After - part one

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

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

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

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

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

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

Before...

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

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

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

Holding rabbits

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

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

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

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


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

Gutted (15)

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

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

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

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

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

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

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

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

Darren update 4

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

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

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

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

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

No more smoke-screen

(Max and Lily enjoying a barbeque lunch)

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

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

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

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

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

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

Sweden 2 (holiday in a nutshell)

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


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


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


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

Sweden

"Hej!" from Sweden! Our hosts have just installed broadband here, so i thought i'd post a mid-week word or two.
I took this photo at 4.30 one morning this week. We are staying on Skafto island, which is nearly on a level with the Orkneys. This means the days are very loooong.
It is a very beautiful spot. Morten's family have a cluster of cottages next to the inlet in the photo.
We have spent number of relaxed days barbeque-ing, kayaking, chatting and (for me) forgetting what awaits once we get back to the UK.
Today, Sweden celebrates the mid-summer festival. We went to a seaside village where hoards of beautiful blond swedes (many with flowers in their hair) danced around a "maypole" singing traditional songs. It was obviously a very popular festival. People of all ages were there.
Tonight's mid-summer meal, involved seafood of all kinds - salmon, herring, crayfish, caviar all washed down with schnapps.
I haven't mentioned the fishing yet. More on that at a later date.

Birthday

Max's 3rd birthday today. Unbelievable, it seems like yesterday that we were listening to Bootsie Collins in the delivery suite (theatre)!! We had a party for him in our church's refurbished crypt.
Actually the weather was so amazing, we spent most of the time outside in the garden.

It was a few fun hours with 6 or 7 of his friends (and their parents): with balloons, play-dough, face paints, paddling pool, rocket laucher, bubble machine, pizza, beer and bubbly.

Tomorrow, we're off at 5.30am to Heathrow, arriving in Sweden at about midday.
It might well be that we don't have internet access.
So it could be that there'll be a week of blog inactivity.
Then of course the tales of vikings, meatballs, hot tubs, enormous fish landed etc will flow.

Good news

I was a bit nervous this morning. Not because Claudia took my blood again at the breakfast table...
But because we were chasing this particular Neutrophil value (above 1.0) and i had no idea what the outcome would be. I dropped the "vacutainer" of blood at the RUH's pathology lab mid-morning.

I called up the hospital later in the day to be told the best news.
My Neutrophil count was 2.6!! (normal humanity starts at 2.5..)
Added to that my Hb (Haemoglobin) levels were above average at 14.9 and my platelet count was pretty healthy, weighing in at 196.

To non-medical dunces like me, my blood results were much better than expected and this was basically my bright green light for our Sweden holiday.
WELL chuffed.

Darren's now staying with us, which has been great fun, and he & i went to see the latest Terminator film in the evening. A great film if you're pessimistic about the future!

Damaged goods

We are pressing ahead with plans for our Sweden holiday next week.
We'll be staying with a group of friends in an idyllic spot on the rugged west coast.
More on that closer to the time.

Everything is now booked - flights, hire car, even the nice person who will meet us at Heathrow terminal 3 and drive off in our car.

Travel insurance has been one sticking point. As soon as i declare that "yes, i have had cancer in the last 5 years" but "no, it isn't terminal" and most importantly "no, i'm not travelling abroad for treatment", they've heard enough. Its like i'm damaged goods, although i personally don't see it that way.
We all have our European Health Insurance Cards (which replaces E1-11 form), but full travel insurance?? On one hand, you feel naked without it. On the other, you're peeved on returning home, that you spent so much money on the policy and haven't had the opportunity to claim. Or is that just (weird old) me?

The only thing that might throw a spanner in the works, is a blood test that i need to take before the trip. Saturday's "full blood count" will list all sorts of different values, including Neutrophils, which indicate levels of immunity.
I need a value of more than 1.0 for the doctors to be happy that i can travel safely. Normal levels are between 2.5 & 4. After chemo round 1 my Neutrophil level was 1.4.

I seriously hope it has bounced back by Saturday and would value your prayers that this happens.

Darren update 3

A lot has happened on the Darren front since the last update, and some of it is really encouraging.
Your prayer has been instrumental in this!
The hospital has given Darren a 10 day break, to have some rest and a change of scene before his next round of chemo and bone marrow transplant begins. A last taste of freedom for a while.

He has spent the last 2 days with his partner, which he says has been a lovely time.
This is great news.
Whilst the pressure on their relationship remains overwhelming, there is still the mutual will to be supportive. She wants to visit him during his bone marrow treatment in Bristol. I thank God for these flickers of hope/love.

As more details emerge (to us), it appears that the motives for moving up north and renting out their house were as much financially driven, as the pressure she was under from her side of the family (to move on). Its good to see the other perspective, though its still no easier to fully understand.

When Darren told her of the support and prayer he has been receiving, she was blown away.
This, he says, marked a turning point in how they were relating to eachother. It was as if a weight was lifted from her.

