Friday, 18 February 2011

D Days 189 - 190: Thursday 17 to Friday 18 February 2011

Sorry for the delay with the update; I had a busy day yesterday!  

Well as you know, we went to see Dr Madhava yesterday afternoon for the results of the CAT scan.  It's a sad old state of affairs turning up in the Outpatients department, with the prospect that you might be getting bad news - they certainly don't believe in fripperies there, believe me; it's an unwelcoming atmosphere and a long, boring wait to be seen.  Somehow that doesn't fit right with the so-called 'patient care' that's supposed to be so important.  Anyhow, the clinic was running almost to time (by which I mean that we were only 25 minutes late, instead of 45) and as usual we were shown into the depressing, windowless clinical side room where he seems to prefer to see his patients.  This time there was only one chair, so I perched on the examination couch while C had a look at the wheelchair scales parked on their side in the corner.  Lovely.  In comes Dr M, shakes C's hand and offers it to me, limp and warm, to shake, which I do because it's polite, even though he's clearly not bothered whether I do or not.  But this is all padding, so I'll get to it....


...basically the upshot is that the news is okay.  The treatment C's been on since November has shrunk the main tumour slightly, and there doesn't appear to be any spread.  Some of the attachment to his liver has been reduced and his bones are clear.  So the drug seems to have done some good, and it's holding the cancer at bay.    All good news, considering it could have gone the other way.  So we're cautiously optimistic.  Now, trying to ask Dr M any questions once he's delivered the news you came for is not easy...at this point he starts to back towards the door as he clearly thinks he's done his bit and is keen to leave.  He has put C on another month's cycle, during which time he (Dr M) is apparently going to discuss the case with the Southampton team (remember all those months ago when they were mooting surgery as an option?  Well that might be on the cards) to see what they think.  I asked what the benefits of that are as I wasn't sure - if the kidney is dead (as the biopsy in October showed 'necrotic tissue') then is it doing any harm leaving it there?  What I wanted to know was, is it worth C going through major, invasive, traumatic surgery and post-op recovery if it's not going to make much difference or improve things dramatically.  Dr M wasn't sure and said we'd have to wait to see what the Southampton team thought.  I was reluctant to do down the positive news we'd had and left it at that, and Dr M managed to sidle through the door, having given us the prescription for more treatment, and another blood test form.

And so that was that.  Good news really.  Although as things are still in limbo - we have to go back in six weeks time - I'm wary of jumping up and down and celebrating too much.  I know only too well from bitter experience that it's best to be cautious about these things so you don't end up being let down even more than you might have been.  But it has given C a lift, the realisation that he's done so well, has fought this thing tooth and nail and it has done some good.  The kids were chuffed obviously, as was Jill, so it means that life will go on as it has done, for a few weeks more at least.

We're off to the mainland tomorrow - he's decided he wants to buy a Land Rover Discovery and has found one in Stoke Mandeville, so off we go tomorrow.  Hope the weather's nice.

Wednesday, 16 February 2011

D Days 183 - 188: Friday 11 to Wednesday 16 February 2010 - 188 Days Have Led To This

Hmm, first time I've put a title in the title other than the day count.  Reason?  Because ever since we found out C has cancer, all days have led to tomorrow - the day we find out whether the treatment he's been having is working.  It's all come down to tomorrow's appointment with Dr M, the oncologist - whether it's worked and we continue, or it hasn't and...well you can fill in the blanks.  I've really felt it the last week or so and the stress of waiting for tomorrow has got to me.  To his immense credit C has coped much better - stoically saying that "What will be, will be" and not getting himself wound up about it.  I've done enough of that for both of us anyway!  It's difficult to know how to feel about the outcome...if the treatment is working, then it should continue, which is great and will buy C more time but at the cost of his health for four weeks out of every six.  I guess that the alternative is so much more bleak that this option seems definitely preferable.  So we'll see....

Things have plodded on as usual other than this waiting game.  Romilly is putting things in place for her anticipated move to the mainland (something else I'm getting stressed about) and is knuckling down to do the necessary to finish her college course so she can get her full qualification.  C, being off treatment, has been out and about more, catching up with former work colleagues, family and chores - he even felt well enough to wield his chainsaw at his sister's today!  Unfortunately the weather has meant that he hasn't been out as much as he'd like but hopefully that will change.  The garden is starting to come to life now, and the bulbs I planted last October are starting to shoot; this small thing is so meaningful, as when I bought those bulbs last September C wasn't sure he would be here to see them bloom...well he is, and it's a major notch in his belt of achievement fighting this cancer.  Crocuses never looked so beautiful....

