Please join us to celebrate Wozzer’s life and to share anecdotes and stories from his rich and varied life, spanning across nearly seven decades which saw him travel all over the world, making many friends along the way.
A funeral service will be held at 12:30pm (BST) on Friday, 2nd of May at Gloucester Crematorium. Colourful attire is encourage – he did not want this to be a moody and sombre affair! The address is as follows:
Gloucester Cemeteries & Crematorium, Field Cottage, Coney Hill Rd, Gloucester, GL4 4PA
This will be a 45 minute service. For those that cannot attend in person, there will be a live stream of the service with the footage being available for 28 days after. The details of the live stream are as follows:
After the funeral service, the wake will be held from 1:45pm (BST) at Brewhouse & Kitchen at Gloucester Quays. The address is as follows:
Brewhouse & Kitchen, Unit R1, Gloucester Quays, Designer Outlet, St Ann Way, Gloucester, GL1 5SH
There will be welcome drinks provided for a toast and buffet food will be available from approx. 2.30pm. For parking, the best options are either at Southgate Moorings Gloucester Docks car park (GL1 2DB) or the main multi-storey at Gloucester Quays car park (GL2 5RG).
The family would like to encourage donations to either Macmillan or to Sue Ryder Hospice. During Warren’s journey with cancer, Macmillan were invaluable with their support and guidance through this difficult time. Towards the final stages of Warren’s life, the carers from Sue Ryder offered incredible warmth and compassion and the family are eternally grateful for their help.
We have set up a JustGiving link for each charity, all donations welcome and appreciated.
If you would like to contact the family, please reach out to either Warren’s daughter Rachel (rachelgarber28@gmail.com) or his son Alex (alexgarber@hotmail.co.uk).
We hope you are able to join us in celebrating Wozzer’s life. Thank you.
Written on behalf of Warren Garber by his son, Alex.
It’s been a few weeks since my last blog post, and to say it’s been eventful would be a huge understatement!
On Sunday 6th of April, at around 5:00am, I took my final breath and came to rest peacefully in my sleep, surrounded by loved ones. When you’re up against cancer, you’re always the underdog. I managed to take it to extra time and penalties, but unfortunately I came up short (even I’m no Cantona).
It’s been an incredibly challenging 5 years – 1,834 days in fact since my very first post, to the one you are reading right now, but throughout this time I have experienced the most wonderful side of humanity and felt so much love and kindness, including from all of you following this blog. More on that later.
I mentioned in my last post that I was facing the reality of coming to the end of the road – and what a road it’s been by the way! I was very much in the ‘end of life’ phase of this illness, having just undergone a small dose of radiotherapy in an attempt to alleviate some of the excruciating pain in my ribs due to the tumour growth. In reality, this was just a sticking plaster and I was still dependent on morphine to supress the pain, making me very drowsy and not such great company (on the basis I fell asleep without warning!).
I was also heavily reliant on supplementary oxygen – I was regularly monitoring my blood oxygen levels and, while sat down and hooked up to my oxygen concentrator, I had reasonably good levels in the mid-to-high nineties range, however any physical exertion (using the bathroom, showering etc) would see those levels drop significantly causing me to feel faint.
On Sunday 23rdof March, I took a bit of a turn for the worse and was rushed to A&E. As I had long suspected, it wasn’t necessarily the cancer that would kill me but rather a secondary illness/infection. I was diagnosed with pneumonia (at least it was a biggie!), rendering my condition, in the words of the A&E staff, as “not survivable”. Naturally this caused quite an emotional response between myself and Samros, and we recognised I was approaching the end of that road at greater speed than we would’ve liked. As per my RESPECT form, I left the hospital so that I could be at home for my final moments.
Family scrambled to Gloucester from London, Cheshire and Yorkshire upon hearing the news. The mood in the flat was sombre as each family member expressed their thoughts and prayers to me, as I lay there drifting in and out of consciousness, and to Samros and Nisa as well who have been with me every step of the way. Reluctantly, as the night went on, people left to check into their hastily-booked hotel rooms, expecting to wake up to the news no one wanted to hear…
…sorry to disappoint, but I’m not going down without a fight! The morning brought a stark contrast to the events from the night before. Through a combination of pain relief, supplemental oxygen, antibiotics, family support and sheer bloody-mindedness, I made it through this scare (and believe me, it WAS a scare) and felt reasonably okay, to the point where my brothers Mick and Gary were so satisfied with my condition they engaged in some much-needed TLC on the sofa.
Wozzer making sure his brothers are looked after
Whilst I temporarily pulled through, this episode marked quite a significant milestone in the progress of my illness and unfortunately started the real decline in my health which, in just two weeks, would see me finally succumb to this disease.
It was at this stage I was properly introduced to the district nursing team. As I became less mobile and even more dependent on pain relief, a hospital bed was brought into the flat, a much more comfortable upgrade to the recliner sofa which I usually rested on. Additionally, a syringe driver was introduced to deliver subcutaneous pain relief at a controlled rate, over a rolling period of 24 hours, and a cannula was added to my arm for more acute doses of medication to be administered as and when they were needed.
