Party Party Party

In bed by 10.45pm, woken at 12 by WWIII outside.
Half the neighbourhood, spends their Christmas bonus on fireworks for New Year or so it seems. Miraculously the boys slept through, while we grumbled our way into the next decade..

A salutary reminder

When you're at home, in your own environment, you develop a pattern over time. A daily rhythm - you know your limits, what works, what you can and can't eat, how much sleep you need etc.
Now that we're away from home, i've become disorientated from my straight and narrow path and i'm now learning how quickly all this steady progress can go to pot.

I'm lying in bed, feeling as sick as a pig.

Good food, great company and a familiar place (Claudia's sister in Bielefeld, Germany) is a potentially dangerous mix. Fine if you're particularly disciplined.
If you're like me, you get lost in the moment.
Conversation, croissants, coffee, cheese, nutella, salami, orange juice - NB this is a continental breakfast!
I'm forgetting things that have been carefully learnt - subtle mealtime choices that make the difference between a good day and a nauseous one.
I have to remember (and i'm reluctant to) that i'm not 'normal' anymore, in the eating-department. I cant just forget or i face the consequences.

Christmas

If you're still not getting into the spirit by now, its getting a bit late.

So if you're having trouble, this might even possibly sort you out...

Rejesus Website Karaoke Carols

Its so good, it makes the King's College carols service sound like dragging fingernails down a blackboard.

5 months on

Claudia and i were re-living some of the immediate post-op moments last night, over pizza in our fab newly opened local.
While she has a fantastic memory for the details of what happened in the day or 2 after the operation, i have only vague recollections.
Maybe its my subconscious suppressing that nightmare time. Maybe it was morphine saturation.

Well, 5 months on and the Beau's Lines - nail furrows - caused by the trauma of the operation have grown out. Look at this google link to see examples. Mmmmm!

As far as eating is concerned, my 6 mini-meals-a-day schedule has become a bit blurred. I now mostly fit in with the 3 main mealtimes at home with a fair amount of grazing in-between.

I always hoped that Christmas time would be a recovery threshold and it looks like it will be. Happy days!

Getting into the spirit - part3

The internet is amazing isn't it?
Slowly but surely over the last decade, it has snaked its way into our lives, to become an indispensible means of communicating, information gathering and gemming up on other people's mind-boggling trivia (like mine for example!).

Things like: did you know that its only 8 miles from Nazareth to Bethlehem? - if you live in Pennsylvania (US), that is.
This was the first option Google Maps threw out when i wanted to know how far Mary and Joseph had to travel.

The recommended journey through (today's) Israel avoids the West Bank, is about 100 miles and will take 1hr 50min in a car.

Poor donkey.

follow the link below to see some academy award deserving nativity musical talent, in honour of our much-forgotten 4 legged friend

Little Donkey

aaaaah

Getting into the spirit - Part 2

Following my Advent rant, click on the link below to see:

A Nativity Play in the wrong hands

Banned after Ofcom received nearly 800 complaints, this commercial was deemed to be in breach of Advertising Standards Code Rule 6.1 (Offence)...

The Nativity Story... offensive material... hmmm.

I love it!

Getting into the spirit

I can remember saying during chemotherapy, "bring on Christmas!!"... and we're nearly there.
In those dark old days, i reckoned the worst would be over by late December and that i'd be a good distance on the road to recovery. That just about sums it up which is great.

Christmas is a funny old time. On the one hand it marks the tentative arrival of history's most famous infant. On the other, it marks a frenzy of consumption on a quite unimaginable scale.
Which ever way you look at it, we are being encouraged to celebrate the retail madness, and pass by the "reason for the season".
It fascinates me to see the lengths organisations, companies and councils will go, to avoid references to the word Christmas or any christian aspect of it.

I was in the bank the other day, which was bedecked with colourful adverts for Merry savings accounts, Festive mortgages etc. Not an angel or shepherd to be seen...!
We recently bought Max a childrens magazine stuffed with seasonal stories and activities. Score: Santa/Elves/Rudolf - 100 / Baby Jesus - 0.

Has the Nativity Story become offensive material (not PC enough) or become so irrelevant that its just not worth the mention?

There are still zillions of people who celebrate the Christ-part of Xmas, so it seems quite weird and myopic that large parts of the media ignore it. Or is there something more sinister at work? (don't go there Pete - not this time!).

Anyway, Claudia and i are terrible at sending out Christmas cards. Its not because we object at the volume sent - 1 billion (UK/year) - or feel sorry for our under-appreciated Postie. We're just not organised enough.

So as a substitute, please follow the link below to experience the Nativity Story in all its paperless/dramatised/webtastic/cheesy-cool glory:

www.paperlesschristmas.org

Not quite over yet

Hopes of being discharged on Thursday last week were frustrated by the consultant's absence. He had been delayed in theatre (surgery), so his clinics were being conducted by a registrar, who would never discharge a patient without a consultant's consent.

She was quite pleased with my progress but suggested i come back in 3 months time for another clinic. Having been geared for a cheerful farewell, i guess i was a wee bit disappointed. I'd even bought the consultant and my nurse specialist (Jo) some chocolate... But it's just a formality and will have to wait till February.

This blog has been granted a last minute reprieve!!

4 months on...

Just been to church. We have this most amazing event called Space, once a month. A contemplative hour of, well.. space to think, pray, float (metaphorically) with music, visuals etc. The theme of tonight was "Journey". Well its been quite a sensational journey for us this year and my mind was filled with memories from along the way.

Its 4 months since i was lying prone, reliant on morphine, with space-age leggings on that inflated from my ankles to my knees (to avoid thromboses developing). I couldn't walk, breathing was an agonising ordeal, i was nil by mouth and the minutes were dragged out over what seemed like mini-eternities. How different that is to now. Its a testament to how amazing the body is at adapting/recovering.

And its also a testament to Claudia and the many friends and family members who have been travelling with me. But the biggest shout goes out to God, who has been an awesome companion in both the best times and the worst. Thinking back, it was as if the line in Psalm 27 (v5) came alive in some of the darkest moments..
"For in the day of trouble he will keep me safe in his dwelling".

Strange wording by today's standards, but in those forsaken moments, when time stood still, monitors bleeped, the pain seemed unending and visitors looked on helplessly - there were arms wrapped around me. Not overpowering, but there. When you're that low, exposed and lonely, the peaceful loving arms of God are the sweetest place to be.

its more mental now

As fickle as my body can be...
(eg) Yoghurt on Monday: fine - Yoghurt on Tuesday: stomach cramps,
i'm feeling as if the physical side of me is making really good progress.

re: eating - I can generally predict how things will fare after eating most things, and have developed a particularly healthy taste for crisps, chocolate and beer. But coffee? Still off limits.

My posture is improving well according to my physiotherapist, Andy, who doesn't want to see me anymore(!)... and my core strength is also much better according to Susie, my pilates instructor. Its funny how the simplest of slow, seemingly meaningless repeated exercises suddenly make you stand much taller.

Its the mental side of things that i'm finding harder at the moment. On the outside i'm looking more and more normal/stronger. On the inside (in my head) there's a long way to go. Getting used to the pattern of 3 mornings a week at work is one thing. But having to make decisions, trying to think creatively, remembering how everything works - where everything goes, that is proving quite tricky. I can't concentrate like i used to. I feel for my colleague Joachim, who is delighted to have me back. But i'm only firing on 1 cylinder at the moment, which isn't the most use.

My "working brief" is to take things sloooowly, celebrate the little victories as they happen and not expect too much more. Its becoming an act of will to resist the various pressures and expectations of "normal life" that are starting to emerge around me.

Louis turns one... nausea... back to work...

Hurrah for instant news!!
Louis' 1st Birthday is almost ancient history now. Our halloween baby chalked up his first year in typically relaxed fashion. He now bum-shuffles in circles as if nailed to the spot, which OF COURSE he isn't.

My "good" days are starting to out-number the ones where i feel nauseous. I'm really grateful for this. My next and final meeting with the consultant is on the 26th and i hope he'll be encouraged by my progress. It will seem strange to move off his current case-load. Does this mean i'm in remission or is it the all-clear?? We'll see.
Anyway, as far as the nausea is concerned, i'm hoping that as my gut fine-tunes itself further, it will give me a bit more slack regarding when and what i eat. At the moment, i try to stick to my 7am - 10 - 1 - 4- 7pm (i'm down to 5 meals a day!) mealtimes to avoid "going off" as i tend to describe it. Otherwise its onwards and upwards!

And as of this week, i'm phasing myself back into the office. At present, i'm doing the equivalent of 3 mornings, but it'll take a while to build up the reserves required to tackle a whole week at work.

Sitting at my desk again after 6 months is as surreal as... anything.

Where does he get his energy from??

