"On the last day of September".....

Ok, so I'll leave the singing to those of us who can sing.... and I'm not one of them...

I really don't know how I can top last nights blog post, written so eloquently by my eldest son. This is what happens when you overdo things during the day and end up in bed at 8:30pm, with weakly sent instructions for someone to 'write the blog please'!!

After an enforced lengthy stay in bed, I woke feeling much brighter today, and managed a 45 minute dog walk before going to see the lymphoedema nurse again. She is lovely but  I told her I'm not going to see her again. I said I've been twice now, and not only has she not given me a massage, she hasn't even bothered to 'tape' me either!! In fact I said the whole thing has been a total let down.... ( joking aside, she is going to see if she can refer me for some 'complementary therapy'- which will be lovely!)

I left there to go to the Merton for a yoga class, or at least part of one, but i managed to do the whole class, and it was BRILLIANT. First time that I enjoyed doing a normal activity in six weeks, and exercise to boot! Had lovely hugs from the staff, and enjoyed a cup of tea with a few friends as well, so a great morning!

Didn't need a rest this afternoon, sadly missed another opportunity for a swim but ended up in the garden doing a few jobs and employing hubby in the more strenuous tasks. Suddenly at 4:30pm i was tired, and once again had to down tools and stagger indoors issuing instructions as i went, feigning extreme exhaustion i commandeered Becky to peel carrots and Dan  kindly shelled my lobster for tea.
 Fortunately I had recuperated enough to to eat supper, and then I contacted my personal shopper ( AL who was working her way around a well known supermarket) and gave her a short list. The service does come with delivery too, at no extra charge!

Of course we needed a dog pic..... Billy tomorrow?

Steve said he wanted to take a photo of our 'harvest'.....

Talking of which, thank you to GB who dropped in with lovely harvest jam and biscuits and flowers from the parish Church Harvest service.

Another day in the Luce household

Hello everyone, its me, the loveable rogue of the house.  Charming, yet sophisticated, ready to write a blog post that is funny and well written, yet caring...well perhaps not the latter.

Firstly, a couple of points:

1.  There will be no photos of the dog

2.  Yes the dog looks the same as it did yesterday, and the day before, and the day before that

3.  Yes I'm sorry there is no photo of the dog - I know you were looking forward to it

4.  The cat is sad it never gets a mention, so I want you to know that it is still alive

News

Mum had the results of a blood test today.  Her protein had gone up to some level that was deemed 'better'; 34 as opposed to 2 weeks ago where it was 22.  Who would have thought that it could go up by 12 points in only 2 weeks?!!  I mean, no one knows quite what units its measured in, or what sort of scale we're talking about but i mean come on, 12 points!  Someone get out the champagne.  Seriously though, as much as I joke it is good news. 

Better News

In other, more important news, dinner was delicious.  Some sort of salty belly pork cooked by LT (apparently I am only allowed to put initials?!).  Many thanks to her.  Will eat more of it tomorrow, as long as mum doesn't drop some of this one all over the floor.  Yes this did happen, but no the dog did not get to clean it up.

Sub-Family News

Daniel is beginning to come towards the end of the season and so is basically doing no work.  Jack 'saves lives' on a daily basis, which is only true if you count the lives saved by cleaning the toilets at work.  Becky is working but not getting paid. Dad is walking about giving people stickers that have the word 'yes' on them (think he's gone crazy). 

I'll leave you with some words (pictures) of wisdom.  If you didn't know how, here is an important image showing you how to load a dishwasher.  If its too small to view, you can see it here - http://theoatmeal.com/comics/dishwasher

Sunday...nearly Octoberfest

Europe won the Ryder Cup on Sky this afternoon....and they won it again this evening on the BBC....you would have thought that the Americans would have managed to play a little better this evening. A good day from European golf....we're all happy....well. those of us who like golf are. Jilly isn't really one of those, and because of that I was watching on her laptop this afternoon. As the match approached it's climax the blessed machine started flashing a warning that the power was about to run out. As luck would have it the battery duly obliged and the screen went blank...in between running from the lounge to my office (to watch on the computer in there) the winning shot was played. So...I'd watched for two hours, only to miss the best bit.....crazy!

