Take two parents...

Take two parents,  three children + partners,  and two under 5s; mix thoroughly and enjoy!

Normally, I'd steer clear of "newsy news", but these last few days have been so poignant, I feel the need to say something.  From midnight mass to the opening of simple presents given and received with pleasure on Boxing Day, it's been... complicated!  On so many levels, it's such a normal,  wonderful Christmas; as any have been in the past, but in other ways so different, so complicated.  Simple joyful moments have had me in tears, while others have passed almost unnoticed until later.

Today will be the first time everyone will be here, from 3 to 87, so I am particularly pleased with my special present of a couple of extra steroids!

Presents... Last year was so focused on one huge present... Saun the stent. How different this year,  with 10s of little gifts, equally carefully chosen by the giver for the receiver... and not a single one costing a fortune and none needing a battery, just care in its selection.

100! And 365!

Today is the first anniversary of my admission to hospital and diagnosis.  And this is my 100th posting to this blog.  Two enormous milestones.

What a journey it has been.  Such a roller coaster (but now of course more like a carousel!), with many downs & ups and unexpected twists & turns.  But, while the "downs" have sometimes been deep, black and occasionally almost impossible to cope with, there have been an amazing number of "ups "and "positives" as well.  And it's those positive experiences I want to celebrate today:

• the joy of blogging!
• The beauty of the English countryside (viz. our commute to the clinic).
• The pleasure in "physical therapies" - McTimoney, Bowen and Reiki.

• The skills and flair in a Surgeon's hands.
• The knowledge and finesse of the Oncologist.
• The care and humanity of nurses throughout the NHS; in cancer care, A&E and on the wards.
• The capacity and capability of the NHS, in 2014, in the face of huge pressures.
• Free, open access to amazing technology; from Peter the Pump & Sean the Stent, to SIRT & keyhole surgery; as well as to today's chemotherapy and the innovation of Monoclonal Antibodies.
• The resilience and robustness of the human body (five hospitalisations, every one overcome!) 

• The realization that I have not wasted a moment of my 57 (and counting!) years.
• The privilege of (finally!) understanding the impact I seem to have had, professionally and personally on so many people in so many places.

• The support, love, prayers and thoughts of so many friends, day by day, every day, for a year...
• ...and new friends made amongst my fellow patients in the clinic - you all inspire me.
• But, above all, the unwavering and unending love and support of my family, and beyond everything, Diana.

This time last year I was dying.  This year I am living, as alive as I have ever been.  This Christmas, more than any I can remember, means so much in so many ways.  In particular I am reminded of Dave Allen's powerful thought "May your God go with you".  May I refine this, and say at this time "May your beliefs nourish you".

Have a peaceful, joyful and relaxing (or invigorating!) Christmas,

With all our Love

Ian and Diana
23rd December 2014, 100th posting.

Everyone's pleased

It's been a busy week of appointments: we saw my oncologist on Monday, then a pleasant day of treatment Thursday with nurses who know me well, and finally a review with the SIRT oncologist Friday morning - and all three said the same thing - "wow! You look great!" which was itself great to hear.

And indeed I do feel great.  Putting on weight and muscle tone (no need to think twice about standing up or tackling the stairs).  OK, maybe I'm not back to what you'd call "normal" (whatever that may be!), but - to refer to a number of blog postings right back at he beginning of this journey, I still believe being "normal is good":  in other words, doing normal stuff physically, intellectually and emotionally is good for me... well, I suppose I have to admit that while I think I'm managing the first two reasonably well, my emotional self will never be the same again!  (I case you were wondering - I'm much more emotional, often tearful - which Diana says is good!)

Changing tack a little - believe it or not, this is my 99th posting to this blog.  Oh boy!  99!  And it just so happens that next Tuesday, the 23rd December, is exactly one year since my admission to hospital and diagnosis. So  I plan on "recognising" both facts with my 100th posting on the 23rd.  I'm drafting it now...

What will he do next?

Go to Burger King!!

