28 September 2011

Ever have one of those days when everything is a chore?   Well today has been one of those days.  Started off pretty well - an hour on the exercise bike while catching up with Celebrity Master Chef; trip to the physio to show me how to stand properly ( with my new 'disability' of flat feet and knock knees) so I don't keep getting back pain.   My core muscle is now constantly engaged and bum tightly squeezed - apparently that helps to put your back in alignment.

From then on in, the day was a bit 'flat'.  Felt a bit aimless - cleaning the bathrooms wasn't exactly an achievement.  It's that constant 'on hold' feeling.  While all my friends are busy busy for New Year - I'm not.   For the last couple of years we haven't taken our turn in any of the family get togethers - Michael's  either been in hospital or just ill and as lovely as it is to either be at my family or Michael's family, I just feel that I'd like to do my share, but alas it is not to be.  And so, we continue to accept everyone's generosity, and do nothing.   Well apart from making two disastrous desserts.   Tonights is for my sister in law - and I made a dessert I've made before but knew as I was preparing it, it was not going to be as successful.  Apple tartin - ummm I hear you say.   Well it does taste nice but I will have to suggest that everyone closes their eyes before eating.   I decided to use the cooking apples from the tree (you know the one I pruned last week?) and I guess there was a reason the recipe said eating apples - they wouldn't have fallen apart.  Disaster number two is dessert for tomorrow's lunch.  My mum gave me a new recipe, which I have to say was a real palava - the quantity's for about 100 people - to the point that neither of us had a tin big enough.  So I reduced the quantities - but I have to say, it just just wasn't a nice recipe to make.  Anyhow, it came out of the oven, and looks fairly edible but then today I had to make the honey icing. The only way to describe the finished result was 'slop'.  Down the sink it went and I put together some other icing - it looks presentable but lets just say I'll be skipping dessert tomorrow :(

But then the day brightened up when Michael received an unexpected gift.   A very cute cow balloon which definitely put a smile on both our faces. This obviously referred to my description of Michael chewing gum and all I can say is - I've never been to Barbados; would love to win the lottery and I've always dreamt of having a Jag!!!!!!!

Meanwhile, we've obviously had no call and it's all getting a bit much now.  I'm starting to actually wake in the middle of the night (yes, me who sleeps through anything), tossing and turning what seems like for ages before I can get back to sleep. I know I said I was fairly relaxed about the call coming in but actually now it feels like the call will just never come.

Anyway, kids now home and I need to........ actually I don't need to do anything!!!!!

To our dear family and friends -  wishing you all a very happy and healthy New Year.  xx

26 September 2011

8.47 pm

Last night we had a Bat Mitzvah with our youngest.  We've been through it with both boys and now it's Lauren's turn.  Quite odd leaving the boys at home but I'm sure they were quite happy, vegging in front of the TV!   We had a lovely evening - we don't get out that much so it was nice being with friends.  Michael pushed himself and even got onto the dance floor for a bit - it may be the last dance we have together for a while.

Thankfully it didn't finish too late so we were home by 10.45pm - still quite late for Michael as he's normally doing his drugs at 10pm.   He decided to give the feed a miss (after a bit of badgering from me) which usually means he gets a better nights sleep ( because so much fluid is being pumped in, it obviously means a lot comes out - so lots of  loo visits).    At this point, I have to say that on Sunday afternoon he did actually suggest that he took his blue rucksack to the party, all connected up.   I would have loved to have seen my face when he mentioned that - thankfully it stayed at home all by itself (the bag, not my face!!!)    I'd like to say I noticed that he slept better but, being the concerned wife, once I hit that pillow, nothing wakes me up.   You'll have to ask him if he slept any better.  That *!****!!* just gets on my nerves (and more so his).  When we're clearing up after dinner, when he's getting his drugs out in the bedroom - his drug cabinet (well plastic drawers on wheels) is opposite our bed.   He often puts the bag on the bed and stands at the cabinet, with his tube crossing the room - no way for me to get anywhere.   Then in the kitchen it sits neatly by the dishwasher door when he's washing up (I know, I should be grateful he's washing up and I truly am) meaning we can't get near to help.

