Claudia-kitten

I wanted to take the opportunity to say how wonderful Claudia is. She hasn't featured often enough in this blog and has been coping so amazingly well with all the demands and extra pressures of this difficult time.
She's an incredible wife and mum.

In one sense my job is easy, to get better. Claudia however has had to manage everything else: both boys and their routines, keeping our home in order, food shopping as well as many other commitments during the week.
On top of this, she manages to visit me 1-2 times each day. She's the biggest star!!

The many offers of help (food, financial and childcare) we've received from friends and family have been awesome and it would have been even more difficult to cope without this support.

But today's blog entry belongs to Claudia. Ich habe dich so sehr lieb schatz.

Looming nausea

18 visitors yesterday!! Brilliant! Time flew by.
Today is a bit more pedestrian by comparison.
And that suits... i'm onto the rough stuff now, so i'm on a gradual descent towards nausea & constipation again. Not so brilliant!

Actually, my Groundhog Day metaphor from a few days ago was a bit pessimistic.
Things have turned out differently already. Shaun has finally gone home after 3 weeks treatment. I will miss him. So now i have 3 new room-mates (George, Roger & Tony) to get to know.

Also, Darren negotiated me 5 days of free telly & internet, after some technical problems with the service during my last stay. He's such a wheeler-dealer, he managed to blag himself a whole month's worth of free service. He could sell eskimos yellow snow!

Claudia's crazy sisters!!

CHECK THIS OUT!!

Yesterday morning, a large parcel arrived from Claudia's family, containing typical german survival items: letters, toys, photos, food and a cd with some mad stuff on it. My sisters-in-law enjoy spending their evenings making wacky home movies. They are SO upbeat, i had to pop one of them on the blog.

This one's called 'Cuba Pete'. Eurovision 2010 or Germany's Got Talent here we come!

Are you continent?

Well here we go again. Patient no. 0365628 here. All plugged in and 're-hydrating'.
I'm typing this from the exact same bed in bay 3.
Darren evidently did an excellent job of procuring me the same spot, next to the window. Shaun is my neighbour again, but Darren is in a side room as he's neutropenic (at risk of infection).
I was clerked by a student nurse who was keen to ask me ALL the questions on her 5 page form.
Was i continent? Can i dress myself? Does my home have a ramp to the front door?
I know i have gray hair (for now) but really... :-)
My bed wasnt ready when we arrived at 3pm, so Claudia,little Louis, Darren and i went for a coffee in the hospital's atrium cafe.
My drip machine battery promptly ran out, so i cut a lonely figure next to a far-flung plug socket (photo), much to Claudia's amusement.
The bed wasnt available until 8.30pm - it turns out the poor old man was discharged a day early.. and he only had his pyjamas with him.

So it begins... again

Ever seen the film Groundhog Day, where Bill Murray's character relives the same day over and over? Well this is my version of Groundhog Day in miniature. 6 days cloned to perfection. I've even asked Darren to organise me the same bed again...

This is me, Chemo Round 2 - Day 1, 82.2kg and feeling absolutely fine. To be honest, i'm not relishing the thought of more nausea and constipation. But hey! let's get it over with. This cancer is an unwelcome guest in my body and i just hope/pray that the chemicals do their job of knocking it into submission.

Blood test - Green light

This is my last full day at home before round 2 chemo starts.

Today i had a blood test at the hospital to check that all my "levels" are satisfactory for chemo to restart. Just what these levels are.. i'm not sure, but it would probably confuse me if i found out.

Thankfully, i have managed to avoid any bugs/colds in the last 2 weeks, so if they have a bed for me on the ward, i will be attached to a drip machine by this time tomorrow.
It will be another 6 days of treatment. Serious deja vu - exactly the same as round 1.

6 days of hospital cuisine - the sound of neighbours vomiting - those synthetic SMELLS - pills, pills and more pills. On the other hand, Darren will be there and most likely Shaun too, which will be great. To think that they've been there since before my 1st round started.

New side effects? This chemo round might cost me my hair, which i'm really intrigued about.
How much will go? Will it be just my head hair and/or will i have a baby-smooth back again? mMMmm (sorry, i couldn't resist!).

Apparently if/when it goes, your head hair comes out in handfuls.
I've half a mind to ask for an NHS wig (to go with my tortoise-shell NHS glasses). Any style suggestions??

Louis - rhythm and blues

It was all going so well until...

On your own time

When i was a little Pete and had grown out of my afternoon naps, my parents encouraged me to have "on my own times" in my bedroom to read, listen to story tapes etc after lunch.

