May 2020 – Wozzers Journey with Cancer

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

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.

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

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

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 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 8^th 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

11-Love all

4th May 2020

Nope – that’s not a tennis result and certainly not the fight result.

It was just me and my own thoughts up and out of bed at 5.30 am this morning. I couldn’t really get sleep last night – sat up watching telly till around 1.30 – and here I am on the long walk from the dressing room to the ring.

Yep, the crowds are cheering me and shouting amazing notes of support. My team in the corner are all well experienced with me 100%, so no doubts there – none.

But jeez, this has now hit me – here, right now for the first time really. A proper life-changing day.

I’m going to a specialist unit for cancer treatment – my cancer. Not to visit mates of mine that have been through this in the past.

Of course, all the prior month build-up, tests, procedures, doctors meetings – blog posts and musing have been published on line. People, friends, acquaintances from my wonderings around the world have made contact – some I haven’t been in touch with, in years. It’s a warm feeling.

But now today – it’s real.

I’m not scared, my faith in the medics and family is all the trust I need – but I still get emotional and have a little cry to myself.

But I’m not feeling sorry for myself either – I fear more for my dearest and closest that need my support too. I’m a husband and father and a step-father, and no matter what’s happened along the way – there are responsibilities that are always there.

Cancer. It’s such an emotive word.

But really in this day and age, the knowledge, drugs, technology and care are so much more advanced. The odds are on my side. Let’s face it – we all go in the end, one way or another.

I used to drive 35,000 miles a year over 12 years in one job. More chance of a fatal on the M6 or the foggy M62, I used to reckon.

Crossing Monivong Boulevard by Central Market in Phnom Penh was another life-threatening act – every time!

And perhaps the way I always envisaged (and nearly did) die, was in a real sleazy bar in downtown Saigon. Now that would have been cool…

So that’s all off my chest and I’m feeling much better for it.

Climbing up into the ring now. Just hope I don’t trip over the bloody ropes and knock myself out, before I throw a punch 😉

Love to you all x

10-Pre-fight build-up.

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 😉

8-Meet Manny the Mask

Today’s session is purely mechanical and analytical. Preparing for the treatment. There’s a CAT scanner which today is just being used for measurement analysis (not diagnosis), a steel bed which is the same dimensions as used for the actual radio LINAC treatment and a very special perforated polymer sheet.

The polymer sheet is soaking in warm water and Liam positions me flat on my back, with between a headrest and what I’d describe as a bum stop. So that fixes my line.

The the pliable polymer sheet is places over my head and shoulders and still being pliable, is fixed by clips to the steel bed. So that will be my X and Y position for all future scans.

But now comes the magic – I have to lay perfectly still for around 15 minutes or so. In this time, as the polymer is cooling, it shrinks completely tight against my head and neck. A bit like vacuum forming, but without the vacuum suction.

Now the radiologist team can place marks on the mask, line it with lasers (these can be seen in the photo) so that I’m perfectly positioned and check against this reference scan, throughout the 30 sessions of radiology that I’ll have.

As the mask will be a companion of mine throughout and a close a copy as of me as anyone could see, it needed a name.

So please let me introduce…

Big Manny – the Mask

🙂

7-Getting down to business

21st April 2020

I meet my next specialist – and I guess who will become the most important person for me for a while. I’m now firmly under the care and attention of the Oncologist who will be leading the team taking care of me. Although at that time I didn’t realise what an amazing team it is.

Anyway – he introduces himself – Dr Warren Grant.

Another Wozzer I thought, that’s an amazing great omen 🙂 I’m sure he felt the same about his new patient…

He has the confident but calming style of confirming what is what. ‘You know you have throat cancer Warren, and the good news is there’s no spread away from the throat. There were some patches seen on a lung but the MRI scan confirmed they are nothing to worry about – although nothing will be left to chance and we’ll keep an eye on that going forward’.

And so, it’s down to work. No messing or waffling. The treatment is fairly aggressive he says – six weeks of radiotherapy x 5 days a week and additionally two cycles of chemotherapy on weeks 1 and 4.

Honestly that left me reeling a bit. I was expecting radio only and had already researched some that reckon it’s enough on its own.
There’s good reason though. He continues… ‘This particular type of cancer has a good possibility of eradication, with a human survival rate of around 75% after 5 years. Of course I’ll take that – and try and increase the percentage.

The cancer has an official name: Squamous cell carcinoma, left oropharynx, with TNM staging of T3 N2 M0 HPV16 positive.

The explainer below is courtesy of Cancer Research UK

TNM stands for Tumour, Node, Metastasis. This system describes the size of the initial cancer (the primary tumour), whether the cancer has spread to the lymph nodes, and whether it has spread to a different part of the body (metastasised). The system uses letters and numbers to describe the cancer:

• T refers to the size of the cancer and how far it has spread into nearby tissue – it can be 1, 2, 3 or 4, with 1 being small and 4 large

• N refers to whether the cancer has spread to the lymph nodes – it can be between 0 (no lymph nodes containing cancer cells) and 3 (lots of lymph nodes containing cancer cells)

• M refers to whether the cancer has spread to another part of the body – it can either be 0 (the cancer hasn’t spread) or 1 (the cancer has spread)

From this it’s clear the cancer has been developing for a while (T3), but it’s never given me any indication, save the mild sore throat on and off over a couple of months. The main thing Vicki advised me later is M0 means no spread to other areas of the body.

Dr Grant continues… ‘We’ll being treatment in around 3 weeks, say mid-June and finish at the end of July. On average expect the treatment to intensify as it progresses and then some months of discomfort, but hopefully feeling better towards the autumn time’.

Before treatment begins, there’s more to be done and more of the team assigned to me, make initial contact:

Speech Therapist; Dietician; Radiology team for Mask making and Endoscopy team for inserting a feeding tube. And Lead Nurse Vicky is never far away.

Just amazing – and I don’t know half of it yet, except this Gloucestershire NHS Foundation Trust is an extremely well-oiled Rolls Royce of a machine. Every single person I’ve been in contact with – or staff that have phoned me are not just professional, but very personable – without exception.

It’s easy to say this, but I really mean it that I’m feeling pretty good about my condition – because I have total faith in this highly experienced team, who seem to give me the impression that I’m their only patient 🙂

And lets not forget we’re in the middle of a pandemic, causing the UK’s greatest ever drain on NHS resources right now.

6-Is this just a cut price cancer?

18th April 2020

It’s around week 4 of the UK lockdown. Feels like month 4 for many, but for Wozzer there’s lots to prepare for. And of course if there’s anyone nerdy enough to sit researching things, it is he!

I’ll need online deliveries of shopping for sure. A friend told me that Sainsbury’s were prioritising the ‘old and sick’ Well, really I didn’t think I was either – but I might be both.

Sure enough, on the Sainsbury’s website, just register with my email and lo and behold… Sorry, came the reply – you’re not on the Coronavirus Vulnerable list.

OMG – but I’m old and sick.

So, a bit more web research brought me here at the official government website to register

Half a dozen or so cancer types listed… cancer with chemo (nope); cancer of the blood (nope); radical radiotherapy (definitely not it’s in Gloucestershire, so hardly radical); stem cell (nope).

Bummer, my tonsil cancer doesn’t qualify.

Is there another way? I hunt a bit more and check about Aldi delivery. No problems or restrictions for Tonsil cancer listed, just pay £23.99 online and have a box of food delivered.

Simple as. Save money – especially for budget cancer patients 🙂

Month: May 2020