Squamous cell carcinoma

42 – End of the Line

21 February 2023

Fortunately, the title refers to the end of my PICCadilly line, and not to me personally!

Because I’m now on one immunotherapy infusion every 4 weeks, I had to balance the nicety of no needles for bloodwork and infusion, against the requirements of keeping a PICC line in place.

In-place means weekly visits to my local nurse clinic to have the line flushed and dressing changed. Also of course, keeping it secure and dry all the time – especially when showering etc.

Removing it, means I don’t have to do all of the above, but now have conventional needles for blood sampling and a canula fitted each time I have an infusion.

It was a decision that on balance I went with the line removal and for now, just a monthly jab or two. In many respects I had grown quite attached to my line – or indeed how it was attached to me!

Here’s a couple of photos; of my line from a few months ago when in-place, and another of its approximate route when it was in me.

I’m still really quite amazed how that 55cm tube was inside a vein for so many months and never caused any pain or problem.

55cm long PICC line

So now I’m back to ‘old skool’ – having a canula inserted for each infusion. For those of us like me, who have difficult veins – I rely on nurses that are also good darts players, because their aim is normally so much better 😉

But actually, the good ol’ NHS has a more scientific solution that helps the nurses – the Air Glove.

This is a hot-air blower, which attaches to my arm and provides three minutes of hot air (as if I need any more), to make my veins more prominent and therfore easier to jab with a canula.

Here’s a video for those interested in seeing how this works in practice.

So that’s about all for now.

Oh – just a quick update on treatments. So, I’m still on monthly infusions, but it’s too early to say if the treatment is working, or not.

The plan right now is to have two more immunotherapy infusions – one in March and then again in April. These will be followed by a CT scan, to determine if the treatments look like being successful, or back to the drawing board…

More from me, most likely in April.

Until then – wherever you are in the world, stay safe and well x



41 – So what’s this Immunotherapy all about?

23 December 2022

They say one shouldn’t spend too much time on the internet trying to find out about cancer treatments. And on the whole, I’d say that’s pretty good advice.

Unless you’re Wozzer that is!

Unfortunately, I have too much time on my hands these days, so checking stuff on the web is right up my street.

And when Dr Grant discussed my new immunotherapy treatment, with a drug named Nivolumab (brand name Opdivo), of course I had to check it out on Wikipedia: https://en.wikipedia.org/wiki/Nivolumab

I’ll admit to not understanding most of what’s written, but one line certainly grabbed my attention:

‘It is made using Chinese hamster ovary cells’.  Blimey!   Really?

Of course, I’ll roll with it – if Dr Grant says it’s fine, that’s good enough for me.

Immunotherapy is completely different to the more well-known Chemotherapy. The key difference is in the way that they ‘target’ cancer cells.

Here’s my simple understanding:
Our bodies are comprised of literally billions of cells, that provide the complete structure of how we are and how we live eg, nerve cells, blood cells, muscle cells and more. They’re all working 24/7 and can repair themselves if things are going wrong (viruses etc). They can die and duplicate so that new cells replace the dead ones.

Sometimes though, in some people – cell structures can become damaged inside and they start to duplicate uncontrollably, growing as cancerous tumours.

And even worse, they can spread to other parts of the body and begin to grow and develop in or on other organs, known as ‘metastasis’.

And if those two statements are not bad enough, the ‘metastatic’ cancer cells can send signals to our body’s own immune system (antibodies) to stop trying to fight or ‘cure’ them. Which is what makes cancer so scary, because by this step – the cancer is usually incurable.

So, Chemotherapy attempts to reduce the uncontrollable cell-splitting duplications, but unfortunately can and does stop healthy cells from duplicating too. This is why there are generally such severe side-effects associated with this type of treatment.

Image credit: https://www.opdivo.com

Immunotherapy takes a more subtle and technical approach. It trains / stimulates (or boosts) our own immune system to ignore the ‘I’m friendly’ signals from cancer cells and to attack those cells in any case.

To date, I’ve just finished my 3rd infusion of Nivolumab and now have one just one treatment per month by IV. It takes around one hour to infuse.

So far so good. I’ve haven’t had any obvious side-effects and hopefully will have another CT scan in January, so that we can get some kind of indication as to whether it’s working, or not.

But I can’t seem to get the thought of the Chinese hamster out of my mind – and how much of it is now inside me!

Image credit: Milrajas https://gifer.com/en/user/368113


So if anyone sees me nibbling on cheese – or even worse running on a wheel – for goodness sake, please contact Cheltenham Oncology Centre on my behalf 😉

More from me in a month or so, but until then Wozzer wishes you all – wherever you are in the world, a very merry Xmas and a happy, prosperous and healthy New Year!