Sitting here watching Michael engrossed in EastEnders (that's what his life has resorted to!), apart from him hugging his tummy in pain, he looks so well.   I know so many people when they see him say the same thing but tonight, for whatever reason, he does look particularly well.  The main thing that gives the game away (for me anyway) is his cow impersonation.  To keep a fresh taste and so his mouth isn't always dry, he constantly chews gum.   I have to say, I can't stand gum chewing (sorry to all my friends who do like to chew gum).   I'm so turning into my mother as I remember when I used to chew gum she always commented on how revolting it was.   Well, like most things as you get older, I have grown to agree with her.  It's that constant churning noise - and you know, the more you hear it, the louder it gets.   That'll definitely be something I'll be pleased he'll stop - would much prefer to hear him chomping on a salt beef sandwich.  

As the days are ticking by, somehow I feel a little more relaxed (only a little) about getting the call.  Don't get me wrong, it's still bizarre and all a bit surreal but somehow you sort of adapt.   I'm still worrying about making sure that everything's always up to date, just in case but I feel a little less stressed - I guess just because we've now discussed it so many times and know that with our great family and friends, we can call on so many people to help with anything.   As far as what happens after the call comes in, and zooming to Oxford....... that's a totally different matter.

Meanwhile, too much time is definitely not a good thing for our middle one.   Every day now he keeps asking the same question.   Yesterday, it was 'what will happen if  you get a call while you're at the party'.   This morning it was 'what happens if you get the call today as we finish early'.   We always thought Aaron was the softy, but Nathan is taking over.   He really is soooo sensitive.

 Well gotta dash - forgot I had to pick the kids up from school tonight!!

xx 

24 September 2011

No news!

Had a lovely afternoon with dear friends today - for a short while it was like everything was 'normal' but then I could see Michael wilting and finding it hard to concentrate (really was nothing to do with the company) and then he started to get  very tetchy about getting home to put his feed on.   It's quite funny, when he first started with his TPN some 18 months ago, he was quite relaxed about the whole thing; didn't really have a concern as to what time it was started and often used to walk around with it in the mornings as he'd put it on so late the night before (it's on for 14 hours).  I used to get quite aggrevated as I couldn't understand why he'd want to walk around with it during the day - I wanted life to be normal and his blue rucksack and tubes were constantly connected.

Thankfully, nowadays he likes it to be on before 7 so that it's off no later than  9 am but meanwhile he's stressing when it gets a bit later - totally irrational (well I think) but then with everything that's going on he's got a good excuse.   Guess I'm pretty irrational at times (and may I add - only on rare occasion!!).  It's funny (in an unfunny way) but Michael's becoming quite tense and irrational about alot of things. I think that's what keeps him sane, perhaps in control of things.   When he's been in hospital I always used to laugh to myself when I left him - his bedside trolley always had to be laid out just so; water glass, tissues, glasses, watch, etc all in a particular order, and then I'd find him moving things a millimetre in a different direction.   Only then could he relax.  He knew I was sniggering away at him.   Now, through all these months and now this eternal waiting, with us both going a bit stir crazy, I've noticed all those little oddities coming back.   The bedtime ritual is irritating (Michael - I say this with affection) purely because it's the same every night and I do find myself sniggering again to myself.   It's nothing major but it's like clockwork every night and the new thing is checking and rechecking the phone to make sure it's on.  All I can say is I know exactly how Michael feels now when I constantly go to bed and 10 mins later go downstairs to check whether I've locked the back door; or go out and then worry that I haven't closed the windows.   I should add at this point that I have been known to leave eggs boiling, drive off to Ikea and then come back to a rather smoked filled kitchen and a heavily coughing dog.  Guess Michael's just getting his own back. 