A phase that has lasted slightly longer than we would have imagined or wished, is Max's tendency to remove his trousers, as well as socks and shoes when he is playing.
It is a clear sign that he is "at home" whenever he gets the urge. But it can sometimes lead to awkward moments for us, in gauging the appropriateness of the urge with the place where the urge presents... if you get my meaning.

So should it be an issue, that my 3-and-a-bit year old wants to undress in shops, cafes, at church, in the park, toddler groups, friend's houses? Probably not. But it keeps my parental "conversative-ometer" fresh and well oiled.

At home, its fine, no problem. See below for details..

Three cheers for slow progress!!

Apart from being edible, the following pictures are suggestive of Louis' most effortless, but greatest accomplishment...





Staying rooted to the spot!!

While some of his friends incl. Sebastian and Mia are crawling/stumbling all over the place, right now Louis stays where you put him, for ages...

He's a gorgeous boy and we obviously wish him every success with his future mobility. But at the moment, with Max supplying energy to the National Grid, we're happy for a few more weeks of Louis "sit-ins".

Updates - Darren

The latest news is that Darren's bone marrow transplant has been delayed until the end of November. Its slightly confusing as to why this is happening, but hopefully the next appointment on Wednesday in Bristol will clear things up.
In the meantime, he is living in the church's flat, while going to the hospital for daily check-ups, blood tests etc and is being well looked after by a committed posse of members from the church.

The flat (unfurnished just before he arrived) has now been filled with furniture including bed, 2 sofas, tv, microwave, tables.. the church's response to his need has been totally amazing.
Understandably, his biggest ongoing worry is his health and the spectre of the oncoming transplant. This costs him a lot of emotional energy and sleep.

We don't see eachother as often as (perhaps) we should. And when we do spend time together, its difficult to raise his sights above these immediate things.
Hardly surprising i know, but its often when we look to the small things that are going ok - things where we can clearly see God at work - that we gain the courage to believe that He (God) is somehow in control of everything else, however hard that is to imagine.
The next few months are going to be very tough for Darren. His prognosis is not amazingly good and he has a lot of personal challenges to face, so he needs all the prayer support that we can possibly manage.

Updates - Family

Claudia
If a candle had 4 ends to burn...
On top of everything she does at home and now at work, Claudia is revising for a GP exam on the 28th. Most of her evenings are spent on the computer answering multiple-choice test questions. If you chance to involve her in conversation in the next 2 weeks, she's likely to offer you 1 of 5 opinions: a, b, c, d or e.

Max
Who has entered the "why" phase in the last week, with a vengeance!
Today we got to 4 generations of "why" on the subject of washing hands after using the toilet, before my patience wore out.

Louis
While his contemporaries are busy testing out their baby-walkers, rolling around or crawling, Louis is still happiest whilst sitting on his Pringle rug with a selection of much-loved, dribbled-on toys. His calm is a welcome contrast to his brother's energy.

Updates - Dad

The ultimate diagnosis reached by the specialists was not lymphoma, but a form of leukaemia (also a blood cancer) known as CLL. After undergoing CT, MRI scans and blood tests... and quite a long wait for the results, the leukaemia cells have only been detected in his salivary glands and are not more widespread as feared.
This is a positive finding which means that his treatment will involve radiotherapy alone and not chemotherapy. He is meeting the radiology consultant tomorrow and will receive 2 lots of radiotherapy treatment next week.

I never "felt" pain from my tumor like he has. But he is a brave man and is dealing resolutely with the chronic discomfort in his mouth.

I still find his diagnosis so hard to believe. Nevertheless, i only hope that i can be there for him as much as he and mum have been there for me.

Another milestone: 1st Indian take-away..

Mmmm (become a blog follower and take advantage of Google's new "smello-vision"(TM) feature!)

Dhansak is a delicious Indian dish of lentils, vegetables, ginger, cumin etc - which, coming our favourite restaurant down the road, differs in spicy-hotness depending on which bag of chillies they happen to be using.

We had an incredibly hot prawn dhansak on the night that Max entered the world. Could the restaurant have been responsible for his induction? If so, Jaflong might have been a choice of middle name instead of Nathanael. I digress...

So it was with more than a little caution that i ordered again last night, knowing full well that my nostalgia could be rewarded with a dash upstairs. Claudia's first week of work at the practise had been overcome, as had my first day looking after the boys - although Max had been spirited away for much of the day by compassionate friends. We, bedraggled parents, deserved a treat!!

Hot though it was, the evening's delicious meal of chicken dhansak, sag aloo, pilau and a peshawari nan ended without a major incident (i had to lie down for a while afterwards, but i blamed the nan bread for that). That's kind-of another recovery milestone - WE DO TAKE-AWAYS.. 40% cheaper too! due to my reduced appetite.

Same, same and ever so slightly different

Its like taking a train journey from the mountains to the desert. The transition between the two terrains is excitingly different as all the changes come thick and fast. And then its just sand and more sand, in every direction, for days.

I do recognise that my recovery, like the train (in this PROFOUND analogy), is moving forward. My posture is improving, i'm just about off the pain killers, i can walk much greater distances etc.
But its oh so frustratingly slow. Today is below average in terms of nausea, vomiting and fatigue.

However, this week has had its own different milestones. Claudia's extended maternity leave ended this week. She is back to 3 days a week at her GP practise. The fact that she has had so much time for the children throughout my entire treatment has been a huge blessing. Louis is now going with Max to nursery for 2 days each week and in due course i will be looking after the boys on Fridays as my strength improves.

Low blood-sugar moments

I was somewhat unnerved by Max this morning. As I was preparing my 7am bowl of muesli, he walked into the kitchen and with an earnest expression said “Speak out!”. It was quite perplexing. I just looked at him and he repeated himself at least 3 times again “Speak out!.. Speak out!.. Speak out!”.
I suddenly had a weird early-morning thought that maybe it was the Lord, communicating with me in some biblical way, about something he was calling me to do.

As weird as the thought had been, was the urge to say “Speak Lord for your servant is listening” (as in 1 Samuel 9 & 10). But before my thoughts could run away further with me, he continued… “Spreak out!, Spreak out!”, while pointing to the lounge.

And then at last the penny dropped. It’s that special moment when your mind stumbles across the key, that unlocks the translation to the desperate cryptic babble of your own child. Far from being an almighty commission, Max wanted a pre-breakfast bop to “Freak out!” by Chic. A 1978 funky classic – click to hear – a positive sign that a funky foundation is being laid down in the psyche of my gorgeous toddler.

Apart from this attack of “low blood sugar-madness”, I’m actually doing ok.
My weight is still stable at around 72kg. And if I get enough sleep, take my tablets and avoid overly sweet or acidic food/drinks, I seem to suffer less nausea spells. That’s how far the trial and error has got me!

The Wedding

...and what an amazing day it was! Insa and Andre got married in Bielefeld's Radrennbahn, a slightly dilapidated, but no less impressive motorbike racing track built in the 1950s. At its centre is a field of sumptious grass used by a local american football team. A very unusual place for a wedding by german standards and the local press were there to witness it. Insa and Andre had exchanged vows at the registry office (the legal part) on the Thursday before the wedding. But it was also important to Insa to make their promises before God. So she twisted the arm of a pastor she knew and of the manager of the Radrennbahn and hey presto... a quirky wedding concept was born. It suited the happy couple down to the ground. Insa and Andre met in the creative world of theatre set production. As artisans, they are alternative in many ways (wardrobe, interests, political views etc) and the wedding was a fantastic expression of this. Insa wore a 1920's style dress and hairstyle, Andre wore a hand-stitched suit and trilby. But it was the manner of their "entrance" and the procession that followed, that took the biscuit (it is a german tradition for the bride and groom to enter the church together). Think James Bond, The Spy who loved me, and the scene when the Lotus emerges from the sea, and you've got it. The following 2 minute clip should give you an idea.

It was a very moving service. Claudia played keyboard as part of the music group. The pastor led with great sensitivity and spoke straight-forwardly of God's love, spoke of the joys of marriage and didn't shy away from mentioning the tougher times. Max loved the track and took to exploring it at regular intervals throughout the service. Louis schmoozed with one of the other babies present and ate grass. For me, everthing went swimmingly until the reception, when i had to lie down (with nausea) for most of the meal and went to bed early with the boys, missing the party afterwards. It was a bit of a blow to an otherwise glorious day.

2 Months on

Its 8 weeks since the knife fell.. (how dramatic!)
I remember as if it was yesterday the group comprising of surgeons, anaesthetist and theatre nurses standing round me on my trolley, going through the details of the procedure. Then shortly afterwards being given something that must have put me out. I don't recall the slide into oblivion or being challenged to count to ten. It was "Game Over" before it had started, a bit of an anti-climax.

But as i've written before, there are vague recollections that fit with the passing of time, or seem even more distant. Like memories of the long walk to the toilet at the end of the ward. I was so out of breathe by the time i got there with my feeding tube, stand and extra oygen bottle, that i had to sit for a while before getting down to business. I'm capable of a lot more now.

