"Down down, deeper and down"

Or "The only way is up" whichever you prefer.

Mike's numbers for the day:
WBC: 0.4
Neutrophils: 0.4
Platelets: 79

Mike started his G-CSF injections today. I forgot to mention (several times) that the ice lollies must have done something as Mike's mouth is merely a little tender. It certainly isn't causing any problems when it comes to eating and drinking.

Apollo +6

The Martians have landed.

Of course Apollo 6 was the last unmanned flight and was the final mission to test the rocket before 3 poor blokes got sent up. I discovered today that the real Apollo 6 launch didn't receive the press coverage of the other Apollo missions as it launched the same day that Martin Luther King Jr. was shot. Hope nothing similar happens today!

Mike is obviously on the way down, which is to be expected. Funnily enough he seems to look more tanned each time I visit, I reckon there must be secret sun lamps in the showers, or as in Roobeedoo's post, spray tan booths.



He almost looks THIS tanned.

I have so say I think this is the strangest New Year's Eve I have ever known. Poor Mike will on the anti-sickness rather than champagne as the clock strikes 12, not the best way to see in a New Year. I can only hope for a better 2011 for us all dear readers.

There is no escape!

I was going to entitle the post "5 gold rings" but under the circumstances that might have been taken as extremely bad taste. On day +3 Mike was convinced he was going to avoid the side effects of the 'M'. Yesterday he thought "OK I feel nauseous but I can cope."

Today is a different story. Not only has his nausea turned to actually being sick, but he also woke with a headache. Now to me a headache is simply a niggling pain that I know is there but I can work through or at worst needs 1 paracetamol to cure it. For Mike it is so bad that 2 paracetamol do little to alleviate the pain and until it goes away there is nothing he can do but curl up in a ball and hope.

(I've tried poking him in such situations to see, if like a hedgehog, he will uncurl, but it doesn't seem to work.)

Addendum:
For all those number people out there I thought I'd share some of Mike's numbers.
24/12
WBC: 7.0
Platelets: 167
Neutrophils: 6.4

30/12
WBC: 1.4
Platelets: 96
Neutrophils: 1.3

Plus fours day.

I told you I was looking forward to today: It's plus fours day!

A pair of these little beauties would be perfect for Mike today as they are fitted around the knees. I'm sure you don't need an explanation of the reasons why. Poor Mike was up and down the corridor last night, clutching his baby wipes to his chest. It was just as well that he didn't have a drip stand to drag with him, or there may have been a rather embarrassing situation on the way. They tried to force one on him (a very heated discussion took place after I had left) as one of the doctors had prescribed IV fluids 1 every 4 hours during the night but we had spoken to another doctor regarding Mike's reaction to too much fluid and he had agreed on 1 in 10, the fact they put it up at 1 in 4 and pushed Mike's blood pressure up, didn't stop them wanting to put up a second bag, hence the "discussion"!

Mike learned today exactly why the melphalan has the side effects that it does. It seems that it destroys the lining of the digestive tract from start to finish. From mouth to bum. As a result the digestive system is unable to absorb water which results in the inevitable runny stuff. He is however still waiting for the martians to land (possibly day +7?). Mike's nausea seems be under control and he is eating OK.

Mike has a new "neighbour", who arrived as I sat here writing the blog, who seems to have an even worse chest infection than the chap who left yesterday. Oh boy.

Now I don't want you all think that we are obsessed with green, but as you can see my current knitting is well, green!


No it isn't an elephant sock

I'll leave you all to guess what it is. I did have a different green wool that I was going to use to knit a hat, scarf and gloves, but I seem to have misplaced it (or more precisely told that I wouldn't use it) and so off it went to a better, proper home.
I have to confess that since watching Nico on TV just before Christmas I've been feeling rather odd. I keep looking at wool and my old store of cross-stitch books and bead box. You see in a previous life, when the kids were young I often used to whip up a cross-stitch card or a pair of earrings between breast feeds. In fact I searched out an old set of earrings and matching necklace to visit Mike this afternoon:

I think I need a lie down.

+3 looking forward to tomorrow

At the hospital with Mike and well there isn't really much to report. The anti-fungal he had yesterday seems to have taken a bit of a toll on his tummy but nothing major (so I'm told!) He is a bit confused shall we say, he has just walked back into the ward with a urine bottle, it was empty thank goodness. I'm not sure which one it is, but the anti-sickness makes him a bit sleepy. All in all he is doing well I'm told. At least he hasn't needed his green jim jams yet.

