Stop Press: It’s an Ace!

I am delighted to say “it’s the right sort of cancer!”   

There’s a “biological agent” called Cetuximab that’s designed to stop bowel cancer cells from dividing and growing, as well as sensitising them to the effects of Folfiri – a double positive whammie!  But it only works if the cancer cells are the right type… and mine are!

So I’ve “turned over the second ace” that I’ve talked to some of you about - the first, if you were wondering, being the decision to adopt Sean the Stent.  It does mean I’ll now have to go to the clinic twice a week every week rather than every fortnight; and there will be more side effects to handle(*), but they are a small price to pay for what we hope Cetuximab’s effects will be.

(*) There’s a chance my skin will return (temporarily!) to that I “enjoyed” as a teenager :-( ; if my eyelashes don’t fall out they’ll get longer and curlier (anyone want my unused mascara?); and I’ll develop a craving for cheese.  OK, one of those is not true…  cheese… but it is true I’ll become 5% mouse - just don’t call me Mickie or Jerry!

(with apologies to BR)

Ian's Other Blog

Encouraged by your reactions, and spurred on by some of you who know me professionally, I've decided to start another blog.

So "Ian's Other Blog" will be, I hope, interesting reflections on my 35 years working with Computers and IT, with a focus on my experiences trying first to understand and then communicate what it takes to think like an Architect (and/or Designer) trying to help large organisations use computers effectively and efficiently.

It's here:     http://ianchartersde.blogspot.co.uk/

Unlike this blog, it's written with a broad audience in mind, so please do tell others (and me!) if you enjoy it - and just tell me if you do not!

Away from home

What a great day!

We're here at a holiday center(sic) for a long weekend with all the family, and enjoying a great time.  OK, I couldn't go swimming with the grandchildren, and choose not to go into the tropical swimming paradise as a "pedestrian", (no immune system, risk of crowds) but that's a small price to pay for wonderful food, wine and company; let alone all this being with our children and grandchildren.  Thank you, M, for making it happen.

And it's also good to report we've spent our first night away from home since Christmas!!  Normal really is good!

Reflection: palliative care

The dictionary defines palliative as “relieving pain without dealing with the cause of the condition”; I have to admit that was the way I saw it when the consultant first explained “your specific circumstances mean we cannot cure you”, and it was (and is) the way I saw the notion as I tried last year to make my mum’s final days as comfortable as possible.

And my treatment programme is described as being palliative…

…purely because in my case it’s not ultimately able to cure me per se.  But there’s more to it than that, much more that I now realise needs to be clarified: chemotherapy is not, quite patently not, just about relieving pain (in fact, while it’s not at all painful per se so far, chemo has side effects!); it’s goal is, as we hope and pray we will discover in two cycles time, to reduce my tumours, significantly extending quality and quantity of life… that, to me, is not “just palliative”.

The pattern repeats, with a twist

On the cusp between “week 1” and “week 2” of my second cycle, and I’m delighted to say things have been pretty much a repeat of the first round; perfectly OK for the 1^st half of the week (way-to-go steroids!), followed by tiredness and a tad of nausea for the last few days.  

In fact, on balance I’d say I’ve actually felt better than the same period in the first cycle; not only have I not had a trip to hospital, but also because of the excellent additional anti-side-effect drug, I’ve hardly had hiccups or reflux:  “Anti-side-effect drugs:  3, Side-effects of chemo 0”!   If my body can repeat this each time, then I’ll be more than happy.

However, and I guess this was expected (the Folfiri data sheet says as much) I have to admit there is evidence of one very particular cumulative side effect – my hair.  Head and beard do seem to be thinning, albeit only a little at present.  Quite oddly, and somewhat frustratingly the most obvious evidence is slow disappearance of the few remaining dark hairs in my beard – the white ones are steadfastly refusing to budge!!!  But, if I had to choose, I think I’d rather loose my hair than my sense of taste (and I mean food and drink, not sartorial!).

Reflection: it's not an exact science

Maybe one of the most challenging aspects of those first five weeks (before we began to fight back) was "it depends.. "

Half of you will be smiling.  This is one of my favourite phrases. But to me in my profession, it is always followed by "...on A, B, or C" - as an engineer, it is my job to identify, understand and act on the impact of a system's context and content.   "If A, then B"...".  I see the physical (OK, computing!) world in clearcut understandable model driven ways.

How frustrating that the human "system" ain't like that. 

For a start, it's hard "to see/get inside".  And this was tough to take, when we discovered after the fact that biopsies can be hit-and-miss.  While it is very unusual (I must emphasise it is a very very rare outcome), the biopsy on my liver (to confirm the Mets were from my bowel) missed.  So a 2nd, this time on the primary was done - it missed too.  Quote: "hummmm... Two on the trot... That's a first in 6 years!".  And then the 3rd (liver again) only "grazed" the tumour, albeit enough to confirm the diagnosis. 

(Thanks to a close friend, who explained how these things happen - you made a difference. And also just to say these setbacks did not delay the fightback in any way.)

And of course treatment/effect is a whole new experience...  Pause… um... Maybe not... The high power computing models used to aid the development of folfiri and its friends are far superior to the tools I've had to use in IT systems design!

Seconds out, round 2

Am I sitting comfortably? Yes, completely.

These "airline seats" make it more like a lounge than a chemotherapy clinic.  And the attentiveness and professionalism of the nurses is only matched by their care and consideration.

There is such a strong sense of positive "can do" thinking - not only here, but throughout all of the NHS's cancer departments.  In so many ways this has changed my perception of cancer; it seems to me that everyone in all the medical professions see it no differently than anything else - it's the rest of us that put it into some kind of dark place.  In fact, of all the human physiological failings, I'm rapidly realising there are far, far worse things that can befall our bodies.