So many people today asked us if there was any news.  If there really is any news, you won't actually be seeing us around.  When we do get that call, we're straight off to Oxford.  From what I remember from the transplant coordinator (and there really was loads to take in), when the calls does come, they check that Michael's feeling well, and then it's off to Oxford as quickly as possible for a very long wait before we know if the donor organ is viable.  I'm actually really dreading that wait - all very well taking the knitting, the portable video player and a book but I can't imagine that either of us is going to be up to doing anything (although I have now got a vision of Michael knitting!!!!!!).   Not even sure if we'll be up to talking - what could we possible talk to each other about that would cheer us up??

As the days goes on, I've noticed that it's Nathan that's asking more and more questions as to when/where, etc.   Wanted to know this evening what would happen if we got the call when he's at the stables tomorrow.  I did say that I would pick him up before we went but then as the words came out I realised we may not have time.   In my heart I'd obviously want them to be home when we do have to go, so we can give them a kiss and cuddle and send them off to some lovely friends.   Time will tell whether it falls into place so neatly.

Yet again another day is over and another night awaits us.   It would have been so much easier if we hadn't been told that calls more often come in the middle of the night.

As always - will keep you posted xx

22 September 2011

What to do while waiting!

Well - we're still here in Radlett - waiting!   Michael spoke with Oxford today.  The coordinator explained that previous patients who are 'common' like Michael have had a maximum of a month wait.  Apparently, the surgeon is more likely to reject a organ from a 'common' donor if there are slight discrepancies (not quite sure that's the correct terminology!).   This is because there will be more available to choose from than those where they are matching with more uncommon blood types.   I haven't particularly explained that very well - I know what I mean - I hope you do!!

Had a bit of a low day today.  No more reason than any other day.   Maybe I just feel feel that with our lives on hold, I'm just wasting my time on irrelevant stuff.  So how have I filled today - mowed the lawn, did some weeding and then used some contraption my mum lent me to prune the apple tree.   It was actually quite fun and I got a bit carried away and did a few other trees at the same time.  Shame is my green bin isn't big enough to fit it all in.  Read at breakfast in the Sunday mag that our gardens should be prepared for winter and that it's a good idea to cut the grass in two different directions.   Well - what else did I have to do?   So now we have some lovely horizontal stripes on the grass.  Apparently I'm meant to be raking the garden to get rid of all the dead grass and moss - impossibly hard work and gave that one a miss.   But whilst thinking to myself as I mowed, I did come to the realisation that I am mad - as I decided I would actually like a scarifier and would be happier to buy this than clothing!! (having just read my blog - Michael didn't know what a scarifier is so....    'A tool with spikes or prongs used for breaking up matted vegetation in the surface of a lawn'.)

Asda was the next port of call (too much excitment I hear you say).  Using a small trolley didn't make any difference as I still seemed to spend an awful lot on nothing much.   It's all very well trying to cut back but life is so expensive.   I've always been quite good at not throwing away food, etc but now I'm even more conscious of not wasting things.   I had some leftover sweetcorn which was not going to be eaten so this week's soup was sweetcorn, onion and parsnip.  Bit of a strange consistency but I have to say, it tasted very nice and there were no complaints (well apart from Lauren as always).  Guess she'll be happier with the frozen yoghurt icecream I just made.  Thing is, as I seem to have so much time, and I love to cook (well prefer to bake), I feel I should just make rather than waste.

With all the 'waiting' we've both been thinking alot about the future, particularly what Michael will do work wise.   I know he's finding this very difficult.   As experienced as he is in licensing,  it's all changed so much since he's been out of it and it's a very difficult time for licensing (well everything!!!)  I now regret not having some sort of career to fall back on.   It's was great, and so easy, working with Michael.  I did hours to suit and obviously could always be there for the children.  Problem was, no work for Michael, no work for me.  I'm quite envious of those friends who knew their path and followed it and now have jobs that fit in with their lives.  Not quite sure what job would be waiting for me when the time comes to start working again.  I know I've got talents - mended my blackberry this week; pruning trees, making odd soups - not quite sure what job that would get me.  The reality is, it's going to be a while before I can even think of working.   Trouble is, I've got that long while to think about it and get more down in the dumps.  As scary as this op and it's recovery is, it's just as scary thinking about the afterwards, and starting from scratch again.

