This grief thing is very harsh and unrelenting so I’ve sat myself down and asked, what can I do to make damn sure I have some lightness in my life right now and I came up with, why not blog about what’s made me smile. So, here goes.

Barry and Chris telling me they’ve sponsored a raggy old moggie called Lenny in Chris’s name.

The text conversation with Mike.

Mike – How r u doin 2day mum?
Me - I’m doing ok babe, what about you?
Mike – I’m ok, im glad ur ok, I hope that’s the truth mother.
Me - It’s the truth son x

Spending last night with my sis and cousin in the hot tub outside in the rain, wearing stoooopid hats and eating copious amounts of Indian takeaway.

The secret timetable that my family and friends have on the go which produces bods out of nowhere ensuring I'm kept amused.

Teaching my friend how to use her pc, I just love enthusiasm.

Texts and emails that talk about the weather, food and the universe etc…

That’s made me smile just typing them.

Take care all.
Sue x

Its sodding me off now that I can't get the paragraphing right, so its staying as it is.

I managed to stay on my feet yesterday, which is a first for me as I usually faint on such occasions. As soon as we walked into the chapel I got my ‘calm’ this has been a truly amazing thing that’s clicked in numerous times over the past two months and it enabled me to take in every minute of Chris’s service, one that he had planned down to the last detail.

I was also a very proud mum yesterday, the amount of people who came and the wonderful things they said about Chris were a tribute to him and said what we have always known, that he was a ‘top bloke’. The messages for his friends and family which were written in his diary and to be read out were inspiring to say the least and lots of people remarked that it had made them stop and think and hopefully get out there and enjoy every day.

A nice touch back at the pub was twenty four white helium balloons which everybody wrote a message on then we released, it was a mesmerising moment with crowds of us standing in the road staring at the sky until all but one balloon disappeared into the clouds, I like to think that one stayed there a little bit longer to let us all know that he was watching…….at this point he’d say….ok, ok shut it now mother, so I will.

Eric got everyone in floods as did ‘we are soldiers’ previously arranged by Chris.

Take care all
Sue x

Just a quick blog to let everyone know we’re ok, all that needs to be done is done and I’ve been told tomorrow is a chill day for me, however I’ve secretly written a list which makes sure I’m on the go until at least teatime. I managed to get 2 hours gardening in today, it was a tonic and charged my batteries. Doing something you enjoy is a must, even though you think it’s the last thing you can be arsed doing…..just do it, because it seems to release those hormones that are in very short supply just now.

Once again a huge thank you to everybody for the messages and cards, I’m much overwhelmed.

Take care
Sue x

Yesterday wasn’t the best I’ve had so far, due to much red tape in Manchester things were made harder than they already are for a family who have lost someone close to them. We could have done without it, but rules are rules and I don’t stand a chance of changing them alone, note to myself once my head is on the right way again, write a letter to voice my opinion on their procedure.

I’m totally amazed at the amount of messages, cards, flowers, visitors etc.. that have been pouring in for Chris, the things people are saying and the sheer numbers that have asked if they can come to the funeral is mind boggling, I know he was liked but never imagined just how far that spread.

John was in Chris’s room yesterday looking for something and decided to pick up his diary, for some reason he flicked to the back and found an entry which was a change of music for the beginning of his service, so its back to the printers pronto this morning, little git keeping me on my toes as usual.

Once again, many thanks for all the lovely cards and messages they really do make a huge difference.

Take care all.
Sue xxx

We’re all ok, working as a team and getting there. There’s so much to do and my control freak personality means I insist on doing everything myself, mind you that’s a good thing as it keeps me mega busy with little time to sit and think.

I took some time out yesterday to go sit in Chris’s room and while pondering I spotted his diary, he’d always said to me, you can read this after I’m gone you know. Now, I’m finding I only do things when I feel strong enough, and I reckoned I was, it turned out to be a positive move because by the time I’d read two pages I was laughing my head off, what a brilliant thing to be able to do at such a time, it didn’t surprise me one bit that he could continue to make me laugh because that’s Chris.