Much as i dislike the memory of these times, i've found myself suggesting Max do the same, now that his naps have become more sporadic. Don't call social services just yet!

There is a terribly selfish parental motive behind this practise.
Its the "on OUR own time" that's more important. The guilty justification that our little 'un will somehow cultivate a love of literature during these times, doesnt really cut the mustard... But we just can't help ourselves!!

It had gone unnervingly quiet in Max's room today. Was he engrossed in a book? dozing? playing musical statues (for 1) without the music?
We left it, enjoying the relative peace and quiet.

Max appeared a while later. The photo reveals the fruits of his "own time" creativity.

Grace and Hal

We've received so many wonderful cards and letters of support over the last few weeks.
Thank you thank you thank you!!!

This is one of them. A spontaneous creation by Grace (6).
The picture shows Claudia, Max and Louis sending me their get-well wishes.

It hardly needs translation, but the written part says
"Dear Pete, i hope you get better soon. I hope god is comforting you. And are you missing your family? Love from Grace and Hal"
Grace always signs from Grace and Hal (her brother) - so sweet!

Oma und Opa

Claudia's parents have been with us for the past 12 days.
They have been amazing.

Quite apart from the emotional and spiritual support they've been, their practical help and generosity have been overwhelming.

They've sorted out the garden, cooked, painted our bathroom, looked after Louis and Max, wood-preserved our decking, deep-cleaned our revolting hob, repaired our wooden flooring, serviced the car and financed a dishwasher.
What incredible in-laws to have!!

They left after breakfast today and will have arrived home by now in Ost Friesland, North Germany.
Bless them, they will be back around the time of my surgery (July/August) to support us.

Darren (update)

An update on Darren, who i shared a bay with during my Round 1 chemo.
I visited him today at the RUH. His spirits are up, but he had some bad news, which he doesn't mind me sharing here.

His best clinical chance of beating Leukemia would be to have a bone marrow transplant.
To do this, a donor with matching bone marrow would need to be found. The closest match would be a relative, but non-relative matching donors can also be used. But these are hard to find.

A member of Darren's family had offered to be a donor, but the tests done on her bone marrow showed that she wasn't a match. So Darren is on a waiting list until a donor can be found and time isn't a luxury he can afford.

Could i ask you to pray for Darren?
That a suitable donor can be found for him quickly. That his Leukemia will be cured.
That the stress all this has put on his personal life (relationship with wife, home, finances) would be lifted and above the problems resolved.

Thank you.

Healthy

Its fascinating how subtle the return to health has been. A couple of days ago, i couldn't have touched a cup of coffee, bottle of beer or bar of chocolate. Today however, my appetite has seemed aggressive in its enthusiasm and i'm consuming 2 of the above as i type. Cheers.

So, on the computer game scale (out of 10) its:
Health = 9.5 | Strength = 8 | Mental = 9.5 and Lives left = 1 (+1)

Health is such an awesome thing. But BOY did i take it for granted before my diagnosis.
I thought i was indestructible.

I remember thanking God the day before my diagnosis, for the beauty of health and the wonderful life He has blessed us with. Well, its still a wonderful life and yes i have been asking God a few googly questions, but its actually brought everything, including the beautiful things into brighter, sharper focus.

No, i'm not trying to be/appear to be a saint. Its weird, but true.

Afternoon practise

Just another hour to go and then he can play.

Back at home

After nearly a week with my amazing parents, i'm back at home with Claudia and the boys.
Its great to be back.

My immunity should build itself back up again now, although I still haven't much energy.
When i told Max i'd be staying at home now, he replied "i'm REALLY impressed!".

Either he's setting the bar nice and low for me or the comment was more worrying...

Afternoon walk

Wisdom

I'm glad this isn't a spoken blog. You wouldn't understand what i'd have to say today.
My tongue is sore, swollen and would probably be more at home in some species of amphibian.
This is one of the effects of chemo, and i thought i'd got away without it.

This side-effect thing is a bit like a lucky-dip. What's its going to be tomorrow?
Sore palms? Gritty eyes? BRING IT ON

Not really. If truth be told, while yesterday was a step forward, today was depressing in more ways than one.

Still, there is always a silver lining to look for with each day, and today's belongs to Max.
He's 3 next month, is a little dynamo and is making groundbreaking discoveries all the time.

Today's was "Mummy? Girls don't have willies... they have only dresses!!"