Jill was outside in the vegetable garden while I was lounging with the golf...trying to find the last of the courgettes, and other "summer" crops. The carrots, parsnips and leaks are all there safely waiting for winter, and we have onions in the greenhouse drying out. Still just a few outdoor "toms", but most other bits are destined for the compost bin..... we could really do with a couple of hours out there having a good "tidy up"..... we may find some time later this week. I have just been told that her ladyship is going to put up some pictures...and some words...I am redundant again!

After the meeting with the lymphedema nurse YM on Friday , I have been following her instructions and attempting a lymphatic drain massage on myself once a day. I'd like to think its working but my stomach still looks the size of a small country. However I have 'lost' a couple more pounds, so I'd like to think thats all positive. I see her next on Tuesday morning when she is going to 'tape' me, ( not my mouth obviously although i'm sure my husband would be pleased with that) but the kinesiology type taping.

I've had a good day today, helped by the gorgeous weather. Lovely walk through the woods to the beach, meeting friends on the way. A short but lovely swim in the sea, and then a BLT at the cafe for lunch! A slower walk up the hill home ( it's ok i had my bodyguard with me!) and then I managed to get out in the garden. Took down sweet peas and other stuff to compost, did about an hours 'work' and then took Jess out for her afternoon walk. Fortunate enough to have previously got out some food from the freezer so family were covered and I had fresh bass that Dan had caught yesterday.

Heading into town early to try and beat the queue for blood tests.... never seem to have much luck in that department, tempted to send SQ in my stead, i'm sure no one would spot the difference, I distinctly remember her saying she didn't mind!! Depending how that goes, I have a list of 'town' jobs, one of them being, 'find a dress that fits me for Becky's graduation on Thursday'.... Now that is going to be a tall order, i point blank refuse to go down the 'maternity' route!!

The best dog pose, and us on Grouville beach yesterday morning!

Saturday....somethingth September

Well, I'm getting a few words down early this evening as I am taking Jill out in a minute!! That's twice I've taken her out in week....you can't say that I don't know how to spoil a woman!! We have two invitations...the first at K's 21st at C and T's, and then S and E's evening wedding celebrations....I wish I could say the we're rested and ready....well, we're ready...just not sure about rested.

Jill didn't sleep at all last night apparently...I say apparently because I wasn't awake to verify that she was up and down like the proverbial yoyo....but when I took her a morning hot water and lemon (why?...is it really a drink?) at 7ish she wasn't in the best of humour....and related the story of the ups and downs, and ins and outs of bed, overnight. The "interesting" thing is that there is no apparent reason for this sudden insomnia...less drugs and no abnormal eating before bedtime....what could it be? I suggested that maybe it's just a hangover from the general anaesthetic .... but it's a while now since the op....it certainly isn't the excitement of sharing a bed with me I might add...unless snoring keeps you awake (but then Jilly has had nearly 30 years to get used to it). The tiredness that ensued during the course of today wasn't helped by the fact that twice during the afternoon Jilly has tried to "have a little lie down"...but no sleep on either occasion.

Well, we're off....Bex driving...I'll catch up later when we return....and yes, we won't be late!

So.....we're back....two really lovely events...and we managed a small hour at each....both full of happy campers...mainly younger than us I'm afraid...but don't you find that young people are getting younger every day... my lawyer, for example, seems so young to me that I wonder if he should be still asking his parents time he should be in by.....and how much pocket money he should have every week. But there we are...everyone getting older.

Did I mention that Jack has been in Sark all day.....did I mention that Dan has been to the Minquiers today, TWICE!!....are they doing it to wind me up? Jack's working tomorrow, but Dan's back to Ecrehous, with three trips planned...today (from my bedroom window) I could see literally thirty plus boats out there today...maybe even more tomorrow....it's quieter to stay in Gorey Harbour!

Under the circumstances, Jill has coped well this evening, but there's no doubt that she's pooped now...and has trundled off to bed as I type. Let's hope that she gets some sleep tonight....she's certainly tired enough....maybe she's too tired? Tomorrow is another day, as the saying goes....and we have a lot less things planned. Today, for example, we started with a dog walk on Grouville beach...then a quick swim at Bel Val...then a quick trip to Ransom's for pressies and cards...and we got home at 12ish.... 12ISH? What happened there?...where did the morning go? I had "stuff" that needed doing...anyway, it was a lovely morning...well, the shopping  it wasn't lovely...but the beach stuff was. As I said, tomorrow I don't think we have anything planned...and hopefully that will be a good thing. We have already mentioned a possible swim...but other than that we can just take it easy....I have a political meeting at 5...plenty of time for a good relax in between....BUT....it's the final day of the Ryder Cup...I will have to make sure I have either a radio, phone or internet connection. I don't say this very often but, "Come on Europe"...