I’ve been reading the comments on my blog, the forum and email I’ve received, but struggle a bit at the moment to sit down and focus so thought a quick update on here would be a good move.

I’m basically a control freak and have to have a master plan for everything, so at the moment here its, if you’re struggling shout, text or ring saying “weak alert” this is the red button and will be answered immediately.

We miss our Chris like hell, but he decided when enough was enough and when that time came believe it or not he had a smirky smile on his face. The team at Wythenshawe are awsome but they had no chance as Chris has always had his own agenda and did things his way. We’d already discussed his arrangements for the public goodbye and he chose Tears in heaven by Eric Clapton because he said “that’ll get em all cryin”……bloody typical.

Thank you everyone for all the lovely messages of support for us you’ll never ever know how much its helped us, you’re stars all of you.

Take care
Sue, John & Mike xxx

Nite x

We had to say goodbye to Chris last night, God bless you and keep you safe until we meet again, we’re going to miss you so much. Nothing in this life will ever hurt us more than this.

Nite babe x

Ok, I sang at him yesterday, now I’m not saying that’s what did it, but there was a tiny improvement. I gave him my rendition of “wake me up when September ends” then told him straight, if you think you’re lying stinking in this bed till the end of September, you’re not……..NO CHANCE!! He’s still asleep at the mo and can’t tell me to shut it so today I might sing Grace Kelly, that’s a nice lively one.

I spent a night in my own bed, the first for over 5 weeks, this is also good. In the afternoon I mowed over a big cable in the garden which wiped out the electricity in the house and nearly fried me fish in the pond, this is not so good.

Well Chris is still here and still holding his own despite many efforts by the bacterial and viral gremlins to get shut of him. There isn’t much more to tell you really, he did start to progress for a couple of days, then we were called in at 4am on Saturday morning as the doctors were concerned. Since then he’s been asleep again and stable, but he has a new fight on his hands as we’re more or less back to square one the doctor said.

Its hard to put into words what I’ve seen Chris go through in the last 5 weeks and I have to admit to wondering whether, if he was able, he would tell us all to leave him in peace. I don’t think he would because when he is awake he’s the smiliest patient on the unit and virtually every member of staff puts their head in to see him because they reckon he’s special, I cant argue with that. He’s fought to get through whatever’s come along so far, please keep praying he wins this one.

I’m home with John and Mike for the day and am about to get my scruffy kit on and do some gardening while John prepares us a feast on the barbeque, its lovely to be here, but not quite right, if you know what I mean.

Thanks again people for all the lovely messages and continuing support, I so miss all my buddy’s. Chris hasn't been able to read his messages from the forum yet but I have read the cards out to him and Ive printed the messages out ready for when he's a bit more with it.

Take care all.
Sue x

Just a very quick update as it’s a flying visit. I’m sorry for lack of news about Chris but its absolutely impossible at the moment to give any clear picture of a definite path. Many thanks to my good buddy for updating you all on her blog, however even since the last update the situation has changed yet again.

Chris had a good day yesterday, unfortunately there were several blips in the night and a big blip this morning, so he’s now sedated again and fairly stable.

Thanks a million for the continued support everybody when there’s anything more definite to tell you I’ll be sure to blog.

Sue x

A very stable night was yesterday mornings report, which I imagine is one up from stable I think, unstable being one down I imagine, or maybe there’s a nearly unstable before that…..who knows where the stableness chart starts and finishes.
Sorry if this seems flippant at such a time but it was an actual conversation that took place between me, Mike and his mate last night and it was a good tension reliever as it became more and more ridiculous.

I obviously wouldn’t be blogging in this manner if things weren’t a wee bit better and they are, just a tad mind you, its tiny steps at the moment but tiny is massive to us here.

He no longer sends his sats and blood pressure through the floor when they so much as look at him let alone comb his hair and they can turn him on his side without the panic button on the ward being pressed, infection markers are down to 19 and he’s only on 65-70% oxygen through the vent. This was yesterday.

