Friday, 31 December 2010

"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.

Thursday, 30 December 2010

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

Wednesday, 29 December 2010

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.

Tuesday, 28 December 2010

+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.

Monday, 27 December 2010

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.

Saturday, 25 December 2010

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.

Friday, 24 December 2010

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.

Tuesday, 21 December 2010

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

Friday, 17 December 2010

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.

Thursday, 16 December 2010

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.

video
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.

Tuesday, 14 December 2010

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.

Sunday, 12 December 2010

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


Saturday, 11 December 2010

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.

Friday, 10 December 2010

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.

Thursday, 9 December 2010

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 !

Tuesday, 7 December 2010

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.

Monday, 6 December 2010

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 !

Sunday, 5 December 2010

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?

Thursday, 2 December 2010

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!)

Wednesday, 1 December 2010

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.

Monday, 29 November 2010

Lesley Roley and Tears for Hamada

Been a busy old week. The bathroom still looks like the proverbial bomb has hit it, but at least the electric wiring is now sorted. We have spent today doing all those delightful pre-mot checks that the hospital feels are necessary. Personally I keep wondering if they would ever turn round and say "sorry you ain't fit enough."

As some of you may remember, back in May, just before Mike decided to go all wobbly and spend the month searching for his very own tea tray, we went off to see Don McLean. http://lornaandmickyour-loma.blogspot.com/2010/05/its-finally-here.html

We reported how we had had a wonderful time and also how we had discovered a fantastic new talent,Miss Lesley Roley. Well with a bit of encouragement, that wonderful new talent appeared at a local club last Tuesday and of course Mike and I bought our tickets the day they were released. We also managed to drag along someone who recorded some of the songs which he uploaded to You Tube.

As Lesley played this song written by her dad for her, I burst into tears, I reminded me of Susie and her love for Hamada

Sunday, 21 November 2010

Bathrooms by "Beirut"

I wasn't going to share this in case you all got worried, but as Paula has been talking about her new bathroom I thought I might as well.
A few weeks ago, while Mike was off relaxing (OK he was having his line put in), the nice men came to put in our new central heating. Just as well as the weather was starting to get a bit nippy and our boiler broke last April. Our new system which includes a solar panel (rubs nails on jumper in a how smart are we kind of way) means that the hot water storage is now in the loft and so we no longer had any need for an airing cupboard. The old tank and it's surrounding cupboard were duly taken out leaving us with a bathroom that looks like this:

Did I mention that all the plaster and tiles fell off the wall into the bath?

Funnily enough, Mike had been going on and on at me about wanting a sunken soap dish, but I had always said "You are not knocking holes in my bathroom walls." As you can see, it looks like he might get his own way. Did I mention that the tiles broke the bath?

Not to worry, Mike fixed it with his "Hard and Fast"......

We have chosen a new white bathroom as we were reliably informed that Pergamon was no longer available. (I've got a real sulk on about it too!) ;-)

Friday, 19 November 2010

Awkward or what?

Is Mike normal in any way at all? (Well you must all know by now that he isn't!)

As previously posted we were told when we arrived this morning that people virtually never EVER produce more stem cells on the second day. Well in true Mike style he produced 2.2 million today, bringing the grand total to.............. 4.06 million. (They must have asked him to push while I was in the loo.) The nurse we spoke to said they need 2 million for each SCT, so maybe, just maybe they will manage to sort it so there is enough for 2, yes TWO SCTs. Fingers crossed that when we speak to PM on the 30th she is of the same opinion.

Awkward

I've got a brand new combine harvester, Day 2

Mike managed to collect a measly 1.8 million stem cells yesterday. He's back on the machine today, but we have obviously been told that while it will be enough for 1 SCT there won't be enough for a second bite of the cherry. We are told that although extremely difficult, it isn't completely impossible to collect stem cells for a second SCT after the first one. As the doctor said "we don't have a crystal ball." Thanks? I feel like running around the playground screaming "IT'S NOT FAIR!" I want my ball back.

Wednesday, 17 November 2010

Solidarność

I probably won't ever win a Nobel Prize like Lech Wałęsa, but I like to think that my act of Solidarity may be appreciated by some. "What is she talking about?" I hear you cry. Let me show you:My impression of Cousin IT. Hang on Mike says I can't use that photo.


