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.