Weird phase (Neutropenic)

So i'm getting better from round 1 chemo, my hair's still attached and apart from a sore throat and a few murmurs down there... things are looking up.

Although i'm feeling much better, i still have to watch out for infections because my immunity is at its lowest in the period 7 -10 days after the chemo started. We're now day 8/9.

Its a bit of a unknown thing, this neutropenic phase - am i really at risk? if so, how long is this risky period? More info on Neutropenia

The advice is that if i get an infection or a temperature of above 38 degrees, i have to go back to hospital where i'd be put on strong i.v. anti-biotics and this could delay round 2 chemo for upto a week. SO... who's up for a swine flu party??

Avoiding runny noses, washing hands and careful diet/food preparation are the first line of defence. This should be do-able and i'm checking the best-befores in my mum's fridge like never before! She doesn't like that..

Cancer diets, related health products, plus my "new" diet as i re-learn the art of eating after surgery are a whole new world for exploration. More on that and advice we've been given in a future post.

Anyway enough cancer-talk, tonight's excitement is a Shabbat meal with my eldest brother and his gorgeous family!

And rest...

This is where i'll be for the next few days. With my folks (my mum - dad's away). Its a great place to be, but i do really miss being with Claudia and the kids.

The road to recovery is a funny one. Yesterday evening, my constipation turned a corner (so to speak), which has made a big difference to the nausea. Interestingly.
I'm weaning myself off the anti-sickness drugs and trying to stay up a bit more.

Mentally though, its been a bit harder work.

Thoughts of returning to the hospital (on the 27th), have been making me feel quite anxious.
I spoke to Darren briefly last night in his ward. During the brief chat i heard his drip machine go off (the "end of infusion" alarm) and it made me feel physically sick.
I'm sure it'll be ok, but the road ahead (chemo/surgery) doesn't exactly make for marvellous day-dreaming material.

But please keep Darren in your prayers. Not only is he having to cope with a new onset of leukaemia - after only 9 months in remission with 11 months hospital treatment before that -but his wife (who lives 1hr away, is in a dead-end job, away from her family) isn't managing with the renewed stress and in her desperation is considering her options...

A quick retrospective

I'm not sure you got to see the mess i made of my hospital space!

From right to left, you can see the TV/Internet/Phone console (amazing), then my "buddy" drip machine. Then my gorgeous wife who's been an absolute superhero. Then me looking too relaxed.
The remaining books, drinks, magazines, menus, chocolates, fruit etc took about 1/2 hour to clean up on Tuesday morning when i left.

Life on the outside

On leaving hospital this morning, i've spent a sleepy day at my parents house in Combe Down, Bath (photo of convalescent bliss to follow).

This will be my base for the next few days... while i recover my strength.
I should feel fit again soon (still weak, constipated and a touch nauseous), but by the weekend my immunity will have dropped to its lowest ebb as the chemo drugs continue to do their business. So i'll need to be careful around colds and sneezes for a while.

I really miss Max at the moment - i haven't seen him much during the last week :-(
He's seemed a little subdued during hospital visits. You just wonder what's going on in his tiny mind... bless him.

But guys, thanks again for your incredible encouragement, support and feedback. Its been really really fantastic and certainly helps keep our spirits up!!
Do stay tuned for more - treatment developments, family pics, weird videos clips etc.
Phase one is over. Phase two chemo to go, then surgery - and i'll be needing you ;-)

Chemo Round 1 - Final straight (Day6)

I'm on my last chemo drip now and there's a series of air bubbles moving down the tube toward my arm.

It's not supposed to happen. A full tube of air bubbles would apparently kill me, but dont't worry, i shouldn't be in any mortal danger here. (My brother Dave spent the last 1/2hr of his visit flicking bubbles back up the tube).
Just a few millilitres of chemicals to go, followed by a saline flush and then Round 1 will be over.

Round 2 will be the same again... and starts in 2 weeks (27th) if i can avoid catching any bugs in the meantime.
From tomorrow, l'll be spending a few days at my parents house, to get some strength back.

I'll not be upset to leave hospital... but in the time i've been here, a sort of community has built up between the 4 of us lads in the bay. And i will miss it. We have this hideous disease in common and have been able to support eachother, almost like a "band of brothers". I've had the chance to pray with one of the lads, Darren, which has been amazing. Do think/pray for Darren, Des and Shaun as they battle away with their different cancers.

There we go, at last the drip's been taken out. Time for a soak in the bath, more anti-sickness tablets and a some constipation-busting yucky juice.

