Complete blog

1-Never mind this corona virus stuff…

31st March 2020

Just about a week into the UK lockdown, and already an addict – of Netflix. And Amazon Prime, BBC4, all News channels and even a subscription to Disney +

The lunchtime news was reporting prior day cases had risen to over 22,000 cases and it was increasing at around 3000 cases per day. Serious stuff and admissions starting to rise exponentially. Hospitals were coming under extreme pressure for equipment, ventilators and in many locations – beds.

I’d been experiencing some odd moments while eating for a few weeks – nothing serious, just food getting caught in the gullet and causing a slight coughing fit. Anyway this lunchtime the coughing brought up a quantity of blood…

So it was not with total embarrassment (but close), that I went to the A&E reception at Gloucestershire Royal Hospital (GRH) and wondered if someone could have a look at my sore throat 😉

 

As busy as they were, it didn’t take long for a doctor to come and see me. I explained what happened and out came the lolly stick. Say ahhhhh…

It only took one look and then she said ‘ah – I’d better get you up to ENT for a better check with a specialist’. ‘Can you come tomorrow morning’?

Next day appointment, with all this virus going on?

That got me thinking…

2-Let the examinations begin…

It’s April Fool’s Day, but I’m not ready for any jokes this morning. Spent some of the past 24 hours googling all sorts of stuff relating to Throat cancer – and the most it taught me is to ignore 95% of what’s online!

I’m on time for my 11.00am appointment with the ENT doctor. He and his nurse apologise for being in full NHS protective equipment – complete with visors. They assure me it’s not because of me personally. The doctor has a very personable manner as he takes notes.

‘Now this isn’t as bad as it looks’ he says – holding a long thin flexible tube with a light on it. Oh really, says I who has a pain threshold of zero. And really it didn’t hurt as he fed the instrument up my nostril. Just needed to contain the feeling of sneezing!

Nasendoscopy Procedure
Image courtesy of Macmillan Cancer Support

The procedure is delightfully named Nasendoscopy and it really is quite painless. Actually it’s pretty cool to see up the inside of one’s nostril and all around the throat. Everything is seen on a full-colour monitor. All looked fine to me!

The doctor wasn’t so sure though. ‘There’s something on your tonsil bed that I don’t like the look of. You’ll need a CT scan and a Biopsy asap’, he says. We look at each other – I don’t want to say it and nor does he. But I need to know and ask the question that no one ever wants to ask.

Do I have cancer?

The doctor’s very professional – he won’t commit 100%, but he’s knowledgable enough – and we’re both grown up, for him to say that it’s likely, but of course lets be sure with some results.

I’m given an appointment for the following week for both the biopsy and CT scan. I decide that I discuss the possibility with Samros, my wife – but no one else until we’re sure.

Again there’s no hospital delay for me, even with the ever growing virus problem, so we wait a week without really discussing this in depth.

But one just gets that feeling…

3-Days of waiting

6th April 2020
It’s only a few minutes walk for me to the May Hill Unit at GRH. I’m there early (as ever) for my 7.30am appointment.

It’s Biopsy day and I’m in for a simple procedure to extract a piece of tonsil mass for analysis. It might be simple, but it’s carried out under a general anaesthetic. Maybe 30 minutes in the operating theatre, another 30 minutes in recovery area and then taken back to May Hill Unit to be cared for by the delightful staff.

Vital signs are monitored for pulse, oxygen level and blood pressure. I’m a but low on all, so they’re keeping me a few more hours until things pick up. At one point my pulse was 48 beats per minute.

‘That’s about the BPM as Linford Christie’, says nurse Vikki. ‘Yeah, we’re much the same’, says I.
That got a laugh – dunno why 😉

Horizontal selfie

I was much improved after a few cups of tea and biscuits and walked home mid-afternoon.

 

7th April 2020
I’m at GRH again, but this time for my scan. I’ve been booked for a full-body computerised tomography CT Scan (or CAT scan). It combines x-rays and computing power to create quite detailed images of the inside of one’s body.

The machine has the look of a huge doughnut and I lay on a sliding bed passing through it a few times, backwards and forwards, for around 15 minutes.

That’s it, no noise, no feeling and ready to go home.

Just got to wait for the results…

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 🙂