Meanwhile things on the choir front are hotting up; there are lots of 'gigs' coming up which means going over former repertoires as well as learning the new one for the July concert.  We are entering the Ventnor Music for Fun Festival again, which is at the beginning of March, and also have quite an exciting concert in mid April with a well known singer....details to follow on that as I've been told they haven't officially been released yet so it has to stay hush hush!!

Romilly and I spent a nice girly Saturday afternoon doing what we do best - shopping!! It was annual bra shopping day and she's the best person to take along - not only is she very good at helping me choose non-granny underwear, but she can also nip out and find different sizes as necessary (amazing how much boob size can fluctuate according to which bra type you go for....)  This year's 'in' bustenhalter is the balcony - no, not anything to do with the tacky nightclub on Ryde seafront, but a very nice design which hauls everything into the middle and up slightly, where it used to be when I was young, thin and pre-motherhood.  Very pretty and comfy, and nicely reminiscent of my younger days, with just a little  more engineering to get the same effect!!!  Of course these days it's all about matching top and bottom, so it's time for an underwear cull or my drawer won't close...but enough about that now.  Probably TMI!


My lovely curly haired friend Lis left work today - she's sat opposite me at work for the last two years and has been a breath of fresh air in the office.  She is always upbeat, bubbly, cheerful, cracks the most awful jokes you can't help laughing at, declared she's not racist whilst having little digs at foreigners, and generally been the kindest, most supportive workmate you could wish for.  She's been a fabulous tower of strength to me over the last six months and things won't be the same without her.  It was sad to see her go, but I know she's better off choosing to go now so she ends up in a job she wanted, rather than waiting for the axe to fall from The Poison Dwarf himself and be forced into something just to earn a wage.  Good luck to her, and fate help the rest of us!


I had a migraine today.  First one in months (last time I had one was on the choir tour at the beginning of August, which I think was due to being over tired and drinking too much!)  Today's was as bad a headache as I've had for years; analgesics didn't touch it and it took the best part of the morning for me to be able to open my eyes properly and not feel like throwing up.  I couldn't go home - I didn't want to miss saying goodbye to Lis - so I stuck it out and eventually had to go and sit in my car for a cat nap to try and relieve it.  It went eventually...but I guess it's a sign that everything I've got going on right now is just getting too much.  Hopefully after tomorrow I'll have a better idea of where we are with C's illness, and can at least have a plan for one part of my life, his life, and our kids.  Fingers crossed.

Thursday, 10 February 2011

D Days 179 - 182: Monday 7 to Thursday 10 February 2010

It's been a bit of a week.  For me that is anyway.  And I'm getting so bogged down in the negative things that's it's getting harder to be positive.  Something to do with the moon?  Or is it just that all this is finally starting to wear me down?

C's been a bit better this week, having finished the third cycle of treatment.  He perks up within a couple of days of finishing and is so much more energised, positive and active.  Which is a good thing really because I think I've imploded slightly, and I'm the one that needs the propping up!

My work situation is still hanging in the balance, which means that speculation is still rife as to what's going to happen to us.  And when you get an office full of women speculating about something...well you can just imagine how that conversation goes.  Romilly has also had details through about her training with Thomson, so that's completely thrown me and I'm starting to fret about her going, and how it's all going to be for all of us.    Add into the mix the upcoming appointment with the oncologist next Thursday for the results of C's scan.....that's a recipe for one mixed up Karen!!

I'm going to have to apologise that I don't have anything very positive or interesting to post.  But I guess that was bound to happen one day.  There just isn't anything to report...it's all mundane and very much in limbo.

I suppose one small 'up' is that my fitness is increasing, thanks to the lovely Bob and The Biggest Loser Challenge I'm doing on the Wii...so I suppose physically I'm in much better shape than I've been for a while.  It's so ironic that mentally and emotionally I'm a bit the worse for wear!  C'est la vie....

Sunday, 6 February 2011

D Days 173 - 178: Tuesday 1 February to Sunday 6 February 2011

Hi all, from me at the desk with our new computer!!!  It's so nice to be able to type and have the text appear on the screen at the same time, and to not have to go off and make a cup of tea while the damn thing boots up!!  Marvellous thing it is now, and I love how fast it is...the old one is shortly to be consigned to the great computer graveyard (wherever that is) - which is fortuitous for it as I was quite prepared to take a sledgehammer to the damn thing...

So February is upon us.  It seems weird when I type the 'D Day' number at the beginning of each post, it keeps on going up and just reminds me of how much time has gone past since the first post.  

