July 2023 – Wozzers Journey with Cancer

46 – Preparing for a Clinical Trial

24th July 2023

Bit by bit, I’m getting there.

I previously mentioned the mishap at Gloucester Railway station on 22^nd 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 29^th 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 (4^th 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.

So, this meant another visit on 7^th 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 that can’t be bad at all 🙂

45 – Palliative Care – a term with an unfortunate reputation

12th July 2023

‘Hello Warren – this is the Palliative Care Team at Gloucester Royal Hospital. We’d like to make an appointment to visit you.’

So, there’s a term almost guaranteed to strike fear – or at the very least an awful feeling of unease into oneself.

And why?

Because many of us confuse ‘Palliative Care’ with ’End of Life’ care.

While many think palliative nurses (for instance) are just there to administer a good ol’ dose of morphine (or whatever), to relieve the worst of pain, right at the end of life – the actuality is far from that.

Within the cancer treatment world, there are a couple of key conditions and a couple of treatment regimes. These are curable or incurable cancer and curative treatments or palliative treatments.

Sure, I’m oversimplifying the broad spectrum of all possible treatment regimes, but to illustrate this article, hopefully this will do:

In my case, back in April 2020 I was diagnosed with throat cancer and as it was considered curable, I was given curative radiotherapy over six weeks. For many people, that should be it – and with regular checks for 5 years or more,they might not see any return of the cancer.

For those not so lucky - like me, where the cancer subsequently spread to other parts of the body, this is termed ‘metastatic cancer' and for a lot ofcomplex biological reasons, the cancer becomes incurable. My spread to the right lung was first noted by CT scan in September 2020.

So – for the best part of 3 years I’ve been living with incurable cancer. Therefore the treatments I’ve received during this time (Chemotherapy, Radiotherapy and Immunotherapy) have all been termed palliative treatments.

A definition of Palliative Treatment:
a medicine or form of medical care that relieves symptoms without dealing with the cause of the condition.

This has all been brought to the forefront of my life, because I received the first contact from my palliative care team at my local hospital recently.

Believe me, I felt like it was a phone call from the grim reaper himself ☹

But of course, it was nothing like that. We discussed all kinds of things from counselling, through finances, daily living, medications and medical aids or equipment that might be required – now or in the future.

I did come by a great infographic by a contact of mine on Twitter (yes, I know - as if I’m not sick enough as it is). It explains clearly what I’ve been waffling on about – and hopefully will help anyone who, for whatever reason, finds themselves in the realms of receiving, or explaining Palliative Care to relatives or friends.

Chelsey Gomez is an artist and cancer survivor. She creates art to help and inform other cancer patients of all ages. Never spoken to her, just messaged a few times, but I love her work.

Chelsey has kindly given me permission to add her Palliative Care artwork into my blog and by clicking on it, will open her website (in a new tab).

So yes, there will come a time for the Palliative Nurse Team to be here for my 'end of life' treatment and care - but I'm not booking them in for any time soon 🙂

44 – Tribulations before the Trial

10th July 2023

Well, from not having much to write about over the past few months – the past couple of weeks or so have given me a fair bit of material for updates.

In my last post, I mentioned the possibility of joining a clinical trial in London. It took a couple of months from Dr Grant’s referral to the appointment being made for me on 22 June at The Royal Marsden Hospital in London. This is for a pre-screening consultation, so see if I fit the strict parameters for inclusion in a particular trial.

The Royal Marsden https://www.royalmarsden.nhs.uk/about-royal-marsden/who-we-are is a specialist hospital dealing with solely with cancer treatment and cancer research. It’s in the top 5 cancer centres in the world.

Good enough for Wozzer to at least check it out. 😉

I was to see a Professor Kevin Harrington, who is in charge of this trial and also considered one of the top Head and Neck Cancer specialists in the country – if not worldwide. https://www.icr.ac.uk/our-research/researchers-and-teams/professor-kevin-harrington

And what should have been an easy day in London and find out all about the trial, became anything but.

I’d booked a train from Gloucester to London and then planned a cab ride to the hospital. I’d given myself an extra hour leeway, just in case of any delays – not knowing that I’d be the cause of the delay!

I parked my car in the station carpark and it’s just a simple 20 or so metre walk to the station hall. I felt a bit lightheaded and unsteady. As I got to the ticket barrier, bang – down I went.

Completely collapsed right there in the ticket hall.

And of course, I went down pretty heavily – back of head hit first on the stone floor. I was awake, but bleeding and with a very sore head.

The paramedics arrived, assessed me in the station – hooked me up to a saline IV drip, ECG and all the works – before taking me to hospital in Gloucester where more checks and a CT scan were done, finally letting me home late that night.

The medics concluded it was a combination of low blood pressure (down to 80/50), lower than normal oxygen in blood (around 92%) a bit of dehydration and general malaise because of my overall condition.

I reckon I just need to be a bit more liberal with the tonic water in my gin 😉

Anyway, now I know – I know. So, I’m better prepared when I go out and watch for the warning signs.
Finally, after three years, I've had to admit to myself, there might just be something up with me!

I'm placing on record huge thanks to the Great Western Railway staff – Naomi, Sarah and Daniel, who went beyond the normal call of duty to help me!

The appointment at The Royal Marsden was rearranged to the following week and that’ll be the subject of one of my next posts – due very soon...

Month: July 2023