Wednesday 30 September 2009

Low blood-sugar moments

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

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

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

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

Saturday 26 September 2009

The Wedding

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

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

Monday 21 September 2009

2 Months on

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

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

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

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

Thursday 17 September 2009

Bath to Herne

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

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

on route

Friday am - somewhere in Belgium..

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

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

Wednesday 16 September 2009

Bend and Stretch

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

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

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

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

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

Tuesday 15 September 2009

Did i speak too soon?

A simply horrible day :-(

Monday 14 September 2009

Quietly confident

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

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

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

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

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

Wednesday 9 September 2009

Music & Movement - the redemption

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



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

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

We're more worried about the cushions.

Monday 7 September 2009

Darren Update 5

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

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

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

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

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

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

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

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

Sunday 6 September 2009

A new cancer

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

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

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

Where is God in all this?

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

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

Saturday 5 September 2009

Tin!!

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

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



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

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

Wednesday 2 September 2009

Nausea

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

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

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

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

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