Friday, 31 December 2010
Mike's numbers for the day:
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.
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.|
Thursday, 30 December 2010
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.)
For all those number people out there I thought I'd share some of Mike's numbers.
Wednesday, 29 December 2010
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 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
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
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!
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
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
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
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?
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.
"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?
Friday, 17 December 2010
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.
Thursday, 16 December 2010
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.
Tuesday, 14 December 2010
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. "
Sunday, 12 December 2010
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.
Saturday, 11 December 2010
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 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.
Thursday, 9 December 2010
Tuesday, 7 December 2010
Monday, 6 December 2010
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.
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
"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
(Yes he really does look like Wallace, sound like Wallace and is just as cheerful and inventive!)
Wednesday, 1 December 2010
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!
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 (!?!?)
Monday, 29 November 2010
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
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
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.
Thursday, 18 November 2010
Wednesday, 17 November 2010
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
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!
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
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
Thursday, 21 October 2010
Monday, 11 October 2010
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
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
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
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.
(With a bit of luck everyone will live happily ever after.)
Monday, 13 September 2010
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
Friday, 10 September 2010
Sunday, 5 September 2010
Saturday, 4 September 2010
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
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.
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
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
Toni of course just sits and observes all the hard work!
Tuesday, 3 August 2010
Goodness only knows what their replacements will be like!
Wednesday, 28 July 2010
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
Sunday, 18 July 2010
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.