Metastatic cancer

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.

But – there’s also been a bright side to always look at 😉

I got to thinking about being known as ‘a man always with a plan’. Sure, for the past 10 years I’ve been a travel consultant, planning trips and tours for visitors to Cambodia, Vietnam, and Laos. I’m so lucky really. Travel has been such a passion for me – and it was a dream to live in Cambodia while extensively traveling those countries - and get paid to do it.

But it started way before that – my very first time on a plane was a Laker Airways DC10 ‘Skytrain’ from London to New York, with my parents and brothers around 1974 or 1975. I was about 18 years old.

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.

What a blast we had. Among lots of beers, tapas and live music gigs, the UEFA Euro championships were on – Spain won the tournament, beating Germany 1-0 and the whole country – football mad at the best of times, went absolutely crazy! (that is NOT me in the picture!)

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! 😊

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

23 Sept 2021

I have to say that since my last blog post back in July – I’ve had a quite enjoyable summer!

I did receive my old-age pensioner bus pass and as if to prove I’m more than qualified for one, I promptly forgot and lost it somewhere – and never even used the dammed thing.

I think the gods are telling me that even though I’ve reached the ‘age’ – I really shouldn’t have one!

So I reckon I’ll remain bus pass-less for the time being.

My 66th birthday on July 22nd was spent in London, on a glorious sunny day.

It started as all great days should, with an amazingly good Bloody Mary for breakfast at Dishoom in Covent Garden. Dishoom is a very stylish Bombay-styled Indian restaurant, with a twist. It serves both fusion and traditional breakfasts - as well as all-day dining.

This was followed by some splendid wine and tapas with daughter Rachel at a riverside eatery by Battersea Power Station (what a change from my days when I lived in London in the 60’s and 70’s).

Finishing up with a night-time Thanes Clipper boat ride through the west end; city and docklands to my hotel that evening – it was a truly magnificent day.

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 (24th 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

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