A syringe driver or syringe pump. Credit: West Midlands Palliative Care
I’ve always been partial to a cocktail or two, but I’m not too sure I’d recommend the ones I was taking. In the syringe driver, a hefty dose of morphine (120mg) mixed with a smaller amount of midazolam (30mg to start, later increasing to 50mg). Where morphine mostly addresses the pain, the midazolam helps as a relaxant. Together, they combine to help with my breathing and encourage me to take longer, deeper breaths. In the cannula, based on how agitated and uncomfortable I was, one of the kind nurses would administer a 10mg shot of morphine, and/or a 2.5mg midazolam chaser (later increasing to 7.5mg), sometimes even washed down with some glycopyrronium bromide to help with the secretions that were building up on my chest due in part to the pneumonia. On top of all this, during periods of consciousness, oramporh (liquid morphine) was encouraged to be taken as and when needed.
The healthcare team now entered a game of cat and mouse with my illness, constantly chasing the symptoms. There would be periods where the drug concoction was working, and I could go for 10+ hours without stirring. On the other hand, I might stir after only a couple of hours, requiring another visit from the nursing team to administer more injections as the pain/discomfort had started to outpace the relief I was getting from the syringe driver.
This brings me on to my decision to have my end of life care at home. Samros and I have been very clear with this wish, however there are a few lessons learned that I feel compelled to share. With this being a highly reactive phase of my illness, I hadn’t fully considered the reality of needing to call the district nursing team every time I had a flare up in pain or agitation. A call is made to the handler, who passes this on to the nursing team who then call back and arrange to visit. Unfortunately, this could take up to an hour, which felt like a lifetime for my family who where there witnessing my discomfort and watching the clock agonisingly tick by until one of the lovely nurses would come and administer some more relief.
While it would’ve been too taxing to move into a hospice at this stage, the family took the decision to engage the incredible staff at the Sue Ryder hospice. We utilised the hospice at home service, with 2-3 visits a day from nurses to help keep me comfortable but, more importantly, take some of the burden of care off my amazing wife Samros and the rest of the family.
The doses of medication were increasing over time and new drugs were introduced in an attempt to stay on top of the symptoms. Paracoxib and levomepromazine were trialled but at this stage the main priority was being comfortable, and the combination of morphine and midazolam seemed to be the most effective cocktail. Fortunately at Wozzer’s, every hour is happy hour!
Earlier in this post I talked about the wonderful side of humanity. The kindness and care shown by the district nursing team (Rachel, Katy, Jasmine and Beth deserve a special shoutout) and the Sue Ryder nurses (I’m convinced Cathy, Clare and Siobhan are angels) was absolutely incredible and as always I am left speechless by the compassion these wonderful people have in such a challenging job. Finally, I can’t leave out my palliative care nurse, Vicky Mills, who was so helpful in advising and guiding me and the family through one of the trickiest and most upsetting moments we’ll ever face.
I simply must also highlight my family and friends during these latter stages as well. Samros, my fantastic wife, and Nisa, our daughter, have arguably had the biggest burden in terms of looking after me and I will be eternally grateful to how they have helped spur me on over the past five years.
The day of Samros & Nisa’s citizenship ceromony, 15th May 2024
My daughter Verity camped out in our flat from April 1st, and over the next few days the rest of my family scrambled once again to be at my side – Mum, my brothers and their wives, my children and their partners, one of my nephews and even my cousin and his wife. Every nurse that visited made a point of commenting at how many people there were by my side, and I felt incredibly lucky knowing that others in my situation were not so blessed to have such a loving family.
A family get together at the Newbold Comyn Arms in Leamington Spa, 23rd April 2022
As you’ll be well aware, I’ve always enjoyed a “project” – and the end of my life was executed just I had planned. My final wishes were to be at home, and to go peacefully and calmly, surrounded by loved ones. I’m pleased to say that (despite the ups and downs of the past two weeks) this is exactly what happened. As an added bonus, I was even spared the boring 0-0 in the Manchester derby! And when in full planning mode, those that know me will know that Wozzer doesn’t just stop there – I managed to prepare a number of documents/ideas to help make the coming days/weeks more manageable and stress-free for my loved ones and to give them a head start on funeral arrangements, more on that to follow…
And with that, my battle with cancer has reached it’s conclusion. From my initial diagnosis in April 2020 to my oncologist describing me as “more art than science” as I continued to defy the odds, I couldn’t in my wildest dreams have imagined getting another five years to treasure with loved ones. Just shy of my 70th birthday, yes it’s a life cut short, but I am blessed to say I have led a very rich and varied life, which is dominated by all the incredible people I have met on the way (friends all over the world – you know who you are). Thank you all for supporting me along this journey – this blog has been a great outlet and helped connect me to others in similar tragic positions. I’ve loved all of the comments and encourage you to post more anecdotes and memories of our interactions over the past years.