40 – Cancer Scan Anxiety and Scanxiety

10 November 2022

I’d touched on the scan and especially reporting delays in my last post. And it appears to becoming an issue countrywide. One cancer patient I’m in touch with, was still waiting for his scan report, almost 3 months after the scan – and almost in time for his next scan!

So, what on earth is going on?

The system seems to be that once a patient has a scan, the images are interpreted by a Radiologist who then writes a report and forwards said report to the specialist doctor. The doctor then considers the report and decides on the best treatment for the patient.

All good and the system worked pretty well, until what appears to be a backlog due to a combination of Covid delays and lack of trained personnel.

I did a bit of delving, but didn’t get very far with my local NHS Trust. Certainly not without making a ‘Freedom of Information’ request. And I don’t have the energy or inclination, for all of that.

But, talking to a doctor recently, it’s clear that scan reporting is likely to be an ongoing issue for the foreseeable future.

As he put it to me ‘They can keep producing scanning units every day, but it takes around 10 years to fully train a Radiologist to interpret scans professionally’.

In a way then, my 3.5 weeks wait for the results wasn’t a long time in the big scheme of things, but an eternity in terms of anxiety, not knowing how things are.

And unfortunately, it wasn’t the news I was hoping for. The 18 weeks of chemotherapy didn’t shrink any of the tumours, and in fact the largest (Tom) had increased in size by some 50% from 40mm to almost 60mm. Dr Grant was also very disappointed by the results.

If there are any positives to take from this, no further spread has been detected. Whether that’s due to the chemo or just natural, is impossible to tell right now, but suffice to say that because the first-line (chemo) treatment was unsuccessful, then some careful consideration had to be given to the next steps.

These ranged from pause treatment for a few months and then scan again; use a different type of chemo or start with a course of Immunotherapy. We discussed the options and agreed to run with the latter. So later this month, I’ll be back for bi-weekly infusions of a drug named Nivolumab.

I begin next week 16th November – with preliminary checks and tests and then my first infusion is scheduled for 21st November and then every 2 weeks after that. I guess quite a bit depends on how I react to the treatment.

Dr Grant tells me that I have to be aware of anything ending in ‘itis’ (inflammation) i.e. dermatitis, colitis, hepatitis etc. This is because the drug alters the body’s own immune system and while generally well tolerated, it can have quite unpredictable and serious effects

Anyway, I’m sure I’ll learn a lot more in the next few weeks – if nothing else I’ll have lots more material for my blog 😊

So, all being well, I’ll write an update after my second cycle in December. Until then, wherever in the world you are – take care x

39 -FU2 Chemo and Scanxiety

12 October 2022

Ooh, I didn’t realise how long it’s been since my last post back in August. They say time flies when you’re enjoying yourself…

Well, I wouldn’t quite call it ‘enjoying myself’, as I’ve been on Chemotherapy continuously for the past 10 weeks. In fairness it hasn’t been so bad for me – I’ve had few side-effects, but still got all my hair and appetite.

Of course, it’ll take much, much more to stop me eating than a few doses of chemo!

I’m absolutely convinced that the Beerotherapy has helped, if only that following high doses of beer, I seem to forget about what’s up with me.

I might have also forgotten to tell my GP about the beer. She spoke to me a couple of weeks ago and says I’m ‘defying science’ when considering my treatment regime. I think my body has defied science for many years really, but I’m taking this latest medical opinion wholeheartedly!

As I write this, I’ve just started my sixth cycle of chemo. Each cycle is 3 weeks and goes something like:
Week 1 (Mondays) - I get two infusions in hospital – Carboplatin and Fluoroucil 5FU along with anti-sickness medication and Dexamethasone steroid, which I also get tablets to take at home.
Week 2 – No new infusions or drugs, just feel the treatments working (feeling of fatigue and occasional sickness), along with forgetfulness which I blame on the chemo, but really I suppose it’s a function of age ☹
Week 3 – This is a so-called recovery week where my body regains its white blood cells and has increased immunity from infection.

At the end of Week 3, I’m back in hospital on the Friday for blood samples and the consultant checks that I’m fit and well enough to start the poisoning cycle again on the following Monday!

So, being in my sixth cycle of chemo, I think this is the last for now. The regimen calls for six cycles of 3 weeks (18 weeks total) and then evaluation of the treatment and its success (or not) of slowing the growth of existing tumours and any spread to further parts of the body.

Evaluation is done by taking CT scans, which I had at the end of September and then my consultant Dr Grant, decides on the next steps. This could be more of the same to follow-on, a break in chemo and then restart when my body recovers or a completely different treatment.

That was a simple enough paragraph to write, but the actuality is more complex and frustrating.

It seems that post-covid the NHS are under pressure to increase scanning for many patients, especially those with cancer (or initial scans to find out) – and this appears to be happening 7 days a week here. This is the good news.