On Friday, Darren has a hospital appointment in Bath, after which he will be staying with us and looking after our house while we are away. Friends and family will be visiting, inviting him for dinner, taking him to the pub etc, during that time.

Do continue to pray for Darren and his partner. Prayer is starting to transform things for them both and we want to see God's amazing work continue.

Partial booking

I got a partial booking through the post today - for a pre-operative assessment appointment.
NHS-speak must be catching up with german, with all its complex lego-word constructions.

I guess it means that i might have an appointment on the 2nd of July at the BRI, at 11.20am.
...where they might take my blood and potentially give me a chest x-ray and echo-cardiogram in preparation for surgery, which should be on a different day.
I didn't know i'd need one of these appointments, so the surgery picture is starting to fill out.
What else might there be lying in wait?

Today started at about 3am, with Max shouting "DAD!! stop that piggy noise!".
He was of course referring to my snoring, which due to the fact that we were sharing his room last night, was loud enough to wake him, much to his frustration.

Resolutely stuck

There'd be nothing natural about it if my hair decides to evacuate, but soooo faaaaar... so good.
Theories abound about how it does choose to go: gradual thinning, in handfuls, coloured hairs first leaving the grey hairs. Maybe that's why i haven't really noticed anything!!

My hair has never really been an exciting affair. Except for my student days when i didn't wash it for 2.5 years and grew dreadlocks - now THAT was cool! (even my dad thought it was.. cub's honour).

Our family is blessed with a rather unruly frizz, if allowed unfettered growth.
My spent my early days and adolescence maintaining a veritable mushroom, before the freedoms of natural oils (i could write a PHD) and matted hair elevated my hairstyle to the pantheon of Bob Marley cool. Then i had to get a job.
I sneaked the last remaining dread through the interview process and first few months of office drudgery, hidden inside a new-look "shroom". The day my boss first observed it, was hilarious.

The clippers have followed since and its been Grade 1 & 2 all the way.
All except for one spell at Grade 0. The weekend i proposed to Claudia in Paris (Nov 1998, -5C).
I'd arrived in Hamburg months before, didn't speak much german then and popped into the barbers for a quick trim before whisking Claudia away - hmmm.

Will chemo bring some new influence, angle, approach to the thrilling story of my follicles?

Back at home - Treatment update

As with Chemo Round 1 recovery, i came home to Claudia, Max and Louis at lunchtime today (Monday). Its great to be back! Claudia has managed things here so unbelieveably well. Praise Praise Praise.

Max has gone through a serious growth and language development spurt in the last week or two.
A few juicy quotes will be following soon.
And Louis smiles sweetly while scratching his head, in a Laurel and Hardy-esque style. Aaaah.

News on the treatment front. The CT Scan from Thursday revealed nothing of concern.
So the tumor is still small and in-check and most definitely didn't flourish during chemo, which is more than reassuring!

Regarding surgery, i have been given an operating window, from the 29th June to the 13th July.
They organise lists this way to accomodate all eventualities including delays, emergencies, cancellations etc.

A provisional guide date for the operation has been set for Wednesday the 8th July (its likely to change).

Side-effects remain unchanged to the weekend. Hmmmmmmmgh!
ouch.

Weekend (PG)

I have been coming to terms with what seems to be the cumulative effect of chemos 1 & 2.
Or a lack of "quantitative easing" as my sister would say. I hadn't expected this.
By Thursday last time i had cracked it - i'm still waiting now.

Apart from that it was a plodding weekend by anybody's standards.
Two days of reading, sleeping, general moaning and grumbling, drinking, drinking, drinking.
If i had a pound for every time i hopefully visited the loo, i'd be a... a few pounds richer if not lighter.

Reading the Princess Bride at the moment. A novelette of monumental proportions.
How the movie didn't win the Palme D'Or, an Oscar and a Golden Globe etc is inconceivable...
Its an all time classic. Rent the DVD!

Boys visit

(my mum struggling with the camera... and me with my composure)

3 friends - from Manchester Poly days - Dylan, Louis and Mark (photo to follow) came to visit today.
They travelled up from Totnes, Somerset and Bristol to hang out, listen to, encourage, laugh and pray with me (they nearly drowned me in olive oil!).
They're like bedrock.
Over the last 13 years we've met up (at semi-regular intervals) for weekends of... well, what we did today. They are precious companions and it was such a tonic to see them.

Follow up CT Scan

I was back at the hospital this evening for an after-chemo (routine) CT Scan with contrast.

I've had enough of needles for a little while...

The results will come through next week and will hopefully show that the tumor will be smaller and therefore more easily operable.

While there, i met Nurse Jo (by chance). She's the specialist nurse i mentioned a while back who's been managing my treatment, and will be scheduling my surgery in the next few weeks. She didn't seem to think i'd be losing my hair after all. We will see, Jo!

