Reflection: Empathy - and Viewpoints

It strikes me that empathy (not entropy, which is what my engineer's brain first had me write!) may be the most powerful of human abilities, and IMHO one of the critical aspects of any individual or shared beliefs in "how to be human"...

Diana (who's a trained counsellor) has observed several times how a blog is the world - my world, seen in a particular way - my way).  And for some time I have known that this perfectly parallels my professional world's notion of architecture and design, although we'd refer to my blog as a model of my real world, envisioned (as a view) from a particular viewpoint (my viewpoint).

And I now get it... when you look at my blog - from your viewpoint - your "need" from it is pretty likely to be something different than I might expect; because I am not standing with you, looking with you from your viewpoint.  You "get" what I "give" you...

• If your viewpoint is "How's Ian today?" you get a barrage of facts and figures and impressions and reflections that I might think interesting - but all your looking for is "Ian's fine"...
   
• But if your viewpoint is "How does a cancer patient see the world?" then maybe that's closer to my viewpoint and you therefore can "see more" of what you want to see.
   
• And if your viewpoint is "How does a fellow patient cope?" then that's probably looking over my shoulder, and we're seeing the same view.

In architecture (and as I blog A LOT about in ianchartersde.blogspot.co.uk!), this "real world/model/viewpoint" insight is a hugely important idea, one that binds a professional community together in the way they corporately choose to think about the system or bridge or building they are designing...

...but in the real world it's called sympathy and empathy.  Standing with someone, seeing and ultimately understanding the world through their eyes, in a way that allows one to walk or  with them is empathy.  Otherwise, if I choose to remain on my viewpoint and look across at you on yours, the best I can offer is sympathy.

So, from now on, if you feel I'm not "giving you want you need", I'd love to know.  Because one of the wonderful things about this journey is the realization how close I am to you, even if we have such different viewpoints!

PS:  my favourite search engine's response to "define empathy" includes a usage timeline... zero use to 1910, miniscule increase to 1950, and a huge increase from then to now!

"It does what it says on the tin..." (cycle 7)

(If that leaves you a little nonplussed, wiki the phrase, or search for "Ronseal"!)

Had a simple, pleasant day yesterday, having "the works" (MAB and chemo * 3) - it is a relief and rather fortunate for my treatment to be so straightforward, when I see how it affects some others, sometimes a single therapy can take so much effort out of someone.

But the great news is the side effect drugs do do what they claim to do!  On the last six occasions I'd taken the standard formula cocktail and, as predicted and blogged, suffered minimal primary side effects of nausea and sickness.  Sadly, last time, I had significant "challenges" that took me down both mentally and physically; which we then discussed with the clinic's brilliant Nurse Consultant, and who immediately tweaked my prescription.

Hey presto - those debilitating "challenges" have not materialized this time!  Instead, I enjoyed the side effects the "offending" drug was designed to overcome - in other words, that drug "does (indeed do) what it says on the tin"!  As it happens, the feelings of sickness are not unmanageable and seem to be temporary, so a very positive outcome.

net net - sitting here at my desk on a "Peter-Friday" afternoon feeling fine!

Minor Reflection:  

I was mightily impressed with the refreshing approach adopted by my Nurse Consultant - although my previous experience of prescriptions was wholly second hand, it was one in which the cocktail grew and grew, with medicines prescribed to treat symptoms; whether they be underlying or caused by other current medicines.  But not here.  Rather, the whole mix was discussed and refined, resulting in a reduction in number!  Another feather in the clinic's cap.

Cola, Rice Pudding, cup-a-soup...

...and a host of other things I'd never previously expected to "enjoy"!

A couple of cycles ago, I pretty much lost my sense of taste (not smell, thankfully) and as a consequence, at least in part, my appetite. So all those things I used to enjoy; good red wine, roast lamb, chocolate (well, I can still force that down!), cheese, bread and jam now have no effect on my taste buds whatsoever. :-(

But, and this is the bizarre thing, other foods I'd never dreamed of eating have become central to my diet because they do have "taste" :-) even if they are so "left field".  The last time I had Ovaltine was as a child - now it's become a staple source of energy, and not just before bed.  Pineapple juice or sparking lemon are now great "complements" to main meals (such a change from claret!).  And where would I be without rice pudding (cold, of course!), let alone "full fat" cola and cup-a-soups!

Coping with this change, particularly since it took 4 or 5 cycles to "kick in" and was co-incident with a lose in weight has been a challenge, but Diana has been magnificent in coaxing and goading me into a routine, keeping me at or above my daily calorie target, such that I have put back on some of the weight I'd lost.