Yep,  BK... We were on our way home from our physical therapist(*)  and the urge overtook me... a burger!! Double cheese burger with bacon, plus fries.  And, do you know, they don't do green tea!

But that's not the only highlight of the day... I'd been pondering how careful I need to be over Christmas re food: I've been very careful to stick with the food stuffs I was advised to eat following the operation, and wondered if I could have a "break" for a few days... A quick call to the excellent support team came back with the answer from my surgeon... "you can eat anything now, and not just for Christmas"!!

Wonderful news! I still have to be careful with foods that might compromise my immune system (anything that might have bacteria on or in it like soft cheese and lettuce), but otherwise ANYTHING!

So what to have first? Something I've missed for 11 months...  Diana's chocolate stuff! (recipe on request). An emotional moment.

(*) another brilliant session, a blend of CST (tummy) and - for the first time in ages - massage on my back and neck (McTimoney)

Still going strong II

This is great.  I think the carousel has Christmas lights on it!

Just to say I continue to feel very well, and that even the expected cyclical dip (due last Thursday/Friday) was really rather shallow, just as it was last time; and I was more-or-less back on the "up" for dinner on Friday night celebrating my father's 87th birthday with my brother and Diana, and then on Saturday getting to our monthly village/church "Big Breakfast" in the village hall (and more bacon butties!).

Also to say Diana and I are just back home from our regular pre-treatment review with my Oncologist, who continues to be thrilled (there is no other word) with my well being.  So bring on "round 5"!

CEA numbers - update

Well I never!

My Oncologist was facinated by my story (weaving together "patient perspectives"and how we react the "CEA measurement scale"), and has promised me some "meaningful data" in the current 2 / 20 / 500 / 900 format, for me to convert to  the "Richter like" 3 / 13 / 27 / 29 scale; so he can better understand the implications.  he has also promised, that "if it works" he is more than prepared to take the idea forward!

Watch this space...

CEA numbers - footnote

To my delight I have had far more comments and emails about this post than ever expected - all saying the same thing:  "we agree!".  Thank you for the encouragement, and I will if at all possible raise these ideas next time I see my medical team.

Out and About

I'm really lovng this new "carousel" metaphor - while today has been slightly "below the curve" (it's that time in the 2 weekly cycle), it's been no where near as deep a dip as in months gone by.  Mind you it's not surprising; the previous days were positively energetic - I don't think I've been out-and-about for 5 consecutive days in many months!...

Having enjoyed a family weekend for H's birthday the previous weekend, I was thrilled last Saturday to walk down to our Church's annual Christmas Fair, where I saw more friends than I could have imagined - and who seemed as pleased to see me as I was them!  The bacon butties were amazing!

Sunday saw us out walking(!) across the village to visit close friends for the morning (great chocolate cake, P!); then Monday off for CST followed by afternoon tea (creaam tea!) with one of Diana's cousins.

And more ringing of bells and more morning goodies yesterday!

Anyone spotted the underlying theme?  Yes, I am pleased to say I'm holding onto my sense of taste and managing to not only keep my "intake" well up, but to still be enjoying food and meals.  Pity it's not being reflected in body weight, but I do feel fitter and my muscles appear better toned (two flights of stairs without stopping!), so hopefully we remain on track for a good Christmas!

CEA numbers frighten me... needlessly! (aka, looking at the world from the patient's perspective)

Apologies - this is a long, and at times technical post - but it represents, for me at least, a really classic example of the challenge the doctors face in being "patient centric"; one of my biggest interests in the management of serious illness by the medical professions. 

 In summary -

• If a key "wellness marker" in a healthy person is a "2", and cancer patients aspire to a "20", then if my marker is "500", then that's frightening and, more importantly, appears to be quite misleading.  
• But if a different numbering scheme (such as is used for deciBels and the Richter Scale) were used, these marker values would be a "3", "13" and "27" - far less daunting, and a much better indication of reality.