This is me at 09:30 GMT.
This is me at 11:00 GMT. Can you spot the difference?
Why? Well when we found out about Mike's little illness I told him that when his hair fell out I'd have mine shaved off so we could walk around looking like a pair of skittles or maybe the bowling balls. Since then the weather has turned a little too chilly so instead of shaving my head I've had my hair cut, now I just need to weave or knit the hair into a wig for Mike.

Tuesday, 16 November 2010

Muppet Babies

Well it's been a long nine months for us, but finally labour has started and Lorna and I are looking forward to the imminent birth. With a bit of help from medical science, man is able to create new life. Yes in this case "MAN GIVES BIRTH". Now before you all start knitting, bootees, hats and little jumpers, I'm not talking about the pitter-patter of tiny feet, more the whooshing of millions of tiny stem cells. I have to say that given the pain I'm in,(Co-Codamol 500/30mg x2 has little effect) it had better be worth it!
All the pain, but none of the fun though. Lots of throbbing but no pleasure. I'm sure you girls have probably said that a few times over the years, and it is probably like meat and two veg to you all, but I'm really worried that when I go for my line care on my expertly fitted Central Line on Wednesday, the nurses are going to ask me to PUSH!
It is the dreaded G-CSE....ERM..... G-CSF sorry, (although to want it, you do need your head EXAMINING.) On Sunday I started the 4-a-day injections of Neupogen that will hopefully encourage the birth of 6 million or so baby stem cells that will be used to reboot me after the mustard gas attack planned at Cancer Operational Headquarters, QE., Birmingham on December 6th.
The pain of this war on Myeloma has really come to the fore this week. My bones are throbbin in time to my heartbeat," BOOM BOOM shake ya bones" for those who teen'd in the 70's. Child of the 50's,60's,70's,80's,90's and naughties is what I am. Lorna says I've never grown up. I reckon those stem cells will be more responsible than me, given a week or two. I'm halfway through my course of injections so there will soon be an extra shelf in the fridge again for the cheese to mature on. Lorna wanted it for wine, but I've told her there is more than enough whinin already. 

Tuesday, 2 November 2010

Has Buddy moved house?

As reported in The Express and Star (Wolverhampton's local evening paper.)

Pipe chewed by dog

A dog which chewed through a water pipe after it was spooked by fireworks, caused a severe flood at a Black Country pensioner's flat.

The pensioner, believed to be in his late sixties, called fire crews to his ground floor flat in Wellington Road, Dudley shortly after 6pm, to make the electric safe.

The pet had bitten through a water pipe in the bathroom of the flat above. Owner Colin Cooper aged 56 said 13 year old Staffordshire Bull Terrier Mollie always panicked at loud noises, including thunderstorms.

He added: "I was around my girlfriend's house for dinner when I got the call. She had bitten the pipe under the sink right out. I think she was panicking and trying to hide behind there."

Friday, 29 October 2010

Poo, crap and pissed off.

Mike had an appointment with his consultant this morning. Unfortunately he had arranged for a builder to come round, forgetting he had the appointment, so I had to stay at home. Mike was told his pp are down to 9 which is good news and that he is to have his central line put in on Monday almost 5 weeks before the SCT, which I think is really bad news. So at the risk of making Mike angry I am going to have a real rant and ask the question "How do you manage to be intimate with someone who has a central line in?" I don't care that it's there to make the collection on 18th November easier, I've got to sleep next to it for three weeks. I know Mike has no choice, I'm not mad with him, but even so I am really angry with the world, because I know that there are other hospitals that leave it much later. I'm scared that it'll get infected like Wallace's did, I don't care that they say that won't happen to Mike.

Thursday, 21 October 2010

Revenge of the root crop.

I thought I'd share the latest weird vegetable from my garden with you all. Don't worry he won't hurt you, even if a friend on fb suggested he might be the next Dr. Who creature.

Monday, 11 October 2010

Nutsville City Limits.

Well Mike has reached the limits of Velcade, 8 cycles down, no more to go. Even if he wanted more, he's not allowed. Tomorrow it's off to the QE for those final arrangements.

Now as you all know already Mike isn't backward in coming forward and so when he was asked during his fruit phase, what he'd be doing when it was all over (the chemo that is, not when he dies, silly people!), he promised the nurses something special. Today he fulfilled that promise. Most patients buy a nice card and a box of chocolates, or maybe a nice bunch of flowers, not Mike. There is no easy way to say this so I'll just have to show you all.