Let's hope that by the time we blog tomorrow the golf results have all gone our way. Sleep well all.

Friday 26th September

A short story...

A Twist in the Tail....

Once upon a time there was a little brown dog called Baxter, he was on the whole, a playful little fellow who liked nothing more than to chase about the beach getting into mischief. He particularly enjoyed the summer months when lots of families used to go down to the seaside to spend the long daylight hours cooking up a delicious barbeque....or at least they would have, had not naughty little Baxter stolen their sausages!! Anyway, one particular fine day when Baxter had been to the Grooming Parlour, and was feeling rather dapper, he decided to visit his very good lady friend Jessie. Now Jessie was quite a shy black and white springer spaniel, and although she loved Baxter and always enjoyed racing ( and beating) him on their beach walks, she was always a bit embarrassed when he misbehaved.
Baxter duly arrived at Jessie's house, and had a very good explore, making sure that he had checked out every inch of the kitchen and garden, he did notice a very particular 'aroma' but couldn't manage to find the source, however he quickly dismissed it as it was time to go for a WALK! Jessie and Baxter had a lovely time trotting down through meadow land and onto the beach, where they explored rock pools and rolled in seaweed. Once back home though things started to go horribly wrong.
Baxter discovered the source of the strange smell that had eluded him earlier, it was BILLY (Jessie's cohabitant) the cat! Within a blink of an eye, Baxter changed from a mild mannered, perky little chap into a frenzied barking, foaming at the mouth DEVIL dog! Poor Jessie didn't know what to do with herself and hid under the table as Baxter flew at Billy in a mad rage and hunted him down. To begin with Billy who had just woken up from his long daytime snooze was in total shock and bewilderment, unprepared for this spitting snarling canine that had invaded HIS home. So, he did what comes instinctively to all cats and ran for his life! All this kerfuffle caused the pets owners to become involved, but there was a distinct time delay, partly due to one holding an ironing board ( not entirely sure what she hoped to achieve wielding that in the general direction of the fighting animals, and the other unable to move very fast due to an overlarge abdomen). The noise was earsplitting, Baxter had upped the intensity of his barking, the ladies were shouting, Billy was hissing and spitting, it was chaos!
Billy, in looking for higher ground raced up the stairs, hotly pursued by Baxter and one lumbering lady, the other owner having finally discarded the ironing board followed them. The cat having had enough of this troublesome dog turned to face him, and took a flying leap over him, evading capture and sliding through the banisters to the safety of the outside. Seizing the opportunity Baxter's owner make a desperate last bid atempt in an effort to trap him, with total disregard for her own personal welfare, she threw herself prostrate on the stairs and grasped wildly at Baxters neck, (not caring about her damaged wrist, another story), with her 'bad' hand on his neck and her good hand pulling his tail he knew he was beaten. The  ladies finally stopped shrieking at the dog and each other as Baxter was beaten into submission , but boy,did he get a telling off. Jessie was still cowering under the table, miserable at all the confusion and noise, and sadly watched as Baxter got unceremoniously marched out of the house and into the 'Crate of Shame"... She did wonder if she would ever see him again.....

The End

I've been to see the lymphedema nurse at Jersey Hospice this afternoon, think she can really help me, and given me lots of ideas to help myself, but as its taken me two hours to write this blog it will have to wait until tomorrow!!

Thursday....all day.

Today has been my last "full"day of States work for a while....meetings tomorrow and Monday, but after Tuesday lunchtime I can see some real "clear" time (apart from evening meetings to do with the elections)....and that can only be good....I can spend a bit of time at home looking after the invalid...although how much of an invalid Jill will be by next week is debatable....she does a little more every day.