We're in Ostfriesland, staying with Claudia's parents. Their house borders on an enormous Maize field which was growing steadily during our last visit (a week before the operation) and now stands more than ripe for harvesting.
In a strange way its a powerful thing to see this same crop again, the other side of surgery. I never doubted that i'd make it through, but remembering the darker moments when i would stare for long moments out over this field, with my emotions crashing in on me - and now to see it again with all the relief of successful treatment and a new hope for the future, is a real blessing.

2 months on and my recovery continues to bear new fruit, allbeit tentatively. I'm starting to hear my body's prompting a little more clearly. If what i'm sensing is primitive hunger, when 15-20 mins before my next meal (without looking at a clock) my mind is quietly urged to eat something before nausea sets in, then i'd be seriously happy about that! The anti-sickness tablets are ridiculously bitter and i can't wait to see the back of them.

Bath to Herne

I'm a bit apprehensive about today. Over the past few weeks i've been getting used to driving or being driven. Today we're driving roughly 500 miles on the first leg of our trip to visit friends and family in Germany. The trip will culminate next weekend with the wedding of Claudia's younger sister Insa in Bielefeld.

It will be interesting to see how my body copes with a completely different daily routine, different beds and different food. But hey! nothing ventured, nothing gained.

on route

Friday am - somewhere in Belgium..

Well, good job we have european breakdown cover! We'd driven no more than 150km from Dunkirk when our fan belt broke. It was 9pm UK time and by the time we were rescued, it was 11.30pm. The boys coped really well and the kick of adrenaline was enough to help me cope with a nasty bout of nausea. Claudia (superhero) held everything together.

We were recovered to a lovely hotel, with Koi Carp in a pool outside the reception. Max wanted to feed them bagels.
Our car should be ready in an hour or so and as i type this, Claudia and the boys are enjoying the hotel pool!

Bend and Stretch

In explanation to yesterday's one line outburst - a common cold that's been doing the rounds of the family suddenly blossomed over me during the day. As the usual symptoms took hold (sore throat, headache, runny nose) they welcomed back the nausea and fatigue, leaving me in bed for the rest of the day feeling very sorry for myself. Its now wearing off slowly, and a bit too slowly because i have a Pilates lesson in a couple of hours.

Due to the scar tissue, pulling and general aches in my chest/abdomen, my inclination is to walk around like a hunchback. Not the prettiest of sights around town, Bath Abbey already has a bellringer. And not good for a healthy posture either.

Indeed, Claudia's family have been so concerned by the lack of formal health service aftercare on offer, that they are funding my "Muskelaufbau" (now everybody say it: Muskel-aufbau - very good) training at a Pilates centre here in town. What a wonderful gift!

In Germany, healthcare financing is based on an insurance system, meaning - in a nutshell - that there is more money sloshing around, for a whole range of extra services including rehabilitation hospitals. For me, this would have entailed living for 4-6 weeks in a stylish german Spa Hospital undergoing all the dietary and physical training required for an all-round healthy recovery.

Us british patients have to feel our way through this ourselves and i'm sure we do a jolly good job of it, but somewhere in my deepest darkest subconscious my envy alarm is twitching away.

Did i speak too soon?

A simply horrible day :-(

Quietly confident

As the days turn to weeks and creep into months, memories of my time in hospital are starting to fade. Reading blog entries from the first 10 days post-op made me wince, as some of the "valley" moments came back to life again. It really does seem like a long time has passed since the operation and those first difficult few days.

Now, slowly but surely, i'm reclaiming more of the day from my bed. I can walk further without becoming short of breath and the anti-sickness tablets are proving effective. The last 3 days have been very positive, regarding the nausea and fatigue that have otherwise frustrated progress. This has been encouraging.

Eating remains a chore though, as most of my 6 mini-meals are preceeded by sicky feelings in my chest, instead of the hunger pangs most people feel in their abdomen. I'm hoping these pangs will evolve over time, although there's not much i can do to influence where i'll feel them!

As regards WHAT i eat, i'm managing to eat more or less the kind of food that Claudia and the boys usually tuck away, however in much smaller quantities. Max can still eat more for breakfast than i can.. and Claudia claims she eats 3x my daily intake, but i'm not sure about that. How can she look so gorgeous and eat that much?!!

My portions are steadily increasing in size and my aim is to move from 6 mini-meals a day to 3-4 normal-ish sized meals over the next year to 18 months. One of my recovery companions Andrew (a fellow believer), who had his oesophagectomy 18 months ago has just about managed this. He is an incredibly positive guy, who gave me confidence even before my operation, to believe that life would be liveable in the aftermath of such major surgery. I hope to emulate not only his positive attitude but also his eating habits!!

Music & Movement - the redemption

Yeah, that's better... funky music to the rescue!!



Max, Louis and Claudia (if you're observant) mosh to the opening grooves of the Carwash, a 1970's funky anthem without parallel.
To earn yourself a few extra funky points, watch the video, from a time when music videos were still REEEEALLY cool man.

Also, from his exertions, you'd think that Louis might now be suffering from concussion.

We're more worried about the cushions.

Darren Update 5

I feel rather ashamed that i have neglected Darren's updates for so long. The end of June is a long time ago and a lot has happened since then.
Since the last update, Darren has remained a patient at the RUH in Bath. During this time his partner Linda has moved to Birmingham (their relationship has improved) and preparations have been made for his bone marrow transplant (BMT) at Bristol's BRI, where i had my surgery. But not everything has gone according to plan.

Because Darren's immune system has been knocked out by successive rounds of chemotherapy, infections have been a constant threat, and sadly he's picked up a few, which have pushed back the start of his BMT.

In July, Darren had the opportunity to have a weekend out of hospital with Linda, before she moved up North. A few of us at church were able to organise him a lovely B&B in Bath, a romantic dinner by the river etc and he had a wonderful time. Over the weekend however, he and Linda had walked their feet off and a resulting blister on Darren's foot became infected.

During the following weeks his foot became so massively swollen, painful and septic, that he needed a couple of operations and there was even talk of him losing his foot. I've seen pictures and they were not nice. All this because his body's natural defences were down.
It took a while for Darren's health to recover from this infection, but it was followed by two more, one in his lungs and another in his Hickman Line, a tube stitched into his chest through which his chemotherapy drugs are administered.

Throughout most of this time, Darren has been quite low. I can't blame him at all. 21 days at the BRI was long enough for me. But Darren has been at the RUH for over 5 months and has become institutionalised. A small group of friends and family have been visiting him during this time. But as i've discovered throughout my treatment, there are stretches of the journey that seem very lonely and i don't envy him those times at all.

Managing his blood and immunity levels has been a tricky business for the staff at the RUH, but it seems that his infections are under control and his BMT start date is getting closer.

As i write this, Darren is out of hospital again. He has been given a bit of freedom before the BMT, which will be starting in 4 weeks time. He doesn't have an address outside the hospital, so as a church we have put him up in a flat for the 4 weeks he is out. A good friend has coordinated church donations to furnish the flat and Darren is being given financial support and free meals at our church cafe during this time.

Please pray for him, that he can relax and gather his strength for the BMT, which will be 6 weeks of painful treatment. Pray for us (collectively), that we'll know how best to support Darren, practically and emotionally. It hasn't been easy for Claudia and me to maintain regular visits with him since my surgery and we need to be realistic in terms of what we can offer during my recovery. My hope is that he can form some strong friendships during this time, that will provide him with all the support he needs during his BMT and afterwards as he rebuilds his life (again).

A new cancer

Amidst the celebrations of our anniversary and the sense that better health is on the way, we had some devastating news from my dad.

When i stayed with my parents after being discharged from hospital, my dad was suffering what seemed to be a beastly ulcer in his mouth. Steroids didn't work then mouth rinses and anti-biotics didn't work. Hospital appointments followed, biopsies were taken and on Friday the diagnosis was delivered: Non-Hogkins Lymphoma, a form of blood cancer..

After almost a generation of impeccable health in the family, two cancer diagnoses in one year. His staging tests will start next week, and these will determine what kind of treatment is necessary. In the meantime, my mind is in a total flatspin about it. One difficult question pushes its way through each time i think about it.

Where is God in all this?

Its not that i'm expecting my life or the lives of those around me to be wrapped in cotton wool and protected by God from any harm or illness. But this particular pattern of ill health seems so strange. My question doesn't call into question God's love for me and my dad or whether he has gone AWOL just when we needed him. Its more of a probing question into what he's got up his sleeve... how he will be fashioning this horrible chapter into something more reminiscent of the glorious plan and purpose he has for both of our lives.

We were never promised a life without pain, but this bad news will be a challenge for our family in taking God at his word. When Jesus said "I have come to give you life, life in all its fullness" (John 10:10) - i believe he was speaking into the lives of each and every one of us, in every situation. Reconciling these words in a time such as this will be hard, but rather than walking away from our faith, my dad and i are going to wrestle through it with God and see what he comes up with.