The not so good news is that the next step in the chain is the ‘Radiologist Principal Interpreter’ (as they’re called here in Gloucestershire), to write a report detailing what the scans show. It is this report that goes to my consultant for him to decide on prognosis and treatment.

But now we’re in a position that the Radiologists are completely overwhelmed with the higher volume of scans to interpret, meaning there are lengthy delays in getting these to the consultant.

Which is where I’m at right now – with no report available after almost 3 weeks and not knowing how I’m doing, or what happens next.

Hoping to know more soon(ish) and write an update on this in a week or so.

Anyway – back to the chemotherapy.

I’ve had a few people (via my blog and social media) ask me for a bit more detail about the regimen I’m on. The how and why of this combination of Carboplatin and Fluorouracil 5FU is infused.

So here goes my understanding:

Normally the go-to chemotherapy for my type of primary and therefore secondary cancer, officially known as ‘head and neck squamous cell carcinoma’ is a long-standing treatment called Cisplatin. It’s a platinum-based drug and very toxic – especially to kidneys. And it was determined early on in the process that my kidneys might be damaged, to the point that I’d be worse off with renal failure than the cancer!

In fairness, my poor old kidneys have worked pretty dammed hard, filtering probably far too much alcohol over many sessions. Seemed great at the time though!

So, Cisplatin definitely isn’t for me. The alternative is two drugs, that when combined attack the cancer cells, but with lower risk to my kidneys. That’s not to say they’re milder – I understand that it’s more like 1+1=3, in that the combinations works better than either drug given in isolation.

Hoooked up and still smiling!

For the past so many Mondays, I’m in Prescott Ward at Cheltenham Oncology Centre. It’s a day patient ward for cancer treatment infusions, and we’re in chairs rather than beds. My time there is around 1.5 to 2 hours. The staff – as ever – are amazing and highly professional – even more so because of the Cytotoxic (toxic to cells) drugs they have to handle and dispense. And of course, helping patients with varying stages of cancer.

It starts with a hook-up of a quarter litre of saline, which goes into my PICC line via a pump. This is just to give me a bit more fluid.

Then I get a dose of steroid (Dexamethasone) through the line to help my body resist the immediate effect of the chemo – then finally the Carboplatin is added to my line. It takes exactly 30 minutes for the 570ml of Carboplatin to be administered. That equates to a dose rate of 1140ml per hour.

Following that, the second infusion is the Fluorouracil 5FU. This is highly concentrated and quite strong. So much so that it takes 96 hours to infuse 192ml of 5FU. This equates to a dose rate of just 2ml/hour.

Back in the day patients would be in hospital for 4 days (96 hours) to receive this continuous infusion. But nowadays I have a ‘Baxter Infusor Pump attached to me and my PICC line and it stays connected for the full 96 hours – day and night. I did touch on this in a previous post – but now I’ve detailed some more by request.

The Baxter Infusor elsotomeric pump, to give its full name is known as an  OPAT device. OPAT stands for Outpatient parenteral antimicrobial therapy, which simply means self-administration of complex drugs in the community (at home), under telephone helpline supervision.

Handle with great care, I reckon

The ‘pump’ itself is a work of genius. It doesn’t have any metal moving parts or electrics. Instead, it has a pressurised balloon filled with the 5FU chemo.

This is inside a sealed container and connected to a fine flexible pipe of around 90cm long, which attaches to my PICC line. By day I wear it in a pouch attached to my belt.

How the Baxter Infusor is plumbed to my PICC line
Daytime wearing of the Baxter Pump - attached to my belt and hidden under my clothing, so that hardly anything is visible.

At night, the pump is placed behind my pillow – but with only a short pipe (the pump that is), I have to be careful about how I move!

The ‘pump’ action is a combination of the pressurised balloon expelling the chemo through the fine tube and a flow regulator that is attached to the PICC line. Between them, they rely on body heat and I suppose a bit of capillary action to keep the flow moving at the correct dose.

FU2 Chemo is inside the balloon. The balloon deflates each day in line with the calibration marks.

On the fourth day – a community / district nurse comes to me at home – timed as close to the 96 hours (from the previous Monday) and disconnects the pump, flushes my PICC line with saline, changes my PICC dressing and then that’s pretty much it until the next cycle.

The empty Baxter infusor still has to be handled carefully and I’m provided with a special container to hold the pump, which I have to take back to hospital for specialised disposal.

And that’s pretty much how the chemo drugs are administered. Hope it helps someone who might be starting this process and hasn’t bored the remainder of my followers of this blog.

Until the next update of scanxiety and what’s coming next for Wozzer…

Take care and stay safe x

38 -Back on the Picc Line

9 August 2022

Well, I’m back from the long awaited trip back to Vietnam and Cambodia. And thanks to the superb pre-trip planning by my medical team, which included a ‘final’ Full Blood Count just a few days before departure, to ensure my immune system was back up and running for full infection resistance.

