my oesophagus...

Hooray - a new heart!!

2011-06-29T21:15:00.004+01:00

Claudia's operation today couldn't have gone better!
We are relieved, elated and thankful that the ablation procedure was successfully completed and Claudi's heart is mended!!

The new consultant was fantastic - everything we could ever have wished for.
Enthusiastic and willing to explain, he gave Claudi an ongoing commentary from start to finish, although she was mostly too uncomfortable or zonked to follow closely.

From the outset the aim was to induce the arrhythmia, then diagnose, locate and treat it. From 9.45, initial aerobic exercises followed by repeated adrenaline infusions didn't stimulate the problem, so they inserted the catheter wires and started the painful process of mapping the heart in 3D (see attached image) and finally managed to provoke the heart to backfire.

This computer-generated blob is a part of Claudia's upper right atrium. The crosses and colour dots show where the 3D modelling/mapping and ablation "zaps" have been done.

The problem was located in the right atrium (not the ventricle) and for the next hour, Claudia's heart was kept in this uncomfortable Supraventricular Tachycardia (SVT) rhythm while they pinpointed the problem area and then burned it.
Apparently the SVT stopped instantly, the moment they completed the burning process.

Another hour was then spent trying to bring on more SVT, without success.
The procedure ended around 2pm, with the consultant feeling confident that the ablation was a success.

Claudia was discharged at 5pm and is back at home with me as i write this :-)

Claudia's heart operation - 2nd attempt...

2011-06-28T23:13:00.004+01:00

A lot has happened since my last post and i will attempt to summarise life since March as soon as i can.
But currently the most important news is that Claudia's 2nd heart procedure is taking place tomorrow (Wednesday) at the BRI's Heart Institute.

Claudia pushed for a second opinion having decided against lifelong medication - a suggestion from the consultant who carried out the 1st procedure. This consultant, it turns out is an atrium specialist - and as Claudia's problem is most likely to be in the ventrical area of her heart, it maybe explains why he was unable to diagnose what is going on in her heart and how to treat it.

Tomorrow's procedure will be carried out by the southwest's top ventrical specialist. His waiting list is 48 weeks long!! He's hot on the latest 3d mapping technology available at the institute, used to zero-in the tiniest areas of faulty heart muscle.

If the problem is diagnosed and can be treated, the procedure could take several hours and Claudia will be kept in overnight. The experience, however, will be very unpleasant. During the operation, she will be placed on an adrenaline drip, which will jump-start the heart into its faulty rhythm. This is always painful. And to locate the problem in the heart muscle, they need the adrenaline drip to maintain this arrythmia for (potentially) hours. We hope and pray that the problem will be straight-forward to find, diagnose and treat.

There are various challenges that can present themselves during ablation procedures and statistically there is a risk of a stroke being induced. I don't want to dwell on any of these negatives, and will update the blog once we have the operation behind us and Claudia back home.

The indignities of google

2011-03-21T00:30:00.002Z

Is there anyone with an internet connection who has never been tempted to do a Google image search of their name, to see if they appear anywhere near the top?

A recent idle, perhaps vain moment delivered a most joltingly shocking result. Of the 1,900,000 images of Pete Rogers on Google, no. 9 is an image of me, topless, looking slightly unhinged, sporting a rather unattractive 12cm betadine-covered stapled-up wound on my belly.

Could i ever apply for a job again (without using a pseudonym):-) ?

Facebook fails can be avoided without a profile, but can anyone avoid this type of Google publicity? Its ironic that many companies spend stacks of cash trying to get close to the top of Google's 1st page.

With my current image ratings, i should be inclined to dig deep to try and worsen my score... if i wasn't such an exhibitionist!

Latest hospital appointment

2011-03-20T23:59:00.003Z

On Thursday i saw the consultant again. This was a routine visit - another 6 month milestone on the way to the all-clear.

He was encouraged by my general progress. I had put on 5 kilos since the last clinic (shortly after the Mallorca trip) and he was quick to recognise the benefits of the surgery, despite its unfortunate timing.

Adhesions (eg semi-obstructed/tangled gut) can persist, undetected, causing niggles for years. Their location is often very difficult to identify, so the risks outweigh the benefits of going hunting for them (surgically) if they haven't become acute.

With mine kicking off as they did - the surgeons got rid of a number of adhesions, including the main culprit, which may well reduce my chances of suffering further complications in the future.
Having said that, by cutting me open again the surgeons will most likely have created new adhesions (the gut doesn't like being disturbed) but hopefully insignificant ones.

I'm continuing on 2 drugs at the moment. A proton pump inhibitor, to suppress stomach acid production and reflux - quite helpful with my new stomach being so near my mouth...!!
And an anti-depressant, which not only has levelled out the troughs, but also the emotional peaks. The balance, however, is truly welcome.