Tuesday was Scan Day.  Poor C wasn't allowed to eat anything in the morning, so after having a fairly hefty supper on Monday night it was fasterama, and I joined him as moral support.  Well it wouldn't have been fair to sit there tucking into eggs on toast while he nursed a glass of water, would it!!  We had to get up there an hour before his appointment, so we turned up at 9am and he had to spend the next hour drinking a whole jugful of white fluid which, he told me, tasted like peaches.  It had been quiet in the X Ray Department when we first got there, but soon started to get busy and by the time he went in for the scan at 10am the waiting room was full.  25 minutes later he emerged, none the worse for wear, and we set off for Briddlesford Farm for a cooked breakfast...and it has never tasted so good!!!  And that was the afternoon C went and bought the new PC...after dragging me round PC World for an hour or so to look at all the things he'd been drooling over a couple of days earlier.  Particularly the new Apple computer - no, that's not what he bought, even I  baulked at spending £1000 on a computer...but I think I did a pretty good job at feigning interest.  I just can't get that excited about technological gadgets (apart from when they go wrong and I want to throw them out of the window, that's pretty exciting) - I would compare it to me taking C around an LK Bennett superstore and seeing how excited he gets about different types of shoe....nuff said methinks.

Work has been fairly quiet, with ongoing confusion and speculation about what the hell is going to happen to all of us.  Quite frankly it's anybody's guess, and when the Council powers that be keep doing u-turns as they are (Floating Bridge charges par exemple) it's different from one day to the next.  The only consistency is their inconsistency and the fear and demoralisation they manage to spread...no change there in the last few years then.

C's finished this third cycle of treatment now, thankfully.  It's been a bit of a slog this time as he's been on his own for more than before, and it's difficult to get yourself up and at 'em when you feel well below par and there's no-one there with you.  It remains to be seen what the next step is.  Something for another day I think.


Choir went well on Thursday night - we seem to have got the hang of most of The Lady in Red...and for good measure we blasted out an off the cuff Over the Rainbow which, I have to say, sounded remarkably good considering the fact that we haven't sung it for months.  Great morale boost.


Romilly went to London on a college trip the other day and, as they had some free time, managed to track down a Primark - I swear that girl could sniff out a bargain store from miles away....On this occasion she bought what she calls a 'onesie'.  Now I didn't know what this is...so she put it on to show me.  And basically it's an adult babygro.  18 years ago I was putting her in these things for bedtime, and now she's buying her own.  How things come full circle!! I was upstairs just now and popped my head around her bedroom door, to see her in her onesie laid on the bed watching TV, and Fleur stretched out next her facing the other direction.  The funniest bit about this is that Rom's onesie is leopard print...so they looked like bookends!!!!!!
 

Monday, 31 January 2011

D Days 168 - 172: Thursday 27 January to Monday 31 January 2011 - Family Stuff

Evening all.

Well there's been lots going on again.  I'm losing track, as ever, with what I've posted about and what I haven't; I just can't seem to hold much in my head anymore.  Little surprise there I think....

Thursday was choir night again, second one last week as we did an extra on Monday.  This time we tackled another new piece for us - The Lady in Red - for which Hannah has done an arrangement (which means she's written harmonies in four parts for the different sections).    It took some getting down to I can tell you....still, once we've had a few stabs at it I'm sure it will, as ever, sound lovely - you'll have to let me know in July....

Friday I finished workd early as I was a bit worried about C - he's struggled with this round of treatment, feeling particularly tired and cold again, with the added downer of having a very acidy stomach.  It's taken it out of him a bit this time I think, and he had to retire to bed on Friday lunchtime as he was so cold and tired.  I came home early afternoon to find him tucked up in the back bedroom with Sidney, watching something on tv.  He clearly needed to rest up, so that's where he stayed (once I'd managed to prise him out, get him into a warming bath and change the bedding before he got back in again) and it did him good - his BP was as low as it's been for a while and the next morning he felt much more rested.  But it was worrying.

Romilly has been offered a contract for a job with TUI - which means she will have to move to Luton to be near their base at the airport there.  I had been rather blase about her getting a job up there, thinking we had time to get used to it, she'd have to finish college etc etc; but no, they want her to start on 1 March - a mere four weeks away - and suddenly it's all very real and scary (for me).  I never once in all her 18 years contemplated Empty Nest Syndrome happening this early.  But I guess nothing's as it used to be, so come on life, chuck another change at me why don't you...I'm getting used to them!