Tin!!

Claudia and i have always tried to celebrate our wedding anniversary by going away for a day or more. Call us pathological romantics.. but this day is very significant for us both, and so far we have succeeded in doing something special each year. We've taken a train to Prague, stayed in the Old City of Jerusalem, rented cottages in Dorset and the Gower to name a few.

On the 4th it was our 10th "tin" wedding anniversary.
10 years... We take it in turns to organise what happens, and try as best we can to keep it a secret from the other. It was Claudia's turn this year and boy.. she didn't disappoint!



After enjoying a matinee performance of The Gruffalo at the Theatre Royal with Max, Claudia whisked me off for the night to an amazing hotel, Calcot Manor, in the Cotswolds. The first night in 3+ years without children! We were thoroughly spoilt and my anti-sickness tablets allowed me more time between rests.

A highlight was the outdoor jacuzzi next to a crackling log fire.

Nausea

Getting to know how your body works again, as an adult, is a very strange thing.
Its makes me feel quite vulnerable/cautious inhabiting a body that I used to know so well, yet now has needs and patterns that I’m having to learn from scratch.
Learning what is “out of bounds” food-wise is a bit of a minefield and guestimating how much one should eat for each mini-meal, without over-doing it could be anxious-making if I let it. And sometimes I do.

Nausea has been a feature of the last few days and trying to decipher it has been a bit of a challenge. Does it come from hunger, eating the wrong things or is it the system re-working itself to accept the relatively undigested food exiting my new stomach shortly after meals? I don’t know, but this next phase of recovery will involve finding out.

What I do know so far is that double choc chip mega big chocolate cookies are not the way forward, or perhaps a fast-track to the bathroom. I hope the list of forbidden foods will be a short one.

I’m not used to taking things this slowly. There have been some very frustrating moments as the whole “eating” thing has over-shadowed the good progress my body is making on the wound-healing front.

But Claudia is lovingly encouraging me to remain mentally strong during this the next few months. That some people become over-bored or even depressed during recovery after major surgery wouldn’t be surprising. I’d value prayers to keep my mind on the bright side and to be attentive to what God might be preparing for me as recovery continues.

Music & Movement

Max lets rip to his latest favourite track "SLAM - Give God the glory"...
Louis throws his weight in too. A sense of rhythm developing there?

I've tried to instill a solid funky musical foundation in my boys. You know - James Brown, Bootsie Collins, Jackson 5 and the P-Funk All Stars.
House music may have won the first battle, but we will win the war! (Are you listening Stu?)

So convalescence is at an end, let the head-banging begin, i'm sharing the house with 2 ravers.

Oh... my... goodness!

I couldn't resist a before & after comparison. I know... the before shot is adorable isn't it?
Losing 10kg has affected more than just my outward appearance.
Although i've only been back at home one night, Claudia tells me that i didn't snore at all last night, which i hope (for her sake!) is a longterm thing!!
Also without as much insulation, i'm much more sensitive to the cold.

Anyway, being at home is wonderful, but i'm reminded of how little i am capable of doing. This is frustrating and throws into sharp focus how slow my recovery is.. and will be.

I had a clinic at the hospital with my consultant this afternoon and he suggested that it would take 9 months to get back to pre-operation fitness levels. Bad news. However he was very positive about the outcome of the surgery and will not be referring me for further follow-up investigations in the future.
For him, the treatment of my cancer has been as successful as could be hoped for.
Clinical results have shown that the cancer had not spread, so with the tumor's removal the probability of a complete cure is pretty high. We're really praying that this is the case.

The new me

DA-DAAAAA!... The somewhat streamlined new ME!

I've been able to keep my weight teetering around the 70-72kg mark, so yesterday it was possible for my stitched-in feeding tube to be removed.
Utter bliss! I now, after nearly 5 weeks, have my whole body back without any intrusions, arteficial additives and things sticking in and out of it.

For yesterday's appointment i was accompanied by my lovely mum, who at 76 had to push ME around the hospital in a wheelchair, since the distance from the main entrance to the Gastro Department was a lot further than i've been able to walk without collapsing. I'm sure it made a refreshingly unusual sight!

I will be returning to Claudia and the boys from tomorrow, which i'm really looking forward to. The past 2 weeks have been a fantastic oasis in which to recover (the 3rd time during my treatment) and my parents have, as ever, been such good carers/hosts/company.

Gnnnnnnh!

My goodness, this is a frustrating process.
Twinge, pull, numb, sore, throb, ache, stab...

I've had a run of good days, but inevitably a downer has to come along.
Having said that, i've had the longest spell out of bed today - 5 hours - and have spent the evening at home with Claudia and friends Sabine and Tim, over from Australia on their world travels.

Anatomical changes - Pulling / Pushing

Four weeks post-op and counting - and boy i would have expected to have been further than this. The surgeons have done a good job of swapping my insides around, and this has resulted in some very strange, and not so comfortable sensations.
The translocation of my stomach from below my ribs, into my chest has left a space in my abdomen, that my intestines aren't sure quite how to deal with. An awful amount of "pulling" seems to be going on, which can feel like constipation, wind and extreme hunger all rolled into one.
These sensations are of course dependant on where i am between my 6 mini-meals and whether i've just visited the bathroom, when extra space is made, kick-starting the whole "pulling" thing again.
I'm sure it will settle down with time - i just need more patience.

The pushing part comes from my new stomach having to share space with my heart and lungs. Not exactly as God intended and i think i can see why. Pre-operation, the stretchy acidy feelings of over-indulgence would radiate from my abdomen.
Now, as i'm training my "sock-like" stomach to take more food, it is very easy to eat too much and the resulting over-full feelings come throbbing from within my chest. Hmmm

Anatomical changes - Swallowing

As my recovery plods on - a lot slower than i'd imagined and hoped for - getting used to my new anatomy has been quite a challenge. Take swallowing.

To begin with it was a very strange thing, knowing that the destination of my swallows (my svelte new stomach) was just below the level of my collar bone. There would be these strange gurgling noises. It was a bit un-nerving. Now, as i'm starting to eat more and more, the feeling of swallowing is not so unusual anymore, but the psychology of it is playing a more un-nerving role... hmm.

The average person walking down the street will take in other people's appearances, their faces, what they wear, hair colour etc.
I, on the other hand, can "see" stomachs. Don't get me wrong, i don't think i'm sectionable - yet, but in my mind's eye, i can visualise the position of people's healthy stomachs as they go about their business. It happens on occasion, but quite involuntarily. I can even be watching a film and find myself analysing the actors.

Why do i do it? Perhaps i have a minority complex. Perhaps its part of a strange grieving process for the old "me". Perhaps i'm bonkers.

I still find it awesome that nearly 4 weeks ago, surgeons with the skills to join the stump of my old oesophagus, with the stitched up remains of my stomach, have enabled me to carry on swallowing in a way that feels close to normal.

Birthday

Claudia's 34th birthday today!!
Its bewildering. When we first met all those many summers ago at Lee Abbey, she was 20 and i was 24! What a lot has happened since then..

The day started with Claudia and the boys coming up to me (at my parents) for a birthday breakfast. After some shopping, lunch and pampering in town, she came back to my parents in the afternoon, where family and friends, the Gadsbys, had converged for tea and cake on an almost german scale.
There was a very impressive array of confection - overwhelming in fact, for someone with such a small stomach!
Claudia is now being wined and dined by some doctor friends in town. She SO deserves it!


With my 'recovery filter' on, the day was a rather disrupted pattern of appearing for periods of time, then retreating to bed to build up enough energy for the next appearance. The family were incredibly supportive and overall it was a positive day in terms of the ongoing aches and pains.
It also appears that my weight loss might be slowing down. My mum's food has been exceptional and though my appetite hasn't been heroic, the little and often thing seems to be working.

Limits

This next phase of recovery is going to be about discovering limits.
Limits of my physical endurance, what i can eat without provoking a nasty reaction, how much sleep my body requires per day and how much pain relief is still necessary.

As with the hospital stay, i realise that i'm having "up" days followed by "down" days.
Today is not a particularly comfortable day, following a rather explosive episode last night. Claudia has suggested i start a food diary as a way of keeping track of what agrees with me and what doesn't. This is really going back to basics! I've never had an intolerance or allergy to anything and to forego something i've otherwise loved eating would be quite frustrating.

But family and friends are doing their very best to keep my spirits up.
Its amazing to see Claudia and the boys every day! Max always wants to see and touch my feeding tube (which is stitched onto me on the outside, with a tube passing through into my small intestine). The whole thing must be so weird for him. Claudia has done so well in trying to explain what has happened to me... it goes something like this:

"Daddy was sick, so the doctors did some mending on him in hospital. They made his 'food slide' better"!

Inspired.