Max - 4 pushing 7

2011-03-08T21:22:00.003Z

Max is great. Mostly enjoying school, he's a veritable vacuum cleaner of the classroom's most interesting words and slang, the latest super hero, computer games, consoles (DS-E?)- all of which gets regurgitated at the dinner time and needs translating or sifting by his hapless parents.

WE LOVE IT!!!

Likes: his brother, beano, his daily iPlayer fix, dominoes, Judy, Joel & Jeremy (among many others), thursday gymnastics, church (honestly :-)), the park, his bike and anything sweet.

Dislikes: cooked tomatoes, non-funky music, anyone watching while he's on the loo...

Louis at the Great Bath

2011-03-03T21:49:00.004Z

Here's a photo I took of Louis aged 2-and-a-bit, early on a February morning at the Roman Baths. There was a chill in the air and a lot of steam was rising from the hot springs. The photo took itself...

He's a lovely boy - a chilled little thinker/feeler - his character is starting to assert itself on our homelife in some quite amusing ways.

We have a naughty step for such times when a little "time out" is needed.
It serves as a boundary, used when explanation/negotiation/warnings are no longer effective.
Louis is now subverting its purpose by sending each of us in turn to the step when he doesn't get his way. He'll indignantly say "nordy dep daddy!! - nordy dep mummy!! nordy dep Macthhhh!!".

A short while ago before dinner, I asked Louis if he wanted to say a prayer. Without blinking he prayed "nordy dep Desus"...

Claudia's heart operation

2011-02-28T23:14:00.004Z

For the last 8+ years Claudia has had a kind of exercise-induced arrhythmia. When she exerts herself everything at first seems normal. But then her heart suddenly "backfires" into a completely different rhythm - which forces her to stop with debilitating chest pain.

For years she has ignored it, but since the boys arrived these heart episodes have become more frequent, to the point where Claudia decided to have it investigated.

What Claudia seems to have is a short circuit somewhere in her heart muscle.

Today's operation known as a Cardiac Ablation, is designed to search and destroy faulty electric pathways in the heart. The first half of the procedure is called Electrophysiology - a catheter with 4 wires in it is pushed up a vein into the heart. Then using mini-electric shocks, adrenaline injections and xrays, a map of the heart is made and the problem area identified.
The Ablation is then carried out using the catheter instruments. The faulty heart muscle is "put out of action" by quarterising or freezing. This is supposed to be a curative procedure and we were very much hoping that Claudia could put her painful arrhythmias behind her and enjoy getting fit once more.

Unfortunately the outcome of Claudia's operation wasn't what we were hoping for.
The electrophysiology stage revealed that Claudia's heart wasn't misfiring from just one point but multiple points, rendering the ablation process ineffective. The wrong rhythm was also identified as a ventricular tachycardia (VT)- a very unhealthy one.

Sometimes knowledge is power - at other times it's frightening!

Claudia now has to weigh up her options. A lifetime of taking medication is one of them. She's not too keen on that! Avoiding exercise to steer clear of episodes is another - but that carries with it longterm health risks. "Training her heart" to cope with more exertion could be another theory worth trying. Then there's God and anything is possible with him! We've experienced that for ourselves.

But right now we're pretty tired and gutted. A second opinion may be a route to follow, but we'll see.

New look at nutrition

2010-11-16T21:52:00.003Z

The adage "you are what you eat" has never really done it for me.
That is until i had a session with an amazing german Doctor specialising in nutrition, who happened to be in the UK a couple of weeks ago.

Bernhard Zipf, the father of friends from Frankfurt trained/practised as a GP, but for the last 20 years has studied the impact that proper nutrition can have on a wide range of illnesses, including cancer.

It was rivetting. The basis of his findings/experience took 4 hours to explain, and the scientific evidence he had to back it up was compelling. Having had my treatment from the NHS brand of "school medicine", it was clear to me that this advice was from the "alternative" end of the spectrum. Not something i was particularly used to or comfortable with in the past.

"School medicine treats the cell" continued Dr Zipf, "alternative medicine treats the milieu (the setting, environment or whole)".

Using cancer as an example, standard treatment pathways use chemotherapy and radiotherapy to target the tumour's rogue cells. These methods are extremely invasive, have numerous unpleasant side-effects and have wildly divergent outcomes.

Dr Zipf's holistic approach by contrast uses a combination of natural de-toxing and de-acidifying, fasting, healthy eating & drinking to render the body a hostile environment for cancer to flourish in.

Our 21st century minds tend to struggle with this "back to the roots" kind of idea. It flies in the face of scientific advance and persuasive pharmaceutical marketing. But it also borrows a lot from the bank of common sense.

..substrate is everything... as Alan Titchmarsh will tell you - mushrooms and azaleas require an acidic soil in which to develop properly. Cancer cells also thrive in an acidic environment.
And so by using a structured nutrition regime to reduce acidity levels in the body, Bernhard has seen tumours slow down, regress and in some cases disappear. It sounds so very simple - too simple perhaps..