Well. In what’s coming up to five years living with cancer, undergoing 44 sessions of radiotherapy; 18 weeks of chemotherapy; 16 weeks of immunotherapy; a clinical trial with two further shots of immunotherapy and two shots of an experimental vaccine, the actuality is I’m coming to the end of the road.
Or should that be my road?
In any case, I’ve just had my final treatment.
It was just a small dose (is there such a thing?) of radiotherapy to help alleviate some of the constant, excruciating pain I’m experiencing from the cancer attack on my ribs.
The morphine has been doing a good job in dulling the pain, but there are now more than a few times each day when even that ain’t really hitting the spot.
So, the end of my road is up ahead. Not immediately, but the prognosis is poor and expected to be measured in months.
Of course, avid readers of my blog will know this isn’t the first time I’ve been in this situation of ‘a few more months’ – and while it’s been hard to take in – there’s always been another treatment drug to help. But no more.
Now begins the tough but inevitable choices to make for ‘end of life’ planning. As ever with my local NHS, Dr Grant is still taking care of the medical side – albeit with less to do now, but my palliative care team, led by the lovely Vicki Mills is now more involved in the detail over the next few months – hopefully longer.
I say hopefully longer, because I keep chalking off memorable dates as I pass them. Seeing 2024 out wasn’t expected, but I did it. – Nor was celebrating our 11th wedding anniversary coming in mid-March. I’ll make that no problem.
April sees Nisa and Samros’ birthdays and the birth of my next grandchild – my daughter Rachel is expecting mid-April – I’ll be fine!
Then in July is my 70th – and I’m also planning for that.
We’ll see how it goes after – just wondering how much of a milestone until Manchester United win the Champions League 😉
Keeping me going is without doubt, is family, friends and travel. Right now, it’s a blessing – I’m seeing my family more than ever before – mostly they come to Gloucester to visit me.
Samros and Nisa especially are a massive support for me, both physically and especially mentally – although Samros is also suffering the effects of my situation and of course my pain and prognosis.
And who would be without friends? For me, I’m lucky in having some good friends that also make the effort to come visit me – although I can still travel, I’m ever so appreciative of catching-up here locally.
Woz with his ever-young mum – Frances
Because of my lung problems, it’s far too much of a faff to fly these days, so I limit myself to overland trips by train or road. A few months ago, I sorted some ‘Interrail’ 1st class passes and us three, along with my mum (bless her) and a very good mate Paul, who joined us – to visit Christmas markets in Frankfurt and Aachen.
We did it all by pretty swish trains including Eurostar, staying just a couple nights in Frankfurt and one night in Aachen.
Well, I have to say – those Germans. Boy, do they like a market! Nothing to do with shopping, just eating sausages in bread rolls and the obligatory Gluhwein (warm mulled wine). Right up my strasse 🙂
We had another couple of friends travelled to meet us in Frankfurt. I’ve known Bob some twenty years since my first time living in Spain. Bob and his wife Claudia now live in Germany, but also made the time to travel and see us in Frankfurt.
Woz, Mum, Paul, Samros, Bob, Claudia and Nisa in Frankfurt
A great trip with lots of lovely memories and well recommended
Speaking of which – a year or so ago – one of my grammar school mates – Jim Earls, found me on Facebook. We’ve chatted a few times, but he found a few others from our year, so arranged a meet-up at London’s Liverpool Street Station.
Juts the four of us at lunchtime, with a few beers (including a couple for me) and a lot of reminiscing about this and that.
Jim Earls, Woz, Mark Briers and (half of) Tommy Bugg. At Hamilton Hall, Liverpool Street Station.
I suppose anyone looking at us would have thought they were filming another episode of ‘Last of the Summer Wine’ – a few old farts drinking and remembering the good old days.
Oh dear – just looking back, it was March when I last wrote a post on here. One or two people have dropped me a note, I guess to check I’m still alive (which I am) – because of my silence.
And yes, I really do need to update everyone with what’s been happening since last time. Although in some respects, not much happening – but in other ways, quite a bit…
In terms of CT scans, I had these in April, July and September of this year. Nothing remarkable in terms of change in the April and July ones.
Looking back to last year as well, I had eight CT scans in total at either The Royal Marsden in London or locally here in Gloucestershire. None of these scans showed any measurable growth of the tumours and all of my medics agree on one thing…
They’re not quite sure why I’m still alive, but of course we all take it as an amazing result just the same!
As Professor Harrington told me in April 2024, ‘Warren, I consider you’re now more art than science’. He said this because it’s difficult to explain exactly what has interrupted the growth of said tumours.
Seems the best explanation is that while all the SACT treatments I’ve had (more on SACT soon) have not performed in terms of SHRINKING tumours, the tumours haven’t grown either – just remained stable in terms of growth.