 I came home for a brief few minutes at lunchtime today....Jill was out...I called her on the mobile to see if she needed a lift home, but she was already three quarters of the way back from a "down the woods -along the coast - Breakwater - back through the lanes" walk with the dog. No doubt Jill will add a couple of photos of the walk...it's been a good day all round....and Jill went swimming again....didn't bother to call for a "lifeguard" friend to help...just got a random member of the public to "stand watch"...goodness knows what the press would make of it..."Deputy's wife kidnaps walker - forces them to watch changing and swimming".....the mind boggles. I'm sure it's been another day of progress....Jill even came out with me this evening to help support the constables "Yes" campaign at St. saviour's Parish Hall.... her first "evening out" since hospitalisation.....probably not quite the sort of "first evening out" she had in mind....but we had a good time....plenty of friendly faces.

The other details of today are a little depressing.....Dan has been to the Minquiers today....Jack has been to Carteret for the day.... I'm not impressed...and even more so after hearing how wonderful the sea has been all day. I should try to do some boating this week end....I have my little RIB to get out of the water...and, if the weather holds, La Duchesse to get back to town....but I don't want to do either before the weather breaks.....nothing more infuriating than having boats "unavailable" when the sea looks like a millpond and the sun baking hot. Anyway...enough of my boring news....here's the proper blog writer.

Just to rectify the above statement two very good friends were on lifeguard duty- CH and JH, having read yesterdays blog they looked in at Bel Val to see if i might have been there, and their timing couldn't have been better- I thank them!
Not writing any more, off to bed, another full day of activities tomorrow, and I must find time to tell you the story about two dogs, one cat and SC, very entertaining!!!

CH and Timba on 'duty'!

Jessie with her friend....

Dan off with Seafaris RIB to town, Jessie making sure she DOESN'T go too!!

Looking for signs of 'physical activity" at le Saie.....( actually the only activity was from the dogs jumping around the rocks!)

'School friends...' from yesterdays tea party....

Totally irrelevant fact...

....Lobsters' bladders are in their heads....

Wednesday 24th September

Tired tonight I've had a busy day... not much exercise, except of the jaw! My friend SW picked me up just after 9:30am, and we went off to the Squash Club for the Macmillan Coffee morning. Lots of lovely friends to chat to, and great cakes too!

The In-Laws supporting the fundraising efforts!

My taxi service then kindly carted me off to do some food shopping, and so by the time we got back home it was definitely time for a late lunch! She kindly left me to sleep which didn't require much persuasion... and my daughter had to kick me into action for an afternoon cup of tea at Ransoms with school colleagues!!

I did enjoy some lovely Bream again tonight for my supper that my boys had caught yesterday, with of course garden veg. The rest of the evening has been watching TV and blogging intermittently! Think i'll be back to dog walking and a bit of swimming tomorrow......

Tuesday 23rd September

This was my original blog.... lets say the whole blog thing seems to be a total disaster at the minute.....!!!

I've been in the sea!! Nearly swimming!! Well actually more of a cross between treading water and doggy paddling, but none-the-less i have been in the water, and it was LOVELY. What has also been bliss is to lose those dreaded stockings even for a short while, freedom for my feet!

Had another lovely 'i'm getting better' day, certainly being out in the warm sunshine has really helped. My friend LW picked me (and my dog) up this morning and took us to the beach for a walk, very enjoyable. Although by lunchtime I needed a rest, which of course being sensible I did have....

Took a call from my consultant today who has been busy trying to 'sort me and my future medication' out. We are going for chemo the end of next week ( that gives me ten days to turn from 'pregnant emaciated scarecrow' into 'protein powered superwoman'!!) No easy task, but I like a challenge, and I've a feeling I've still got some mighty big challenges coming up, a testing time for sure.

Blood tests Monday, needed before chemo, checking white cells to see if too low, also checking CA 125 ( I have been warned it will be high, due to lymphatic fluid) and also to give us a baseline before treatment starts.
Me swimming and Pdlh on lifeguard duties !!!

Senior blogger wants a piece of tonight's action, so I'm handing over.....

..and not much to report really. Another full day in the States for me, so not much time at home to try to keep up with "her indoors". I'm pleased that she's had a such a good time in the sea....but more pleased that she has roped in a lifeguard to make sure she doesn't add to the statistics at the Lifeboat station...how emb

Steve here...just so as you know when you read the next line....

Words cannot describe how I hate this macbook whatever it is.....Jill had written quite a bit this evening...added a photo of herself swimming (!!) and then gone to bed saying "I've left it for you to finish off and post". That all sounded fine...until I pushed a button and the photo disappeared....then in my efforts to retrieve the photo I have managed to lose the whole bloomin' thing....boy, am I in trouble.