The whole detox/deacidify thing requires more explanation than i've given here and i'm not sure i'd do it justice anyway.
But suffice to say that the consultation has given me a new confidence in how to approach food(i came away with a raft of sensible dietary advice and a dizzying array of suppliments that i'll enlarge on in a future post).

Knowing what to eat following the Oesophagectomy was an ongoing problem. It was all a bit hit and miss. I was sick quite a lot, while the cancer dietitians encouraged me to eat "what was good for me". Hmmm.

I eventually found my way and made up my own rules and this process has encouraged me to analyse what i eat like never before. Prior to cancer i used to shovel in anything and everything, but i can't do this now. My digestive system is much more sensitive and i tread a fine line between enjoyment of and cautious respect for my food.

My ongoing thinking is, that if the impact of a meal can still have such a dramatic effect on me, the systemic effects of what i consume over a period of time has to be of significance. I think this is the start of a journey of discovery. I'm at the start, naive and a little dewy-eyed, but i'm convinced there's more to it than meets the eye and i'll be looking into it more.

Back in the UK!

2010-10-26T20:56:00.002+01:00

We arrived back in the UK - 1am on Sunday morning.
So relieved to be home and amazing to see Claudia and the boys after the week's separation. Max asked, somewhat bewildered "are you going to be my daddy again? - forever??"

Our wonderful family, friends and church have been taking care of our needs - childcare, food etc

My GP is happy with how the scar is healing, but I've got to take things at the right pace. The operation was 2 weeks ago tonight..

Out of hospital - Convalescing in Palma

2010-10-21T14:20:00.003+01:00

My staples are out (no more pictures..) and I'm hanging out by the pool at my relative Rosemary's apartment.
Mum is also here!! She flew out yesterday morning to nurse me back to health and accompany me home. What a total heroine.
She's great company.

The view from here is amazing. A panoramic sea view that changes throughout the day. A huge change from the 4 walls of the ward.

Just a bit paranoid about what I eat. What took me back to hospital was an Ileus Paralyticus.
My guts, already stunned by the operation, became inactive again because - I think - of what I was eating when i was first at Rosemary's. Apricots could have been the culprit. Time, painkillers and lots of fluids sorted me out in hospital so no new surgery will be necessary, which is good news.

Back to bread and water now

A holiday snap ;-)

2010-10-20T21:44:00.003+01:00

Scars - oo-aaar!

2010-10-19T07:49:00.005+01:00

My stomach has a new scar. The old one 5cm long was subtle enough to hide in the ample tufts of my belly hair un-noticed - mmm.

This new one may need a brass band or a troop of cheerleaders to provide distraction from it! Re-using the old cut, the surgeons ended up extending it to 12cm. This was necessary because 2 additional adhesions were found spaced out along the bowel that needed removing.

The incredi-wound is currently stapled together, resembling the rim of a cornish pasty (from a side view) or a worm that's not about to get very far...

The squeamish should look away

Don't say i didn't warn you :-)

My Bowels...

2010-10-19T06:48:00.003+01:00

Hardly a topic for polite company, i know, but a friend asked me what the new blog would be called. I think cyberspace will be spared this, but the last 10 days have been a masterclass in what my bowels will do, won't do, feel like when twisted, squeezed, bloated - you name it. Apparently they respond like earthworms when you touch them..

Its very strange being this far from family and friends, marking the time and hoping/praying that things improve from here. The disappointment of having our big family holiday nipped in the bud is enormous. Claudia was brilliant AGAIN (including our friends - the Lines - who were with us at the time) at looking after the boys and visiting me. But when you're not complete as a family, being on holiday becomes more like being at home - but somewhere where there aren't enough toys/familiar distractions and the frustration of what might have been.

As Claudia has written (thanks love) i am back in hospital for a couple of days for observation. No eating / no drinking. My bowels need to spring back into action, or else there may concerns of yet more adhesions and another operation might be necessary.

In the meantime, my relative Rosemary who lives in Mallorca's capital Palma, has supplied me with a laptop, so i can update the blog.

So you see, i'm not completely on my own, the quality of care here is excellent despite the language barrier and i feel yet again lifted up (its feels strange but tangible) on a wave of prayer, breaking in from all over the world.