So that’s been good news and it’s allowed me to live a fairly stable summer period. Albeit, I still have breathing issues and have to use external oxygen to keep me on the go.
Oh yes – SACT. Seems there’s a new acronym that’s crept in to the world of oncology. It stands for Systemic Anti-Cancer Treatment.
Systemic in this case means using Chemotherapy or Immunotherapy treatments, which of course enter the general bloodstream and distribute through the whole body.
This is opposed to the new and exciting developments in anti-cancer vaccines, which can be targeted to a specific tumour. Most new clinical trials currently starting – and for the foreseeable, will be based around vaccines, with and without immunotherapy I suppose.
Unfortunately, in my case, because of the issue I had with immunotherapy drugs last year, it precludes me from any further trials of this type.
So with no treatment planned, the summer of 2024 has been quite good to me. I’ve had a couple of trips abroad – overland by train, because flying takes too much to arrange because of my oxygen requirement.
I won’t go into all of the details, but each airline has its own policy regarding passengers requiring additional oxygen – and they differ widely.
But in every case – a Fit-to-Fly certificate will be required. This is the case for pretty much anyone requiring medical assistance to fly – even say a broken leg has to have a certificate signed off by a doctor.
For us external-oxygen reliant people, obtaining a Fit-to-Fly certificate begins at a hospital
with specialist equipment that can perform a Hypoxic Challenge Test. This is a procedure in a chamber or similar that can simulate the reduced oxygen levels that are found in an airline cabin, which are around 17% lower than at normal ‘land’ levels.
It’s not generally a ‘pass or fail’ test, more that it will indicate the type of equipment and oxygen requirement of the patient / passenger to be able to fly safely.
The test itself is chargeable at around £300 and the result would most likely have additional costs associated with the airlines. In-cabin oxygen is, believe it or not – not widely available for medical needs. And I haven’t even started on the cost of the equipment I’d need to take!
This all actually worked out better for me because I decided to travel overland by train, using Interrail passes. I did two trips, one with mates over a week in April and as it was so good, we did another as a family of the 3 of us in July. Completely by train we travelled in a couple of weeks to Bruges, Cologne, Berlin, Krakow, Prague and then finishing in Paris, before the Eurostar back to the UK. Such a wonderful and memorable trip.
The three of us at The Old Market, Krakow, Poland
I should say my consultants did add that as they’re not quite sure of my prognosis in terms of longevity – that I should get out and enjoy myself whenever I can. Of course, I never need telling twice to enjoy myself.
So to add to the train adventure – me, Samros, Nisa, my kids (Rachel, Verity and Alex are kids?) husbands and grandchildren, all descended on Center Parcs Sherwood Forest in September for a long weekend of playing, relaxation and the most precious family time together.
Wozzers tribe at Center Parcs, Sherwood Forest
So, all in all a lovely summer – but all the while I’m wondering if it’s my last.
There’s no getting away from my condition and it really is quite miraculous that I’ve had four and a half years of a condition that has, on average, a survival time of perhaps two years,
Sure – the near 40 radiotherapy sessions, 18 weeks of chemotherapy, 6 cycles of immunotherapy, a clinical study, holistic care, support by family and friends including of course my amazing wife and in maybe some small way, my positive attitude has allowed me carry on regardless of cancer.
But – and I have to say this – my body is beginning to tell me differently. And so are the medics.
I’m more closely involved with my Palliative Care team and while I’ve written before about the wider meaning of ‘Palliative Care’ – this is now including some shall we say ‘end of life planning’.
Nope, it’s not going to happen very soon (I hope), but a number of factors are coming into play that are all pointing towards a more difficult period ahead of me.
It’s those bloody tumours (no surprise there).
I’m lucky (I guess) they’re still in the one location of my right lung, but they’re now becoming more active. My most recent CT scan in September 2024 is showing tumour growth. That didn’t surprise me at all, because my breathing and back pain are telling me that.
Because the tumour growth is pressing on my windpipe and causing restriction, (for a simple explanation) and this is seriously affecting my breathing and the capacity to breathe properly. I have around half the breathing capacity of a normal adult of my age.
This is why I have to rely on external oxygen therapy whenever I’m active.
Logic says that the more the breathing is restricted by the tumours – eventually one day I just won’t be able to breathe. And from what I’ve heard over the years, here and there – running out of breath is not a happy event 😉
And if that’s not enough, the tumours are also getting to my rib-cage.
Two ribs – posterior 4 and 5 are being attacked (eaten) by the cancer. I suppose eating ribs is a happy event for many of us – preferably smothered in BBQ sauce – but this type is definitely not happy for me.
The ribs are to all intents and purposes broken or fractured.
The radiologists report from the CT scan describes ‘New destruction of the medial right 4th and 5th ribs’.
So I understand this to be not in the general sense of broken ribs like by an accident or impact, but more by attrition over the past few months.
This is significant, because it appears to have happened only since the July 2024 CT which didn’t show any damage and the September CT that has reported this.
