Dr Warren Grant

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.

27-Learning new words about Cancer

30th January 2021

As they say - 'you're never too old to learn'.

And it's true. I’ve learned a new word: Scanxiety - which describes ‘the apprehension felt by people with cancer as they wait for their next scan’.

This came about by doing too much of what I shouldn’t - which is hunting around the interweb trying to find information, about things of which only give me an incomplete picture as to what's likely to happen.

Let me back up a bit. My first full scan, post treatment was done last September – and that was a very anxious wait to find out the results.

Good and bad was the outcome of that scan. Good that the throat tumour has diminished – bad that metastatic (secondary cancer) tumours had been found in a couple of locations.

They weren’t deemed ready for treatment then, but another scan was scheduled for January 2021 to see if there’s any further development.

And there is.

No matter that I try and not worry about what I can’t influence, but waiting for that next scan and the outcome, is never ever far from my thoughts. Every day.

That is definitely Scanxiety.

And so I was ever so glad to have my January PET/CT scan and the subsequent appointment to discuss the results. The scan indicates a third tumour showing in my right lung and the original two in the same lung are still developing.

It wasn’t a great shock and I’m now back under the care of my oncologist – the excellent Dr Warren Grant. He phoned me the other day to get my thoughts and to update me on his thinking.

As ever with me, it’s not yet clear-cut. I will be starting treatment again, but right now it’s not definite when, or with what. By this I mean the choice will be either Chemotherapy or the much newer Immunotherapy treatment.

This is another new word for me. Immunotherapy ' which uses substances to stimulate my own body immune system to fight the cancer'. I suppose it's too much to wish these will be ganja-type substances, but one can hope - eh?

The decision depends partly on whether my cancer would be receptive to Immunotherapy and also on the overall effect of how my body will respond to either of the drugs.

That – and the schedule for treatment will become clearer on my next appointment with Dr Grant in mid-February.

But for now, I’ll end on a lighter note because I just received my first Covid vaccination jab. I’m in ‘group 4’ because of my condition and treatments.

No surprise that Gloucestershire NHS have it well sorted. Very quick and slick at the vaccination centre and no pain either.

Although I’m sure I heard the nurse whisper under her breath that I’d just feel a little prick.

Not a new experience for Wozzer… 😊

31-Big balls are not aways desirable

1st December 2021

Well, it was always coming, but a bit of a shock just the same. I’ve had a nagging pain in my back for a good couple of months or so. Not a lower back muscular pain and certainly not a sports injury!

I flagged this up at my recent meeting with my Oncologist – the ever-professional Dr Warren Grant. He did say that secondary tumours in the lung sometimes show few symptoms and for those that do, a low ‘nagging’ pain is not uncommon.

So, definitely time for a new CT scan to see what’s developed since my previous scan back in May, when the tumours were still relatively small.

The results of the scan came back last week and yep, it was a bit of a shock – to me, at least.

Metastatic (secondary) tumour development in right lung

Jan 2021 May 2021 Nov 2021 About the size of…
Tom 17mm 20mm 55mm Snooker / Pool ball
Dick 14mm 15mm 36mm Ping Pong / Squash ball
Harry 7mm 11mm 29mm Lollypop candy

I say ‘to me’ because Dr Wozzer indicated that these sizes are not too bad, when considering the overall size of a lung.

“Oh really?” I thought.

Anyway, he decided that now is a good time to begin treatments. The plan is for some ‘palliative radiotherapy’ now and most likely to follow with some cycles of chemotherapy in the new year.

So a couple of days, ago I was back to the Oncology Centre in Cheltenham, for a pre-treatment scan and some body mark-up.

Felt a bit strange (and disappointing) to be walking back in there nearly 18 months after the throat radiotherapy.

In another respect, a feeling of familiarity: The same receptionist greeted me with a ‘Hi Warren’ - obviously remembering me (or at least remembering the tin of biscuits I left back then).

And the radiologist doing the prep work was the ever-friendly William – who is always bright and cheerful and became a good ‘mate’ during the hard weeks of treatment back in May / June 2020.