Surgery on holiday

2010-10-18T13:02:00.003+01:00

This is Claudia writing. Thought it might help to do blog entry to keep people informed about the latest events.
We have just been on holiday to Mallorca. The first week was really great.
Sadly though, Pete became ill in the second week with abdominal pain and vomiting. The long and short of it is, that he required emergency surgery on Tuesday evening in a mallorquine hospital for small bowel obstruction. The surgeon told us that they had found the bowel twisted but also strangulated by some tight scar tissue, which stems from the previous surgery he underwent last year. Thankfully the bowel hadn't suffered any lasting damage and with the scar tissue cut through, it seemed everything would heal well.
I returned to the UK with the boys 2 days ago, as planned, but since Pete was still quite weak, we decided he should convalesce on the island. Rosemary, a "step aunt" living in Palma had offered to look after him, which we were extremely grateful for, although, of course, so disappointed and unsure as to why all this had to happen.
Pete was discharged on Saturday, just as we were flying back out to Bath. He had a couple of days at Rosemarys house but started to feel unwell again last night with more pain and vomiting.
He was readmitted to Inca Hospital in the early hours this morning and is now under observation on iv fluids, being kept nil by mouth.
He has just texted me to say that the vomiting has stopped but that the pain is unchanged.
Would appreciate your prayers for him at this time! We would so love to have him back home. Also I am unsure as to whether I need to fly back out to him. Many "unknowns" at the moment... Thanks for your support !

September catch-up

2010-09-28T20:47:00.005+01:00

My CBT course is over except for a refresher evening in early November, where we get the chance to share the ups and downs of using our new weapon (CBT) in the inter-galactic struggle with our anxieties/depression... Fun.

Have i been a good boy? To be honest, its hard to add another layer of commitment over my already chaotic life. A few things seem quite useful - creating positive statements to speak out against the "catastrophising" thoughts that try to assert themselves.
Designating specific worry times (eg between 9 - 9.30am) leaving the rest of the day supposedly free of uncontrolled worrying. And so on.

Also, i'm on anti-depressants now. I've been quite snobbish about them in the past. As if it was a kind of weakness to take them.
Well, i need them. And while they've been lifting me out of the depths, they've levelled of the peaks too, which is kind of strange.
I have no idea how long i'll be taking them - we'll see.

The month HAS had a few highlights.
Firstly our 11th Anniversary, where Claudia and i drove "boy-free" around Devon in a camper van for the weekend - below in the Valley of the Rocks - a mile or so from where we first met

And Max has started school. What he's holding is the traditional present (packed with sweets, pencil case etc) given to children in Germany on their first ever day at school.

August catch-up

2010-08-31T14:22:00.003+01:00

My CBT course is in its 4th week. We're an eclectic group of people with either anxiety or depression as our main bug-bear. There's lots of homework/tasks to do. Breathing exercises, practising positive statements, thought challenging to name a few. It all makes sense, but its difficult to carry through.

I'm in dark place at the moment. My low moods are debilitating. I'd hoped that "talking treatments" (CBT) would do the trick. I'm now thinking that the medication option will help me keep a better lid on things. Otherwise Claudia and the boys will continue having a rough deal.

One year on

2010-07-22T23:28:00.003+01:00

The new me is 1 today!

My 365th day without cancer started with the lovely Claudia bringing me a cup of tea in bed, a card and a present
(2hrs + pamper session at Bath's Thermae Spa!!).
Like the queen, i now have 2 birthdays - the original Pete and the new one.

It may seem a little strange, seeing things from this perspective, but on this day a year ago my whole "being" went through the most collosal change.
Its a threshold that quite simply determines everything in my life as either pre- or post-surgery.

The experience has been totally horrific and yet life-saving - utterly bewildering and yet packed with the deepest meaning - depressing but also filled with a hope for the future. A future with my gorgeous wife and children. I'd merely looked forward to it before all this. The new me desperately aches and yearns for it. Its such a precious thing.

Speaking of aches. I've had terrible stomach aches over the last week. Whether this is a grumbling tummy bug, dumping from eating the wrong things or constipation from becoming dehydrated in this warm weather, i'm not sure. I don't think anything sinister is going on though.

A little bit of CBT will do nicely...

2010-07-05T20:48:00.004+01:00

The weight-loss thing was most probably a red herring. I saw my consultant last week (not his registrar, which was nice). He seemed confident that a CT scan at this stage wasn't necessary. From now on i will be seeing him every 6 months, with Nurse Jo calling me inbetween to make sure things are ok. These guys focus on the physical me. The emotional me bumbles on with its ups and downs.

A Psychological therapist rang me 10 days ago for a telephone assessment of my emotional well-being. I then received a copy of her letter to my GP, to learn that my PHQ-9, GAD-7 and WSAS scores (17, 13 & 16) were concerning... hmm. The longhand for these obscure alphanumeric formulas is "moderately severe level of depression", "moderate level of anxiety" and "significant impact on overall functioning".

Do i recognise myself here? On a good day, no. But there are days when the clouds roll in, and my GAD-7 and WSAS-ness take a real bashing. So i've been refered for a 6 week course of CBT (Cognitive Behavioural Therapy)

This will run from the end of July to early September. The NHS offers CBT in different formats. Working through an online program, group course work or 1 to 1 sessions. As the latter has a very long waiting list, i'll be dunking rich tea biscuits and learning coping mechanisms, on Monday nights, with some of Bath's other alphanumeric champions... Scintillating updates will follow!