Again, I’m not surprised. My body has been telling me by pain that something is amiss. And my back pain has worsened significantly these past few months.
As written before, I’ve been on Morphine for quite some time now and it’s interesting to see the correlation between dose and pain.
To put it in perspective, earlier this year I was taking 20mg of Morphine per day. This has been monitored by my Palliative Care team each month – and I’m now on 120mg (and sometimes plus) per day.
I dread to think how I’d feel without Morphine – I’m just happy to be addicted!
And on that happy thought, I’ll sign off for now – but will promise to write another post soon – if only to let everyone that I’m still around 😊
Wow! This time it’s been three months since my last blog post – and the main reason is…
No excuse really!
It’s just coming on to 4 years since my initial cancer diagnosis, back in those crazy days of April 2020, when the Covid pandemic was just unfolding.
As a close family, we’ve been through a fair share of ups and downs. I’ve surpassed most prognoses, which in fairness are at best an assessment on the success(es) of treatment(s) and what generally happens to patients of similar state of health.
It was nearly 2 years ago that things weren’t looking so good and this was the first time Samros and me were introduced to another of the NHS protocols that we don’t know about – until we need to know about them. There we were sitting with my GP in her surgery in mid-2022, discussing end-of-life (EOL) care. There were options open to us about the how, what and where things should happen.
I won’t go into the fine details, but one thing that did happen as part of the protocol is to issue me with a box of EOL drugs, to keep at home and that remains sealed until the medics need to use them. The NHS euphemistically calls it a ‘Just in Case’ box.
So you might be able to imagine our joy when I returned the box to the pharmacy last week, because the EOL drugs have expired their use by date.
It’s a great feeling to outlive the end-of-life drugs and if I say so myself – I love the irony of this. And of course, the smiles I received from the pharmacy staff too.
Medically, our National Health Service continues to excel itself in terms of my care. Since I last wrote – I had a CT scan in January which is still showing no real development of my right-lung tumours – although there is some growth and I’m still being monitored by both the ever-wonderful Dr Grant and also by The Royal Marsden. It don’t get much better really.
The tumour growth I mentioned is, we believe, small but significant enough to affect a nerve somewhere that’s troubled me on and off for the 2-3 years. But it’s now more constant and normal painkillers of various flavours aren’t doing the trick any more.
So, I’m back on morphine and this will most likely continue for the foreseeable future.
I have a slow-release morphine capsule – which is taken orally morning at night time.
It’s a fairly low dose, which dulls, rather than completely eradicates the pain. The slow-release action spreads the effect over around 10 hours. This is in contrast to ‘normal’ morphine which gives a more immediate relief, but over a shorter period.
I prefer this low dose, so it doesn’t affect my driving and generally I hope not to become too addicted or dependent in the future. But probably will at some point.
Along with this – I did have lung function tests and a follow-up with a respiratory consultant, to discuss my breathlessness in general and my (clinical trial) damaged left lung in particular.
While the inflammation has subsided in the main – I’m still on supplemental oxygen, although I do try short, level walks without it. Again, this is because I hope not to be dependent – and also for me, I’ve become quite self-aware of the plastic tubes (cannula) that go in my nose.
It could be argued I’m not a pretty sight at the best of times – unfortunately a nose cannula does absolutely nothing to improve that 😉
Anyway – for the time being I’m still on external oxygen when required and I’ll have some more tests and further evaluation / consultation around mid-year. That’s when I should get to know whether this will be a permanent accessory, or not.
And if all of that isn’t enough, we’re finally getting somewhere with the falling-down/ dizzy spells stuff. I had a meeting with a consultant physician at Gloucester Royal Hospital, Syncope dept.
I think Syncope is a much better term for fainting/falling down. Doesn’t sound so ‘old people / silly old git’.
The tests began with blood pressure readings taken laying down and standing up. My laying down reading was 135/59 mmHg, but after 5 minutes of standing up, the reading was just 55/25 mmHg. Not good at all – but nothing new to me as I’d been monitoring my BP with a home test kits pretty much daily.
This has been officially diagnosed as Orthostatic Hypotension, which simply means low blood pressure, when standing – especially from a prone position.
The interesting thing is what causes the significant drop. It’s known as autonomic failure or autonomic dysfunction.
So, as I understand it – our autonomic function(s) are those things that the brain controls and happens without us having to think about it – examples being what makes our heart beat, eye blinking and so on.
Now – when we stand up from a sitting or laying position – our autonomic system is supposed to counteract the natural tendency of blood falling to our legs by gravity. It does this by restricting the blood vessels in our legs and increasing our heartbeat – so that oxygen-containing blood is sent back up to our brain.
When this doesn’t happen – as in my condition, then the brain can sense the lack of oxygen and quickly shuts down functions that aren’t required at that moment. Legs aren’t really required, so the muscles don’t function and this usually results in the fainting / momentary loss of consciousness episodes that occur.