We spent a fairly quiet weekend at home - I catch up on chores and things now I don't have so much spare time in the week - which was a good thing as C has been struggling (see above) and was feeling really rather low and tearful.  This doesn't happen very often, so when he does get like that it's a bit of a jolt for me; he does need to let it out now and then, releasing the fear and anxiety about his situation...and this seemed to be the time.  Bearing in mind what's going on in our lives right now quite frankly I'm surprised the pair of us aren't in bits more often - not only are we dealing with his life threatening illness (because let's face it, that's what it is in its barest terms), but my job (and therefore the majority of our livelihood) is under threat, and now Romilly is moving away; add onto that the fact that we have the scan tomorrow (remember, the one they told us over three months ago that he'd need to have to check out how the treatment is going - where the hell did those three months go?????) and then a review meeting with the oncologist on 17 February.  So there it is; crunch time is approaching.  I did wonder if it was worth trying to see the oncologist sooner, but as C said, what's the point?  We'll find out soon enough what's happening, two weeks isn't going to make all that much difference one way or another.

We were having a discussion in the office today about my situation - and the girls asked me what medical and/or professional support I have to deal with all this.  And I told them honestly - absolutely none.  Nothing.  I have no-one checking on us, offering us help, monitoring how things are going, suggesting ways to deal with the ups and downs, side effects.  It's all down to me and C - we're doing this on our own, together.  Just as we always do.  So in a way we're lucky - we have each other to talk to, shout at, moan at, cry on...some people have to go through this alone.  Be grateful for small mercies has never been more relevant, nor the fact that even when things seem so bad, there is always someone worse off than you.  Even us. 

Wednesday, 26 January 2011

D Days + 165, 166 & 167: Monday 24 January to Wednesday 26 January 2011

I am still struggling to fit a full time job into my life; I don't know how I did it before without drowning in chores...add into the equation that I am trying to do regular, consistent exercise every day and it seems like trying to squeeze an elephant into a mini, which sounds like the cue for a joke but I can't think of one!!  It's also hard to still try to do something for me which isn't work and isn't chores, as there is precious little enough time for me to be at home anyway, and getting to do anything else makes me feel bad for leaving C alone, again.   I'm up at 6am to do exercise, off to work for 8.15am, doing the day and trying to accrue flexi hours for when I need to take time off for hospital appointments with C, then chores or choir, then trying to get in enough sleep....ho hum.

C's been a bit naughty today - makes him sound like a small boy, but really I have just had to tell him off; he hasn't eaten properly today and consequently was running out of steam big time and had an upset stomach.  To be fair to him, we are running low on supplies (yet another downside to me not being at home enough), but the fact that he was a piggy over crumpets for lunch didn't help - yes he was, he had crumpets for lunch and nothing else, and to top it all he had the cheek to ring me at work and taunt me with the fact!!!!  Hot, buttered crumpets - fair made my  mouth water, but clearly he got his comeuppance!!

Poor Rom has come home in a bit of a tizz as she and her college class got a wigging from their tutor; I obviously wasn't there, but if what she says is true (and why wouldn't it be) it sounds like her tutor has seriously lost the plot - ticking them off like a bunch of naughty eight year olds.  She was apparently saying they had no respect for her - well quite frankly I think the way she apparently spoke to them and generally dealt with the situation leaves a lot to be desired and shows them precious little respect either.  I feel a letter to the principal coming on....

Yesterday there was an accident on the dual carriageway in Newport, our own tiny little bit of 'motorway'.  It was serious enough that they had to close it in both directions, which resulted in the whole town becoming gridlocked at rush hour.  I mention this because, unusually and unfortunately I was in Newport yesterday afternoon, and it took me two and a half hours to get from Newport, out of Newport, and home.  I left the car park at 4.15 and got home at 6.45.  Not fun; I was not happy, and this was not made any more bearable by the events in Silent Witness, one of my favourite programmes.  Dr Harry was apparently killed in Budapest; now I love Dr Harry, I know he's not real, but I love him anyway and he's mainly the reason I watch the show (it is good, but nothing draws me to it more than Tom Ward's fantastically stubbly lantern jawline).  I felt really low after that and couldn't cope with watching Part 2.  So I didn't, but C did and told me I should watch it.  But I couldn't; well not until tonight anyway, when all was revealed and the lantern-jawed one reappeared large as life and twice as stubbly as part of some elaborate plot to get to the bottom of a sinister Hungarian baby trafficking scenario.  I must get out more - oh wait, no, I don't have time (see paragraph 1).