Next 3 monthly clinic

2010-06-08T00:04:00.002+01:00

Since my last hospital weigh-in i'd lost 2.2kg (70.8kg)..
The registrar raised his eyebrows and suggested i have blood taken and another CT scan.

Losing weight doesnt bode well when recovering from cancer treatment, however i hadn't had any lunch before the (mid-afternoon) appointment and had built up quite a sweat getting there.

Also, in the last 12 months i've had 5 CT scans, each with the equivalent radiation dose of a trip to the moon and back. So i'm not really keen on another one, unless its absolutely necessary.

So Claudia took my blood at the breakfast table, much to Max's sgust (he misses out the "di" on various words eg: saster etc). And thankfully the tests have come back clear.
Then i re-measured myself on the same scales this morning after breakfast and was back upto 71.8kg. I think this was just a blip - atleast that's how i'm choosing to see it.

Depression

2010-06-01T23:34:00.001+01:00

Blog activity has dive-bombed this month.
To be honest, i haven't felt up to it.

We were away in Germany (in the Mosel region) for a week in early May. It was a lovely location and the self-catering accommodation was an amazing find. However i struggled with my emotions, became monosyllabic and found myself retreating into some of the darker corners of my mind. That wasn't good. Nor was it fair on Claudia or her parents who were visiting.

Back at home my GP has suggested i go for "talking treatments", rather than medication, for what he thinks is mild to moderate depression. Now there's a label! I'm on a referral list for counselling or cognitive behavioural therapy (CBT). Let's see how that goes.

Finding the right work-life balance is still proving difficult.

Regarding my physical recovery, dumping is almost sorted. I have about one dicky-tummy episode a week. Exactly what causes it is unclear, as i monitor what i eat quite closely. Nausea is also much less of a problem now.

Heavy thoughts

2010-05-04T20:41:00.000+01:00

It seems that only now, some of the bigger thought-provoking issues are converging on my already crowded mind. Things like:
What its been like to have had cancer.
How close i might have been to an in-operable stage.
How much my life will be/should be impacted by the last year's illness and treatment.

Although these themes seem quite obvious and may have surfaced in some way in past posts, most of my mind's energy in the last year has been focused on beating the cancer and securing the best recovery. It seems the time for philosophical reflection, for delving deeper, is upon me. And it makes me a little nervous.

Where will it lead? If my conclusions demand a change in course (ie: work or other commitments) will i be strong enough to take the plunge?

One thing's for certain. I can't do nothing about the buzzing thoughts in my head.

39

2010-04-13T14:44:00.002+01:00

There are computer games, which start with a landscape covered in a "black fog". Wherever your characters move, the fog clears in front of them, revealing more of the game level's landscape until, after a while, everything is visible. Nothing can remain hidden. No enemy can attack from the shadows.

If last year's diagnosis started the game, surrounding me with uncertainty, turning 39 feels significant. A year won back from the fog. A little more has cleared. I'm hoping that a lot more of my "landscape" will become visible in the next few months.

Torches

2010-04-09T12:50:00.000+01:00

I now look after the boys on Fridays. While Gina Ford wouldn't be proud of us, we do have a sort of structure for what happens during the day. After breakfast, we make the room dark, turn on loud music and go mad with my bike lights!!

At least they're getting some use.

New life

2010-04-04T21:05:00.003+01:00

What a precious gift this life is. You only get one crack at it. Its full of mysteries that science tries to unravel and medicine tries to heal. It seems so fragile, and yet its so powerful.

Easter bursts at the seams with it. Jesus' journey from death to life has to be the most significant single event in human history. Death is no longer the full-stop. He is the source of life in all its fullness. Consider that!

During our Easter morning celebrations, Claudia and 3 others - including Darren's Linda!! - were baptised (also a symbol of passing from death to new life).

There was a green hill

2010-04-02T23:31:00.001+01:00

Its usually overcast for me on Good Friday. Tracking the events leading up to Jesus' death, left me with a lingering melancholy. It all seemed so hopeless. Thank God it didnt end there. The weather certainly played its part.

Today was also a mini-anniversary that was playing quietly in the back of my mind. The 2nd April 2009 was the day my diagnosis was confirmed. The day Claudia, the boys and i went on a very lonely walk, on a hill overlooking Bath, trying to absorb the news.

But perspective is everything. We were given a bottle of champagne by dear friends who, anticipating this day, encouraged us to see the distance we have come and the exciting path to full recovery ahead. Amazing how you can turn glum-ness on its head!

Back to the BRI

2010-03-26T17:00:00.005Z

After 8 months, i set foot on Ward 15 again. It was acutely strange.

I felt totally institutionalised in August last year, so it was with a certain degree of trepidation that i found my way back to the ward. My home for 20 long days.