Smells (Day 5)

In the struggle against nausea (which is getting harder), my nose is fast becoming an enemy.
A particular smell, that doesn't bother the other guys in my bay, is driving me to distraction.
Am i pregnant? It must be a side effect of the chemo drugs (and nothing to do with my personal hygiene.. honest)

Apart from the natural (noises &) smells on our ward, there are a host of synthetic scents. On an individual basis they'd probably bring some relief. Together, they form a nightmare cocktail.

There's the motion-activated air freshener spray containers in the hall (fruity alpine yuck). A myriad of soaps, sterlising hand rubs and wipes (uuuuh). The lovely cleaner lady has just mopped our floor, using some strong lemon smelling detergent (please..)

But the real culprit turns out to be a new rubber tornique product (on every bed), used around your arm when taking blood. Its floral-perfumed rubbery stink is simply stomach churning!! Since wrapping mine in a plastic bag, its not been SO bad. Sorry for going on...

My next door neighbour is chundering again.

Reading - 2 Units

I'm reading a book by Dave Hopwood called the Bloke's Bible, which explores various biblical stories with a fresh narrative, followed by the author's musings as he sits, pint in hand in his favourite local.

Today i was reading about (soon to be King) David on the run, scared, hunted down as described in 1 Samuel ch 24. A lonely place to be which inspired him to write Psalm 13.


David's gut-wrenching, screaming questions in Psalm 13 verses 1& 2 reveal his remarkable honesty with God. "Oh Lord, how long will you forget me? forever? How long will you look the other way?"
He's in a dark place, but he ultimately trusts in God's reliability to bring good out of his life-threatening situation.
"But i will trust in your unfailing love, i will rejoice for you have rescued me.." (verses 5&6)


Despite the 3000 yrs separating David in the Judaen Desert and me on an Oncology ward, i draw comfort from his experience. I sometimes feel my life's in danger, although my cancer has been caught relatively early. Statistically, i don't have a 100% chance of surviving all this. Weird..

But i have seen God at work in all of this (and i'm not sure he's a great fan of statistics). I have sensed his peace in some of the most testing times. He has blessed me with the most awesome supportive circle of family and friends. And i have a sneaking suspicion that he's not finished with me yet!



I discovered last night that one of the lads i share this bay with, also has a faith/hope in God. Another little spark in this dark(ish) place.

Lazy Saturday (Day 4)

Everybody's really sleepy in our bay today. Weekends are a lot quieter, with fewer staff around.

2 of the guys here urgently need radiotherapy which won't happen till the start of next week. I just hope they're not losing valuable time. Cancer doesn't have a pause button.


As for me, just about half-way through my 1st chemo regime, i'm keeping on top of the nausea with regular medication. The photo shows my morning fix, the plastic tube is the chemo drip.
Each 1lt infusion drip bag (lasts 22hrs) costs the NHS up to £1000, so they make sure every last drop goes in!


The main challenge for me is the mental one at the moment. Splitting up my day a bit like Hugh Grant in About a Boy into units seems to help. Reading - 2 units, Dozing - 1 unit, Blogging - 2 units Nattering Visits etc.


Claudia's parents arrived in Bath last night. It'll be great to see them.

Constipated / 83kg (Day 3)

Guys, thanks for all the wonderful texts, emails, calls, visits, blog comments, thoughts and prayers.
Your love & support are massively uplifting and the many messages are a great connection to the glorious outside world i can partially spy through the high bay window (i love this time of year!).

I hope you're all well.
I'm not too bad at the moment. Tired, slightly constipated, 2kg heavier from the extra fluids and keeping nausea at bay with regular pills. At this stage its difficult to determine how many of these are emerging side effects or if 2 days in hospital does this to everybody. My appetite is still good, even for the hospital food. Gloopy vegetable soup and beef sandwiches tonight. mmm.

My drug chart tells me that i have 3 full days of chemo left in this 1st round, meaning that i should be able to go home late on Monday night. Roll on Tuesday morning!!

Life on William Budd (day2)

Of the 4 of us in my bay, i have the best prognosis (chance of beating this) by far. This was really shocking to me.
Ok, i have cancer... which is a horrendous label, but 2 of the other guys have advanced cancer (stage 4) and the third was only in remission for a year before his cancer has returned.

Despite this depressing reality, the atmosphere in our little area is chatty, supportive and honest.
These seasoned in-patients have taken it upon themselves to show me the ropes, order from the "secret" snack menu, and encourage me that my chemo won't be too bad.