And the wooden spoon goes to:

Me!

I knew that Mike’s holiday was going to be difficult for us both but I had hoped that I would find the strength and dignity displayed by those who have gone before me and coped admirably. Cassie was heavily pregnant with raging hormones but did she crumble? No. I know it’s not a competition and everyone is different, but I feel such a failure for not being able to “keep it all together”. I know that the staff looking after Mike are fantastic, it isn’t that, it’s simply my overwhelming desire to care for him that has me in a complete panic because I can’t be with him 24/7 to do so. So all I do is sit, cry, knit 6 stitches, read 1 sentence, make a drink, sit, cry, knit, read…….. the cry part takes the longest.

I wish I was on of those people who at times like this manage to keep themselves busy by cleaning the house from top to bottom. But no, I just become paralysed by it all. I can't settle to do anything, not even play an online game.

Next year I want a pony for Christmas.

On the second day after Christmas my true love gave to me....

Two turtle doves, well so far not so much doves, but the promise of 2 units of blood. Over the last couple of days since the Melphalan Mike's Hb has gradually fallen from 11 to just below 9 which inevitably means he's feeling fatigued and a bit short of breath, especially when he has to make the long trek to the toilets. Things are a bit slow today as it seems the Bank Holiday has messed things up with the doctors and the pharmacy.

Further to Mike's game of Russian Roulette with the yellow gunge he is now being given caspofungin, which the nurse called "the bling of antifungals." Wow, yet again Mike gets the caviar of drugs. Mike says he deserves it after all that he went through earlier in the year.

Still no nausea, nothing GREEN and nothing falling out (so long as you don't count the jim jam incident!) Oh and the nurse requested I bring in a spare bra so we can work out where Paula went wrong!

Factual guide to my stem cell transplant thingy (Day 1&2)

Factual guide to my stem cell transplant thingy:
Had  melphalan pumped in on Christmas Eve, following it all the way with half a dozen Ribena ice lollies, as directed by the "Angel Of The North " ;-) . Absolutely no reactions to it at all, so all the trepidation a waste of time...lol.
Next came the Anti -Fungal drip, bright yellow in colour, quite pretty really for a ******* of a drug! I say this because 15 mins.in to a 1 hour drip, I started to get constriction of my rib cage, akin to the vice-like pain of the G-csf course for the collection of stem cells. I had earlier destroyed the clip on the nurse button and couldn't find it down the back of the bed, so I walked out to the nurses in the corridor to get help. They nicely said to get back into my bed and they would come a sort me.By this time the pain had spread to my whole body, every joint and bone and I crawled back to my bed.  The nurses responded immediately by disconnecting the wicked yellow gunge and pumping me full of prednisolone and something else which I cannot remember the name of, but which put me straight on to cloud nine. Slept well as you can imagin, apart from the visits 100 yards down the corridor to the loo to compliment the water tablets which complimented the bags of saline etc, but it was only 5 journey's.Was warned that 24 hrs. after the nasty stuff I would be feeling sick and unwell...... still waiting...... and it's 60+ hrs so far :-D.
Boxing day was good. Lorna by my side and visits from my son and daughter and my grand-daughter, also woke up to a present from Father Christmas at my bedside (although there is a rumour hat it was the ward staff who left it).
Taking my meds like a good one and keeping my head down at mo. Being looked after very very well bythe staff and doctors here. Very happy about how I feel at present, but well aware that I am in for worse when my counts fall. I'll keep posting.

I can almost hear the sleigh bells.

Like two small children Mike and I are sitting waiting for Stem Cell Santa to arrive. We've had reports that the stem cells are currently at -170 degrees C and so we've lit a fire in the hearth to help warm them as they come down the chimney.


We've had a lovely Christmas dinner with pudding and brandy sauce, shame they forgot the wine, coffee, mints and brandy. We did however get a cracker to share and Mike had a present when he woke this morning from the ward staff.


One of us will post again later.

Christmas time, mistletoe and melphalan.

