Big Wozzer – Page 3 – Wozzers Journey with Cancer

34-Calm before the storm

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 😊

33 – Testing, testing…

31^st 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

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

31-Big balls are not aways desirable

1^st 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

30-What’s best for cancer recovery – Bloody Mary’s or Morphine?

Remembering back to last year’s birthday outing, when I fell off a bike during a family bicycle ride, being full of morphine at that time didn’t help, although to be fair, I didn’t feel much pain. This year’s dulling of pain by vodka and tomato juice was quite tasty, but sometimes I do miss morphine for the high 😉

Also remembering back to September of last year, I thoroughly enjoyed the all-day Zoom video calls from friends and family around the world in aid of the Macmillan Cancer charity and its ‘World’s Biggest Coffee morning’ fundraiser. It was in the middle of Covid lockdowns and restrictions, so having people for coffee and baking cakes was out of the question.

Honestly this year, the thought of me baking cakes is equally out of the question!

But taking over the mantle for 2021 my is my lovely daughter Verity, who is opening her house tomorrow morning (24^th September) and baking cakes to raise funds. This is her link – not sure if she can post cakes out, but feel free to ask!

As for me – progress continues with my throat and I’m eating much better now. Mouth isn’t so dry these days and that helps enormously.

Although to be fair, even stage 3 throat cancer was unlikely to stop me eating and talking for too long!

Right now though, there’s no new news on my secondary cancer, but I have a further CAT scan and meeting with the other, proper Dr Wozzer in a few weeks’ time, so I’ll update my blog following that.

In the meantime, wherever you are in the world – do take good care of yourselves in these uncertain times. x

29-No news from an old git

21 July 2021

Well, when I say 'no news' I really mean not so much new news...

On the cancer front, I had a further CT scan in May and a follow-up meeting with my Oncologist, the ever-cool Dr Grant. He's pleased so far, in that the original cancer site in my throat appears clear.

There is some tumour activity in my right lung, but not enough to warrant treatment - yet. I am however noticing more of a shortage of breath and this has slowed me considerably when out for a walk. I’ve been advised to flag this up if it worsens.

He's pretty sure I will commence most likely Chemotherapy in the coming months, and I'll be in for another scan and decision around September time. But until then I'll make the most of the summer - as far as I'm able.

For those that have / had similar head and neck cancer treatment to mine, I can report that some 13 months post radiotherapy, things are much improved, but still with collateral damage here and there. Eating many foods still presents swallowing problems because of a lack of saliva.

Nerve damage (from the radiotherapy) has left me with a numb right-ear, no pain – just an annoyance all the time. Mind you some would say my whole head has been numb for many years…

And my sense of taste isn’t really improving.

I’d say I have 20-40% sense of actual taste and this is mostly from my taste buds. These receptors give us the experience of sweet, salty, sour and bitter. And I can tell the difference in these.

But – and not many people know this – when we chew our food, the aromas are released and travel via the back of the throat, so it’s actually our nose that sends the ‘smell’ of food to our brain. And this is where I’m still struggling and not convinced that it’ll improve significantly.

But even with all of that – and I’m not really complaining, because in the big scheme of cancer diagnosis I keep positive thoughts and enjoy every day!

28-Recollections of a first year with cancer – and more!

31 March 2021

Well, what a year it’s been for me since last March.

Actually, I guess the same can be said for everyone and there must be unthinkable grief for so many families who have lost loved ones through the pandemic.

It's a year to this day that I popped into my local hospital to ask if someone could have a look at my sore throat.

Sure, my year has been life-changing, but I’m still here. Over 120,000 went into hospital in the UK with maybe little more than a cough and never came out.

So yes, even with all my ills, I count myself as one of the lucky ones. I say that because the treatment and medications I’ve been on notwithstanding, I’m still here to tell the tale and enjoy life as it is.

Looking back over the past 12 months (and it’s hard to believe it’s just on a year), I can say I’ve had more than my fair share of ups and downs.