Will took me through the procedure which was a quick scan to see the tumour locations and then a tiny ink tattoo on my chest, which defines the ‘reference point’ that will be used when aiming the radiation treatment.

I’ve known all year this treatment was coming – and I’m ever so glad that Dr Grant held off until mow. It’s allowed me a good summer and autumn to get around and see family and friends.

Equally I’m now relieved that treatment is commencing. Larry the Lump was well beaten – and remains so.

I also know that Larry's sons - Tommy the Tumour, Dick and Harry have been gearing up all year for a fight and I’ll be taking them on next week, with the first bout of palliative radiotherapy.

I'm scheduled for five treatments (known as 'fractions') on w/c 6th December.
More from me soon after x

32 – Palliative Radiotherapy – what does it do?

14 Dec 2021

Now I know how a ready meal feels. Cook on full power for 4 minutes and then rest for one minute.

I’ve now finished my fifth and final (for now?) fraction of Radiotherapy. So that’s been one treatment a day for five days. As I mentioned in my previous post, there’s no mask for body positioning in the treatment machine (LINAC), just a small tattoo on my chest.

Each day, I’m positioned on the machine and then the radiologists use lasers to ensure my body and the machine is in exactly the correct position. Then I must lay perfectly still for a few minutes as though my life depends on it. And to a great degree, I suppose it does!

I have to say I’m pleasantly surprised that the side-effects are not so bad at the moment – certainly when comparing with the extremely tough treatment to my throat last year. This treatment is really to ease the pain in my back, that’s been caused by the tumours increasing in size.

So, they are hopefully shrunk a bit in size, but my understanding is that it’ll be a few weeks before the full effects are known.

I’ve also had the time – and inclination – to read up some more on what radiotherapy does and what these treatments are given in ‘fractions’, rather than one good ‘zapping’ – so to speak. When I say ‘read up’ I really mean ‘skim read’ of the bits I can understand.

So here goes:

It starts off with the billions of cells that we have in our body. Normally they ‘just work’ and keep all our body working in tip-top shape. Different types of cells in the body do different jobs. But they are basically similar. They have our DNA which generally controls how the cells behave.

Cells come and go. They make copies (reproduce) in an orderly and controlled way and are needed to keep the body healthy. Sometimes they get damaged, and our body has amazing repair teams that can fix cells very quickly and get them good as new.

BUT, some cells get confused by instructions from our normal DNA and they start reproducing (mutating) in a disorderly way and become uncontrollable.

In the worst cases, they can’t be fixed by the repair teams. These worst-case mutated cells can become ‘cancer tumours’

Of course, there are a number of treatments to either kill-off the cancerous cells, or at least hinder their growth. These range from chemical therapy (chemotherapy) to radiation therapy (radiotherapy) and even newer treatments such as Immunotherapy.

I’ve also spent the past few weeks on my own self-administered treatment of Beerotherapy. I’m finding that high intake doesn’t actually control the tumours, do I do forget about them for a few hours. Treatment will continue for as long as I can get to the pub.

Anyway – back to radiotherapy!

The machine that I refer to is a medical linear accelerator (LINAC). I wrote an article on this last year here

It uses extremely high-power energy beams - let’s call these micro-bullets – moving at the speed of light and accurately aimed at the tumours. They’re ‘fired’ from outside the body and because they’re so minutely small and incredibly fast moving, I don’t feel anything while the treatment is being done.

Inside my body however, a number of things begin happening.

First, obviously the micro-bullets are also damaging good cells that are adjacent to the tumours – but my body’s repair teams get straight to work on repairing these. The really clever bit is that the cancerous cells that are getting blasted are not able to repair themselves anything like as effectively – and so bit by bit they become reduced or sometimes destroyed.

And this bit-by-bit thing is helped by what the medics call ‘fractionalisation’.

Which means that instead of one single dose of energy – in my case 20 Gy (grays) of energy (equivalent to around 200,000 normal chest x-rays) is given to me in five fractions of 4Gy per day. In this way my healthy cells are being repaired 24/7 and ready for the next treatment.