That's one song you won't catch Cliff singing. The flight has landed and we have arrived at the holiday destination safely.
 I am currently sitting next to Mike who is sucking and crunching Ribena ice lollies while he waits for his personalised cocktail to arrive (Melphalan at 140mg/metre squared). We think B. must have been busy around the ward as the shelf life is only an hour (wink wink). He has already taken a small cocktail of essential pills including anti-sickness and dex. Whoopie, that will make for a harmonious Christmas.

It seems that Mike's arrival had already been announced to the chap in the next bed by another holidaymaker from New Cross who had arrived 5 weeks ago and enjoyed his stay so much he was reluctant to give his bed up for Mike. The Myeloma world is so small that our friend from New Cross, Wallace, is paying Mike a visit on Wednesday, more details to follow.

Did you all notice I said chap in the next bed? That's right, Mike is in a bay with 2 other chaps. Stop panicking, I'm sure they know what they are doing.  The chap next door (I mean next bed) has just had a visit from someone I can only assume was either a lecturer in Nuclear Physics or Santa on 40mg of dex. He didn't stop talking for two hours! Mike reckons he'd be great at deep sea diving as he wouldn't need to come up for air. Luckily the guy he was visiting has a chest infection and couldn't answer him through the oxygen mask or he might have been here until closing time!

Merry Christmas everyone and just think when you are opening your presents that you might have been given socks by Santa, but Mike is getting stem cells.

Oo-er vicar

As I may have mentioned, we recently had some old windows replaced with double-glazed ones. This unfortunately meant that we had to go and buy curtain tracks. It seems that over the last 20 years the plastic hooks that held the track had become extremely brittle and as Mike tried to take the track down they broke, leaving us no choice but to buy new ones.

So off we went to the local DIY superstore. We chose our tracks and just as we were going to pay we spotted the Christmas decorations with 70% off. Yes 70% off meant we had to at least look. So I'm standing there, checking out the lights when suddenly Mike says in a very loud voice "Why don't we decorate your bush!"

So here it is and what a lovely bush even though I say so myself:

Now what did you think I was talking about Ms P?

Just "Carry On Up The Kyber."

Mike: Have you got a bed for me today?

Dr: Sorry no.

Mike: What about Christmas?

Dr: Just carry on with your Christmas shopping and call again tomorrow.

I'm glad the person on the other end of the phone is so wealthy that their wallet wouldn't mind them throwing away a fridge full of food should Christmas be cancelled after all. That's right, I'm well and truly at the end of my tether. I don't know what to do for the best. If I don't buy food it'll be beans on toast for Christmas dinner, but if I do buy Christmas dinner I might have to chuck it in the bin because there was no-one to eat it. I also have to think about Toni and who will look after her when I'm visiting Mike. Every thing seemed to have been organised, but now I'm in a permanent state of flux.

THE LOBSTER-QUADRILLE

"Will you walk a little faster?" said a whiting to a snail,
"There's a porpoise close behind us, and he's treading on my tail.
See how eagerly the lobsters and the turtles all advance!
They are waiting on the shingle -- will you come and join the dance?
Will you, won't you, will you, won't you, will you join the dance?
Will you, won't you, will you, won't you, won't you join the dance?


"You can really have no notion how delightful it will be
When they take us up and throw us, with the lobsters, out to sea!"
But the snail replied "Too far, too far!" and gave a look askance --
Said he thanked the whiting kindly, but he would not join the dance.
Would not, could not, would not, could not, would not join the dance.
Would not, could not, would not, could not, could not join the dance.


"What matters it how far we go?" his scaly friend replied.
"There is another shore, you know, upon the other side.
The further off from England the nearer is to France --
Then turn not pale, beloved snail, but come and join the dance.
Will you, won't you, will you, won't you, will you join the dance?
Will you, won't you, will you, won't you, won't you join the dance?

Lewis Carroll

My bad.

I discovered, via facebook, that my last blog entry caused a food crisis in a certain household up north. It was requested that I make amends as poor Buddy had missed out on his share of a scone (however you say it!)

So I decided (as Mike WILL NOT be going in before Monday evening) that I would take some advice, kindly given in a previous comment, and keep myself occupied. So as is my want I started baking and decided to make scones for Buddy. Unfortunately while I was waiting for them to cook half of my new bathroom suite arrived and I left them slightly too long. As they are not up to my very high standard I cannot possibly send them out to Buddy, Paula and B, so we've had to eat them ourselves. Sorry Paula.

I guess I could try again when I've cleaned the crumbs away. 