A dark cloud has just arrived over Radlett, to join my mood :(  It's time to take the washing  in and put a smiling face on for the return of my lovely kids.

xx

20 September 2011

The end of the day.....

Day now over and just relaxing in front of the tv - if you can call it relaxing; bit too much blood and guts but I guess it takes my mind off 'will it be tonight??'.  Feeling a little stressed - amazing how we react to stress and pick on the most ridiculous things to be angry about.   Tonight, when I thought all was done, I found myself having to go  through Lauren's maths homework with her (with my able assistant Aaron), which she thought she understood and most clearly di'dn't.  I was impressively calm and she now  knows what she's doing - whether that will be the case tomorrow, who knows!  But then I lost it as the kids all seemed to have the wrong size sweatshirts - you'd think they'd notice but no doubt it's my fault as I just labelled them all with our surname (cheaper than buying labels for all three of them).  I blamed Michael though as he's the one that insists on the doing the ironing and then giving the kids their relevant piles of clothing.  Definitely  a case of me not feeling in control with him being around all the time.  I know the kids keep noticing that I do blame Daddy for an awful lot (none of the important stuff though - stupid things like making a mess in the kitchen, mixing the ironing up, pranging my car!), and I think that's just the stress and anxiety of everything, together with us being under each other's feet the whole time.  I dread to think what my poor children really think :(

As grumpy as I can be, I always make sure that there's cuddles before bedtime (with the kids!!!).  We try to play it down but it may be that we won't see them in the morning - hard enough for us but particularly difficult for the children.  They really are amazing to have to put up with so much.

And so, all cuddles have now been given and it's time for me to go to bed.  Night xx

3.19 pm

How much time do we all waste being put on hold whilst trying to get through to someone on the phone?   OMG - what awful music I'm having to listen to, just so I can try and sort out my car insurance claim (thanks to Michael!!!).  Guess it's our luck at the moment and it's just another something to add to the list of things going wrong.  Got a guy here mending our leaking roof at the moment - noticed a few weeks ago that there was a big damp patch in the dining room and after getting a plumber, then a damp proofing man, the roofing guy claimed it was his area.   So that's now being dealt with - just can't go outside to check that all is ok or I'll get stuck talking for ever.  Funny how workmen always have time to talk :)

Well have thankfully now spoken to someone at the insurance company and they were most helpful - now have to wait for the repairers to call and arrange collection.  Meanwhile, another problem is that someone has made a claim against me for a car accident in July to  which I have no recollection.   My insurance company don't seem to have much details of what was supposed to have happened or where it happened but apparently the other car had an awful lot of damage, which means my little Nissan is obviously more sturdy that I thought as I have no damage (well apart from the present bollard indent).  Guess it's helpful that I've got so much time to spend sorting these things out.

The good news is, our electrical problem that we had has now corrected itself.   Don't ask me how but having had a washing machine that kept fusing the house every time it was turned on, we managed to get a new washing machine through the appliance insurance.  When the new machine arrived, guess what?   That too kept fusing the house.  The electrician made a couple of visits and typically, the problem wasnt there.   On the first visit, all worked perfectly until he left the house - 20 mins later, you've guessed - the machine fused the house.   He came back the following day and, no surprise, everything worked perfectly.   Well, it's been a week now and the machine has happily been working with no problems.   Thankfully we have an RCD (think that's what its called) even if there is a problem, we're safe (I think!).

Then........  Lauren's room seems to have a funny smell in it.   Having givenl the room a thorough clean, bleaching the walls, etc, I thought the smell had gone but oh no, the next day there it was.   You would have seen me on my knees sniffing the carpet just to try and locate where it was coming from.   No such luck - can't figure it out.   It's a subtle smell that comes and goes.   The electrician assured me it wasn't anything dead under the floorboards as that smell would remain.   Lovely!!!