But before getting into detail, let me explain why this is of such interest to me.  Consider three points of view - those of:

1. The Oncologist - whose primary focus is on the cancer and its treatment regime (with a fair amount of interest in the physiological impact that has on the patient).
2. The Chemo-nurse - whose primary interests include the readiness of the patient's physiology to take that regime, as well as their real-time and between-times state of health and the management of these "side effects".
3. The Patient - whose many interests include an understanding of "how am I doing?  Am I getting better or worse, and can I cope with more?"

Notice the difference between the "outside-in" centric viewpoints in the first two cases, but the "inside-out" emphasis of the third...  This is starkly exemplified by the way the CEA number is presented:  while the professionals understand the underlying meaning of the number itself without any "emotional baggage" about the absolute values, the patient just sees "500!!!!".  We need some way of retaining the number's meaning for the Oncologist and Nurse, while easing the nerves of the patient...

 The Detail -

The CEA number is one of the markers used to determine the activity level of colon cancer.  While it is never used in isolation by the medical staff - and anyway they are far more interested in its change than absolute value - it can be hugely "influential" on the patient as an easy way of comparing notes with other patients, as well as their own "level of illness".

  This next part is for anyone with an interest in maths.. and that means you!!!!

It seems that the CEA number, unlike almost all of the other numbers we get to tell us "how we're doing" is not what mathematicians call an arithmetic progression, but closer to a geometric progression.  In other words, most other "markers" and indicators change in a simple way - the difference in significance between a "2" and  a "3" is the same as between a "12" and a "13", or a "72" and a "73".  Therefore if my number is 12 and yours is 2, we can say we're "pretty much the same" (the difference is only 10) whereas the difference between 12 and 72 is "massive" (a whopping 60!!)

But geometric progressions are different - the numeric gap between successive values gets bigger and bigger, rather than staying constant.  And the CEA number seems to be one of these geometric progressions - as it gets bigger, the gap also gets bigger between "significant numbers", meaning the impact of a change from "2" to "3" (1.5 times bigger) is the same as a change from 20 to 30 or from 200 to 300.

  OK - you can start reading again...

A "good" CEA value is a 2 or a 3 - that'll be your number.  An acceptable target for a cancer patient is in the 10's.  But mine was 900 two weeks' ago!!!!  Oh boy, that's BIG!!!!  It's now 500, and all the professionals are delighted.  But 900!!!! even 500!!! when the target is 20-50!!!!  Oh crikey!!!!

The CEA number does not work like that - it seems the number "runs away from you" as it gets bigger - hence the "ease" with which a huge chunk (400) was lopped off my number in just 14 days (and of course, in much the same way, it can increase in a frightening way in the first place).  In other words, it just so happens that the difference between your level of a "2" and my target of say "20" is the same as me getting from "200" to "20", or "500" to "50" - each bigger number is 10 times the smaller one.

Which can of course instil a false sense of the challenge - "only another 450 to go (500 to 50), and I managed 400 in a fortnight!".  The reality is that getting from a 900 to a 500 has a difficulty of, say 1.8 (900/500), whereas 500 to 50 has a difficulty of 10 (500/50) - which is why one inevitably fails to see a "constant improvement" and feels depressed as a consequence...

Is there a different way, which would still satisfy the medics as well as not frightening me?

YES!!! It's to adopt the same approach as is used for other similarly behaved measurements, such the strength of an earthquake (the Richter Scale) or deciBels, as used in audio and electronic systems

 OK, more maths...
The trick is to use a logarithmic scale, in which the absolute number ("2", "20" or "900") is converted to it's "log-base-10" value. For example a "20" becomes 1.3.  If the same convention is then used as for deciBels, we'd refine this to a "13".
   You can start reading again...

In this approach, a "2" becomes 3, a "20" is 13, "500" is 27 and "900" 29.  This instantly does two things:

• It's less frightening - if my target is 13, which is a whole 10 higher than a healthy 3, then getting from 27 to 13 is about the same "gap", and therefore I feel happier that I need "only get half way" to the healthy number.
  
  
• It presents a more accurate representation of the number's meaning - the reduction from 29 to 27 seems to be is a more realistic representation of my recent "improvement", without giving false hope of "getting to 13 in two weeks" - rather, if it were at all possible to achieve to a smooth trajectory downwards, then three months might be more reasonable... not that cancer is ever reasonable!