Toni reckons they didn't taste tooooooo bad.

Hi there blogsters.

I'd like to say thank you to everyone for their support and to say we have good news...... but I can't, well I can't say we have good news, I can still say thank you though. It looks like they have heard about Mike and his antics and have decided they would rather wait until the New Year when they will need cheering up.**

Short but sweet I know, but as I currently have no windows and no bathroom at all, I need to take a trip to Tezko* to use their facilities and get warm.

* As seen in Turkey. There are other supermarkets just that's the closest.
** It seems I may have given the impression that we have actually been told it will be the New Year. We have not, I repeat have not been given any info other than call again tomorrow. Thank you for your patience.

I was looking through my old pics and stuff as I am bored and I found this small video of Toni that I recorded back in August 2008, the day after we got her. She was only 3 months old, but as you can see, she took no prisoners.

Looks like I better start shopping!

I have to confess, when I found out Mike was due to be in hospital over Christmas I decided to cancel the whole thing, well not so much cancel as postpone. As yet again there was no bed for Mike today I'm beginning to think he may well be still waiting AFTER Christmas.

Now let's be honest, if it were at all possible, then neither Mike or myself would want the trip. We really enjoy each other's company and would much rather have our own bed to sleep in. But the waiting is starting to take it's toll. Each night we worry about the next day and our sleep is fractious. We call at 10 only to be told try again at 12 and then today it was "we'll call you later and if you don't hear call in the morning. "

Fed-up.

Run Buddy, Run!

Dear Buddy,
Run as fast as you can. There are evil people out there who will try and turn you into a laughing stock if given the chance. I know that Auntie Paula has already mentioned the attachment of antlers, believe me, it will only be the start of years of humiliation. Look what can happen if you don't keep your wits about you. Last year Matt dressed me up in a simple Xmas bib:

 This year Chris dressed me up in a Santa coat, boots and antlers. 

I live in fear about what might happen next year.

I implore you Buddy, watch your back, you never know when they might strike.

Love Toni. x x x



Good food and good company.

Yes it's late, much later than I would usually blog, but I wanted to share with you all our evening. I have mentioned in the past I think that Mike recently got in contact with an old friend (also called Mike). They had been friends from the time they could walk into trouble but lost contact over 35 years ago. Over the last few months we've met up several times and enjoyed tales of scrumping, cricket games up walls, getting to (and back from) Weston-Super-Mare on £1 of petrol (3 gallons I'm told) and of course the ball hunting and storing. They collected up balls (their origin shrouded in intrigue) and kept them in a garden shed. The shed was so full they fell out and they had to block the windows up.

This evening the troublesome twosome along with their new sidekick (me) met up in Birmingham. We had a wonderful meal at Cafe Rouge and then wandered off around Birmingham trying to find some of their old haunts. Here is an interesting fact for you all. Back in 1974 a pub called The Tavern In The Town in Birmingham was blown up by the IRA. It was only by strange twists of fate that neither of the Mikes were there that night as it was their daily drinking hole. Spooky. Unfortunately it was closed this evening as we were going to pop in for a drink for old times sake. In the end we found a wonderful old building that used to be The Birmingham Joint Stock Bank (had both cows and sheep?) that had been turned into a marvellous pub and theatre.

All in all we had a fantastic evening. I am so very pleased that Mike's flight was delayed by a week. If it hadn't been put back, we would not have had this evening.

Thank you Sandy...... I think.

Dear Sandy,

Thank you so much for your kind comment. Luckily Mike read it before the shops closed and he managed to find just the thing to help him in his quest towards zebra domination.

As you can see he made sure no time was lost.

Now I'm not sure whether I left it on too long or maybe not long enough or maybe I simply didn't mix it properly or possibly didn't apply enough. Whatever it was it would appear that our quest for Zebra domination turned to more of a bee-line to..........



I have to confess that the tears of laughter flowed freely and although I may look sad, nothing could be further from the truth.

The biggest problem we have is that the colours are those of our biggest rivals in football (soccer), Mike isn't sure how they will take him at The Hawthorns (where West Bromwich Albion play their home games.) If you read this Dave we are so, so very sorry, but at least Lynne will smile, oh and of course young Ocean and Phil .

Love from us both.

Lorna and Mike.

Ribena bonce.

I don't think I have to say anymore than:

no the photo is not in focus

and yes it really is that colour.