Free

That's how it feels to be out of hospital. I'm no longer having my blood, temperature, oxygen saturation, blood pressure, beats per minute, urine and no. 2's checked on a regular basis. I can enjoy a normal mattress and my mum's food is galaxies better than the NHS menu.

The NHS otherwise did itself proud.
I felt so well looked after during my time in hospital. The staff were fantastic, caring and encouraged me with every mini-milestone of my recovery - from bed-ridden agony to tentative walking up and down the ward.
It is a major blessing to have a health service like this in our country.
For all the pressures on its finances and services, it was there for me when i most needed it. I'm just glad i don't have to wear those surgical stockings anymore!

Anyway, the sense of release is quite extra-ordinary. In one sense my stay in hospital seemed like an eternity. However my 20 days enabled me to see Darren's plight from a new perspective and my respect for him has mushroomed. He has been receiving hospital treatment since before my 1st chemo round began, and he still has a long way to go. How he copes I DO NOT KNOW! I spoke with him today and he is in a surprisingly good place emotionally. His update i promised is long overdue..

As far as i'm doing.. i'm still losing weight quite rapidly. I've lost another 1.5kg in the past few days (9.5kg in all), but i'm hoping that this will slow down soon.
I'm trying to establish a rhythm of eating little and often. This effectively means 6mini-meals a day. Its quite a strange regime to get used to and i've no idea how this will impact on my daily pattern once i'm back at work. I guess i will become a champion "grazer".

FINAL NIGHT IN HOSPITAL??!??

My blood values have been behaving and since finishing anti-biotics (last night), i haven't had a temperature. So it could just be that tonight will be my last at the BRI. The thought makes me well up. I have been in hospital for a staggering 20 days!

I have already lost 8kg in weight and this will most probably increase in the first few weeks on the outside. I am really interested to see Max' reaction when we finally meet up again. My weight loss is clearest to see in my face. My cheeks are thinner. Claudia says i'm back to how i looked when we got married! I LOOK 10 YEARS YOUNGER!!
That's open to opinion...

Although i still feel quite sore, i'm detecting the first flourishings of recovery in my body. I feel ever_so_slightly stronger with every day that passes. My appetite is increasing very slowly. I can walk further each day without getting exhausted.

I may have overdone it today though. Following an amazing visit this morning from my big sister Cathy, when we 'broke bread' and prayed together - Claudia took me on my first outing outside the hospital!!
I have no idea what the punters thought of my hospital PJ's, anti-thrombosis stockings and wheelchair. But sitting under a parasol at a bar opposite the hospital's main entrance, sipping a cold drink with my gorgeous wife was a very 're-humanising' experience.

Pete the Patient will soon no longer be!

Recovery in the slow lane

Well, in several respects things are going well. My manifold scars are healing.
I had more fluid removed from around my left lung yesterday afternoon, so my breathing has greater capacity and is more comfortable.
But my blood tests are showing that a background infection is rumbling on, despite receiving powerful anti-biotics since last Saturday. These drugs are suppressing my appetite and messing around with my bowel movements.

I'm often reminded by staff here of the huge-ness of the operation 2 weeks ago and that i need to allow enough time to recover. But it's dragging now, emotionally anyway.

Without any complications, i could have been home by now. One of my ward-mates left today. He had the same operation as me, but a week later!!! Fortunately, he had no complicating issues, so he's out enjoying this rare, lovely weather.

How i'd so desperately love to be home now, but i need to hang in there. I've been given a potential discharge date of Monday (10th)!! But any number of things could get in the way of that. Would value your prayers that the weekend would be a time of strengthening, beating infection and developing my appetite.

Unplugged

As each hospital day has passed, the tendency has been for one day to be good (with encouraging news & developments), followed by a bad day (where pain or another complication feels like a setback). Today is mostly a good day. This morning my 'happy' morphine button was finally taken down and my feeding tube disconnected, meaning that i have been tube-free for the first time since the operation!! (13days). That part has been great!I have noticed, however, a gathering shortness of breath this afternoon and a chest xray revealed more fluid gathering on my lungs which will need to be tapped as it was on Sunday. (it will be done tomorrow morning, meaning an uncomfortable night for me). I look forward to an end of these twists and turns. The chest infection I developed (mentioned in earlier entry) has been confirmed as Hospital Acquired Pneumonia. I am on powerful antibiotics to sort this out. We're getting there, but it sure is taking a long time!!

What a difference 820 ml make....

Last night was troublesome. A few hours of fitfull sleep, no position was comfortable for long and i used the 'happy' button, bringing morphine distraction, throughout the night.
My left upper lung area was very painful. Relaxed breathing to help with the anxiety of it all wasn't helping, because i couldn't breathe properly to start with.

So one of the consultants booked me in for another 'barbecue' pleural tap after lunch.

This time they removed over 820ml of fluid, using the same method, from around my lungs. The results were instantaneous.

I went from being 'groggy' to feeling 'normal' for the 1st time in 12 days!!
I didnt rush to put my oxygen mask back on, and breathing became a whole lot easier. By no means perfect, but much simpler. This was perfect preparation for Claudia's next visit, 20 minutes later.

The number of times i've been writhing in agony or been bombed out on morphine when she arrived.. This time we could share a few tender moments together.
It was wonderful!!

I really hope that everything recovery-wise goes well from here. But you can never tell what tomorrow (or even tonight) will bring.

That being said, i remain conscious of the vast amount of prayer that has encircled us through all this.
It was therefore with interest that i felt the area of my lungs that was most uncomfortable, suddenly glow with a searing, but lovely warmth, just as the aspiration was about to start... Hmmm.

Days of pain in a nutshell

The last few days have seen a major uphill struggle against the various pains associated with the operation's aftermath. And the struggle is not yet over.
Part of me thinks, a daily update would have been too tedious to re-read. But in truth, i have lacked the strength, stamina or pluck required to maintain the blog in its regular rhythm. But it has been an important focus for me in the part few months, so i will endeavour to keep going.

Anyway, as it stands, 10 days post-operation, i have a way to go before they can discharge me.
My chronic chest pain has resulted in a resumption of normal breathing that is far slower than the consultants would have liked.
And now, although it may be to early to say, i might have picked up a chest infection.
Also, my eating needs to be adequate enough so as not to rely on drip feeding into my tummy tube..

But lets not end on bad news. The best possible results came back from the tests done on tissue surrounding the tumor, which was removed during surgery.
It was completely clear of spreading cancer.
THANK YOU GOD!!

Water on the lung

The biggest, most painful challenge of my recovery (so far) has been chest muscle pain. Slightly masked until the main operation's anaesthetic wore off, painful spasms, some lasting several hours started developing during my stays on the intensive care and high dependancy units.

Strangely, as the various infusions lines and drains started being removed, and i was able to move about more, the chest pains got worse.

This also confused the consultants, who began asking detailed questions about the pain, its origins, its intensity as a score out of 10 etc.
As i writhed around on the bed trying to give answers, a panic crept in - do they believe me or do they think i'm the biggest wimp?
I couldn't understand what was going on either.

With my last chest drain removed the night before - the final tubes were my morphine drip and my PEG feeding tube and Tuesday grinded onward in typical fashion on Ward 15:
a very fitful night's sleep, followed by the gradual emergence of commodes, medications and the first round from the tea trolley.

Today's first milestone: My status changed to (NHS) free oral liquid consumption (ENGLISH) i can drink tea, coffee, orange juice etc!
My first olfactory journey with the all-new set up: Luke warm, over-sugared, under-milked tea... IT ROCKED!!

Throughout the day, however, my chest discomfort grew worse,so that by the evening and following a chest Xray, the consultants were considering inserting another chest drain to remove the fluid they thought was compressing my right lung - the one they collapsed during part the main operation. This would happen on Wednesday.

Late that evening, as i uncomfortably 'settled down', a rather casual looking consultant surgeon suddenly appeared in the doorway of my sideroom.
He'd had an idea at a barbecue... and had come in to try it out.
Now i often have my inspirational ideas in the shower. But at barbecues?!? In the queue for the spare ribs i presume, COME ON!!

I couldnt have sent him away, so i kept a look out for spots of tomato ketchup on his fingers or a tell-tale sesame seed anywhere in the operating area.

But within 10 minutes, almost painlessly and using a simple venflon needle, tube and syringe, he had drained 450ml of fluid (colour of pink grapefruit juice) from around my right lung. Things were feeling more comfortable already.

Ideas at barbecues...

Back again

A massive thank you to Claudia who, yet again, has been a huge pillar of strength and love at this 'unbelievable' time. Despite the extra demands on her, she has been a face of reassurance through the hours of absolute agony (when i couldnt even focus on her)- she has spurred me on so well and has been at my bedside at least once every day which considering the distance is.. (words fail). She has managed both boys routines with amazing love and endurance (coping with very broken sleep). The boys are emerging from all this much more protected as a result. Thank you love.