Yep he dressed up as Tina Turner and sang his own version of "The Best" to Liz and Donna, oh and various other members of staff and patients. (Video to follow when edited. )

Thursday, 7 October 2010

Myeloma Marathon

I don't know what it feels like to have myeloma, I can only speak as a carer.

We are approaching what feels like the final leg of our first marathon to beat myeloma. I hope it is the only one we have to endure, but the chances of that are very slim. Mike has his last Velcade infusion next Monday and then it's off to the QE to make all those delightful final arrangements ready for his SCT. Those of you who have been there, done that, got the T-shirt and have already written the book, don't need me to list the battery of tests, by the time they've finished this round, there will be a whole shelf of tests results on Mike.

Personally I've never been much of a runner. I can't sprint and my long distance running has never been much cop either. I just hope I can finish this race.

Monday, 27 September 2010

Myeloma Calendar attempt

Last week I joined the Under 50's Myeloma site........ sssssshhhhhhhh....... Yes I know I'm older but they don't seem to mind! Lovely bunch of peeps and I was made to feel very welcome.
I was perusing the comments and came across one where my new friends were saying a "calendar would be a good fundraiser"............... so, as I was in a particularly helpful mood that day......... I've sent an e-mail to Gok Wan @ Channel 4 proposing a "Moobs and Boobs" calendar producing programme, aka calendar girls. Now knowing how "not backwards in coming forwards" our followers are, here is your opportunity to get in on the act and nab a month before they all go. So far, January, April, May, September and December are spoken for possibly, but that still leaves 7 months to fill as we speak.
Of course, we still have to wait and see if Gok can help, but if not then I will pester some other poor celeb.
By the way, has anyone got 2 tassels and a fig leaf?

Wednesday, 15 September 2010

Blood from a stone

Another handy little phrase. What prompted such a title I hear you cry. Are you sitting comfortably? Then I'll begin.

Once upon a time there was a team of haematologists who worked together in a hospital in a land called the Black Country. Despite its foreboding name the people who lived there were not dark, but cheerful, happy go lucky and almost always laughing. Now for reasons unknown to the people of the Black Country, it appeared that only those of 5' 6" or below were allowed to practice the art of blood management.

Now one of the people who regularly visited the vertically challenged team was a giant of a man. Unlike our friendly haematologists he had over 6' of body around which his brave red blood cells had to travel. So when his Hb fell to 10, they really struggled to reach all of it efficiently. The little people though had never experienced this and kept on telling the giant they wouldn't give him any of their precious elixir. The poor man became more and more listless, he no longer felt like laughing and found it difficult to walk from his horse to the ward.

Then yesterday while he sat looking grey and tired, a fairy godmother by the name of Donna appeared. She took one look at the poorly man and waved her magic wand. Before he knew it, the fairy had managed to get blood from a stone and organised that the man have two units of blood the following day. The man was so relieved, that had he had the energy, he would have danced for joy.

The End.
(With a bit of luck everyone will live happily ever after.)

Monday, 13 September 2010

Better than a poke in the eye with a blunt stick.

I love that phrase, although Mike had never heard it until he met me. Maybe I just made it up, I don't remember. It's a useful little phrase that makes everything seem better. You get a bid of 99p on eBay, well it's better than a poke in the eye etc..


Last week we were watching a program about the Tropical disease hospital in Liverpool. There was some poor bloke on it who had worms which travelled to his eyes, he'd had them for about 10 years! Luckily Mike and I had eaten our tea otherwise..... well you know. We did spot Ian Rush in the waiting room of the clinic, they didn't say it was him or why he was there, but we know our ex-Liverpool players (well Welsh Evertonians).

This morning Mike looked as if he had been poked in the eye with a fence post never mind a blunt stick. He says it is probably an old-fashioned stye, he always has been a bit of a pig. I'm no doctor, nurse or even a vet, I just know he looks as if there is an egg under his right eye and I'm worried about what might hatch out of it, I'm hoping for a pet dragon.

Sunday, 12 September 2010

Getting them out for the girls.