These changes are of course expected cumulative consequences of the treatment and I count myself lucky that I do still enjoy some parts of my diet - not just these odd things, but very simple things like sparkling water (some therapies even make water hard to drink); it has been a deep challenge I now see I could not have understood before it happened.

Oh, and it remains true that Japanese green tea is the best drink in the world!

Running, running, running

Back from cycle six and a half, for the "odd week" infusion of the MAB - went so smoothly, I was out half an hour early!  And I'm delighted to say an "official" increase in weight of 3 kg!!!

Also met another blogger, whose positivity was truly infectious - you might like to check her out at awasandawillbe.blogspot.co.uk.

One of our daughters-in-law completed the London Marathon this weekend (way to go, M!) raising £2,500 for Child Bereavement UK, our daughter H is doing a "Race-for-Life" (Breast cancer) very soon, and our eldest, A, is already (honest!) in training for the Royal Parks half marathon (supporting Beating Bowel Cancer) in October... all receiving amazing sponsorship from the widest reaches of their worlds... it is incredible how the Great British Public react to the needs of others (for those of you overseas, check out "Comic Relief" and "Children in Need"!)

I am so proud of them, not only for running, but also because this is another example of "normal is good" - M was already enrolled in the London Marathon well before I fell ill, and H and A had both decided to run "anyway", my condition being more a direction finder on what to run for, rather than running per se.

One of the first things I said to them all, in hospital that monumental evening before Christmas was "normal course and speed..." - not only is it critical for me to have a sense of normal, in some ways it's even more important for those close to me to have even more "normalness" (while, of course recognising it's a different normality) - and I mean for them, not me.

Which is why I am just as proud of my middle son and daughter-in-law, whose #1 "normal" goal this year is to plan and execute a house move - putting just as much "normality" into that as running, running, running (which they do recreationally anyway!)

And Diana?  Running?  :-)  Sadly her back is not up for it, and anyway - who'd feed me up if she was out training?

A tough week, but with silver linings too

Went into cycle 6 (last Thursday) a little behind the curve - we know the Tinzaparin had already affected my tummy in the days before [edit: I'm told by those that know (the clinic!) that I am  probably mistaken, much more likely to be simple coincidence], and therefore before the side effects of the side effect drugs aggregated their impact on top; so hitting me a little harder than usual... and there's nothing worse than a man with a funny tummy... just ask Diana...

But knowing it's caused by the drugs and nothing else, and that it will wear off as they wear off is hugely important for our sense of well being - I'm delighted to say I'm pretty much through it now, back on a even keel and ready for the next "batch" tomorrow.  In fact, the clinic sort of expected this cumulative "nether regions challenge", and are likely to adjust the steroids accordingly next time around...  I so hope so!

Even keel, yes - but riding high in the water:  the one side effect of the side effect of the side effect control drugs (is that three !!!s?) is I've lost rather more weight than might be considered wise, so Diana's got me on a high everything regime...  and it's already paying dividends:  +2 lb in two days... wayhey!

Silver linings?  Friends!  The encouragement you automajically instil in me continues to keep us going - whether it be a chance conversation in the Post Office, a dinner party, or when a close colleague and deep friend of many years takes Eurostar from Brussels just to come and see me for 24 hours, it can do nothing but inspire...

Comment Alert!

(Just home from "cycle 6", which was as straightforward and pleasant as always.  Did manage to confirm my recent symptoms were caused by the Tinsaparin, but that they should abate for the next few days at least - the power of steroids!)

This post is to tell you I'd not quite got the set-up of this blog right:  it seems until now you have had to "register" to post a comment.  I hope this is now fixed - comment away!  But if this exposes any negative unknown unknowns(*), I may choose to moderate comments between your submission and it's appearance on the blog.  What's the (*) reference?  Donald Rumsfeld - he's one of my linguistic heroes!  And a known unknown?  Will internet 'bots swamp me with adverts?...

Side effects, but not of the Chemo

While my scan brought brilliant news, it did also show one fairly common effect of chemotherapy; a clot, in this case in my splenic vein.  No where near as worrying as a clot in the leg (DVT), but better-safe-than-sorry means for "several weeks" I need to inject a blood thinner into my tummy each day - and that's an experience...!