From the first examination of my throat and waiting for confirmation of cancer; through the prepping for and subsequent tough radiotherapy treatment; to the long recovery from that treatment (still ongoing) and of course the amazing support from not only family, but also friends and colleagues around the world, and especially so for all the teams that have taken care of me at Gloucester Royal Hospital and the Oncology unit in Cheltenham – again I thank you all and appreciate it - more than I can say.

Paradoxically, my throat cancer seems to be clear. Technically it's 5 years of clear scans required to make that statement - but it doesn't feel too bad right now. Speaking; eating and drinking is improving in small, but positive steps. Dry mouth will be an ongoing issue because of treatment damage to my saliva glands.

And I have this horrible-looking lump under my chin, which is Lymphedema. I did have cancer in lymph nodes in my throat and these were also treated by radiotherapy. I think 'treated' in this case means irreparably damaged.

It’s more of a cosmetic issue than medically dangerous. Massaging the swelling does reduce it for a while, but the fluid build-up always returns. But believe me, at my age – I need all the cosmetic help possible 😉

This leaves me very much working through the mental side of coping with incurable tumours and preparing for the next cycles of chemo or immunotherapy or whatever. I’m trying to readjust to dealing with scan results in 3 months chunks.

So currently there's a further full scan due in May and then another discussion with Dr Grant to consider the treatment options and prognosis.

Mind you, I'm planning for quite a few 3 months chunks yet!

Although for me – the man who almost always has a plan – honestly, it’s a bit of a bummer.

If ever there was one man to thank for introducing long-haul travel to the masses, it must be Sir Freddie Laker.

Since then, I’ve always been planning a trip somewhere for someone – family, friends, or workmates. Whether to Devon or Florida with family, Nice or Amsterdam with workmates and friends, or my own adventures in many countries.

So much so, some had given me the moniker ‘Woz Tours’.

I fondly remember in early 2008 planning a side-trip for a couple of Aussies – Wendy and Phil, who I hadn’t actually met – we did everything on Skype and email between Queensland (where they lived) and Spain, where I was living at the time.

But when we did meet at Malaga Airport – oh my, it was an unforgettable time – with a suitably crazy story, which I recounted from my first attempt at writing a blog back then and which amazingly is still live online.

https://woz.typepad.com/wozzer/2008/07/6-spanish-authorities-attempt-to-ground-woz-tours.html

In a nutshell, I was already booked to stay with Wendy and Phil in Proserpine, Queensland in late 2008.

I’d already joined the Couchsurfing community. It was like a forerunner of AirB&B, but with a much more social emphasis. No money changed hands – one could be hosted for free and indeed was expected to host others. It was fantastic back in the day.

Wendy and Phil were ‘Couchsurfing hosts’, who were traveling to Europe in mid-2008. So I invited them to stay with me for a few days on the Costa del Sol, which was prior to me staying with them.

They, like so many other people that I’ve met over the years left part of their hearts in mine. Wendy unfortunately succumbed to cancer some years ago, but she and Phil still bring a wide smile to my face whenever I think of them.

Which is often.

But back to today – with it seems the world waiting to travel, I for sure am already planning my next trip to S E Asia. I'm just waiting for the politicians and scientists to let me fly again.

I’m ready for some Mee Cha (fried noodles) in Cambodia and a good many glasses of Bia 333 in Saigon.

Both are easy on the throat – strictly for medicinal purposes of course! 😊

27-Learning new words about Cancer

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.

26-What a year that was

Friday 11th December 2020

Today is exactly 6 months since I finished radiotherapy on Friday 12th June and ‘rang that bell’. So I thought a good day to reflect back over this mad year, which is both forgettable and definitely unforgettable…

And what a year indeed.

It started for me quite normally – as with most of us I guess. January started good for bookings in the travel business and then later that month, news of the coronavirus was starting to appear. I spent most of February cancelling the majority of our guest’s bookings. And then from March on – along with everyone else in the world, trying to make sense of things.

