Month: May 2020

4-Day of Truth

14th April 2020

We should have been waking up in Prague, hung over after being out on Samros’ birthday on 13th, with a great workmate from a few years ago, when we were in Cambodia. Anna now lives back in Prague. We had this booked since last October, but of course that was all kaiboshed by the coronavirus.

Just as well – in a way…

So it’s a sunny morning in Gloucester instead, the day after Easter Monday and just 7 days since I had the Biopsy.

My phone rings around 8.30am. It’s the hospital – my results are in and could I come to a meeting at 11.30 that same morning. ‘Yes of course’ says I. Been thinking of nothing else for a week.

I meet the consultant surgeon who performed the Biopsy – Mr Wheatley. He has a lovely style about him – considering the news he must deliver. He explains the cancer type in broad detail – a 3cm lump and says that the general treatment is 6 weeks of Radiotherapy at 5 days treatment each week.

He also levels with me and says the CT scan has shown some anomalies on one of my lungs, so he’s arranging an MRI scan to check that further and also a jaw x-ray, which will be needed to ascertain if any work needs to be done to my teeth, prior to the radiology treatment.

This is important, because the teeth and jaws can really be affected by so much build-up of radiation.

He’s already arranged these for me and asap after the results are in, I’ll be back for another high-level meeting with the Oncologist who’ll be taking care of the next phase. But before all of that, a nurse introduces herself to me – Vicky.

Vicky is assigned to me to co-ordinate and be my point of contact for the next phases of my journey. This will be through all pre-treatment, treatment and post treatment episode.

Vicky is the Lead Head and Neck nurse specialist and is also a Macmillan Nurse.

Between Mr Wheatley and Nurse Vicky, I’m beginning to become quite humbled at the care and attention that has been planned for even this first diagnosis meeting. I leave the consultant and Vicky has an armful of RELEVANT information for me – all produced by Macmillan… A booklet specifically about Head and Neck Cancers, a contact for specialist benefits claims for cancer patients and a hospital contact who will discuss my holistic care throughout.

But right now, there’s only one thought on my mind, how on earth do I tell family, starting with Samros, who’s patiently waiting for me at home. Well we did know I suppose, even though we didn’t know until we knew.

And that just about explains the jumbled-up feeling. We had a few tears and talked it through. I’m sure this is beatable, but just the very word ‘Cancer’ is so, so emotive.

Then of course it’s time to break the news to family – my brothers in London, then my mum, then got my 3 grown kids and I together on a group video call.

I didn’t hold back and told it as I understood it – which on that day was really just a bit abstract to me. I explain that this might not be an aggressive cancer and has a good rate of recovery. Also, I didn’t have all the details yet, that would come after the MRI and next discussion with the Oncologist.

I think that allowed me to drip feed the extent over a week or so and looking back, gave us all time to absorb what has happened. And a lot had happened in just two weeks, so far.

5-Hannibal Wozzer

16th April 2020

So this is the start of the preliminary work, before treatment begins in around a month. I’ll be provided with a full schedule of treatment days when I have my mask fitted next week. For now it’s just a couple of x-rays.

Well, one x-ray for teeth and jaw. That was normal.

The MRI was a bit different to what I expected. Not that I knew what to expect…

MRI stands for magnetic resonance imaging and it uses magnetism to build up a picture of whichever part of the body requires errr, imaging.

For head and neck images, one has to be perfectly still. They make sure of that, by literally clamping one’s head in a plastic frame which is then clamped shut. As shown in the photo – just like Hannibal Lecter.

Oh – that’s a stock photo by the way, not quite my profile – yet 😉

Well, it’s painless for sure. But noisy – much more than I expected for such a high-tech piece of kit. I spent around 10 minutes sliding back and forth, while it was clanking and whirring.

Then slide out for an injection of ‘contrast’ dye to be added to by vein, ready for a repeat episode of noise.

I mean, no drama about it – but definitely much more than anything I’ve experienced medically.

Seems this cancer stuff is the real deal…

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 cheap cancer patients 🙂

 

 

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.

8-Meet Manny the Mask

27th April 2020

It’s my first visit to the Oncology centre in Cheltenham General Hospital.
Around 20 minutes drive from home. It’s good to get out on the road during the lockdown

I’m being fitted with my mask, which will be used for all the radiotherapy sessions. Met in the reception by a very amiable and likeable chap – Liam. He explains the process to me.

And it’s amazing!..

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

🙂

 

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…

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 🙂

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 Netflix 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

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