An analogy (admittedly not a great one) is to consider a car with four road tyres and a spare in the trunk. If the driver was unlucky enough to have a puncture in each – it would most likely to be less disruptive to have one puncture each day and repair it, rather than five punctures in the same day.

All the while, the cancerous tumours are in big trouble, because they don’t have the efficient repair teams to fix themselves.

So, fractionalisation is far better for the body. Of course, not all the healthy cells repair overnight – or even over days or weeks. Some of these also get damaged beyond repair and this becomes what we know as side-effects from the treatment.

And unless I’m one in a billion – I’ll feel these side-effects over the next few days, weeks or even months.

Which leads me nicely towards the holiday season. No more treatment until at least mid-January, when I see Dr Grant again and find out what comes next.

And that leads me nicely in to wishing you a very happy Xmas and a peaceful and prosperous New Year, wherever you are in the world.

Take care

Woz x

33 – Testing, testing…

31st March 2022

Wow, how time flies.

Looking back through my blog – it’s exactly 2 years to the day that I went to my local hospital with a bit of a sore throat. Mind you – it’s not a date I’d ever forget anyway!

I find it interesting to look back at the phases – from the shock of initial diagnosis in 2020, through the aggressive radiotherapy and recovery, to the ‘living with cancer’ phase of 2021 and now the palliative treatment phase due in 2022.

I have to say that right now, the issues are far more mental than physical.

Outwardly I look fine and generally feel okay – well, apart from breathlessness and a nagging back pain. Both are the result of the Tom, Dick and Harry tumours. They were stunted in growth when given a good zapping of radiotherapy a few months ago, but the little bastards are telling me that they’re finding a way to recover and annoy me further.

Inwardly though, it’s becoming more of a constant daily, hourly reminder that all is not well with me. While I try and only worry about things I can control, rather than things I can’t – this is for sure becoming more difficult with a poor prognosis and a generally uncertain future.

Still – as we all seem to say these days, it is what it is 😉

On the diagnostic front, there’s been a fair bit happening in these past couple of months or, but no firm decisions right now on the best way forward.

What we do know is that 2022 will see more treatments, just to relieve and hopefully slow the development of the current lung tumours and of course, any further spread to other organs.

And I’ve been a bit overwhelmed with the choices that might be coming my way.

It could be chemotherapy or immunotherapy or a combination of both or indeed, experimental trials.

I’ve started the pre-screening for a clinical trial involving a new type of vaccine combined with an immunotherapy drug. It sounds quite exciting, but of course there’s a few ‘buts’

It’s quite experimental, known as a ‘phase 2’ trial.
This means it’s got past a small sample of patients (generally with very advanced cancer) in a Phase 1 trial.

Phase 2 trials generally aim to find out:

  • if the new treatment works well enough to be tested in a larger phase 3 trial
  • which types of cancer the treatment works for
  • more about side effects and how to manage them
  • more about the best dose to give

This particular trial is being tested on around 190 volunteer patients in 10 countries.

It’s known as a ‘double-blind, randomised’ trial to test this new type of vaccine treatment combined with an immunotherapy drug that’s been used in the past for a similar type of cancer to mine.

The randomised bit is that 50% of the patients get the real vaccine and 50% get a placebo vaccine. All patients do get the immunotherapy drug though.

The double-blind bit is that neither the patient or the people delivering the treatment, know (or certainly won’t say) who is receiving the vaccine and who is receiving the placebo.

So all in all, this is really about the drug companies testing product combinations for possible future wide-scale treatments, using the latest ideas around. For the patient, it’s a gamble as to whether there’s any additional benefits – and by this, I mean survival time against more shall we say, the more conventional types of chemotherapy or immunotherapy.

Although, this trial might just be the ‘miracle cure’ that the world has been waiting for!

I’ll be discussing all my options during April with both the clinical trial team in Somerset and my own Dr Wozzer here in Gloucestershire. Pretty sure one way or the other, I’ll be having treatment before the summer.