The staff seemed pleased to see an ex-patient again. I had left in a wheelchair, pale, gaunt and hunched like a banana. They took a moment to recognise me in my upright, healthier-looking state. Trudy, a lovely nurse, could remember which beds i had occupied (in the right order) and that i'm writing a blog. She needed help with my name - but that's not surprising given the volume of patients flowing through the ward.
I was hoping to see Sam, a nurse who encouraged me through some of the harshest times. Sadly she wasn't around.

It was a short visit and not the main reason for visiting the BRI, but Claudia and i left the ward having refreshed our own very different memories of the place.

A big mi-steak

2010-03-25T12:11:00.002Z

Claudi and i had a delicious meal at a popular restaurant the other night. A fabulous duck salad starter, followed by a shared 16oz steak... mmmm

Sometimes the eyes make a connection with the appetite part of the brain, over which there is no control. Eve had that problem once and look where it got her!
Does pain always follow pleasure? It did after the steak.

I couldn't get to sleep until 6am - so spent the night feeling sorry for myself and watching dvds.

Evidently my new alimentary canal is not yet fine-tuned for medium-rare meaty dishes.

Playdough

2010-03-23T11:40:00.006Z

Rumours of Max's playdough skills are attracting media attention.
OK! and Hello magazine have just been on the phone for an exclusive.. ;-)

Confused?

Songs of Praise(?!) were filming our toddler group (broadcast in May).

I couldn't look at Aled Jones busily tapping on his Blackberry, without remembering his pudding-bowl and white cassock and hearing his 12 yr old voice in my head singing "we're walking in the air".

Poor bloke. He must get it all the time!
Such was my urge to sing, I had to bite my lip, hard.

Claudia couldn't help herself - but i don't think he heard.

Hero

2010-03-10T12:17:00.001Z

Click on the link below and allow time for the video to download

http://en.tackfilm.se/?id=1268069064489RA68

A very important message!

Louis' latest stats

2010-03-03T22:15:00.007Z

Age -- 16 months+

Weight -- 10kg

Prefered mode of transport -- bum shuffle

Most useful word -- mmMMMMAH!
which means: Mama/yes please/no, THAT one/Max/i'm hungry etc

Most used signs -- more/cat/bird

Favourite food -- pasta/dried apricots/chocolate/biscuits

7 Months on

2010-02-24T12:03:00.002Z

I spent a hour or so in bed reading through an archive of incoming text messages from the early days of diagnosis till the 2nd round of chemotherapy. A short period of time during which i received over 400 messages of support from friends and family.

Many moments came alive again - times which seem so distant now. Though the effects of what happened then are all too real now.
It took the 400 messages for my nausea to ebb away. A frustrating side-effect of the Oesophagectomy which remains stubbornly in place. I have my theories of what causes it and a few dietary principles by which i live to avoid it as much as possible - but i'm clearly missing something. Maybe it just needs time.

Anyway, i still have 900 more to read which cover the time from surgery to the recovery period at home. At least i can keep myself occupied during the next 2 bouts of nausea...

A day with the brothers

2010-02-23T09:54:00.000Z

Monks at lunch

It was one of the most unusual/fascinating things I think I’ve ever done.
I spent a day with a friend at Downside Abbey, a monastery inhabited by a community of Benedictine monks.
Antony’s holiday cottage was booked, so his fallback plan for our catch-up session was a place that he’d used as a retreat on several occasions.
The accommodation was fine and the setting was certainly austere, but the various brushes we had with monks over the day were exhilarating!

For me, the monastery newbie, the mealtimes were the highlight. They were in silence - almost. Antony and I would wait until the 20 or so black-robbed monks (early 30’s up to late 80’s) had filed/shuffled into the refectory.
We didn’t sit with the monks. Our table was off to one side, one corner of which was used as a stockpile for elderly monk medication – eg Dom John’s days-of-the-week tablet box of statins.

The meal would start with the Abbot “dinging” his ornate brass counter bell. The one exception to the silence was the monk chosen to read from a book, deemed by the Abbot to be of betterment to the community. The current passage was the chapter “Russia – the 3rd Rome” from Diarmaid Macculloch’s book - A history of Christianity. Hardly Jackie Collins, and it flew stratospherically over my head, but it was all part of this remarkable experience.
It required supreme self-restraint to stop myself taking surreptitious pictures of this amazing ritual. I failed once or twice and the monks around the refectory tables are just about visible.
The meal ended as it began with a “ding” from the Abbot. The reader finished mid-sentence… closed his book and the monks all filed out. You could almost hear the tumbleweed after they had processed out of the room.

It was a revelation to me. A good number of these men have lived the same routine at the abbey (starting with Matins prayer at 7am) day-in day-out for decades. One monk with whom we had polite conversation, Brother Martin, had been there for over 40 years. He was warm, articulate and super-intelligent – hardly the effect you’d imagine so much repetition to have had on someone’s mind. But maybe there’s method in the madness.