More debating in the office this afternoon about how the Council is going to manage to run all the services we support with so fewer staff (again, I would refer the reader to my 'how to get an elephant into a mini' conundrum which is very similar).  The news of last year's spending sticks in the craw just a tad too, bearing in mind that we're all at risk of redundancy or, at best, being forced into applying for jobs we don't really want just so we don't lose our redundancy payouts - the new of one of the Directors being paid £380,000 for two years work (which he charges the Council from his own company) quite frankly makes me sick.  Fat Cats just doesn't cover it mate.

 

Sunday, 23 January 2011

D Day + 164 - Sunday 23 January 2011

C was out to breakfast this morning - back in that routine with his mate Neil, now that Christmas/New Year/illness is out of the way, and I'm glad as he really enjoys their catchup and a chance to get out of the house.  Good food there too, which is a bonus - they go to Bluebells at Briddlesford Farm, and if he remembers C brings back one of their fantastic wholemeal multiseed loaves, which I then work my way through over the next couple of days!

So while he was out, and Romilly had stayed over at Dan's last night so wasn't back yet, I spent the morning doing some workouts from the new game(?) I got for the Wii.  I think I've told you about my fascination with The Biggest Loser (on which, I might add, I am still hooked and still watch it...but the British version is nothing like as good as the US one in my opinion), well this new game(?) is their challenge thingy, which has loads of workout routines and monitoring system thingys to get you moving and fitter.  This Wii thing has been an amazing investment, and is proving to be really useful as well as fun - as long as I can keep it up!! Apparently if you don't do well enough or log in regularly enough it chucks you out, just like in the TV programme, and you have to start again!! So in my four week programme I signed up for, I am two days down, and tomorrow they've lined me up for a 50 minute box-light (whatever that is) workout - so in order to fit this in and not incur the wrath of Bob and Jillian (perish the thought) I'm going to have to get up at 6am to get this done.  Start as you mean to go on....

Once this was out of the way, and C was back, I cracked on with the laundry...again.  I don't know if we're unusual, but we seem to produce a mountain of laundry every week; which in its turn produces a mountain of ironing which sadly can languish in the basket atop the fridge for weeks, until we either (a) run out of clothes or (b) want to wear something that's in it.  And it's a devil of a job to get anything dry in this horrible damp January weather - I am a firm line-dry fanatic, and think there's nothing nicer with laundry than that it smells of fresh air; I resort to the tumble drier only as a last ditch effort to get things dry.  Consequently I've done loads of loads (!), most of which is dry, ironed and put away, but some of which is now draped unceremoniously on airers and chair backs in the dining room.

Bren came round this afternoon after work, and we got talking about his upcoming nuptials (well, it's in September, but that's not long really in terms of planning the whole thing).  It seems that the issue of the top table may have been worrying him - in this day and age although it's not unusual to have extended families due to remarriages etc, the old tradition still stands firm (as it rightly should) and I think he was concerned about me/C being upset about it.  Which neither of us are, we don't do the petty issues really - the day is about Bren and Gem, and celebrating their wedding; seating plans and who is important just isn't, well, important!  So I think we managed to convince him that C should be on the top table, sat next to Gem's mum, and Bren's mum would be up there sitting next to Gem's dad.  All right and proper (which also means that I can sit at a table nearby, with Rom and other family peeps, and make fun of C sitting up there in front of everyone!!!! Hehehehe!!!!)  We also discovered Spotify, thanks to Bren who has been compiling an amazing music playlist for the wedding (I want it, it's brilliant).  I foresee hours of fun for C compiling lists of his own favourite music....

C's midway through this cycle of treatment now, and it's starting to be a struggle for him.  Discomfort is kicking in and I know he's toughing it out but it's a job to know how to reassure him and try to alleviate any negative thoughts.  Trouble is that we just don't know what's going on in there, so speculation can get pretty rife; best thing is not to think about it and put it down to overeating/undereating, wrong food, not enough water, too much moving about, sitting wrong, blah blah da da.  It's hard to stay positive about it all when he's this uncomfortable - roll on the damn scan so we can at least know what, if anything, has changed.  I've run him a nice deep foamy bath, which is where he is right now while I type this, to try and get him to relax and warm up (yep, the cold is a problem again).

And so the weekend is over, and Monday looms large and ugly.  I may not get a chance to blog tomorrow as I'm on a course all day and have choir practice in Cowes at 7pm; fingers crossed I get back to you on Tuesday, and that I remember what's happened in the meantime!!

Love to all and thanks for reading.

K x