So, as you can see, our waiting time has been quite exciting.  The days are a little strange - all those people who have 'witheld' on their phone numbers, get us quite excited (not sure that's the right word?) when they ring.  But I guess this could go on for some time.  Michael and I are having our daily walks with Waffle.   I can see that every day is harder for Michael - huffing and puffing and telling me to slow down.  It's good for him though to keep exercising in someway and to be honest, as he's finding everything such a struggle and so tiring it's good to keep his mind off things.  We do though have to find some other routes - it's great seeing all the house extensions develop but most of the ones on our route are nearly finished.   Would actually be nice to see the inside as well.

Now feeling guilty that I haven't offered the roof guy another cup of tea.   Will catch up later xx

18 September 2011

Another weekend over!

This could have been our last weekend before the op!   It's all very bizarre, everything I do I keep thinking 'this could be the last time before.......'.   It really is 'don't put off tomorrow what you can do today'.  Trying so hard to keep up to date with everything - the general boring things - washing, ironing, house stuff.  Me being very sad, I feel happier to know that as much as possible is in order for when the time comes.   Stupid things, like ensuring the kids uniform/pe kit is always clean, mowing the lawn!!  So as you can tell - it was a really exciting weekend.

To be honest, apart from having the kids home, the weekends aren't much different.   All days merge into one.  As neither Michael or I are working, it means we spend alot of time together.   Whether that's good or bad, it just means every day is alike.   I've got used to the questioning over what I'm doing every second.   You know - 'what you doing today'; 'where you going'; 'what time will you be back'; 'who you seeing'.  Guess I know how our kids feel now.   I know how hard it is for Michael not being able to work and he tries hard to occupy his time but any women will know, it's hard having her husband around all the time.   Guess none of this is how we expected our lives to be - but hopefully for not too much longer!!

Michael's finding it all a bit hard going.  As well as the daily pain and the drug regime, I think this waiting game is really getting to him.  We've just had a lovely afternoon at my sister and brother-in-law - a fairwell tea for my nephew who's off to Uni next week.    All relaxed, until we get home and Michael's busy stressing, rushing to do the ironing and washing up the few items left in the sink, drying up, feeding the dog, dropping the dog food on the floor, cursing cause we've just had another power surge and he's worried that Sky won't work ...........   Not quite sure why he thinks he has to do everything but as lovely as it is that he wants to keep on going, it drives me nuts and the calm of the afternoon is soon forgotten.  (Have to admit, this blogging really is a great way to let off steam!!)

So it's another night - will we get a call or not?  Had planned to get Nathan some new wellies for horseriding tomorrow and some wool for me and Lauren.   She wants to learn how to knit and my sister reckons it will keep me occupied whilst Michael's in surgery.   So if anyone needs a new scarf let me know - it's the only thing I can knit.  Meanwhile, if the call comes, no knitting and Nathan will have to continue to squeeze into the old wellies!!

Will keep you posted xx

16 September 2011

Aaargh!!!

Is it wrong to be angry at my husband who's just reversed my car into a bollard???  One thing's for sure, took my mind of the waiting game for a bit......

15 September 2011

I'm blogging now!!

Michael always wanted me to keep everyone up to date on his blog once he goes into hospital.   I took it one step further and started my own blog.   Just means, when we do finally get that call, I know what I'm doing, and you'll all know how/what we're doing.  It's taken me a bit of time to get my blog up and running - it's so hard finding what colours complement each other on screen.   But  I think it looks pretty now, so off we go.

Today is the day Michael goes on the list.   Bizarre that we've been waiting for this since about May and now it's finally here.   To be honest, we've been living in limbo for months now and this is just more of the same, but a little more stress added.   Trying very hard to get organised - started to pack kids' cases this afternoon.  The bare essentials are all there and they'll just have to add the rest as and when.  Thankfully they are all of an age now that they should be able to organise themselves and pack what they need for a few days away from home.  It's not like they don't have keys to get in the house if they have forgotten anything.   I would though like to be as pre-organised as possible.  Trouble is, my mind is everywhere at the moment and can't seem to think about anything properly.

End of another day, where I don't seem to have organised what I wanted to.   I guess tomorrow's another day - well, unless that call comes!!!   We both keep saying that the reality is it won't happen immediately but who knows - not sure how I'll cope with this constant 'will it be today/tonight'.  Anyway, we'll keep you posted.

xx