Max repeatedly asks for his daddy, or wants to be his daddy's friend or wants to cuddle mummy a lot. He's definitely working on a few little imaginings/anxieties re: my absence.
But this tough time has high-lighted just how balanced his little character is. Thank you God for him.
His quote of the week was when picking up my mum (Pat, who along with my dad Chris have been so involved in our 'care' program) who was baby-sitting that day - he said "I really like you Granny (paaaause) but i dont like your hair!"
.. A bit of german directness developing there?

Louis..
At his perfect age, we reap all the benefits of the day and have a fight on our hands at night. Louis thrives in the company of others but not so much when put down to sleep. Put him at the centre of group of cooing people, and he smiles, glows, purrs, even squeals his delight - all while chaotically robotically rotating his hands up, down and from side to side!!
Its easy to draw strength this gorgeous little bundle, who will doubtless crawl away from this time emotionally unscathed.

And then there's the Heavenly father of our family. We are SO grateful to him (you) for your company with us through this, and the part you've played from the very start. Its like you've been right there with us in our family photos, in the background of our video clips, in all the fun times as well as the bad (we even tracked down one blog viewer to Israel - hmmm :-))
the sense of upholding, the extra-ordinary power unleashed by the many prayer(s)/thinkers, the early diagnosis, the financial provision, Darren (update still promised), the as-yet happy surgeons, the zero complications.
GOD YOU'RE AMAZING!!
If you'd do this for me, you do this for anyone, right?
what would it take to coax a few extra to join us at the bar?

Message from Pete

Status quo?

Apologies for the delay updating the blog.I shyed away from writing another entry yesterday, because I felt pretty low after having visited Pete. Somehow I couldn't quite see that he was actually progressing. The Morphine was easing his pain but making him so drowsy, that we couldn't really enter into any kind of conversation. The worst part was having to just watch him struggle, -being so uncomfortable in bed, finding it difficult to breathe, not being allowed to swallow anything... I felt his eyes had lost their spark.

Today however, I am excited, because he was really engaging when I saw him. Very low energy levels of course and still short of breath, requiring oxygen, but definitely improving. Starting to banter with the nurses ;-), so, much more himself. 7 of 10 tubes have been removed.

Stoned

Pete was in a slightly better place today. Phew ! Thank you Lord.
Sporting doses of Morphine are giving him a bit of a glazed expression ;-) but there is a tentative smile. Also, he was able to sit out of bed for the first time today and lost a couple of drains, as well as the arterial line. He is hoping to be moved to a normal ward this evening or tomorrow.

The valley

Went to see Pete last night. He was really struggling. Pain and immobility
along with sleep deprivation are a real challenge both physically and emotionally. Time is creeping. He keeps on saying how unbelievably long his day is, with little to take his mind off all the different tubes, drains and lines that are tying him down.
Constant beeping and alarming of monitors on the High Dependency Unit are making it difficult to relax and find rest. We both felt, that this part of the journey was his toughest challenge yet, a bit like "the valley of the shadow of death" in Psalm 23. It was comforting to read Pete's favourite Psalm 27 and remind ourselves of the last verse " I am still confident of this. I will see the goodness of the Lord in the land of the living."
Hang in there, Pete !

Pain

After the initial euphoria and the immense relief following the successful operation, the pain is now setting in.
I found Pete quite low this morning, having been in a lot of discomfort since the early hours of the morning. Bless him, he was still putting on a brave smile for me, but I could tell he was having difficulty breathing because of the pain.
Yesterday he had proudly told me, he was "weaning himself off the Morphine", meaning he was using his PCA (patient controlled analgesia) less. It appears, that, with the anasthetic fully worn off and the level of painkillers in his blood dropping, the pain was allowed to creep up on him.
The team looking after him were quickly on the ball, encouraging him to use his painkilling "button" more and adding extra doses of drugs. The danger of experiencing more postoperative pain is, that Pete might avoid taking deep breaths, thereby allowing bugs to settle in his underventilated lungs. An infection is obviously not what he needs right now, so good pain control is vital. It was difficult to see Pete suffering and feeling so powerless myself. I admire his strength because he doesn't ever complain. Thank you for your ongoing prayers .
I know, God is right there with him.

Cocktail

I am pleased to tell you all that Pete is doing really rather well considering the major physical assault yesterday.
I was able to spend some time with him last night and this morning, thanks to our wonderful friends Steve and Megs and Jonathan and Emma, who were looking after our boys during that time and who are housing us here in Bristol, whilst Pete is on ITU. I am just so grateful for the wonderful support we are getting from friends and family. Thank you all so much!
Now to Pete:
The operation took all day yesterday but went very smoothly, as the surgeons have reassured us. Pete now boasts a dizzying array of tubes and drains, not to mention the wonderful cocktail of drugs that helps him cope with the pain. (Let me see: two chest drains, an arterial line, central line, nasogastric tube, wound drain, catheter, PEG feeding tube and cannula for those of you interested in the juicy details)
When I saw him last night, he was still just coming round but was conscious and able to speak ,- looking rather dopey ;-)
This morning he appeared a lot more with it. He says the pain is manageable and the team of doctors, nurses and physios on the intensive care unit seem to be very happy with him.
I am impressed with the care he is getting and Pete feels really well looked after. Am now off to pick Max up and will be seeing Pete lateron, whilst my dear parents in law will be looking after the kids.

Breathing a sigh of relief

This is Claudia writing.

As I am typing this, it is nearly 8 pm and I still haven't been able to see Pete. He was out of theatre at 5.30 pm and I was told, it would be a while before he would be transferred to ITU, ready for visitors. Thankfully though ,I was able to speak to his surgeon on the phone earlier who reassured me that everything had gone smoothly and that he was very pleased with the result. The tumor was about 2 cm in length and did not seem to invade the deeper tissues or lymphnodes, although we will have to wait for the histology report to be sure. I am just about to go and see Pete now.

Thank you all for your prayers and support.

Thank you GOD.

Short reprieve

No sooner had i tested out the bed (which is Bed 5, Ward 6, Level 6) when i was whisked away again by a friend Steve, who is a surgeon at the hospital! The nurses said it was ok..

Before this, i'd had my introduction to the Anaesthetist, followed by a blood test and a pep-talk with one of the surgeons involved in tomorrow's procedure. My operation is the only one on Wednesday's list - that's because it will take just about all day anyway...!

If there's an intensive care bed available (the final hurdle which might stop the operation) the Anaesthetist will probably call for me at around 8.30pm.

Part one, preparing the oesophagus and removing lymph nodes, will take the surgeons till lunch. Part two, removal of the tumor, stitching and reconnecting the stomach will be after. During this whole time i will be in cloud-cuckoo land. Amazing.

The doctors are expecting me to be in intensive care for upto 2 days, before i return (tubed up to the max) to Bed 5, Ward 6 etc. I'm not sure how flexible the visiting hours are, but Claudia will be managing that end of things until i am able.

Back to Steve (and Megan).

Instead of fidgeting on my hospital bed, i'm now enjoying the comfort of their lovely home for a few hours, in Redland, a mile from the hospital. We'll have dinner (the last Last Supper) and Claudia will come over later so we can have a bit more valuable time together.

This is all an unexpected twist, but a lovely one.

eerm, back to you again Claudia!

Admitted

They kept us on our toes a bit.
But the BRI admissions department have just called up - they HAVE a bed for me today, and we are now packing my bag for Bristol.
I don't know yet where/when on the list the op will be tomorrow. I'll find that out later.

I guess that will be it for a while, from me, unless they have one of those funky tv/internet pods by the bed and i have a hand free to use it...
Masses of love to you all for your love, support and prayers.
If i had a request for your next "carpet time" - it would be for a good night's sleep tonight!

Over to you (gorgeous) Claudi xx

Last Supper

I'm seriously hoping that sushi will stay on-limits after the operation. Its great, the amount you eat is dependant on your appetite at the time.
The picture reveals a JOINT (Claudia and Pete) effort, rather than a unilateral attempt to eat half my body weight in raw fish.

Tonight (mon) will be the last night in my own bed for a while.
If all goes to NHS-plan, i will be admitted on Tuesday, mid-afternoon (3.30pm) at the Bristol Royal Infirmary. Which ward, visiting times, operation time etc are all yet to be revealed.

The operation itself will be on Wednesday.

I will try and keep things going on the blog during my stay. Claudia will cover when i'm not able.
A picture of me in intensive care may well appear - be warned!

As far as my feelings are concerned, i guess i did the majority of my crying in Germany. That was the low point.
I'm getting more skittish now. I used to get like this on the last day of the holidays before returning to school. It weirded my mum out.

I'm also trying to see the operation as the removal of cancer from my body, rather than the debilitating changes that may result from it. There are still, however, loads of holes in my knowledge regarding life downwind of the operation - diet, recovery time, chronic pain etc.
Being Mastermind Champion on the subject was never my intention.