If there wasn't the chance of an elderly or female reader looking at this I would, at this stage, become very unparliamentary.....I find myself at 22:32...tired...ready for bed....with a lost blog....and a wife (currently asleep) that is going to be pretty unhappy when I tell her tomorrow what happened after she went to bed.

The only good news is that I have found the photo...but I've got no idea how to get it into this post...am going to find eldest son .... he will be able to get the photo on this page in 3 seconds flat.  

so, I've (he's) got it on the screen, and saved....relief...but now for some reason the writing is all "centralized"....and I now need to go off and get that fixed.

So, that's done....and now I finally find that the coffee I made before starting all this has gone cold... and I don't dare make another because we're on our last pint of milk....and more coffee making will result in not enough milk for breakfast.... and I thought everything was going so well this evening.

Before I forget...the photo above is of PdlH lifeguarding Jill as she swam at Bel Val today.....as we all suspected, our wonderful consultant only had to whisper the word "swim" and Jill was down there...costume on....wading in for the first time in a good few weeks....I know she was over the moon to "get back in"...and it can't have done her any harm at all....especially with P overseeing. P and C are on holiday tomorrow....so no doubt another friend will be telephoned and requested to "observe"...hopefully a suitable lifeguard will be located....we can't have Jilly becoming another statistic for the Lifeboat, and how embarrassing would it be for Daniel to find that he got called out on said Lifeboat to rescue his own Mother.....let's not go there.

What else can I report tonight? I can't say that it's clear to me exactly what happened today....I've had a full day in the States...gone at 07:30 and back at 18:50. I know Jill was picked up (with dog) and a Grouville Beach walk happened...I know that Jilly walked to meet Bex off the bus after Bex had finished work....I know she had a couple of rests .....and I also know that said dog had a second short walk this afternoon. Finally, I can report that Jill and I discussed the nights drawing in, and how grumpy the dog looked when she (the dog that is) realised she wasn't going out in the meadow after supper....to be fair, Jill was also pretty grumpy about not going in the meadow as well!  Truth be told, we're all a bit sad that there is so little daylight left after 19:30 now... we have spent so much time this summer "out and about" after our evening meal that we really miss it....ho hum...roll on the week end.

I think that will just about do....it's now 23:05....tomorrow our reader can look forward to me being pilloried (??? is that a word??...well, I know it is, i'm just not sure of the spelling...and this bloomin' macbook thing doesn't have a spell check...well, not one that i know about) ....ridiculed then....on this blog by my wife.....maybe she'll have today's "official" news to relay again for a second time.

Stay tuned for more "husband created computer disasters" soon......

Monday update

Dear All,

Just a very quick additional post to say that we've just realised that yesterday's blog didn't upload for some reason.....

.....it's been uploaded now....

....our reader has two for the price of one this evening...enjoy!

Sunday....21st....of something...

We need to do a few things....first, we need to start a rota, and I don't just mean us here at Seaford, I mean all of us....a rota to allocate time slots for people to be a 24/7 "jill watch" person.....secondly we need to fit Jill with one of those ankle bracelets that has a homing device on it...thirdly, we probably need to fit an electric fence around the house, the type used at high security prisons.....and the reason for all these precautions? ...well, it's because the"supposedly incapacitated one" has started going off on her own unsupervised...let me tell you more.

The moment that Jill found herself in her own this morning she was off...and not just a gentle stroll up the road.....no, she embarked in a not so gentle walk down to Le Saie....down through our woods and on to the footpath...it's not flat...it's not even uneven...at times it's almost Randolph Fiennes, or however you spell his name. Can't say I was terribly a amused....she was home when I returned from St. Catherine's Sailing Club this morning...and she had that smirky look on her face....We suspected something was up, mainly because the dog was collapsed in a heap under the table....and said dog only collapses after she's been chasing pheasants....and I had got back from her "morning walk" at about 930......little Miss Sneaky will need constant supervision....and also handcuffing if she doesn't start behaving.

I'm going to hand over now....her improvement continues, and our reader will know that from the fact that I'm not getting so much "air time".....Jill has far to much to say to allow me to carry on blogging at lib......so here she is...