By the way, that's Mike's head not mine!

Mock the dog.

This is how it is done Buddy !

Further delays.

It seems there is stll congestion on the runway at the QE. We will be checking with the holiday reps again in the morning. Toni doesn't mind, she enjoys having Mike for company.

Danish Blue or Red Leicester

Well after several attempts with the wonder stuff "Press and Seal" that my good friend Paula sent me, I at last felt confident enough to slide down far enough into the bath water to soak my pits.
Lorna: "aghhhh...don't do that! you'll get your line wet!"
Me: I've got to....... it's been 5 weeks!
Lorna: It'll only be a couple more weeks..... 2 months at best!
It will be vintage Cheddar at this rate.

Nothing like a Dame

Just when I'd collected up my charger, earphones, earplugs, laptop, bright green jim-jams, 341 pairs of pants and a copy of Woman's Weekly,( don't tell Victoria Wood ) my holiday gets put back cause there is congestion on the approach.
I rang ward 5 at the allotted time this morning of 10am only to be told that there are no beds available.... well might be at 12pm after holiday rep has been round and sent a few home.
Most likely to be sent home are the ladies apparently, which doesn't help me cause I'm a man. I suggested to the Rep on the phone that I have a mean Tina Turner outfit and that if I did my special walk, the ladies would be confused enough to not notice what I was, especially if they gave me the holiday cocktail quickly to get rid of the whiskers. I'm British, I like queues. Not my favourite hol destination anyway, not enough beach and too much salty water.
"Toni, will you stop looking at me like that!" I'll go and leave her and mommy in peace when I'm ready and not when the dog is sat there looking smug!
Oh well, looks like a few more days of anticipation, angst and alcohol !

Arthur Dent

Today children, I am Arthur Dent. Not the Puritan author and minister (thanks Wiki) but the Hitchhiking one.

"Along with Ford Prefect, Dent barely escapes the Earth's destruction as it is demolished to make way for a hyperspace bypass. Arthur spends the next several years, still wearing his dressing gown, helplessly launched from crisis to crisis while trying to straighten out his lifestyle."

Gosh that sounds familiar. All I need now is my guide with 'DON'T PANIC' on the cover. I wonder if the answer will be 42?

Nuclear Rod Man alive and well

Just after we'd published the post and popped out for some shopping who should call but Tony! You wouldn't believe just how relieved we were to hear his little "Wallace" voice. He had to spend several weeks in hospital and is currently under possible suspicion of GvH disease, but he seemed cheerful enough and has threatened to visit Mike next Wednesday if he can get past security.

(Yes he really does look like Wallace, sound like Wallace and is just as cheerful and inventive!)

Whatever happened to Nuclear Rod Man?

I was tiding up the blog and realised that I had written the following post, but failed to publish it.

Unknown solider
We did get chance not only to talk to him, but Mike ended up spending quite a lot of time with Tony as you can read here:
NHS money saving exercise

It turned out that Tony had Leukaemia. After his chemo he was advised to have a bone marrow transplant, with his sister as donor as if it came back he would be over the 60 year age limit. We last heard from him September time when he told us he had contracted pneumonia and was back in hospital. We have often thought of him and have just sent him a text to see how he is. Fingers crossed he replies or we'll only start worrying! Right pair of old mother hens!

Hampered by the snow.

I know it's only December 1st, but it feels like Christmas has come early. We haven't had anywhere near as much snow as other parts of the country, but have had just enough to make the garden look like a Christmas card, well it did before big builders in big boots trampled on it while taking down some scaffolding. Toni still managed to find some fun in it though.

Then this arrived:


I won't bore you all to tears with the details, let's just say that The Woolwich, who are now owned by Barclays, are going to need more than a food hamper to make things up to me. It contains:

• 1 bottle red wine
• 1 bottle white wine
• 1 bottle Cava
• 1 jar of pickled onions (don't they know I make my own?)
• 1 jar of pineapple and mango chutney (I'm suspicious of it)
• 1 jar of orange marmalade with whisky (no actual whisky)
• 2 jars of strawberry conserve with champagne (no real champagne just the cava)
• Various cakes and biscuits
• Fudge, nougat and praline chocolates
• Box of Yorkshire teabags (?)
• French vanilla ground coffee (??)
• Pheasant Pate (!?!?)

I like my food, but I'm not that easily bought.