Avast(in) there me Hearties!

Roughly translated from "Pirate" to "proper English", with a little artistic license, this is "Hold on a moment chaps, let's jolly well consolidate our position, what?"

Oh boy!  Now we ARE fighting back!  For some while now, even before "those 10 weeks", I've been looking forward to this moment... After all the preparation (basically the operation to remove Sean the Stent as well as the colon primary, allowing total focus on the liver), as of Thursday's treatment (cycle 4 of the new era) we now have all THREE available points of attack on my liver's Mets in place:

1. SIRT - OK, it's done what it's going to do, we just do not yet know what this "radio-active scalpel" has done (the scan on 30th December, with a consultation on SIRT's outcome early in 2015).  But given the way I am feeling, we have to assume its effect has been positive!
   
2. Folfox (which when combined with SIRT is briefly known as Folfire!), continuing to do it's best at killing things - given my current wellness, my Oncologist has raised the concentration of the specialist "...ox" part of Folfox, Oxaliplatin.
   
3. Avastin (aka Bevacizumab), the MAB designed to starve the tumor of blood and therefore ensure it "withers" - I assume to make it more susceptible to the Folfox cocktail.  While it has no "real-time" side effects of it's own, it does raise a couple of existing risks (blood clots and colon damage), so I am being particularly fastidious in my Tinzaparin injections!

And I feel so well!!!   Which was wholly confirmed by my "bloods" showing all my vital signs (such as red and white blood cells, as well as overall liver functions) to be either at or above average expected levels.  Even my pulse, blood pressure and respiration was confirmed to be as good as it's ever been!  If only I could put on a little weight - mind you, holding my own" is pretty good in the circumstances.

Mind you, Thursday did try our patience a little - 9 hours in the treatment chair!  Well, quite rightly (with an engineering level of caution) the process includes a "rest" after each new treatment, to ensure any negative reactions can be properly attributed to a single cause, increasing confidence in their restorative treatment.  So I has an hour's rest after the Avastin (which itself was administered slowly this first time).  Then the increased concentration of Oxaliplatin had to delivered more slowly than will be normal in future.  This then accentuated the consequence of our failure to spot a stopped pump, meaning another infusion had to be given afterwards and not at the same time as the Oxaliplatin.

Still I got A LOT of work done!  Both "home" and "professional" - thank heavens for wifi!

So we are, at last, hoping we can consolidate, with any number of "regular" 2 weekly cycles ahead of us, allowing us to continue riding the carousel...

Life's a Carousel!

We're still going strong! 

Apologies for my silence this last week and a bit,  I know this often means a dip in form, but not this time.  Rather, we've had a great week with a marvelous family weekend in the middle.  So, instead of the roller coaster, it's been a Carousel ride, gently undulating between "great" and "slightly tired".

The family weekend was in celebration of H's birthday, and we managed to get everyone here - a double bonus since Christmas will be more a case of "ships (= children) passing in the night" as A and S each spend different parts of the Christmas period with their wive's in-laws (that's, M and L's parents!). So an amazingly vibrant and joyful "11 for dinner" (ages 3 to 86) last Saturday and Sunday, and nothing prepared "specially" for me!! (ref. "diet").

I have to admit to some trepidation before they all arrived - more than anything else, family can bring out all the emotions in me, as well as highlighting the "reality" of things, but it is a delight to remember one of the most wonderful couple of days in months - I didn't want it to end!

The next three days were a little more tiring; still well above the line (those carousel horses make a wonderful metaphor!) - but not a surprising consequence of the weekend; Diana was a bit shattered too after coping with everyone, including me!  So Thursday (treatment day) came to the rescue, giving me just enough of a boost (it'll be the steroids!!!) to lift the carousel horse up again...


(*) Apologies to "The Band", whose track "Life is a Carnival" is featured on the movie sound track Album "The Last Waltz", IMHO one of the best rockumentaries around.