Think I've proof read the first half of the blog, and at least dealt with the most glaring of errors... Tempted to leave them in as they make me laugh!
As for the constant referrals to 'she' and 'her', I take umbrage at those remarks , and I am seriously worried about the use of 'handcuffs' I'm not even going there!!!!!!
Anyway, I didn't sneak off for a walk, I left a note saying I was going for a little stroll in the meadow, ( realised halfway down I'd forgotten my phone and couldn't call for assistance even if I needed too! )


I also managed to make some Jamie Oliver "quick tomato chutney", just two jars, but with our tomatoes, onions and chilli, so be interested to see what it tastes like.... Also a ratatouille ( my boys fav dish.....) and cooked three good sized beetroot, so all in all a productive morning.
Had two neighbours pop in with some delicious homemade tomato soup, and two other friends pop by late this afternoon, offering warm hugs and not so well received ' sensible advice', fortunately I have selective hearing so I don't know what they said.....

After a long rest this afternoon, helped by watching 'Saving Mr Banks' ( thanks for loan of DVD SC ) however I'm not entirely sure of ' feel good movie', it made me cry!!!! Still, a very good film though!

Bex and I went for a walk through St Catherine's woods and up past the parish church to the village green, they are building a new pavilion/ tearooms and it looks brilliant. It was lovely and tranquil up there, with a few families enjoying the green area and pathways with their small children/dogs. I did need to phone Dan to come and pick us up, I couldn't manage the walk back, much to Jessie's disappointment, but to use one of Dans, well worn phrases ' to be fair' that was her third walk of the day!

The new pavilion


Happy daughter, and disgruntled dog!



Painkillers still working, although for some reason I am uncomfortable at night, and find difficulty sleeping, I know I could 'up' my medication but am reluctant to use it. I will have to call the hospital tomorrow and get an appointment for a check up.

A polite reminder for Wednesday Morning ....

Coffee and cake at the Squash club down in St Clement, in aid of Macmillan Jersey. If you fancy trying out racquetball turn up with trainers at 9:30am, if you just fancy a lovely cup of coffee and a piece of cake come at 10 and meet my lovely friends!!

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Monday...again!

Thought I'd get in quick this evening as no doubt there will be tales to tell when her ladyship settles down to finish this blog....and it's Monday again. This time last week we had both survived our bambulance ( as they're known in our house) trip to London and were "settled" back in to the Marsden.....how time flies....I'll resist the urge to add "when you're enjoying yourself"!!!!

I've been in the States today, so not been here to "supervise".... But the firefighter was home (night shift for him this evening) and he helped out with the hospital visit...I'm sure our reader will get the details from Jill below....Bex started her new "job" (placement) at Bedell/Cristin this morning, so we were both gone early....I called in at lunchtime to check all was well....and it was...much relief for me....and Bex had also got off to good start...she's working 9 - 1....so happy girls at home.

Came home this evening to a still happy wife...no full length stockings...and also, apparently, a recommendation from the hospital that she could swim in the sea (!!!) ....I'm going to wait to speak to Jack about this. He was apparently in the room when Jill was told this....and I want a second opinion as to exactly what was said.....it sounds too good to be true....and with the water still at a balmy 18.5 degrees it will be good news indeed if Jilly can get back in to enjoy some late summer "bobbing about" (can't think that she'll be doing proper swimming)..... She'll probably just do an imitation of a mooring buoy, just like all the others at Bel Val.

Other news from the hospital is that there's still some discussion going on around what to do with the fluid buildup....and whether we can start chemo without "losing" that fluid. I'm not sure where this is going, but I'm confident that we'll end up doing what's best. One thing's for sure....Jill is a lot more "comfortable" with it...sleeping much better last night...indeed, had things been different then I think she may have actually stayed in bed this morning...maybe I'll risk taking her a cup of tea first thing tomorrow morning (not a habit I've ever got into I might add) .... At least I know that it's not something that will have to be done for long...we both get up early in our house....and I'm sure that "normal early morning service" will be resumed pretty soon.

It will be unsurprising to our reader to learn that Jill went walking again today....and I'm glad to report that her routes seem to have been reasonably sensible....but she must have gone uphill at some stage, as she didn't request any lifts home...so, what goes down must come up....but all seems good.

I'm going or stop now and hand over.....I think I know when I've pushed my luck far enough...more from me tomorrow maybe.