Many people might experience a slight feeling of dizziness when standing quickly, but their body counteracts things quicker than mine is capable of, so they don’t fall down.
These also a discussion that my lower oxygen levels due to damage now to both lungs, is possibly exacerbating the blood oxygen / brain function issue. Well, that’s my excuse for many things that I forget now!
So, apart from the right-lung tumours and radiotherapy scarring, my left-lung damage do to severe pneumonitis and my autonomic disfunction thingy – I’m doing okay!!
And this is what people are saying to me – ‘you look well Woz’. Even my GP and Oncologists say this.
So it can’t be all that bad.It even makes for some moderately interesting subjects to write about 😊
I didn’t realise it’s been two months since my last blog post, and while I’ve felt not much has changed – and it hasn’t really, I have at least made some gradual progress.
The treatment regime for pneumonitis has got me out of the worst of the problems and the lung inflammation has subsided. But I’m pretty certain there’s still some lasting damage to what was my good lung – and I’ve got more lung function tests lined up during February 2024 to try and quantify the situation.
The smart money at this stage seems to indicate I’ll be on supplemental oxygen long term. And while I’m getting more used to being hooked up to a machine and I can get out and about, it isn’t much fun at all really.
Still, on the bright side the last CT scan that I had in mid-November shows that the tumours in my right lung are still ‘stable’ – that means no growth (or disease progression as the medics say) since April, a good 6 months or so. I’ll take that as a win any day!
And yes, that’s given me another Xmas to celebrate – which is four Xmas’s since being pronounced Stage IV incurable, back in September 2020
I feel I can now share some history of prognosis discussions over the past few years:
In September 2020, the expected survival for my cancer of between 9-14 months. Skipped past that.
In Jan 2022 it was 50/50 I’d see the year out. Skipped past that one too!
In May 2023 it was just a matter of months. That took some getting around in my mind, but I reckon I’ve dodged this bullet also.
Because here we are at Xmas 2023 - I’m still doing okay and working on milestones for 2024 😊
Anyway – the clinical trial is stopped and won’t resume. I won’t be able to have any immunotherapy treatment in the future because of the serious risk of inflammation of one or more organs. So, as there’s currently no disease progression, I’m on observation only (no drug treatment), with CT scans until things change. Then it’ll be the 4th (and final) palliative chemotherapy – but hopefully not for a while yet.
The CT scans are still planned for every 9 weeks in London. It’s a relatively easy day trip by train. Last time I was on it, I noticed that both of the symbols on the Priority Seats could relate to me!
And on that humorous thought, it just remains for me – and on behalf of Samros and Nisa to wish all of you a very happy holiday, with a peaceful and prosperous New Year!
Well, as a period in my life – I have to say the past month has been the most stressful I’ve ever experienced.
I mean, not much really shocks me medically any more. Three and a half years of cancer – interspersed with periods of Radiotherapy, Chemotherapy, Immunotherapy – experimental trial drugs, all kinds of scans and three PICC lines and a PEG feeding tube, there isn’t much that I can’t (or haven't) taken in my stride!
But this Pneumonitis and its potential of facing down death, really had me and Samros on the ropes.
Anyway – one month later – and very close crucial medical care, along with a specific drugs plan have made me feel that things are generally going in the right direction. Not out of the woods completely and there’s still a lot of treatment to be administered.
Inogen One G3 Portable Oxygen Concentrator
To help me get out and about, I’ve been issued with a portable oxygen concentrator.
This natty little unit, runs on a rechargeable battery and works by filtering the atmosphere to create oxygen-rich air by pulling surrounding air into the oxygen machine, compressing it, purifying it and removing nitrogen and other impurities.
The purified, oxygen-rich air is then delivered to the patient, at variable pluses of air, depending on the patient’s prescription, or effort and levels of breathlessness.
I can get between around two and four hours battery life, depending on effort expanded. I don’t usually need it operating when I’m at rest – just when on the move. It has a mains charger and a car charger to keep everything topped up.
I have to say that this is really helping with my mobility now. I wear it using a small backpack, which is designed for carrying the unit, and has compartments for the mains charger and spare bits and pieces.
I call it my Buzz Lightyear Flying Pack
A few weeks ago, I was limited to just a few metres of walking – by that I mean literally 10 m could leave me gasping for breath.
I have to say that this is really helping with my mobility now. I wear it using a small backpack, which is designed for carrying the unit, and has compartments for the mains charger and spare bits and pieces.
I call it my Buzz Lightyear Flying Pack
A few weeks ago, I was limited to just a few metres of walking – by that I mean literally 10 m could leave me gasping for breath,
Talking of mobility, it did get me out to a restaurant here in Gloucester, with my girls- managed a lovely picture – if I say so myself.
L-R: Nisa, Woz, Verity and Rachel
I’ll keep on with the positive thoughts. It’s what is getting me through this.
In fairness I’ve had so much love and wishes from my darling wife, my family and many amazing friends from all around the world. I would be letting too many people down, if I was any different.