Half way through my three infusions, looking forward to Peter the pump... Let's hope for the same (lack of) reaction in the next few days!

First cycle - so far so good !

Wow, I feel I have been so fortunate.  Having just posted some thoughts on "being normal", I'm delighted to also say I am finishing my first two week chemo-cycle feeling physiologically very normal!

Yes, I know we had a false-alarm hiccup with my temperature last week, but overall side effects have been minimal and restricted to the "oh yes, everyone get's that" type - some nausea in the first few days, followed by a sensitive mouth and other digestive ailments(!) in the middle of the fortnight; and pretty much nothing in the last few days!

Such are the amazing advances in chemotherapy over the last few years - no longer is it the "blunt hammer" I remember from 20 years ago (my first second-hand experience); today it is an amazingly refined treatment:  "hit the spot(s) and support the rest".  Even better: having discussed my few side-effects with the (superb) nurses at the clinic, it seems there may even be remedies for my few "ailments" in the coming cycles!

We start round 2 tomorrow...

Reflection: to tell or not to tell...

You know me. I guess it was inevitable that I'd not keep this private - my decision to "blog" shows it to be self-evidently true that I'm cr*p at keeping secrets. 

But, as I have discovered, when something like cancer strikes many people choose not to "tell everyone"; preferring to rely on a close knit group of family and friends, while otherwise trying to be as normal as possible with the rest of their world - normal is good.  Others such as me take a different approach, deciding it's best if everyone knows - after all., it's going to have the biggest impact on your life, and openness has to be (and this is only IMHO) the best approach.

I now see each to be equal.  It is not about actions, it's about outcomes.  And the outcome that is vital for me is "normal".  I now see that, whichever Strategy(sic!) I had chosen, public or private, it would be judged against the Goal of carrying on.  For me, "public" was right.

I now know with great clarity that - for me - "being normal" in spite of everything is proving to be vitally important (OK, three visits a week every other week to the clinic for chemo is not "normal"!).  Put otherwise, when all this exploded at Christmas, my instinctive reaction was to stop so many things - things that, actually, continue to be a vital part of my life.  That would have been a mistake.

So thank you for being part of my "normal" (even if some of this normality is virtual!)!

Footnote
I have belatedly realised that such dramatic, equally valid differences are evident in those on the receiving end - you.  Some "embraced" the news with immediate empathy, sympathy and offers of support; while others needed time to process the shock, deciding more reflectively how to react.

In other words, I'm sorry.   I now know that my ready-fire-aim style can be uncomfortable, and never more so than with something like this.  I now know I need to be more empathic, matching my way-of-being more carefully to yours.  As Diana says, I'll learn a lot on this journey...

38.1

That's not good. Well, it'd not be if my temperature stayed at that level....

Having had a remarkable good first few days, I woke yesterday again feeling OK - until I got up to shower. Whoopsie... fainting feeling... maybe I'll have that duvet (half!) day!!!   Being sensible is good.

Had a gentle afternoon, adding up and taking away, preparing for a committee meeting in the evening but, feeling tired again decided to snooze before dinner... and got a temperature (37.6). Now this is not good, since chemo damages the immune system, and I need to watch for infection - when it hits 38C I *have* to come into hospital to check and if necessary have antibiotics, following a clear and rapid process.

So we had dinner and I checked again - damn. 38.1C. Call the emergency line, quick discussion, decide I'd better come in anyway (no other symptoms, evening temp is always up, better safe than sorry). Well, talk about cautious - which btw I think is a good thing: even though it was back to 37.x when I arrived (19:00 last night), they decided to admit me and administer an i/v course of antibiotics overnight. "But I'm fine!!!". "Yes, but...!". so and ECG and chest X ray later, I might be home this afternoon! Being sensible is good.

<Later...>

In the end, everyone agreed we took the right decision - "whatever the likley reason, if it hit's 38 goro A&E!".  And everyone also agreed the most likely explanation was a reaction to the effect of the chemo.  (Everyone also agreed that it is possible to track temperature too often!)

The fightback has begun!

So, where to start?  Maybe “today" is best, I’ll reflect on the last six weeks later.  At this moment I am well.  I am very well.  Ridiculously well.  The first two-week cycle of chemo (Folfiri) finally began last Thursday, with the 46 hour infusion of flurouracil finishing yesterday - we really feel that we have, at last, started to "fightback".

So far, I’ve experienced none of the anticipated side effects (bar very slight nausea which was rapidly fixed by the prescribed anti-nausea drugs) – maybe my well being is actually due to the steroids they prescribe to counteract the effects of the chemo!  The second cycle begins a week on Thursday – we hope the side effects stay away, although we do know that some of them tend not manifest themselves for a few cycles.

It was a great idea to invest in a Portacath – a small device fitted permanently into my chest, allowing easy access to my “superior vena cava” via the jugular vein(!).  Even though it’s cost us “a few pennies”, it’s turned out to have so many advantages over the standard hickman-line – this decision, along with others we’ve had to make based on the superb advice and support we’ve had from my surgeons and oncologists, has eased my physical situation enormously.

I’ll come back to reflect on the start of this journey another day, and hope to post more blogs as I travel this road over the coming months and years.

Ian's personal blog

Almost 6 weeks ago I was diagnosed with bowel cancer and liver metastasis.  Since then an almost innumerable number of people have reacted with their love, prayers, hope, encouragement and support.  Many have said they want to keep up with my progress(!), but wonder how best to keep in touch... quite a few suggested I start a blog...