But it turns out the side effects of Tinzaparin are tiredness and tummy troubles, which have been somewhat annoying [edit: I now know it was more likely simple coincidence].  Still, it's only for a while, and in fact as I sit here now things do seem to have settled down.  

(And thank heavens for friends!  It is intriguing how good company lifts the spirit - last weekend was a great weekend of entertaining and being entertained; and we're now looking forward to visits from the continent!)

Reflection: of Patients

It may be stating the bloomin' obvious, but each of us have our own unique story.  What may not be quite so obvious is, as a group, there is an uncanny sense of togetherness as we instinctively recognise our stories are indeed unique, and how we relate to one another in a way that respects these differences.  

• Each person's narrative is accepted, simply, and with empathy or joy depending on their latest scan report, their reaction to the drugs, or simply their sense of wellbeing.

• And conversely news is given with obvious respect for the circumstances of the other; never overblown when good news, and simply, straightforwardly when not.

Such camaraderie, engendered by the attitude of all in the clinic, is not something you find every day...

Reflection: of Angels

Pick your favourite search engine, switch to "images" mode, and search for "cartoon equality justice".  All being well the first image will be a three picture cartoon, of three people trying to look over a wall, one tall, one average and one short.

Whether you agree with the labels, the way it distinguishes "equality" from "justice" (they work for me, although I might prefer "fairness" to "justice") is a brilliant way of summing up the care I and all my fellow patients are getting from the NHS and its Angels.

• Equality:  The processes and proceedures of the clinic, as I think we would all expect, must treat us all equally - we all get the same excellent service from the British NHS, without exception, who ever we are and whatever our need.
• Justice (or Fairness):  But the magic is then in the people of the NHS, who recognise we are all different, that some need more care and attention than others in order for us all to be able to "see over the fence".

(And I have to say, to avoid any doubt, that we all recogise without a moment's hesitation fairness means giving more to those who need more.)

Of Angels and Patients

Of Angels…

In therapy yesterday (just 3 hours this week, for Cetuximab) - and saw the chemo nurses prove they are Angels…  their computers went down, and they did not!  Yes, it clearly caused them problems (all chemo treatments need verification in real time), but did it affect the care they gave and their demeanour to us?  Not a jot.  OK, there were some delays, but only in the name of best practice.

And something else struck me.  There is, of course, a rigorous procedure they must follow with each and every one of us – the same basic steps, but always with specifics associated with each and every treatment.  For example, because I have Paddy (the Portacath), I need specific “preparation” that’s different to other devices, followed by particular “pre-meds” (different on odd Thursdays to even ones), then either one drug (even Thursdays) or multiple drugs with intermediate “flushing” (odd Thursdays), then finally a “flush” to leave Paddy in good shape for next time.

And everyone’s treatment follows the same formally defined procedure… except we’re not “treated the same”.

Every single one of us is treated uniquely.  The way each nurse interacts with us is wonder-fully different, so “right” for the way each of us “is”.  They seem instinctively able to blend the formality of a carefully controlled, potentially harmful treatment with an ease of presence that always fits the needs of the patient.  Truly angels!  Frazzled angels sometimes, but always angels.

…and of Patients

How different we are!  Some, maybe quite a few seem to have the sort of support network you’d hope for, supporters (family, friends, colleagues) “witnessing” their journey; which in some cases is heart-rendering.  We are the positive, cheery ones, who seem able to engage and “banter” with the nurses and each other, and (almost) always have someone with us throughout the session.  Some simply need to be quiet, coping in their own private way, usually with someone “close by” walking gently with them on their journey.  But it’s sobering to see others, and it’s not a few, who are always alone, who rely on Hospital Transport to ferry them in and out, and who appear to rely on their own wits and strength.  That’s tough – and the nurses know it; caring for those who need more, more.

Whether they take a “conspiratorial” approach, bantering with those who cope “mischievously”, a respectful style to those who need space, or an overtly caring manner to those suffering their disease, often alone, our nurses always seem to know how we are and what we need; while always making sure our treatment is exactly right.

"The Cranes have landed"

Until now, I had refrained from saying anything specific about the love, prayers, and thoughts so many people have generously and unconditionally given me.  There are so many of you and so many experiences that I have chosen not to refer to any one specifically.

But, and as a portent of today's good news, one of the most wondeful gifts I have ever received arrived in the post yesterday.

1000 (yes, one thousand) origami paper cranes, each no more than one and half inches long, have been folded by a very dear close friend in Japan over the last few weeks, threaded in a traditional manner onto strings, and sent to me...  and they "landed" here yesterday - bearing one wish, for my recovery.  Oh boy.

