Treatment phase

10-Pre-fight build-up.

4th May 2020

Not only am I starting treatment earlier than planned, we all get the chance to escape lockdown for an hour or so, with Samros and Nisa being able to ‘take care’ of me, on the drive to Cheltenham. We’ll that’s my excuse to the old bill if we get stopped.

They’re not allowed into the Oncology Unit, but happy to sit in the car and wait. Each session I have is generally around 20 minutes , of which about 3-4 minutes is all required for the main treatment.

Here’s a picture of my main LINAC – named by the hospital as ‘Cherry’.

Personally I’d prefer somthing like ‘Big Lenny the LINAC’, but just pleased to have Ms Cherry on my side.

You can also see Big Manny laying there waiting for me…

I’ll update treatment once or twice a week – not sure much will happen this week – as we just weigh each other up on the 1st round.

Click here for in-depth details of the Gloucestershire Oncology Centre

I also found a great explainer of what a LINAC is and how advanced things are these days.

Enjoy this video – It’s from a clinic in the USA, but exactly the same model as I’ll be treated with.

I just wished w could have dubbed good old Glosser accents into the presenters 🙂

12-Swings and roundabouts

7th May 2020

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

My radiographer team ask me every day how I am – and yep I’m well upbeat. ‘That’ll change’, they say ominously – ‘but don’t worry Woz, we’ll get you through it’. That comes across 100% sincere and it’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.

‘Ah, it’s your kidneys Warren’ he says, looking straight at me. ‘They’re getting on a bit – nothing to worry about, they ‘re doing just enough work, but the particular chemotherapy drug we planned for you – Cisplatin, does attack the kidneys’. I understood that – doing just enough work is how I’ve got through many jobs in life!

‘Also, he continued, we’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 chemo’.

I’d flagged that up previously as a concern of mine – the sheer irony that Covid might finish me off in the early stages of curing a tumour – because of the treatment, wasn’t something I wanted to consider – although it is of course a very real issue.

‘So on balance, we’ve decided that no chemo is the best course of action in your case.’ Dr Grant continued ‘ The chemo only ever shrinks a tumour – it’s the radiology that eradicates it – and that’s of course the plan all along’.

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

So it’ll move the ‘wellness slider’ 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 I’ve said before, I have complete faith in my doctor and his team. No argument from me, no request for a second opinion – just get on with it Doc, I’m with you 100%

So now I have a clear run at Larry – 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, I’m walking at one-third pace;  eating is minimal and I could already win a sleeping-contest.

At least I have the weekend to get some strength back – bring on week 2 😊

Week 1 round-up:

Weight: 127.4kg
Appetite: 70%

Meds:
Fluoride toothpaste 5000 PPM
Mouthwash – Caphosol

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

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

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

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 😉