The Work of God for these monks as St Benedict describes it, is the incessant praise of God through prayer and study – mostly in silence. A simple, uncomplicated but devoted life. How utterly OTHER is that from today’s wild rat-race? The 24hrs there had a big enough impact on me. I'd like to do it again sometime soon.

And it begged a few questions of me. How often do I take time out – do nothing – sit in silence – take stock – take time to think things through properly?
How much stress, unnecessary baggage, anxiety, “noise” could I offload if I could “be” a little more and “do” a little less. Would it make life simpler, more manageable, more meaningful?

Hospital appointment - 3rd follow up

2010-02-13T00:51:00.005Z

My consultant seems to get stuck in theatre almost every time i've had a follow-up appointment. Its not a personal thing i'm sure! So i was weighed, prodded and listened to by one of his registrars again.

It seems that i will be visiting the hospital more regularly than i thought.
For the 1st year it will be every 3 months, then on a 6 month basis and after 3 years, annually. As there is no blood test that can determine a recurrence of Oesophageal cancer, the surgeons rely on patients to report any major weight loss as one of the key indicators. The registrar told me that if oesophageal cancer ever comes back, it most likely happens within 5 years.

Anyway, the hospital whizzy scales told me i weigh 73kg (clothed), which is significantly less than what our £10 Argos scales have been saying. Surely cheap scales are supposed to under-estimate!

On all counts the doctor was encouraged by my progress...

Seeing the light

2010-02-11T17:48:00.002Z

Claudia and i love this simple painting.

No, Max didn't paint it... its by the dutch artist Kees de Kort and depicts the very moment that a blind man has his vision miraculously restored.

The well-known story is described in the 10th chapter of Mark's gospel. Jesus is travelling from A to B and this guy called Bartimaeus happened to be sitting/begging at the roadside.

He was blind. His remaining senses sharpened to survive his poverty and total darkness, told him Jesus was coming. In his desperation to be noticed amid the noisy crowd, Bartimaeus performs the bible's first recorded tantrum. It worked and Jesus stopped.

Seconds later Bartimaeus can see. There was no long sermon, no credentials checked and no strings attached. This guy knew what he wanted and Jesus simply gave it to him there and then. It was as random as it was kind.

Bartimaeus was desperate, but he wasn't short of courage either. The vast crowd, always hungry for special effects, would have gone fiendishly quiet. He must have felt 100's of curious eyes on him, but he still dared himself to ask for the impossible.

The painting freezes the moment that followed. His eyes are filled with light for the first time. The colours are beautifully overwhelming. His cheeks are flushed with emotion, he's speechless. Having just won a sense, he's temporarily lost another.

Had he really expected it? who knows, but there were a few more followers on the road to Jerusalem that afternoon, that's for sure.

6 months (plus) on

2010-01-30T22:53:00.004Z

Well, i've had a week without nausea, despite snacking (for England) on all sorts of rubbish.

Have i learned anything?

Maybe the upper part of my small intestine is now working more like a stomach, or i've just beaten it into submission.

7 months+ on from surgery and my eyes are starting to twinkle again, i'm walking straighter and i weight about 75kg - which is enough... or else i'll start snoring again.

The mind is a different matter. Its quite hard to keep on top of my emotions at times. Work is particularly stressful. Not because of any pressure placed on me. Its just that i'm starting work again in a completely different place, mentally, to where i left off, all those many months ago. I'm a different person to the Pete of May 2009.
Is it a process of finding my way back to where i was or of finding out who the new me is? This question could be applied to many aspects of my life.

Heavy stuff.

GSCE maths - age 4?

2010-01-16T20:56:00.004Z

Shrugging off the question "in Japanese, what title is used as a mark of respect, as a suffix to the given name or surname?"...

He went straight onto the bonus challenge "count to 10 in German".

This boy is truelly amazing (and 100% free of pushy parenting).

The Big Freeze..

2010-01-12T09:02:00.000Z

Antarctica or the White Cliffs of Dover?

After driving 2700km in 10 days, half of it through snow and subzero temperatures, we were amused to see the wall-to-wall news coverage of Britain's arctic experiences, on the ferry crossing back to Dover.

Honestly. A few inches of snow falls and the government crisis group "Cobra" has a crisis meeting to decide what to do in this time of crisis. Admittedly we do get less snow than our continental counterparts, but to a large extent, the way we deal with it reflects the litigation-mad society we've become.

No-one clears the snow and ice from the pavements anymore in the UK, because if you tried to clear it away and then someone slipped over and hurt themselves, you'd be liable...
In Germany, the exact opposite is the case. Residents are obliged to keep the pavements clear of snow and ice in front of their houses. Otherwise, they are liable for any injuries. The result? Clear pathways, no injuries, the old and disabled are not stuck at home.