Darren hung out with me for the CT Scan. Bless him, he's great. But he has an incredibly tough journey ahead of him. Below is a bit of an update, so you can uphold him in your thoughts & prayers.

Darren update 2

Darren went to see the bone marrow specialists in Bristol today, where his treatment will take place. One great answer-to-prayer in the search for a bone marrow donor (see post from 21.05), is that they have found over 20 potential matches! However, once the perfect match has been selected, the road to recovery is going to be an incredibly tough journey for him.

He will require another round of chemo, followed by 8 weeks of near isolation, where his existing bone marrow is killed off and the donor marrow introduced to kick-start his defences again. This will hopefully wipe out the leukaemia once and for all. He will be debilitated for much of this time and i imagine it will be months before he's back to full strength.

Success is by no means guaranteed and if it doesn't work, his overall chances of surviving his leukaemia are drastically reduced. This was a big wake-up call for him.

Emotionally, he is very fragile at the moment. Added to this, his partner is now leaving, has rented out their house from July and is moving up North again. The snapshot of his current circumstances is pretty grim: He is very seriously ill, without any immediate family support, out of work (for obvious reasons) and effectively homeless from next month.

Please pray for Darren. He is one great guy - a real character - and he has really grown into our hearts over these past few weeks. I've been encouraging him to take things one day, even one hour at a time. How else can you approach such a mountain? He has a faith in God and its really being put to the test at the moment.

He needs so much to come together, before he can start to enjoy the healthy, comfortable, supportive, secure, day-to-day lives that most of us take for granted.

While Claudia and i are committed to doing what we can for Darren, we have quite a lot to go through ourselves in the coming months (and he is 100% totally aware of this)!! We want to harness the power of prayer for Darren.

I believe with your prayers for him, we'll see exciting breakthroughs happen for him. They have already started (finding bone marrow donors). Let's keep going, there's a way to go yet.
Jesus said of himself "I have come to give you life, life in all its fullness" (John 10 v 10).
We want this life for Darren.
I will keep the updates coming on his progress - thanks for reading this!

I got sneaky

It got the better of me, just before going back into hospital for Chemo Round2...
I really wanted to know who was looking at the blog. And boy, has it been fascinating!!

I found a piece of tracker software that shows me from where and when people have been viewing the blog. At first i wasn't sure i wanted to do this. I was wondering whether it would make me feel a bit exposed or under pressure. But its been really encouraging to see how many people are involved and how widespread the fellowship has become. In a way, it paints a lovely picture of the prayer support that's been covering us at this time.

You'll see from the image, the latest european hits come from the UK and Germany.
The red spot shows the location of last person to view this blog...
There have been between 50-60 people visiting per day and its been worldwide too. Amazing.

The tracker's world view has showed hits from Poland, Uruguay, Japan, Bangladesh among many other places. And with some reliance on my A-Level geography, i've tried to imagine who some of the far-flung dots might be...

Eg: Canada - Lee & Angie, Joe & Suzie, Becky & Dan. US - Helen & Ben. Mexico - Max. Jordan - Susanna. Australia - Stu & Fairlie.
I may have got it wrong, but anyway its been fun being sneaky. Hope you don't mind too much!!

To view the stats, scroll to the bottom of the blog page and click on the "sitemeter" logo. This will take you to a new page which shows all the summaries, world maps, country pie-charts, who's on etc - enjoy!

Summer started on Tuesday morning

It felt like all my Christmases rolled into one when i left the hospital!
My first day of being able to enjoy the sun...

During my stay, it was getting harder and harder to bear.
On Monday the curtains remained resolutely closed on the Bay windows.
The weather has been so good, but inpatients are not allowed to leave the ward once attached to a chemo drip, which for me was the last 5 days...

I'm now based at my parents again, where i'll be till the weekend atleast.

It is even more important to remain bug-free, during this recovery, as we are planning to fly to Sweden on the 15th for 8 days. We'd booked this long before we knew anything about my cancer. So it will be a great acheivement if we can go before surgery (for which we don't yet have a date).

The photo shows me, fresh from the ward, and brother Dave in our gorgeous green garden.
BTW - Dave recently started a fab company called Groovybooth. They hire out party photobooths to corporate events, weddings, parties etc. People LOVE them - check it out.

www.groovybooth.com

Chemo Round 2- Last day!

My last infusion bag is now emptying itself into my right arm. That's about 10 litres worth of fluids since last Wednesday. Its quite hot in the ward today and 25 degrees outside, however no sun for me for a while!
One of the chemo drugs makes my skin sensitive to sunlight.

I haven't really banged on about my side-effects this time. But they're more or less the same (nausea, constipation and fatigue). Except that instead of crazy smells, i have a strong metallic taste in my mouth, a bit like when you've chewed on a pencil for too long and can taste the lead. But hey, could be a lot worse.

A good number of visitors lined up today. We continue to be uber-blessed by the love, prayers and support of friends and family. Thanks so much!! We love you.