Well some of you knit and some of you sew, some of you even do both. Me, I like food, I'm fascinated by how our mothers, grandmothers and beyond wouldn't dream of buying a ready meal full of additives and with no fridges or freezers had no choice but to make do with fresh and used preserving methods for those foods that could cope. With this in mind, I have spent the weekend putting together this larder of food:With the weather starting to change I thought I'd better make use of the glut of green tomatoes I still have and made them into tomato chutney. My nan ALWAYS made pickled onions for Christmas, although she usually had to hide a couple of jars or they'd all have been eaten long before and the Victoria sponge was made with the time honoured method of weigh your eggs and use that weight of butter, sugar and flour. The cake no longer looks quite so complete, Mike, Toni and I all like sponge with blackcurrant jam (not homemade this year, but hopefully next as I planted a blackcurrant bush earlier this year!)

Oh, for those of you wondering about the title, it was what Mike exclaimed as I laid out my wares! He knows how much us girls like sharing our homely talents. All that time in the kitchen does have it's drawbacks though....... it means it appears I can't be arsed to post. ;-)

Friday, 10 September 2010

Peep show

Well it's day 4 of cycle..... I've lost count with all the interruptions, and Mike is looking a little bit like an elephant, all grey and wrinkled. Actually that's not fair, he's no more wrinkled than he should be at 40ish..... he has certainly got the memory of an elephant as far as his old friend from the age of three is concerned. Mike and Mike (no confusion there then!) have recently gotten back into contact after an estimated 35 years! I've had the pleasure of sitting with the two of them on two occasions now...... I think we are up to 1969 in the story telling..... not long to go then. That's Mike in the middle (notice he has two totties!) on 25th January 1966 and Mike C is bottom right corner peeping into the frame!

By the way, I'm thinking of moving to Amsterdam, I currently have 23 watchers on eBay! I certainly wish I'd always been so popular.

Sunday, 5 September 2010

Would this win any prizes?

Well it would seem that elsewhere it is village show time and everyone is busy entering their handiwork into various competitions. (Well done Paula and Susie.) Unfortunately we don't have village shows here in the Black Country, I do however have an entry into the strangest vegetable class:My daughter says everyone will say I photoshopped it... I have no idea how so you'll all have to take my word for it that it grew that way!

Saturday, 4 September 2010

Milky mix up.

While we were driving to the hospital yesterday Mike spotted one of the posters advertising Anchor...
Mike: Made by coors since 1886?

Me: Made by cows, haven't you seen the TV ad?

Mike: What did they do before 1886?

Me: They used pigs?

Mike: What? Pork butter?

P.S. Mike's paraprotein is down to 12 from 27 after 1 and 3/4 cycles of Velcade. Must be all that laughing.

Thursday, 2 September 2010

She who started us off.

Those of you who follow us in the UK will probably already have read the bad news about Amanda. Being a bit behind (in my case major behind) it wasn't until this morning that we read about her on Myeloma UK. For those of you who never read her blog you can find it here .
It was finding Amanda's blog that gave us the idea of creating our own witty, irreverent and at times downright silly blog, to chart the journey we are on. For that we are truly grateful. What with the good news about Paula and the sad news about Amanda we've run out of toilet tissue, Toni is starting to look worried.

Long Time No Pill

When you want to push on and get those nasty PP things shot, having 10 days rest from the nice Cyclophosfamide and the wonderful Dexamethasone and the beautiful Velcade, is a bit of a bind. Feel like i'm floating in a glider, looking for a thermal. So i'm off up to the Inland Revenue office to ask em if I need to pay em for 2009-2010 or if I should just keep running...... tempted :-P.
Tomorrow is consultant day, where I circle the Heart and Lung unit for an hour till I find a parking space 1/2 a mile away behind all the shoppers and sightseeers and queue for the vampires at 9 am. Get my results sheet from the techi, and check the PP levels that I cheated and wrote up on last weeks blood form....don't tell anyone will you....it is probably illegal to waste NHS funds on sneeky peeks at my slippery slope. Then it's back home for Coffeee..... oops, no, not allowed Coffee, got dodgy Kidenknees. I love Coffee more than I like Kidneys, maybe swop?
Back to clinic and wait to see Dr. B, and hope that he's tellin me i'm goin in the right direction for a change, and not that i'm reacting differently and stuff has got to change..... I used to like being different.... but this is different....lol.
I'm gonna polish the car today, just in case.
On a lighter note, since I visited "Spec-Savers", the world seems a lot clearer. My FIRST pair of glasses ever....but I look dead sexy in em apparently.....I'll ave a bit of that, i don't say xx

Friday, 27 August 2010

My vacuum needs a vacation.

