Water on the lung

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

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

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

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

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

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

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

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

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

Ideas at barbecues...

Back again

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

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

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

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

Message from Pete

Status quo?

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

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

Stoned

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

The valley

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

Pain

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

Cocktail

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

Breathing a sigh of relief

This is Claudia writing.

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

Thank you all for your prayers and support.

Thank you GOD.

Short reprieve

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

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

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

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

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

Back to Steve (and Megan).

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

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

eerm, back to you again Claudia!

Admitted

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

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

Over to you (gorgeous) Claudi xx

Last Supper

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

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

The operation itself will be on Wednesday.

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

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

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

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

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

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

Life's a Roller Coaster

Returning home

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

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

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

Pain

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

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

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

----

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

New new date

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

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

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

I would value thoughts and prayers in the next week.

Super-sized operation

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

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

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

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

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

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

Surgery... what surgery?

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

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


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

Now, but not yet

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

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

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

Surgically adrift

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

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

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

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

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

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

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

Louis' dedication

Went like a dream.

New operation date

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

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

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

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

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

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

Bugs from Spain

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

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

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

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

After - part two

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

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