Big Wozzer

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.

Well, the station staff were amazingly good and quickly erected a privacy screen and covered me with some tin foil, while they called for paramedics and an ambulance.

One of the station staff – Naomi was just going off duty, but she wouldn’t leave me until the paramedics arrived.

Ps. I did ask for the photos to be taken for this blog!  If I'd really thought it through while falling, I'd have asked someone to live-stream it 😉

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...

43 – Trials or Tribulations

20th June 2023

Oh my word – I didn’t realise how long it’s been since I last wrote a blog post. A few kind people have contacted me separately to see if I’m still er, around.

And yep, I sure am around. Although the going has not been easy these past few months and I've found it a bit difficult in what to write.

To catch up – I’ve now been through 8 cycles of immunotherapy and unfortunately CT scans are indicating that the treatment isn’t having any real effect on the tumours. In actual fact, the latest CT scan is showing that my tumours Tom, Dick and Harry are now coalescing together into one mass (or bulk soft tissue) as they like to call it.

Which isn’t particularly good news – although not all bad right now because still not showing any further spread, it’s seems I’m entering a new phase, entitled ‘Disease Progression’.

Well, to a simpleton like me, it’s all been progressing for the last 3 years. But to the medics it’s all expected, when the first two lines of treatment (Chemotherapy and then Immunotherapy), haven’t been successful.

So right now, we’re at a bit of a crossroads in terms of what’s next.

There is the possibility of joining a clinical trial of some new treatments under test conditions. I’ll be finding out more about this over the next 2 or 3 weeks. From prior experience looking at trials, there are a number of known unknowns and indeed unknown unknowns. So quite a lot to consider before leaving the care of my dear Dr Grant and entrusting others, most likely at a hospital  in London.

The other – and seemingly only choice, is a 3rd line chemotherapy with Docetaxel, which is a pretty aggressive chemo drug.  Scraping the bottom of the test-tube, kind of thing I reckon😉
But at least this would be with Dr Grant and his superb team here in Gloucestershire

Anyway, I hope to find out more soon about both and then will have to decide on a route.

In the meantime, now that Tom, Dick and Harry and joining together into one mass (so to speak), I’ve been giving thought to a new name for it.

After just a few nanoseconds of brain strain, I’ve decided on Big Dick as the new name for my right-lung soft tissue thingy.

Absolutely not to be confused with any other soft-tissue thingies.

Make a note people 😊

Until next time…
Stay safe
Woz

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 😉

37 – Up, up and away

24th June 2022

‘We’re not trying to poison you Warren – we’re always trying to balance effectiveness against quality of life’. This was explained to me by my Oncologist, Dr Grant, as I’d finished my second cycle of chemo – totalling six weeks so far.

And as ever, he has it bang on the nail.

I say this because I seem to have tolerated the chemo quite well. Fewer side-effects than I was expecting and overall, felt okay – all things considered.

I have four more cycles of three weeks to do, but this will recommence in August.

The reason for this pause in treatment  is that I’ve been passed as ‘fit to travel’ – therefore the trip I haven’t been able to take since all this started in 2020, is allowing me one more visit to see friends and family in Vietnam and Cambodia.

It’s a relatively short trip for me – just a couple of weeks, so I don’t push my luck. Samros and Nisa will be able to stay a week or so longer. But enough time for me to revisit some of my favourite places in both countries.

Among them will be around Ben Thanh Market for excellent street food in downtown Saigon (HCMC) and Kep – a small town on Cambodia’s south coast, which is famed for its amazing seafood.

All places of course offer good and cheap Beerotherapy, so I’ll be suitably 'hydrated' throughout.

All the chemo should be out of my system and infection resistance reasonably okay by the time we fly on 10th July. My PICC line has already been removed and will be reinserted when I’m back, ready to start treatment again.

But between now and then, it definitely feels like freedom for me – no tubes or medication for a few weeks!

And on that happy note, I should start thinking of packing but as ever with me, will just do it on the morning we fly 😊

I’ll be back on here with an update around mid-August.

Until then, take care x

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

 

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!