I'm not sure whether it is a sudden change in the weather, but over the last couple of weeks it would appear that both Toni and Mike have decided to shed their coats and cause my poor vacuum to work more hours than I personally feel it should. I am still working on January's Myeloma Moobs photo, the way things are going it may turn out barer than originally planned, a woolly hat may be needed in addition to the suggested sock.

Toni could do with moulting a bit quicker at the moment... she somehow got involved with a hair dying session and now has peach coloured spots!

Tuesday, 17 August 2010

Sister act.

About three weeks ago one of our favourite nurses, Liz, was promoted to Sister. This gave us a wonderful idea, but due to the one week break in treatment, days off and a weeks holiday for her (who said she could have a week off!!!) it wasn't until today that we could finally put our cunning plan into action. After hours of sewing bias binding onto the collar, sleeves and pocket and cutting and gluing we came up with this:
So authentic was my handiwork on the watch, that Mike left his watch at home!

Meanwhile in the vegetable patch, things have slowly been growing, by which I mean too slow for my liking. Patience is NOT one of my many virtues.... cough cough.


Toni of course just sits and observes all the hard work!

Tuesday, 3 August 2010

Comfy shoes.

Has anyone else noticed that just when you've managed to make a pair of shoes comfy they promptly fall to pieces, and then you can't find another pair that you like? Well today has felt a bit like that. Today we bid a fond farewell to our lovely young doctors Pip and Rachel. We had just got them to the point where they understood our humour, no mean feat I can tell you. They both took the time to listen to us and as anyone who has had a "holier than thou" doctor will know, sometimes all we want is to have our opinion heard. We wish them both the very best for the future, we will miss them.

Goodness only knows what their replacements will be like!

Became Absorbed

Was just lookin for shock absorbers for the rear of my car....... and the search came up with this.......Shock absorbers

Wednesday, 28 July 2010

Sponge Mike, Square One.

Well folks, it's back to square one xx.
Went to the Q.E. in Birmingham yesterday to an appointment with P.M. and B.C. (the time twins?). It was an appointment I thought, that was to bring the transplant forward a month or so because I was doing "so well". BANG! Jaw hit the floor. Para-proteins back up to 27 ish,( where they were in December, just before my official diagnosis ) and SCT now postponed till Christmas time.
So it is back to the bigger glass of water and the larger needle and the sack of tablets, ( including 10 Dex four times a week ;D), to get rid of the bone pain that has re-emerged and to make sure I am still here when the SCT collection starts.
Lorna is my strength and you and all your support are enough to help me get through this.
ta, Mike xxxxxxxxxxxxxxx

Saturday, 24 July 2010

Sweet peas and cherryade

I thought I'd share this year's sweet pea colours with you all. As you can see we even mananged to grow myeloma coloured ones! Oh and the red ones are the same colour as my daughter's hair, which she made me dye about an hour after finishing school for the summer. The reference to cherryade is her's not mine!



Sunday, 18 July 2010

Handbags and glad rags.

I know, I know, I haven't posted for what feels like forever. I could sit here and give you a load of reasons, but Mike says (ok I say) reasons are really just excuses. A quick resume of how things have been going then. I'm finally starting to feel human again, although the slightest sniff of the food trolley when Mike goes for his Velcade, and I'm ready to vomit for England (sorry anyone who is a bit delicate). Talking of Velcade, Mike has just finished a cycle of Velcade that was half dose once a week, in effect a quarter of the amount in previous cycles. Due to the unplanned break in treatment and possibly the reduced dose of Velcade, Mike's pp have gone from 11 to 16 and so Mike's next cycle will be full dose of Velcade once a week ( which makes it half the original) ready for his SCT which may be brought forward...... Watch this space.

Serious stuff over. After the banana incident Mike decided with some encouragement from the nurses to make Velcade Wednesdays fruit and vegetable Wednesdays. Banana week was followed by carrot week and then tomato week.
Tomato week was a failure (or as my girls would say a fail) as the dye turned his clothes more of a raspberry/pink.

Mike has decided that his next project is to see just how long and curly his hair can grow before it all falls out during his SCT. He's actually hoping that it grows to it's 1974 proportions and that when it returns after his SCT it is actually straight and not ginger. If it doesn't grow back straight, he says he's going to buy it a pink handbag.