This morning they reduced the sedation and also the amount of support he was receiving from the vent, so he is now doing a lot more breathing on his own and managing raise his eyebrows now and then, he also grinned about 4 times or had wind. The doctor came to speak to me this afternoon and said he’d had massive pneumonia but we were no longer fighting that as it had practically gone, what he has now is something called Adult Lung Shock Syndrome, that might or might not be the correct name but its close. Apparently Chris’s lungs have gone into shock and we’re not out of the woods yet he said.

I have an outfit ready for when he wakes up properly, it’s a grey head of hair a wrinckly mask and no finger nails and I didn’t even have to go out and buy it.

As always the team here are brilliant, the people who have prayed and sent many messages are something money could never buy and very stable is good for now.

Many thanks everyone.
Sue x

So this is what my house looks like!

I’m home for a few hours so thought I’d do a quick update. 12 days on Chris’s condition has continued to be worrying to say the least, things change few hourly rather than daily and each day there is at least one crisis. I’m in awe of the team, as they tackle everything that comes along and get him stable again time after time. They still don’t know for sure what they’re fighting and he’s now being treated for infection, (bacterial and viral), inflammation, rejection and a brand new infection this morning which sent his infection markers back up to 130 from 30 yesterday. He’s still fully sedated and on the ventilator through a tracheostomy with oxygen at 100%, however there has been an improvement in his heart rate and sats today and they’ve managed to stop him throwing random breaths in here and there so the ventilator can do its job and he can rest.

Massive thanks to all who have sent messages through many channels and also for all the prayers, you’re stars all of you. Rest assured you will all be among the first to hear when things start to look up.

Keep praying people.
Sue x

Just a very quick blog to let people know whats going on. Chris was transferred to ICU on Thursday as they felt he needed one to one care and possibly more help with his breathing than the ward could provide. Since then he’s been on c-pap with oxygen at 100%, once or twice they’ve tried to take him off it but he’s got into a bit of difficulty and has had to be put back on. They suspect that he has a virus rather than a bacterial infection which makes it much more diffucult to treat, loads of rest is the best treatment so his body can fight the infection, unfortunately one can’t just click one’s fingers and sleep when feeling very poorly and anxious. Last night there was a big improvement and he was able to cope with just a normal oxygen mask for a couple of hours and even ate some tea, however he had a rough night so was put back on c-pap at 100% and remains on it now. Because he had very little rest last night I’m afraid we’re back to square one today and they’ve requested he dosen’t have visitors until this evening, including me and John. Things can change from one minute to the next and I wont be blogging very often as I’m staying in a bungalow at the hospital but I’ll try to let you know through Andy or Lorraine.

Whatever your faith please say a prayer for his recovery.

Chris say’s he feels a bit better today, which is good. However his blood gases have dropped again and sats are lower so he’s on oxygen continually for the time being, he’s having two units of blood tonight presumably because he’s anaemic, I don’t know for sure as there were no doctors around for me to ask. When I was leaving tonight I saw the transplant sister and voiced my concern about his breathing, she said he’s fighting a major infection, I asked how do you know its infection rather than rejection, she said rejection usually looks like cloudy patches on the xray, ‘did you see his xray’ she said. I had and agreed with her that it looked very like his xrays before transplant, so hopefully it is just infection which should show signs of improvement as the iv’s kick in. They’re not going to do a bronch until he’s a bit better and stronger.

Despite being a bit under the weather him and Mike managed to wind me up tonight, it was all to do with CHEESE, there was a question in the latest edition of ‘Nuts’

How many cheeses does the U.K. produce.?

I was allowed as many guesses as I wanted but got fed up after 20 and pleaded for the answer, as by now it was imperative that I had this information. Mike ripped the answer out of the page and said because I was impatient I would now never know how many cheeses were produced by the U.K. So if any avid readers of Nuts read this will you please trawl through your copy and put me out of my misery….Thank You.

And Goodnight.