(As you may discover via wiki and your favourite search engine, it is an ancient Japanese legend that promises anyone who folds 1000 origami cranes will have a wish fulfilled...  and in this case, that wish is focused on me.)

Good News!

I am delighted to report "It's stable!"

Specifically, the official report on last week's CT scan says "Overall, the appearances are that of static disease", but there are other indicators that may even suggest it's reducing, if ever so slightly. 

For example my "CEA" number now seems to be falling, having been on the up in the early cycles of treatment (suggesting things were at that time growing slightly but are now waning), and the size of the larger tumors in my liver are slightly smaller than they were.

Still a long way to go (5 cycles down, 7 to go on the current schedule), but wow, we are fighting back!!!!

Reflection: What is, is

My CT scan was quite straight forward, not withstanding the need to drink 2 (TWO!) pints of black current cordial - first time I've had that since childhood!  Of course it wasn't just cordial, the important ingredient was imaginatively called "contrast"...

It is weird though, realising that "whatever is, is"; it's the measurement we're missing, whatever it turns out to be... Which we hope to get next Tuesday... that would be 1st April, wouldn't it!

In the meantime, all is calm and serene... down with our grandchildren and their parents(!), and they (the grandchildren, not parents!) are eating dinner like the stars they are! Bath time next... Gulp...

Into a routine

It does seem to becoming routine now, which is probably a good thing.  In the clinic being Cetuximab'ed, waiting for a cup of tea!  I suspect this (*) might mean more widely spaced posts, but I promise "news" will be reported.

For the moment, though, I do have to admit to a degree of trepidation before the CT scan on Tuesday, the first moment we'll have a real sense of course and speed - thank heavens we're away to London for the weekend, it'll be a welcome diversion! (Afternoon Tea in a well known hotel, and then the family off to see Warhorse, while I watch the DVD!)

(*) no, not waiting for a cup of tea, the fact that it's becoming routine, and I'm coping well!

Steady as she goes

It's been a few days since my last entry (which was while I was being "infused"!)... so no news is good news? Yes, mostly!  Glad to say my face has largely cleared up and hair seems stable, so outwardly pretty good (although my chest would make a great dot-to-dot!!)

Tired of course, given where I am in the cycle (just finished steroids); and the other few side effects have been a little more noticeable (we always expected this) - hopefully they will abate over the next few days as they have before.  In any event they've not upset my "bloods", so back in on Thursday for more Cetuximab!

Four

Four.

Today is cycle four - and four seems a good number, not just cos its the number of cycles before my scan...

My favourite LPs include Led Zepplin IV ("Black Dog", "Stairway to Heaven") and Supertramp's fourth album "Crisis, what Crisis?"  (OK, so that's not so significant... Pink Floyd's "Wish you were Here" was their 9th, Genesis's "Trick of the Tail" was 7th and BJH's "Everyone is Everybody else was their 5th!)

My fourth job turned out to be my ultimate career (IBM)

Our fourth home is where we are now (and we've been here 4 years)

And of course my four "friends" - Boris, Peter, Paddy and Sean!

Ups and downs

I know that thanks in no small part to all of you; friends, family, colleagues, and of course the wonderful people in the clinic, these last few months have been wondrously positive - I enter cycle 4 tomorrow; which will mean I'm a third of the way through the planned programme of therapy, and I am still "well".

But I am increasingly aware of the next major event - my first scan, on the 25th March.  What will it show? It's a  bit of a shock to realise that, actually, we still have no idea what's going on inside; my last scans were in early February before we began the fightback.  Yes, I've all the right side-effect symptoms to indicate something positive is happening, and I know the few attributable aches and pains I had before chemo began are not there any longer, but it's still tough some days "believing".

Yesterday was such a day, with too much introspection - we know my Achilles heal is thinking to much!  But then I see the news; whether it's about an individual, a plane, or a nation; and things come back into perspective.

What a lovely day

Wow, what glorious weather!  Matches my mood perfectly, given how well I am feeling.  Spent this morning outside, DIYing; making a couple of cloches for the greenhouse - did I ever think I'd be doing DIY again? 

Not quite at 100% I have to admit, but it did encourage "measure twice, cut once" - no energy for cutting twice!  And a couple of sit-down breaks were welcome too, albeit in the shade :-( since direct sunlight is a no-no for my now spotty complexion... a small price to pay for the (hoped for) results of the MAB.

Have a lovely day!