Speaking of which, my 1st chemo drip started at 4.30. I'm now full of platinum, the 2nd drug is on its way in and so far i'm not suffering any side effects. Thank God.
The photo shows the moment the platinum drug 1st entered my veins (there's some mild anxiety showing through..).

Bed 3 , Bay 3

I'm lying in a 4 bed bay, attached to a drip machine . Its on a stand, with wheels. Wherever i go, it goes. Fun..

For the first 24hrs, i'm being "hydrated" with saline. The proper chemo infusions will start tomorrow night.

First impressions: Life on the ward (for patients) is excruciatingly slow. I'll do well to keep my mind active and i'm sure this blog, books, visits and my neighbours will help.
More about them tomorrow.
I've just found the remains of a daddy-long-legs in my bedside light. Could it really have been there since last summer??

So it begins...

We called the hospital this morning. They have a bed for me...
So my treatment will be starting from 1pm.

Today, they will be filling me with 3 litres of saline ready for the first dose of toxic stuff tomorrow (Cisplatin). This platinum based drug can give you tinnitus, itchy palms, nausea, hair loss and the kidneys certainly don't like it. Did i mention the runny eyes and poos? There's never a dull moment being a guest of the NHS!

I'll keep you annoyingly informed of how i'm doing!!
While i'm in hospital (6-7 days), Claudia will be creating the posts. Thanks Claudia-kitten!

So here we go, an image of me (81kg) from day 1 - no that's my real hair, i haven't had chemo yet! Nervous? Yes a bit. Would value your ongoing thoughts/prayers.

Where the hell is Matt?

You may well have seen this before, but if you haven't PLEASE check it out!!

A guy travels the world and instead of taking photos of himself to send home, he posts videos of himself on a travel blog, dancing (badly) in all sorts of far-flung places.
Simple and quite strange, but over time, his blog became increasingly popular.
So much so that people all over the world wanted badly to dance (badly) with Matt.

So Matt set off around the world again, keeping in touch with his followers via his blog. Letting them know where and when he'd be dancing.

Click on the link to see how the story developed.
Where the hell is Matt? (click on the video window "Dancing 2008")

On the one hand its silly, simple fun. On the other hand i've had to fight back the tears...
It somehow broadcasts a joyful message that crosses just about every language and cultural barrier. Everybody wants to be part of it.
Incredible that one man could have caused such a global endorphine rush!
I think i should go to bed now.

T-minus 1 day

For part of my final day as a "free man", i took my brother Dave fishing to the exact same spot on Chesil beach (as on the 23rd). Expecting to harvest more mackerel, we caught 1 mini cod between us after 3.5 hrs fishing. Hmm.
But what meant most to me, was spending some valuable quality time with him - chatting, laughing, eating sandwiches, company.
Some things, when distilled to their most simple, can be incredibly meaningful/beautiful.

This evening, Claudia and i went out for dinner at Jamie Oliver's restaurant in Bath.
It was a bit like a "last meal". We reminisced about the favourite-est ever meals we'd had together. The flavours were so intense and we ate like pi... a lot.

Opportunities to dine like this may well soon be a thing of the past. Post-surgery, i will have a much smaller stomach (inside my chest) and i'll become an expert on children's menus!

Louis (6 months)

Bit of a descending scale there...

us

Asking a stranger to take your family photo is a thing isn't it?
"excuse me... could you, would you mind. You press it... there". I've yet to stumble on a David Bailey.
Anyway, with a bit of cropping we've got something to show for it, even if Max and Louis don't seem impressed.

Lee Abbey

It took a while to "arrive"... but we've come back having largely enjoyed the time we spent at Lee Abbey.
Our emotional/spiritual attachments to this stunning place run very deep. It is always an amazing experience to be there.

This weekend seemed to be the last opportunity to get away before the big changes begin. And that feeling persistently followed me during the weekend. Because once chemo gets underway, i feel i'll be entering a new chapter in my life.

I imagine it a bit like the scene in Finding Nemo, where Marlin and Dori (fish) arrive off the coast of Sydney. From the clear ocean, they're viewing a murky cloud of polluted water knowing they'll have to enter it to find Nemo (another fish). They're clearly nervous of whatever's hidden ahead.

The sunset (photo) was particularly significant for me. I've watched dozens of them at Lee Abbey. But as i watched this one, i was aware of 2 "voices" in the chatter of my mind. My anxieties were pretty noisy, but God was unmistakeably there too, giving me a sense of peace about whatever awaits me, taking me back to Psalm 27.