Monday morning Chris seemed a bit better but as the day wore on he became lethargic and complained of a stiff neck and flu like symptoms, so he rang Wythenshawe. He explained that he hadn’t been to clinic for about 4-5 weeks as his last appointment was cancelled when they’d taken him in to have his wires sorted, he’d ended up coming back home because he had a slight cold and they didn’t want to risk a general, but no further appointment for clinic was made at that time. Because of the wires being in a sticky out position he hasn’t been able to do his blows properly, so he didn’t know whether the low reading he got on Monday was a true one or not.

On Tuesday morning it was a mission to get him to Manchester, he was obviously a very unwell bod, even with his parka on with the hood up and the heater blasting out on full he was shivering so much that his back sort of went into spasm. We had to pull off the motorway for him to be sick and that made him colder, so he shivered more.

He was admitted as he has a nasty chest infection blood pressure is low he’s dehydrated and sats are down, he’s on oxygen as his blood gases aren’t brilliant and his blows are down to 54 from about 90. Because they don’t know what the infection is until all results are back he’s on iv’s for psuedo, aspergillis and cmv virus. Once the results are back they’ll be able to target the infection and hopefully we’ll see an improvement over the next 48 hours. The doc’s have tried to reassure him its not unusual to get an infection in the first twelve months after transplant, but he’s extremely anxious at the moment because of what happened with our James, I can’t imagine how hard that must be for him to deal with.

He’s never allowed his friends to visit him when in hospital and poorly, they usually have to wait until he’s a bit better but last night his best mate insisted on going up which was a good move as he had him laughing his head off within minutes of arriving. I was told I could go and I should send his mates in future because I’m no good at it any more, to which I replied, I’ve been doing it for 24 years and the novelty has worn off now, cheeky git.

More Sun

I worship the sun, it’s a god and I hold it in the highest regard, great big yellow shiny ball in the sky pleeeeeeez stay out forever.

I increased everything at the gym this morning, went for more reps on the weight things rather than upping the weight and jogged faster rather than longer on the treadmill, no idea if that’s the way to go so must check it out with them that know. I’m applying for a job down there, its in the bar in the restaurant, the good bit is, if you work there you get your membership free and also get to nominate someone else for free membership, now at over £600 a year per person that’s a dam good perk…so if I get it Chris can join me and Mike in our manic quest to be fitter than is humanly possible. I’m rather hoping for one on reception to come up, not that I’m a snob and the bar is below me but I really shouldn’t be placed too close to voddy for too long and anyway they get a much snazzier uniform on reception.

We have a very exhausted Chris here today who’s running a temp and totally whacked out. After returning from his holiday on Saturday he only paused for half an hour, then went shopping, then paused for half an hour, then went clubbing, then was brought home by car by a bouncer, who must have been a very very nice man to do such a deed. He’d had a dramatic hypo in the club and no hypo-stop gel with him, which is the only thing that works quickly enough for Chris, after pouring much coke down his neck which just kept him from fitting he decided he should head home. So after only one pint and a whiff of a dance, like Cinderella he was whisked away, fortunately after some gel and lucozade his sugar’s rose and he went to bed Mike said. The after effects are an exhausted son with a temp, but I wont comment about doing too much, I wont even incline my head or raise my eyebrows because I’ve learned to shut up now, I just come on here and write it, works a treat.

Still can’t think of that song…arghhhhhhh.

Sun Swim Song Son

Hasn’t the weather been absolutely brilliant today eh!!

I did 26 lengths non stop this morning at 9am…life’s good.

Something is driving me insane though, I can’t remember the name of a song, in the video the singer (not unlike the one on the Halifax advert) is walking through a train carriage, then he’s on a platform and there’s lots of people either walking along or on the escalator, I’ve asked everyone I know and nobody can remember it……help.

Chris got back, stayed half an hour and went shopping not seen him since, judging by the 93 photo’s he took he had a brill time and walked loads..all uphill naturally because Wales is.

The title of this blog looks like it should be a tongue twister but its not, I said it fast 10 times and it was still right.....fascinating!

A lot of nothing

Time for a blog methinks, nothing of note has happened here apart from our Mike’s results which are, he doesn’t have cf, its asthma and an allergy to dust, so I now have to clean his room, It’ll be a long job and protective clothing will be a must for health and safety reasons in fact I may be wise to have a safety rope attached as well just to be sure I have a means of escape.