Immunotherapy is definitely the hot subject in the oncology world right now. I’ll research and then write up some more on this, hopefully next week.

Until then – take care x

34-Calm before the storm

8 May 2022

It’s been a relatively hectic couple of weeks, and I’d been getting around to updating my blog, but well, I’ve been too busy enjoying myself.

We recently had a meetup of four generations of the Garber clan, from baby Miller (10 months) to Great Grams at four-score and and bit more 😉

Also, if I wasn’t feeling ill enough – I had the urge to go see a match at Old Trafford and my beloved team of mis-fits – Manchester United.

Brother Mike managed to get 3 tickets, so me, he and my lad Alex had a splendid boys-day (and night) of beers, burgers, footy and then more beers!

And this is because a couple of weeks ago I received my latest CT scan results, which like the curate’s egg, is partly okay and the other bit not so.

The good bit is Tom, Dick and Harry are just about still behaving themselves, in that since they had that good zapping with radiotherapy back in December – they’re still not yet back to their pre-treatment sizes.

The not so good is because the scan report states ‘there are multiple tiny nodules in the left lung which are suspicious’. Typical understatement – really meaning that it’s looking like the beginnings of spread to my other lung.

So that also meant re-discussing my treatment plans and a big decision that went with it.

In my last blog post, I was trying to choose between entering a trial program with some shiny new drugs to test on me (and others), or immunotherapy under the care of Dr Wozzer at my local oncology unit in Cheltenham.

But now, considering what appears to be the onset of further spread, chemotherapy will be the first-line drugs treatment. This in itself isn’t straightforward for me, because the ‘go-to’ treatment would have been Cisplatin, but there were (and still are) concerns that my kidneys would be damaged by that treatment.

So, quite fittingly for Wozzer– I’m having a cocktail of two chemo drugs: Carboplatin, which is less toxic than Cisplatin, hopefully with reduced side-effects and Fluorouracil (5-FU), which I think is going to do most of the heavy lifting in attacking the cancer cells.

If we remember back to a previous post when I touched on how cancer cells uncontrollably divide and create serious problems in the body, well, chemotherapy disrupts this cell-division and generally shrinks tumours or at least slows down their development.

Unfortunately, chemo drugs in general can’t just target cancerous cells. Other fast-dividing cells in the body, such as hair follicle cells (leading to hair thinning or loss), cells that line our stomach and bowels; (leading to sickness and diarrhoea); or blood cells (leading to tiredness and bleeding from almost anywhere) are also attacked by chemotherapy – so this is what causes the well-known side-effects that we see or hear about.

Of course, there’s a long, long list of side-effects and it appears that every single patient reacts differently. But it seems for my case that the three listed are the main ones to watch.

How they get the chemo drugs into me and for how long I’ll be on chemo? Well, that’s a longish answer and worthy of its own blog post.

Which is my way of saying I’ll do my best to write that up in a day or so! Until then, I’ll keep on with the beerotherapy 😊

35-Preparing for Chemotherapy

So, it was agreed that because of the tumour progression, the return of back pain caused by the tumours and the signs of spread to my other lung, that Chemotherapy would be better as a first-line treatment and likely to show faster-acting relief than immunotherapy. For now, at least.

Believe it or not, this isn’t as scientific as we’d think. The decision is down to each individual patient in how they feel, disease progression and to a degree their own choice – after discussion all the options with the professionals.

Once the decision was made, as ever here in Gloucestershire – the NHS were very quick to swing into action and book all my pre-treatment and prep appointments. This included a thorough Q&A session with a chemotherapy nurse, blood tests and the insertion of a PICC line (peripherally inserted central catheter)

Image courtesy of Macmillan Cancer Support

Because I’ll have a number of chemo infusions, it’s better to have a semi-permanent very thin tube inserted into my upper arm, and around 500mm through my veins to a position near my heart. Once in it can stay in for a few months and receive medications and also be used for blood sampling etc – all without the use of needles. Perfect for me!