Schools close in the UK during snowy weather, because if a child or parent slips and injures themselves coming to school, they could successfully sue..

I won't go on with the "in Germany this and in Germany that" thing, but it is fascinating to see how differently 2 countries deal with the same conditions.

So we're back in the saddle again. Claudia started work today, i'm on 4 mornings a week and the boys had to go to nursery again. Poor little Louis' face was heart-breaking to behold, as he recognised the room he shares with the other "ladybirds". I think i'll pick him up early.

New Year - new anything?

2010-01-01T17:40:00.002Z

I've done it so many times before.. promised myself that THIS year will be different. I will learn a new skill, become a better husband, read more bible etc
But this new year will be significant for me, in view of something i wish NOT to happen, but which is something i can do nothing about.
I don't want cancer to be a part of my 2010.
Its all happened so quickly. This time last year i had no idea i'd be diagnosed with oesophageal cancer.
Now its theoretically all over, bar the all-clear, inevitably the doubts linger. Is it really all over? did they really catch every cell? might it come back?
I'd like to think that the millions of cancer patients in my shoes, think the same way. Its seems so terribly cowardly.
Its just that New Year offers a unique opportunity to ponder on the next complete calendar year of your life, and what you hope might/not happen in it. Based on 2009's revelations, i think i'll be opting for the sober hope for 2010, that nothing too dramatic occurs.
Ask me how i feel in February. I hope i'll have a braver resolution ready by then!

Party Party Party

2009-12-31T23:40:00.003Z

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

2009-12-30T17:29:00.001Z

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

2009-12-25T00:19:00.004Z

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

2009-12-22T12:15:00.004Z

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

2009-12-21T22:11:00.002Z

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

2009-12-11T13:08:00.002Z

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

2009-12-09T22:25:00.007Z

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

2009-12-03T22:31:00.002Z

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...

2009-11-22T21:46:00.003Z

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

2009-11-19T15:05:00.005Z

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...

2009-11-05T14:30:00.005Z

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??

2009-10-26T13:01:00.001Z

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!!

2009-10-21T21:33:00.000+01:00

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

2009-10-20T11:34:00.003+01:00

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

2009-10-16T22:53:00.002+01:00

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

2009-10-14T23:02:00.006+01:00

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..

2009-10-10T23:19:00.007+01:00

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

2009-10-08T11:31:00.003+01:00

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

2009-09-30T08:04:00.000+01:00

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

2009-09-26T23:02:00.002+01:00

...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

2009-09-21T12:09:00.005+01:00

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

2009-09-17T23:15:00.001+01:00

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

2009-09-16T11:53:00.004+01:00

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?

2009-09-15T23:34:00.002+01:00

A simply horrible day :-(

Quietly confident

2009-09-14T22:19:00.004+01:00

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

2009-09-09T22:53:00.007+01:00

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

2009-09-07T23:34:00.003+01:00

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

2009-09-06T19:36:00.003+01:00

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!!

2009-09-05T18:02:00.001+01:00

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

2009-09-02T13:50:00.001+01:00

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

2009-08-31T18:44:00.006+01:00

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!

2009-08-27T22:55:00.004+01:00

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

2009-08-25T15:34:00.005+01:00

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!

2009-08-21T21:19:00.003+01:00

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

2009-08-19T08:46:00.001+01:00

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

2009-08-17T17:51:00.003+01:00

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

2009-08-15T18:38:00.002+01:00

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

2009-08-13T10:39:00.002+01:00

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

2009-08-11T19:59:00.003+01:00

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??!??

2009-08-09T17:39:00.002+01:00

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

2009-08-07T11:17:00.005+01:00

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

2009-08-04T21:31:00.001+01:00

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....

2009-08-02T19:39:00.002+01:00

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

2009-08-01T19:35:00.000+01:00

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

2009-07-31T09:22:00.001+01:00

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

2009-07-30T20:14:00.003+01:00

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

2009-07-28T09:57:00.003+01:00

Status quo?

2009-07-27T09:34:00.007+01:00

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

2009-07-25T20:06:00.003+01:00

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

2009-07-25T04:10:00.004+01:00

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

2009-07-24T15:06:00.003+01:00

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

2009-07-23T11:13:00.006+01:00

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

2009-07-22T19:51:00.002+01:00

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

2009-07-21T19:05:00.006+01:00

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

2009-07-21T13:14:00.002+01:00

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

2009-07-20T23:26:00.007+01:00

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

2009-07-19T13:34:00.000+01:00

Returning home

2009-07-18T22:23:00.004+01:00

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

2009-07-12T19:47:00.002+01:00

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

2009-07-10T23:09:00.002+01:00

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

2009-07-09T19:30:00.005+01:00

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?

2009-07-08T09:05:00.002+01:00

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?