The garage saga goes on, the first bit went quick but hubby found a crack in the only wall that had been left standing and which they decided WAS safe to build off. So progress since then has been snail like while they have a million looks and discuss how best to proceed. This is how its looked for 2 weeks, the cat’s are having a ball diving in and out of the holes where the windows and door should be, glad it makes someone happy, actually I couldn’t really care less how long it takes to rebuild it, things like that don’t bother me in the least, I just don’t care but the men are impatient and pace up and down and go in and out sighing and shaking their heads because it’s a den in their eyes and that’s another blog for another time.



I am still loving the gym and am progressing marvellously, you have to say that to yourself loads, its called positive thinking or maybe brainwashing. I can do 8 minutes on the treadmill of intermittent training which is alternating 2 mins on very fast walk (6.0) and 2 mins on a bit of a jog (7.2) , I can also stay on the ball while lifting very very small dumbbells and I now don’t feel faint after I’ve done the Versa Climber, which is the most wicked machine in the world. I also think I need to up the weights on the other machines now as its become easy. Pat on the back for me and a gold star because I never had this much commitment before.

Work on my secret garden has been halted for now but I have found someone with a digger who’s dad is mates with the farmer so bringing it through the back field wont be a problem he says. It was actually Chris who found him its one of his mates who was present at a wee party that took place at our house while we were away in York. As well as digging up muck and making the ground flat so I have a nice canvas to work on in my secret garden this chap is doing us a patio outside the back door apparently, it was arranged by Chris on the night of the party and all we have to do is pay the £1,060, how thoughtful is my son eh!!!!

Mike came home from work and wanted me to do a number 3 all over his head as he’s fed up with his hair, I’ve never clippered hair before and tried to get out of it, but remembering the title of my blog ‘Try it and see’ I did it and it looks brill. You can do this forever now he said, saves me a fiver a time, sling it on the housekeeping why don’t ya I said but he just laughed…loudly.

Chris is back tomorrow, I've missed the little git, we were honoured with a phone call last night and it sounds like he's having a brilliant time, done loads of walking and hardly seen the local......yeah right.

Good

Mike doesn't have cf, this is good news.

Overstretched

Yesterday at the “stretch” class, deemed essential if you’re intending to run a race, she said, now while sitting on your left leg bring your right leg across your knee, stretch your right arm up, then down over your shoulder now bring your left arm round your back clasp your right hand and PUSH your right forearm towards your back. I’m sure that was the one that’s rendered me incapable of doing any slight movement today without a kind of Uhhhh or Ahhh, and my backs not happy the bottom of it feels like I have a toothache in there.

Moan over, no sympathy expected as its self inflicted and all me own fault.

Anyway I thought a swim might be a good idea this morning as the thinking today is keep it moving, don’t lie up or you’ll stiffen…more. I went to dig out the cozzi, its been about 2 years since I had any swimming gear on and I wasn’t happy with what the lying toad of a mirror had to say. So! off to bloody shops to purchase new cozzi, I was going swimming no matter what, eventually I found a suitable thing in Next, they call it a tankini I think and it has an inbuilt wonderbra to make us with nowt feel in proportion.

2nd moan over, again no sympathy expected as losing weight is a side effect of going to the gym again self inflicted.

The boys are still 10 steps ahead of me in the winding up game, I did my ironing yesterday while being drawn on, clipped round the head with a newspaper and all kinds of bits and pieces being stuffed into the arms legs and pockets of items being ironed, I tried to keep cool but lost it in a major strop when my best pink jumper was dragged off the ironing board and flung on the floor for the third time.

I don’t see an awful lot of Chris nowdays but I was parked at our local shops today when a fist hit my bonnet, yep it was he, walking round, as I thought to speak to me he opened the door wide and shouted “I’ve been shopping” I started to ask when he might be appearing home but he’d already gone leaving the door wide open…bugger you, starve then.

3rd moan over, no sympathy here either, as they say its my own fault “ I borned em”