Of hair and spots

Back in the clinic, for a second dose of Cetuximab, and feeling pretty good. Had the usual (minor) discomforts since the weekend, maybe slightly more pronounced than cycles 1 and 2, but quite tolerable.  Seems the MAB won't at least yet, exacerbate things.

It has, though, had one desired(!) side effect... A rash on my torso.   Nothing elsewhere yet, particularly nothing on my face or neck ("give it time!"), but I'm delighted to have the rash because they say it's a good indicator of the MAB working!

As for my hair - almost all the black ones in my beard have now gone, but the white ones have steadfastly refused to budge.  And my head?  "A mild thinning" according to the family - except my eyebrows which have each lost their outer quarter.

All in all... Steady as she goes.  We just hope it's working!

I almost forgot... all this and the NHS too

IMHO, quite the most remarkable organisation in the world - from the moment I saw my GP in December I have been in the excellent care of the UK's National Health Service.

Free at the point of delivery.  Excellent care and consummate skill.  No ifs and buts.  Yes, the pressures on it today are staggering, but if every organisation had people with the dedication and focus of the NHS... Oh boy.

Reflection: talking of Aces…

I have come to realise there is a real, wonder-full, positive aspect of where I “am” now.  I am so lucky to benefit from the miracles of science (Sean the memory metal stent), medicine (my chemo regime and Paddy the Portacath) and engineering (Peter the pump) that are available in 2014 here in the UK.  I have a truly outstanding level of medical care.

I’ve marvelled at Sean the “memory metal” Stent before – the amazing way it is packaged into a long incredibly thin mesh tube that can be guided into the smallest of openings, where, once it is released from its case, it shortens and expands until it is an inch wide and 8 cm long (sorry for the mixed units!); completely opening the bowel and transforming my life, literally in seconds.

But that’s not all.  The advances in the way my drugs are given are incredible – not “by mouth” as they once were (allowing the digestive system to do it’s worst before they got anywhere), but directly into the “superior vena cava”, getting it directly to where it needs to be (thanks, Paddy the Portacath!).  And the manner of their infusion, particularly the 46 hours taken to infuse fluorouracil (5FU) is just as amazing…
 
Do you remember “half life” in chemistry at school?  The time taken for the concentration of something to half?  The effectiveness of any medicine is directly related to its concentration in your system, so its “half life” is critical to its efficacy.  In other words, if 5FU was infused for just a few hours, it’s effectiveness would immediately begin to decrease.  

So, first the nurses administer a “bolus” (the initial infusion) of 5FU, quickly getting the drug’s concentration to the right level. Then I have a much, much slower infusion to keep the concentration of the drug topped-up to the right level, replacing that which is naturally used up or broken down in my body.  So rather than “just a few hours” of effect, I get over two days worth!  

Enter the third star of the show – “Peter the pump”.  In a way, this is the really clever bit – without Peter, there would be no practical way of accomplishing that extended period of efficacy, without keeping me in hospital for 2 days.  And it’s such a simple device – imagine a coke-can sized bottle, partially filled with balloon full of 5FU; and the bottle is pressurised.  So, over a long period of time, the balloon’s contents are gently squeezed out, down a tube and into Paddy…  quite brilliant.

(Sorry, I must not forget why I need Boris the bag:  Peter has to be transparent (so we can see the deflating balloon), but 5FU is light sensitive.)

It really was an “Ace”!

Just read a really interesting and encouraging article in today’s Daily Telegraph on monoclonal antibodies (MABs), and the wondrous effect they are having on cancer treatments, alongside traditional chemotherapy.  

It really was an ace to have the “wild” variant (and therefore receptive to the effects of Cetuximab – the clue’s in the last three letters!) and not the “mutant”…  :-)

And just to say - feeling really quite good today, inspite of expecting it to be "day 1 of quarter 2" in the cycle.  Had a blood test this morning, that confirmed I'm holding up well to the tratment so far, so on track for an other infusion of Cetuximab on Thursday.

The start of Cycle 3, upping the game

Just home from the clinic, having had Peter the pump removed.  Had to be in all day Thursday, since the first dose of Cetuximab was a double, followed by “a break” before the rest of the cocktail was infused. 

Delighted to say no side effects again so far (but I am still enjoying the effects of the steroids!) so I was able this morning to enjoy our village’s monthly “Big Breakfast” in the Village Hall – over 150 full-scale breakfasts served with a smile to anyone (everyone it feels!) in the village… a great community event… amazing.

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...