A couple of weeks ago – 12th September, to be precise, Samros and I were back in London for another round of treatment. Samros was with me, because a few days earlier – I had another unexplained collapse. Legs just went from under me – and I went down like a sack of spuds.
I decided, for the first time ever – I couldn’t trust myself to be unaccompanied for 3 days around London, in case of any other mishap. And I’m ever so glad we both went.
The day started off at hospital as any other. I had a scheduled CT scan first, followed by the blood sampling and finally the review meeting / consultation with the research / trial doctors.
And that’s when everything changed.
“Warren. We’ve just examined the CT scan you had an hour ago and I have to inform you, that your left (non cancerous) lung appears to be highly inflamed. We need to do more tests but the strong suspicion is you have Immune-Related Pheunomitis.”
Samros and I continued listening. “This can be life-threatening and potentially life-ending condition”
“We have to pause the trial immediately and begin oral high dose steroid and antibiotic treatments, to try and control this”.
Well of course the medics had our complete attention, although we were also in a daze, trying to believe the unbelievable.
Assessed as Grade 3 – adverse event Common Terminology Criteria for Adverse Events (CTCAE)
Pneumonitis is an ‘itis’ or inflammation. The pneumo bit is of course, related to the lungs. Other similar itis’ include hepatitis, colitis, meningitis or even dermatitis.
All can be triggered by Immunotherapy treatment actually over-stimulating our body’s own immune system, in such a way that the body begins to ‘attack’ itself. It’s a known, but fairly rare side effect of treat.
I felt like saying ‘so, it might be a bit serious huh?’ But no one was smiling.
And it’s about as serious as it gets. The next 4-6 weeks will range between ‘crucial and critical'. It all depends on whether the drugs treatment can overcome the inflation’ in which I’ll prevail, or – and let’s not beat around the bush – this condition could very well take me down.
Which is pretty ironic that a man that’s survived over three years of Stage 4 cancer without too many dramas, could succumb in such a highly regulated and closely observed clinical trial, to something probably immediately worse than my cancer.
Medically, when something like this happens, it’s called an Adverse Event and are graded 1-5. I’m currently graded 3. So, I’m being treated as an outpatient, but with close observations at home and taking oral drugs. Any regress, however slight - and I'll be hospitalised.
I’m also now hooked up to oxygen at home for most of the day. I have cylinders to take with me for any outside journeys, including for my now one or two trips to London for assessment each week.
My lovey Samros has had to reduce her working hours to weekends only, so she can be my carer during the week. At weekends, Nisa takes over that role, brilliantly! This agreement (taken with the medics) is about the only thing keeping me from being taken as an inpatient into the Royal Marsden in London.
Hospitalisation needs to be a last resort for me. If I get worse, it will become a Grade 4 Adverse Event, which is being treated by IV and strong immunosuppressive drugs, which all have their own complications.
That’s about the highest grade .
Well, there is a Grade 5, but patients never know. Because that is death.
So currently, it’s fair to say we’re getting by day by day. I don’t feel so bad, but mainly that’s the high does of steroids masking my ills.
Wozzer with the must (not) have accessory. Shown here with a plug-in oxygen condenser
Breathlessness is a serious problem though and if I try and do almost anything without my medical oxygen connected, I’m feeling poorly within seconds.
This is because I've very little lung capacity to make oxygen, which is then trnsferred, via my blood cells to muscles, throughout my body. So the reason for the falling has been explained, that my brain senses a lack of oxygen and immediately prioritises oxygen to the heart.
In order to do this, the brain will cut oxygen supply to limbs etc that don't need it at that precice moment. Therefore my collapses were caused by low oxygen to the brain, whice cut supply to my leg muscles - and down went Wozzer!
Still, I’m living to tell the tale – and hopefully will have more regular updates over the next weeks and months.
Only Wozzer could have something more serious than cancer 😉
Yes, beating the transfer deadline by just a few hours, Wozzer can reveal that he’s on a free transfer from Cheltenham Town to Chelsea. As a lifelong Manchester United fan, this took some serious thinking about 😉
Well, actually it’s really that I’ve transferred from Cheltenham Oncology Centre, to the Royal Marsden Hospital, which is just along the Fulham Road from Chelsea FC, but that sounded better!
Even though I’m one of the few people Chelsea haven’t signed recently, I can reveal there were some preliminary discussions with my agents about playing on the Outside Right, but they insisted I was better positioned Right Outside.
Anyways, back to reality. Here we are some 7 weeks into the clinical trial and so far, so good. The whole experience at The Royal Marsden has been outstanding – everyone is very organised; treatment appointment times are met and information flow from medics to patient is always up to date.
After the issue with the canula and leaking of contrast dye for the CT scan (described in my previous post) and the amount of blood sampling required going forward, I’ve been fitted with another PICC line.
While it has its inconveniences (weekly flushing and dressing changes) and keeping it dry with a special sleeve when showering, it’s so much better than stabbing my poor old veins, that have had over 3 years of needles and cause quite a few problems.