I had to admit to a bit of trepidation as I was told this is done with a local anaesthetic and awake, while watching progress of the tube through my body on an ultrasound scan monitor.

Pretty amazing is all I can say! The PICC team were very efficient and the whole procedure was over in around 25 minutes. Apart from a slight feel as the Lidocaine anaesthetic was injected, I never experienced any pain.

Big thanks to Lauren for a very professional, calming, and quick procedure x

Well, I’m all set to begin the first of my planned 18 weeks of chemotherapy. This is administered in 6 x three-week ‘cycles’.

Each cycle will comprise a one-time infusion of Carboplatin, followed by four days of Fluoroacil 5FU chemo at home, which is delivered by a small pump (which I must wear 24/7), at a rate of 2ml/hour for 96 hours.

This pump has a tube which is connected to my PICC line and I have to eat, sleep and shower (somehow) with this whole contraption in place. At the end of each cycle week – a district nurse will disconnect the pump, flush out my PICC line and re-dress the line entry point in my arm.

Then it all starts again three weeks later!

36 – First Chemotherapy Cycle

I’ve just completed / survived my first week on the chemo cocktail, so perhaps a good time to reflect on how things have played out so far.

Starting a new line of cancer treatment gives rise to trepidation and uncertainty – it’s a fear of the unknown. Doesn’t matter how much I research the side-effects, it’s clear that even identical treatments on patients, generally produce widely different outcomes. So just got to deal with it as it comes, I suppose.

Monday 9th May was a lovely sunny morning as I walked into Cheltenham Oncology Centre. Very much the same as when I started radiotherapy almost exactly 2 years previously, as a cancer ‘newbie’.

But now the centre is very familiar –many of the staff know and greet me – but in that special way that they have of being welcoming, although not particularly happy to see me in there again.

I’m an hour early for my appointment in the chemo ward. No point to sit waiting at home, I’d rather wait in the unit and hope they can get me in early. Which they do.

A hospital volunteer greets me and leads me to the chemo unit and my ‘reserved’ chair. There are six chairs in my section and most are occupied.

My allocated nurse – Kat introduces herself and goes through the double (and it seems triple) checks just so there’s no mix-up in treatments to the wrong patient.

I’ve really dropped lucky with Kat. She’s super-efficient, but also wonderfully funny – and I can tell by her interactions with other patients, this is not an act. I think it’s marvellous how nurses can work on this type of unit, knowing what they know – and yet remain remarkably upbeat to ensure the patients have a relaxed time there.

Kat sees my PICC line ‘ooh – lovely’ she says. ‘I can do all sorts with this.

Lovely for me too, I have hopeless veins for needles and cannulas.

Kat hooks me up to a saline drip – get some fluid in me to begin.

This is followed up by a good shot of Dexamethasone, which is a steroid. It’s used for many treatments, but in my case to help the body transition with the chemotherapy drugs. After that I get a dose of an anti-sickness medication and then finally hooked up to the Carboplatin chemo. This infusion takes around an hour.

Kat puts it all together and places the Infusor into a small ‘bum bag’, which attaches to my belt. That’s me and the Infusor ‘married’ for a few days. I can’t disconnect it and must get used to it being there – including while sleeping, without of course, allowing the line to become tangled or disconnected.

It’s pretty amazing how we adapt to new things. In 60 odd years, I’ve never slept on my back – but immediately I find that wedging the Infuser behind my pillows, gives me enough play in the line that I can (almost) sleep comfortably.

Showering isn’t easy – I have a waterproof sleeve to cover the PICC line and then protect the Infuser pump by placing it in a plastic bag and then tied to my wrist. Kinda works though!

And that’s it really – my first week on chemo hasn’t been so bad, all things considered.

I’m feeling fatigue – but that’s easily overcome by having a lay down. I’m well experienced in this anyway. Hopefully it’ll stay this way and we’ll see how my second cycle goes in early June.

In the meantime, I'll be thinking how to best re-brand the 5FU Fluorouracil, to someing more catchy and memorable.

How about FU2 chemo?

😉

Take care all x