I think this is going to be a bigger struggle than fighting the cancer 🙁

Anyway, I digressed.

So I’m under the care of Dr Li for this procedure just done under sedation. Pop the tube down the throat all the way to the stomach. Then poke a hole into the stomach from the outside, pull through and tie in a nice bow. Or something like that 😉

I used a body double – my photos are x-rated

The way to a mans’s heart…

That’s perfect for me – my lovely wife Samros certainly knows how feed me with amazing tastes she conjures up, but Peggy to the peg might just have the edge when the going gets a bit tough.

Friday 1st May 2020

I get a phone call from the Radiology team. They can program my treatment earlier than expected – can I came in to Cheltenham Oncology on Monday 4th for my first treatment.

Yep – I’m up and ready for this – just bring Larry the Lump on. He’s in for a shock when he sees the team in my corner…

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

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