I have been revisiting Psalm 27 in the past few days -
v5 "For in the day of trouble, he will keep me safe in his dwelling"
will hopefully be on my mind as the anaesthetic goes to work on me.

I'm often good at prescribing what God should be doing in situations. As if he needs my help!
While still (partly) hanging on for my "burning bush" deliverance from the surgeon's knife, it challenges me to remember how Jesus dealt with his eleventh-hour anxieties after the Last Supper and before his crucifixion..
"Father, may this cup of suffering be taken away from me. But not as i will, as YOU will" (Matthew 26:39).

Jesus' subsequent death and then rising to new life are the two most monumental events in human history. The ultimate example of the best coming out of the worst of situations.
Jesus' trust in his Father was total. My calling is the same. To trust that God's plan for my life is perfect and that good will somehow flood out of this horrible time. Even if i have to have the operation. Even if i'm struggling with complications afterwards.

Life's a Roller Coaster

Returning home

After a fantastic week with Claudia's parents and family at their rural pad, we are heading home on Sunday afternoon. Its been a time of mixed-up feelings.
There have been hours where i've forgotten all about next week's operation and we've had lots to laugh about. There have also been moments where i have needed my own space, been overcome with dark thoughts and have become quite weepy.
But in all, the time has been wonderful.
We've been swimming in lakes, ridden on roller coasters, watched a thunderstorm, chatted till late and eaten my parents-in-law out of house and home...

We prayed together today as a family (8 adults/5 children). It was a very emotional moment, to be the centre of such a great out-pouring of love and faith.
Alongside their painful concern, there is such hope that God will bring the best out of this difficult time. Its so great to be part of the Steffens family!

Anyway, despite the doubts and the big unknowns about the future, God's presence/involvement is clearly threaded through this part of my life. And while i'm staring into the gaping jaws of life-changing surgery, this subtle thread is giving me the reassurance i need that somehow things will be alright.

Pain

After a quick visit to my sister and family in Wales, i whistled back to Bath, this morning, in time for church. We were looking at Joseph from the Old Testament.

While famous for his coat of many colours, what one can overlook is the 13 years he spent in captivity - firstly when his jealous brothers sold him as a slave and then when he was falsely accused of raping his master's wife. He could have become embittered and dwelt on the emotional pain caused by his experiences, but instead he chose to make the best out of his situation. Quite how he managed to do this, having been so badly/unfairly treated is quite amazing!

God was with him during that dark time and some miraculous things resulted from his integrity and strength of character. The story resonated deeply with me (although i'm a 1000 miles away from Joseph's dude-ness) and i took up the offer of prayer after the service. I'm now sensing a gradual return of the inner peace i seem to have lost over the past week, which is great.

----

I am driving to Germany in the next 24hrs to spend some time with Claudia, the boys and Claudia's wider family who are converging on "oma and opa's" house in Ost Friesland. We will be returning just before or during the weekend. How i'd love to visit Hamburg, but i don't think it will be possible, AGAIN.

New new date

The "admissions officer" from the Bristol Royal Infirmary informed me today that my operation date has been pulled forward.
The current plan is that i'll be admitted on the 21st and the operation should be on the 22nd...
But these dates aren't set in stone and could also be subject to delays/changes etc.

Over the last couple of days, my mind/feelings etc have gone slightly numb.
I'm in a bit of a weird place emotionally. Its like the "rabbit in the headlights" scenario.
The inevitability of being "run over" has made me strangely calm, but unable to think straight or do anything particularly useful.

From a faith perspective, i'm not feeling very connected at the moment.
I know God is right beside me through all this and is whispering encouraging things into my numb ears... i wish i wasn't so deaf.

I would value thoughts and prayers in the next week.

Super-sized operation

A very unusual day.
I was assisting my brother Dave (with his photobooth) at a children's party in London.

We were part of a dizzying selection of entertainment laid on for the 20 or so children, including a mini-farm - with live animals, a rodeo machine, a marquee with underlit dancefloor, a contortionist, breakdance instructor and tattoo (temp) parlour.

But for me, the most ironic part of the entertainment provided was a giant version of the game "Operation" or "Dr Bibber" as they say in Germany!

To play and win, you have to remove a series of objects placed inside the patient, within 60 seconds and without touching its body. If you do, an alarm goes off. 3 buzzes and its game over.

The game was positioned right next the photobooth during the party, ensuring that it was a near-constant reminder of what should have been happening to me - at that very moment - were it not for the "man from Spain". I hope they don't try to complete my procedure in 60 seconds! Bzzz bzzzzz bzzzzzz.

Its fascinating to see how the other half like to party, or organise parties for their children.
This event was for the daughter of a film star couple, who seperately enjoyed the booth, if you understand what i mean. They were lead actors in the 1997 film Gattaca (a discreet clue).
Its interesting being inside the private sphere of people like these, who are momentarily free from the pressures imposed by the media and public scrutiny. They are mums and dads, have bad-hair days and wrinkles, eat pizza and walk around with bits of melted cheese in the corners of their mouths. It's reassuring.

Surgery... what surgery?

Instead of dwelling on what could have happened today - its far better to ponder on the more beautiful things in life, such as freedom, health, happiness and oh yes!... musical genius.

We have already seen Maximilian's monumental piano and singing skills. We're almost ready for his first recital. He's now giving Stevie Wonder a run for his money.


Is it just me, or can i see something of a ventriloquist's dummy in his performance?

Now, but not yet

If it wasn't for some fella bringing an exotic virus back from his holidays, i'd now be in hospital trying to get some sleep before the "big one" tomorrow.

Still no idea how things are developing at the BRI. Still adrift.

Claudia and the boys are leaving for Germany tomorrow morning and i'll be helping my brother at one of his Groovybooth events in London.

Surgically adrift

I have every respect for the NHS. They've done a very efficient job of discovering, diagnosing and then treating the cancer in my Oesophagus.

But this progress is in danger of getting a little bogged down in the wait for surgery.
The hospital's ITU department remains shut down after this bug and can only re-open once the last patient has been sent home and following a deep-clean, so there's a way to go before its business as usual.

Today, i spoke to both nurse Jo and the "upper GI admissions officer" at the BRI to find out more.
It turns out the new surgery date i have been given (27th - 2 weeks over target) is a calculated guess, assuming that the ITU department can open mid-next week. So it could be earlier, but it could also be later...

Nobody knows how it will progress from here. The medical staff are scratching their heads, and there is a list of patients, each as desperate as i am to be rid of cancer. Each needs an operation and then an ITU bed.
There's no talk/thought of leapfrogging my way up the list, but its quite unsettling that the way ahead is so unclear. I am remaining in close contact with nurse Jo regarding this and other potential options (relocating surgery etc).

Anyway, rather than festering in Bath, we are going to use this "breathing space" to spend some time with Claudia's family in Germany. Claudia and the boys will be travelling back with her parents on Wednesday. I will be joining them after a week or so.

In all of this i'm feeling normal physically, but emotionally, a little adrift.
The ongoing support we receive is amazing. The overflow of this into Darren's life has been quite extraordinary. There'll be an update on that later in the week.

I'd love to say that my prayer times are blossoming and that i currently have my nose buried in the bible. That would be wishful thinking. But i'm adopting verse 14 of my oesophageal cancer treatment Psalm (27) to help stabilise my mind in its adrift-ness(!?!)
"Wait for the Lord.
Be strong and take heart and wait for the Lord"

Louis' dedication

Went like a dream.

New operation date

Having been reassured by Nurse Jo (remember her?) that the "powers that be" would have to come up with a suitable alternative operation date to keep within, or close to the 4-6 week post-chemo target for operating - we were disappointed by this morning's post from the BRI.

I've been given a new date - July the 26th admission and operation on the 27th.

This will be a long wait and if half the world has swine flu by then, all the ITU beds will be taken till Christmas anyway.
But what can we do? Trust that everything is in God's hands and will somehow work out.

I just noticed that the Psalm, which has been a huge comfort to us throughout this time - 27 - corresponds with the operation date..

Anyway, focusing on some more positive things:
Tomorrow is Louis' dedication at our church. Claudia's parents have driven over from Germany for it. Originally they were coming over to support Claudia during/after the operation. But despite the cancellation, they wanted to be with us for the dedication service - BLESS THEM!

We spent some time this afternoon with some wonderful friends who have the most amazing pool in their parkland garden. I thought it about time Claudia featured again - what a waterbaby!

Bugs from Spain

The lastest treatment news is that my surgery date of the 8th July has been cancelled.
This came as quite a shock at my pre-operation assessment yesterday.

The BRI's intensive care department (ITU) has been locked down after a holiday-maker returned from Spain with a virilent bug that has not been responding to drugs. All patients currently on ITU have to stay there till they are discharged, to avoid the possibility of the bug spreading throughout the hospital. The department will then have to be deep-cleaned before any new patients are allowed back on ITU. Read about it on the BBC website.