In terms of treatments – currently I have two drugs. They are both known as Immunotherapy drugs and intended to train my body to better recognise and attack the cancerous tumours, without too many harsh side effects, as in generally the case with say, chemotherapy.
Sampling blood is so easy and painless, with a PICC line
That’s not to say I get off scot-free. One of the drugs is a powerful vaccine given by injection into either upper arms (one jab in each) or thighs (again one in each). I have to say it hurts like hell for a few minutes, then subsides over 1-2 weeks- but with inflammation and pain around the injection sites.
This is definitely grown-up stuff, much more painful as any normal flu or covid jab! The other drug is intravenous, so that goes through my PICC line and thankfully painless.
The reason for using two drugs is - to my understanding – that neither is particularly strong enough to deal with the tumours individually – and the trial is to determine if the combination of two give a better result than the individual parts. Kind of 1+1=3
Currently, it’s too early to say if the trial drugs are working – this will mostly be determined by CT scans. One is due on 12th September, which MAY give an initial indication – but my guess is the following one around mid-November will have more meaningful results.
I find it best not to speculate on possible results and scenarios– just take it as comes!
Ongoing monitoring of my general wellbeing is done each visit by way of blood-sampling (a lot of blood) and also vital signs checking and interview with the trial doctors.
All of these tubes are filled. That must be almost an armful 😉
This (and any scans etc) usually take place on the first day of hospital visit and then drug treatments are on the next day. This is now settling into a pattern of every 3 weeks. I stay overnight in a local hotel near the hospital. The drugs companies cover my reasonable hotel costs and other expenses.
So, for now – even though it’s near Chelsea, I’m pretty happy with how things are going.
More in a few weeks – or when I have updated news.
I previously mentioned the mishap at Gloucester Railway station on 22nd June, when I collapsed on my way to probably my most important meeting of this year – a pre-trial consultation to see if I qualify for the screening process and subsequent entry to a clinical trial, to test some potential new cancer treatments.
And so, a week later on 29th June, I did make it to the meeting with Professor Harrington and a couple of his research team. My eldest daughter Rachel came with me, ostensibly to take notes – but in reality, to catch me if I decided to keel over again.
Thankfully I stayed on my feet – unaided
Impressive Entrance photo credit - Amanda Slater
The consultation started exactly on time at The Royal Marsden Hospital, in London. No hanging about, which can happen and just adds to stress levels.
Prof Harrington is clearly a leader in his field, but had a very easy-going manner about how he interviewed me. And we went through a lot, from my cancer history to prior lifestyle, current medications and a physical checkup, Then the meeting continued with a detailed explanation of the proposed clinical trial and allowed me to work through my list of questions, which were either answered there and then, or certainly in the 20+ page of trial description, treatment scheduling that I was given.
Everything looked good to me, but I wasn’t permitted to say ‘yes’ there and then. I had to consider the trial paperwork and then return to hospital a few days later (4th July), to initial and sign consent in person.
Very professional and correct.
Once the consent was signed, we started again on a full physical examination, blood samples taken, ECG and finally a ‘baseline’ CT scan with contrast was undertaken. Baseline means a reference scan - so that all future scans and imaging of my tumours can be compared back to this original.
CT with contrast is actually two scans. The first pass in the scanner is without the dye, then a small pump injects the dye into a vein and a second pass in the scanner is done. The dye helps to improve the images and highlight cancerous areas within the body.
Scanner with contrast dye pump (top left) Sample Image - not me 😉
Unfortunately, when injecting the contrast dye into my veins, the dye leaked out into the tissues under my skin, this is called ‘extravasation’. It’s not serious, but pretty uncomfortable for a few hours – and then a couple days for the swelling to subside.
Swollen tissue from dye extravasation
So, this meant another visit on 7th July to re-scan me. Thankfully this went well, and all of my screening interviews / test results / scans etc have been sent to the drug company that is behind this particular trial for the final decision on my suitability to enter the trial.
I received positive confirmation a week or so ago and this coming week, I begin treatments in what is honestly something with an unknown outcome, but very much worth doing in any case.
I have a full schedule, with various treatments and tests on days 1, 8, 29, 50 and 71. Following this there are subsequent treatment intervals of around 3 weeks, with comparative CT scans every nine weeks.
All in all then, while it's been a pretty hectic month for me with a few trips to London, I'm very glad to be on this trial and starting soon.
But also I'm pragmatic enough to know and understand that a clinical trial is just that - a trial.
And it's primarily in place to test the drug(s). The patients on a trial I suppose, always hope this might just be the 'miracle drug'. Realistically though. it'll simply provide data and other information for future development of cancer treatments.
But for me, right now - after having two longish lines of treatment without success and being faced with a third (and probably final) course of chemotherapy, this trial allows me an additional line, while being extremely well looked after.
And if that’s not enough, the tumours are also getting to my rib-cage.