Reading back through my blog, it was the last day of March – while the UK was in ‘Lockdown 1’ that I strolled into Gloucester Royal Hospital A&E with my (now infamous) niggling sore throat.

And here I am now.

Larry the Lump has gone – beaten and K O'd in the final round by Radical Radiotherapy, although he gave me quite a hammering along the way. But I had an amazing team in my corner - so I was more than confident all along 🙂

My recovery from the radiotherapy is still going in the right direction. But fatigue; lacking a sense of taste and issues swallowing food are constant reminders of the effects of the cancer and treatment. As is the slightly numb left ear which has some nerve damage, also as a result of the radiotherapy.

But all in all – I’m told by the medics I’m in better shape than many after just six months post-treatment. Of course, the secondary tumors that were identified, are a constant reminder that there’s still a way to go. I’ll deal with them next year and of course, it will all be dependent on what further scans show.

It's not all bad though...

I’ve lost a lot of weight – some 35kg / 77lb or 5.5 stones. In fairness it was needed because I did need to shed some blubber, but I’ve gotta say – it’s a tough diet and is not recommended at all as an aid for weight-loss 😉

Still, I’m down a good three dress sizes and getting into clothes I’ve had (literally) hanging around since 2005. They’re almost back in fashion too!

Also in September was the ‘worldwide coffee morning’ that I held on Zoom, raising funds for Macmillan Cancer Charity. I have such fond memories of that day – meeting up on video with family and friends all around the globe.

Also – avid readers of this blog may remember there was a prize winner drawn from all the people that were on zoom with me that day – and the winner is a good mate of mine - Phil Butterworth, who I’ve known since my early days in Siem Reap, Cambodia, around 10 years ago.

25-A Quickie Divorce

18 November 2020

Well, I suppose I did know this day was coming – but didn’t know exactly when. But I can now reveal that Miss Peggy the PEG and Big Wozzer were today divorced at Cheltenham General Hospital. The separation ceremony was performed brilliantly by the ever lovely and professional Vicky, my Macmillan Specialist Nurse.

It was an emotional morning. Miss Peggy has been with me since mid-April, some 7 months and we’ve been very attached – quite literally. She always knew the way to my heart was through my stomach.

During my darkest days post-radiotherapy during June and July, she kept me alive as this was the only way I could take any water, drugs, or nutrition.

Sure, in more recent weeks my dependence on tube-feeding has diminished, while I attempt to improve eating and drinking by mouth. That’s not perfect by any means and I still have to be quite careful in my choice of food and drinks.

When I say choice of food I, along with most that are recovering from throat cancers, find moist and soft foods are easier to swallow. Saying that, almost every bit of food must be accompanied by a sip of water or whatever, because the lack of saliva makes things difficult -to say the least. It is improving by fractions each week, but could be many months or years, or never - to be back as before. A small price to pay in the big picture – but also a constant reminder of my condition.

Anyway, I don’t have Miss Peggy to fall back on anymore, so it has to be onward and upwards with solids now!

And just for completeness – for those that want to know, the PEG removal was fortunately very quick and painless – except for a couple of seconds as the extraction through my stomach wall and skin, caused me to wince.

The PEG tube has been held in place by a ‘balloon’ or ‘mushroom catheter’ and an internal ‘retaining disc’ which stops it being pulled through.

There’s a very thin wire inside the feeding tube and for the removal procedure, the wire is pushed into the balloon, which deflates it and then it just requires a sharp tug to pull the tube to the outside – the flexible retaining disc being the bit that causes the sharp, but momentary pain.

So that’s about all to report for the moment. My secondary tumors are not causing me any pain or distress – except for knowing they are there, so to speak.

As written previously, I’ll know more hopefully sometime in January when I expect to have another scan and results. In between of that, I’ll have a meeting with my care team in December and will write a quick update post in around a month from now.

Until then, thanks for following me on here or Facebook and for your kind notes and comments. I do really appreciate it

Woz xx