They cannot give me an idea of when/how this will be re-scheduled...
With over a week to go before my op, this could create some fairly hefty tail-backs.

We'll see. I should get post tomorrow morning from the BRI with new operation details.

After - part two

Moustache?... ARE YOU NUTS?
I have but one look and it doesn't involve much hair!

Anyway, today i received a letter of invitation from the hospital (BRI) for next Tuesday evening.
Evidently, a night in hospital before the operation is good practise.
Just HOW much sleep do they suppose i'll have??

After - part one

Now THAT'S what i'm talking about!!
Haven't you heard? The moustache is the new goatee..

Moving on from facial hair, i've just come off the phone to a guy called Andrew, who had exactly the same operation last year. There's nothing quite like speaking to someone who's been through an almost identical experience BEFORE you.

After the 80 minute call, i still have loads of questions and hopefully we'll speak again before next week's op. To begin with, i was relieved that he "sounded" normal.
A strange thing to think, but i've been wondering about, both what it'll be like to have a stomach in my chest, and also how it might be perceived by those (i know and love) who'll know that i've been re-plumbed..

Andrew did an amazing job of sounding normal on the phone. I've been hoping that a sense of normality existed after the operation. When he described living with a different kind of (post-op) normality, he certainly had my attention.

Among the myriad possibilities: i might never eat a big meal again. I'll do well to know where the nearest toilet is, if what i've just eaten doesn't agree with me. My energy levels could be a lot lower. And then there's the persistent irritating cough...

What is certain is that my future will require a whole new level of management, and a lot of practise - to achieve a satisfactory equilibrium between what i eat and what then happens!
Not a thought that fills me with joy. Perhaps i'll do without the moustache afterall.

Before...

Well the chemo didn't take my hair... and no, it didn't speed things up either.
Its just one of those slovenly experiments really - shorthand for - well, water was precious in Sweden so we spared on the personal hygiene, and then it got fun so...

I call it my "swedish fisherman's" beard. That's not what others have called it.
Adjectives have included: prickly, yuck, hmmm, silence... (my mum) and absolutely magnificent!! (which helped to even things out a bit - thanks Natasha, 10 quid's in the post)

But i couldn't possibly present myself to the BRI surgeons in this state, plus it puts a good 5 years on me. So right now, the bristles are feeling nervous - as am i (increasingly) of next week.
NEXT WEEK!!

Holding rabbits

We had a wonderful day with friends at Noah's Ark Zoo Farm today.
Its was a normal farm once upon a time. Now alongside their cows and sheep, they have everything from tarantulas to tigers, giraffes to gibbons and rhinos to rabbits (which are among the animals you CAN hold).

There are animal shows throughout the day, where they show off all kinds of creatures and explain things like cows with their 4 stomachs and that owls have no crop, which is why they regurgitate the bits they can't digest. Funny how one becomes sensitive to specific subjects all of a sudden.

Max and his buddy Reuben loved it all.
Below is a snatched clip of Max holding a long-suffering rabbit.

While assuring me that the rabbit was indeed enjoying itself, Max's further part-explanation (in the video) is a fantastic example of how excitement and making oneself understood don't always go hand-in-hand as a 3 year old.


The clip's endframe inadvertantly captures his fetching Billy Idol impression. The 'intimidating' sneer.
Louis gets to see that a lot at close range!

Gutted (15)

I had a flash-back from Sweden this afternoon.
Preparing the cod i had caught, for the table, involved removing the inner parts which otherwise start decomposing quickly. The part that was most difficult to cut through, interestingly, was the cod's oesophagus... i remember pondering the significance of this at the time.

Now i was sitting in a clinic with the consultant, who was explaining the procedure of removing the tumor at my stomach/oesophagus junction. Even the description is not for the squeamish.

The operation will last 4-6 hours, dependant on any complications. 5 surgeons will be involved. 3 at the start, 1 as an overlap in the middle and 2 in the closing stages. The procedure will be in 3 parts.

First, they will lay me on my left side, deflate 1 lung and making 3 or 4 mini incisions between my ribs, insert a camera and instruments to prepare the oesophagus and remove many of the lymph nodes surrounding the tumor. This is keyhole surgery.

Second, they will lie me on my back, and with 4 or 5 more mini-incisions, will remove the "moorings" attaching my stomach to the abdominal cavity. Then, making a bigger cut in my neck, they will cut through my oesophagus (near the top) and then in true fish-gutting style will pull my stomach and oesophagus into the open air through one of the abdominal incisions.
This is unbelievable stuff isn't it? I'm still absorbing it..

Thirdly, they will cut away the tumor and surrounding parts of my stomach and oesophagus, stitch my "new" stomach together as a tube and pass it back through the incision and connect what remains of the oesophagus again, through the neck incision.

My stomach will now be a tube in my chest and there'll be a host of things to become accustomed to. I might touch on these in later posts. Then there's the waking up afterwards... i'll look like a freak show with all the tubes (there will be MANY) attached to me.

The wonders of medical intervention eh?
I'm part-detached and part-bricking it. Would value prayers in the run-up.

Darren update 4

Dear Darren. He's in a much better place now (emotionally) and that's thanks to so many of you who have prayed, visited, driven him from A to B, supported him financially - but mostly God, who is doing something extraordinary in his life.
It is a transformation story, and we're only just past the opening credits.

Darren stayed in our house while we were away in Sweden, which worked out perfectly. My family and our church friends looked out for him with meals, lifts, company, phonecalls etc. On our return, the answer machine was full of messages for him and he's even receiving post at our house from well-wishers! (He told my parents that he was going back to hospital for a rest!!)
He went back at our church last Sunday and was prayed for after the service by our fantastic vicar Simon and his (equally fantastic) wife Anne. This level of support is amazing and its totally blown him away. He has encountered "family" in a way he never has before.

He was back in hospital for blood tests, when we returned to Bath. I was visiting him at the moment he received some great news from the doctors.
According to his latest blood tests, he is in full remission! This means there were no leukaemic cells in the blood samples taken.
This is highly significant, because it means that his most recent chemotherapy has worked. BUT... he cannot afford another relapse. So he's undergoing one more round of chemotherapy before his bone marrow transplant, all of which needs to be effective to fully knock out his leukaemia.

There is not a 100% success rate for this treatment and if it doesnt succeed, he is likely to succumb to the leukaemia. It is not a great prognosis, but he told me that the support/love he has received over the past few weeks has allowed him to hope for the best outcome and this has given his life a new perspective.

Let's all go on praying that Darren's treatment is a success, and its thrilling to see that this new wider "family" into which he has been adopted will be there for him. Its a privilege to be a part of this story.

No more smoke-screen

(Max and Lily enjoying a barbeque lunch)

The Sweden holiday represented a number of things to me. A goal which we achieved, a fantastic break with good friends and a smoke-screen or distraction from my imminent near-total oesophagetomy - NHS speak for the operation in early July (date not set).

Now that we're back home, its feels a bit like "looking down the barrel". There's me and it, with nothing in between and only a few more days to go...

A report from the post-chemo CT scan, arrived while we were away. It confirmed what i had hoped, that the tumor is still very small, in fact not discernable in any of the images.
There's a big part of me that still looks for evidence of healing behind every comment, word and fullstop from the reports/medical advice we've received. Its a weird place where faith, doubt, common-sense and hope all collide and form a confusing blancmange in my head.

But surgery is still the planned route, because to leave even one cancer cell in place would eventually prove fatal.

So i'm waiting either for my burning bush experience - a flaming ceanothus and a voice saying "Pete, thou shalt not go forth and be operated upon for thy oesophagus is healed..." (sorry Lord, you don't deserve the Charlton Heston treatment) - Or a creeping sense that curing this cancer through capable surgical hands is to be part of my on-going life-story. I certainly know which outcome i'd rather.

But God's plan for me, for Claudia and the boys is perfect. All he asks of us is to trust him, however weird that might seem at the time.

Sweden 2 (holiday in a nutshell)

We were 6 adults and 5 children (3 and under), so entertainment, creative distraction and downright "bribery and corruption", were major themes during the week. Jonathan, pictured with Max, was a genius at the 1st two - he also caught the record cod (5lb) in his first 20 minutes of fishing!


We stayed in a log cabin (with smaller cabins) by the sea, 2 hours north of Gothenburg.
58.247742, 11.493988 on Google Earth - black roof.
We enjoyed this view from the outside dining table. The house has its own wooden jetty from which we fished for crabs, went on boat trips and jumped in from during sauna visits.


There was loads to do and places to explore (Claudia and Max pictured in nearest kayak). The water formed a focus for a lot of what we did.
I found fishing a very useful way to deal with my thoughts and emotions regarding chemo and upcoming surgery. Casting into very deep water proved very meditative, as well as a chance to supply organic cod to the dinner table. I let the biggest one get away (it was <--------------- that ---------------> big!! ..... err, preverbially speaking).


Max and Louis had a great time - despite what the picture appears to show!