I'm not really going to add too much to this very informative blog, I think the 'boss' has covered all the main points! I thank my son for taking me to hospital today and bearing witness to all that was said, including bobbing about in the sea( knew Steve would never believe me) ! I think it's partly to boost my mental well being as well as helping me physically, sure it will do the lymph fluid some good, as well as the stitches ( AH will agree!)
It seems the messages from the oncology units are mixed, Marsden saying yes, get on with chemo fluid ok, jersey saying drain, then chemo. Blood tests need to be looked at as my white cells were far too low for chemo anyway, I'd need another GCSF ( injection to boost bone marrow into action). I'm actually not really concerning myself with the whys and wherefores of chemo, I'm just concentrating on packing the protein in, and trying to build myself up ready for whatever, whenever!!

Thanks to visitors today, lovely flowers and well wishes from Chapel folk.....

And finally I'm finishing with a fact.... "To pingle is a Norfolk word meaning to play with your food" ! 😀


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If it's Saturday....it. It's be Seaford.

Tried hard to find a suitable song ......failed...hence the uninspiring title to this blog.

Husband here...returned for another bash ...felt I was owed another go, especially after yesterday's "issue" with the non-checking of spelling before posting.....I note the comments....at least it proves that at least one person reads this...which is one more than it might be. Food should, of course, been good.....but where the heck moistens came from is beyond me,,,all I can say is that is sounded more exciting than it actually was!!

Right, back to business...this evening I am working at a table (and not on my lap on a hospital chair).....things are reasonably under control...and for a pleasant change we haven't had anyone wheel a trolley into the room to take blood pressure in the last twenty minutes. The dog is asleep under said table...ladyship has instructed me to start blog...and apparently she will finish later...at least she can do the spellcheck.

Today has gone as I might have predicted....without doctors and nurses to control the wife, she has taken things in her own hands....two walks have been taken, and of course muggings felt obliged to go along just in case she decided to keel over....I should have been stricter...especially this afternoon...the bloomin woman thinks that as she's not in hospital she can resume full training....

We started with a gentle stroll along Grouville beach early this morning...and what a morning...Jersey at its very best...no wind, no clouds, high tide, flat sea...glorious. We all felt better for the experience...including the dog. Came home via the butcher so Jilly could purchase some "proper" chicken for her no fat diet....I went off to a meeting at St. Brelade (why do people have to live so far away?) ....and came home to find her ladyship in rude health...an empty house (Tom golfing (!!) Jack firefighting, Dan boat skippering, and Bex drumming at the Dragon boat racing) meant that "she" had done as she pleased for a couple of hours....we were all chilled....and then, an hour later, we had the "it's almost time for the dog to have its afternoon walk"...and that's when I should have put the proverbial size eleven down....but of course I didn't.

We decided, or rather Jill decided, that we (she) could manage one of her "regular" strolls....down through St. Catherine's woods to the lifeboat station and along the coast to the Breakwater.....I said it was too far...but, as I've described, no one was taking any notice of me...so off we went. Happy dog again...but it was clear that as we approached the coast Jill was slowing...not quite stationary but some might not have noticed the difference...we had a quick chat to a friendly parishioner at the Station, and then off along the coast...on arrival at Bel Val we had another chat to those (P,C and M) who had just had a swim..not appreciated by all of us as one might imagine...and shortly after we actually stopped at a bench and sat down for a spell to catch our breath before reaching said Breakwater. I had left a note for Bex before we left saying that we might need picking up....but Bex arrived anyway, and we were pleased to see her.







Our plan for a leisurely coffee was shelved...Jilly was pooped...and we returned home to have a rest on the sofa. All was good, but I have learnt my lesson....tomorrow we will NOT be attempting any marathons....or fell running....or any ironman competitions....we will stick to something gentle...on the flat...in fact, if you can't put a spirit level on it then it's too steep.

Apart from all that I think it's probably been a good day..as first days back go.

I've just been informed that Jill has decided to go to bed....daughter has aided me in putting photos further up the page...sorry they're not better...at least people will be taking notice of my stomach and not Jill's...not the most flattering photo of me....but it will give our reader something to comment about.

