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!