And it was - so there was no stopping Woz 🙂
I didn’t even need so much as a paracetamol for the two weeks away!

Of course, beerotherapy helped. As did the local medicine (Lychee Martini) in copious amounts. Well at least what I remember of those sessions 🙂

Purely for medical research - Lychee Martini infusions.

I’ve already had a new Piccadilly line inserted, by the ever professional Lauren and her able assistant Donna.

I still can’t get over how a complicated procedure is completed so quickly and almost painlessly.

And believe me, inserting a fine plastic tube 520mm (yes that’s just over half a metre) through a vein from my shoulder and around my chest to terminate near my heart, is no mean feat.

Ultrasound scan prior to PICC line being inserted. The 'hole' in the middle of the monitor is a highly magnified cross-section of one of my veins.

Anyway, the line’s in and is planned to stay in for the next 3 months or so, while I continue with another four cycles of three weeks each, chemotherapy infusions.

So that was me yesterday, back in the Oncology centre in Cheltenham for my infusion of Carboplatin and then hooked up to my ’chemo pump’ which contains the FU2 Chemo that will slowly but surely be infused over four days this week. This is the third of a planned six cycles of treatment.

Then it’s just a matter of waiting to see what nasties the treatment has in store for me over the next few weeks, while I wait for the next cycle to begin at the end of August.

In the meantime, I’ve added some pictures from the trip so I can keep looking back and remembering what a splendid time I had with family and friends across the two countries.


Until next time, feel free to be jealous 😉

7-Getting down to business

21st April 2020

I meet my next specialist – and I guess who will become the most important person for me for a while. I’m now firmly under the care and attention of the Oncologist who will be leading the team taking care of me. Although at that time I didn’t realise what an amazing team it is.

Anyway – he introduces himself – Dr Warren Grant.

Another Wozzer I thought, that’s an amazing great omen 🙂 I’m sure he felt the same about his new patient…

He has the confident but calming style of confirming what is what. ‘You know you have throat cancer Warren, and the good news is there’s no spread away from the throat. There were some patches seen on a lung but the MRI scan confirmed they are nothing to worry about – although nothing will be left to chance and we’ll keep an eye on that going forward’.

And so, it’s down to work. No messing or waffling. The treatment is fairly aggressive he says – six weeks of radiotherapy x 5 days a week and additionally two cycles of chemotherapy on weeks 1 and 4.

Honestly that left me reeling a bit. I was expecting radio only and had already researched some that reckon it’s enough on its own.
There’s good reason though. He continues… ‘This particular type of cancer has a good possibility of eradication, with a human survival rate of around 75% after 5 years. Of course I’ll take that – and try and increase the percentage.

The cancer has an official name: Squamous cell carcinoma, left oropharynx, with TNM staging of T3 N2 M0 HPV16 positive.

The explainer below is courtesy of Cancer Research UK

TNM stands for Tumour, Node, Metastasis. This system describes the size of the initial cancer (the primary tumour), whether the cancer has spread to the lymph nodes, and whether it has spread to a different part of the body (metastasised). The system uses letters and numbers to describe the cancer:

• T refers to the size of the cancer and how far it has spread into nearby tissue – it can be 1, 2, 3 or 4, with 1 being small and 4 large

• N refers to whether the cancer has spread to the lymph nodes – it can be between 0 (no lymph nodes containing cancer cells) and 3 (lots of lymph nodes containing cancer cells)

• M refers to whether the cancer has spread to another part of the body – it can either be 0 (the cancer hasn’t spread) or 1 (the cancer has spread)

From this it’s clear the cancer has been developing for a while (T3), but it’s never given me any indication, save the mild sore throat on and off over a couple of months. The main thing Vicki advised me later is M0 means no spread to other areas of the body.

Dr Grant continues… ‘We’ll being treatment in around 3 weeks, say mid-June and finish at the end of July. On average expect the treatment to intensify as it progresses and then some months of discomfort, but hopefully feeling better towards the autumn time’.

Before treatment begins, there’s more to be done and more of the team assigned to me, make initial contact:

Speech Therapist; Dietician; Radiology team for Mask making and Endoscopy team for inserting a feeding tube. And Lead Nurse Vicky is never far away.

Just amazing – and I don’t know half of it yet, except this Gloucestershire NHS Foundation Trust is an extremely well-oiled Rolls Royce of a machine. Every single person I’ve been in contact with – or staff that have phoned me are not just professional, but very personable – without exception.

It’s easy to say this, but I really mean it that I’m feeling pretty good about my condition – because I have total faith in this highly experienced team, who seem to give me the impression that I’m their only patient 🙂

And lets not forget we’re in the middle of a pandemic, causing the UK’s greatest ever drain on NHS resources right now.