So, first day home completed....all good I think....maybe tomorrow I will suggest that Jiily gets on the scales at the same time every day...like that we might just have a go at trying to work out if she is loosing some of this fluid...I know that she would be more than a little pleased for some evidence of improvement...if only because she wants to get on with chemo asap....and I know that our reader will know what I mean....no one would really want to have chemo, but when you know it's coming, you may as well get it over with just as soon as you can. That is our target at the moment...getting fit for chemo...then we can fix our minds on getting it finished. Last week I told Jill that our target was to get the fluid "situation" under control...and that we wouldn't think about chemo. It will be good tomorrow to remind her that things ARE improving....and that we ARE making progress.

I think that will do....there will be people out there who want to get to bed...and having to read a never ending blog won't help.

Let's hope for more progress tomorrow...and if tomorrow's epistle relays tales of walks around the island then I have had another "epic fail"....and probably need sacking....now, there's a thought.


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Friday 19th September

I usually keep well out of politics, but on this occasion I would just like to mention two things. Firstly a big congratulations to my husband, I am very pleased that he is able to continue all the good work he has done not only in the parish of Sf Martin but for Jersey as a whole. ( and for TH for nominating him, we heard the speech as our Tom recorded it on his phone for us!)
Secondly I am relieved that Scotland has voted No, and we can all stay together, although there will be big changes to come I'm sure, but that's not a bad thing.

Ok, now on to more light hearted matters...

I still am wearing the incredibly sexy coffee coloured full leg support stockings, day and night ( yes I do wash them) and yes they are very uncomfortable and hot.
I have to wear baggy clothes as nothing fits my 'Mr Blobby' body, still lugging about litres of fluid, mostly in my abdomen but also around my legs and backside.. Pretty...
I am however feeling much better in myself. Generally my warped sense of humour has returned, and I am 'nagging' Steve on a regular basis.
My painkillers have been reduced to one tablet, with a top up of a morphine based liquid if I need..
My eating has improved, although my protein ( albumen) is still very low, I am on a high protein no fat diet and will be for sometime. From what I understand, and in simplified form, I need protein in my cells for the Kyle ( lymph fluid) to disperse through a form of osmosis, and as one of the functions of the Kyle is to transport ' fat' etc around the body, I am trying to eliminate the fat so it has less work to do, and stop it going into overdrive... ( hope no nurses/doctors read this it's probably all incorrect!!)
Aside for all this my blood pressure is till very low, 97 over 63, on a good day I can get it over 100, but rarely! Luckily I feel fine, not dizzy at all so not quite sure why it's misbehaving.

I am posting this from hospital this morning, before we begin our journey back to Jersey, apparently the doctors from oncology have been in contact with each other, I have a six week 'window' post op before I need to start chemo. As the Kyle is still causing me problems I probably won't start chemo next week, but certainly the week after for sure. This will be probably six sessions but not yet finalised the drugs that will be used and how often they will be administered.... I'm so looking forward to that! More injections too, as I have to continue with the tinzaparin once a day, my scarecrow arms .....

....Steve taking over as the consultant has arrived....

I can't believe it....I have just spent twenty minutes writing an up date, and then the wrong button came up and all my food work disappeared AGAIN. I think I can say officially that I am an idiot....why do I do it?....trying to move too quickly. Anyway, here I go yet again, trying to relay some thoughts.

We're about to leave in a minute...nurses keep popping in...I really think they are only doing it to make sure that we are actually leaving.....seriously though, everyone here has been fantastic, and I mean everyone....consultants,moistens, nurses, cleaners, food people...everyone....what a fantastic place this is...it's just a real shame that we have to experience it "from the wrong end".... We have all the drugs packed...and a long letter explaining why we have them....I think all,the paperwork is done now...discharge forms...and other bits and pieces to full in before we leave...

So that's it for now folks....I'm going to save a post this...with luck the next time we post will be from Seaford...although I have to say that I'm a little concerned abut Gatwick....Jill is fit enough to be talking about shopping...and that's a worry for me and my bank manager....if she drops too many hints than I may decide that she news a wheelchair again.....at least that would be a good way of immobilising her for an hour or so....just enough time to get through duty free!!

Okay...we're off...cases finally packed...downs to the Fulham Road to hail a taxi...Victoria Station...and then the Express to the airport....an "easy" experience it's easy jet .....and then a lift back home form the wilds of St. Peter... Speak later everyone...wish us luck.



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The morning after the night before.....

Right, I came in to the hospital at eight this morning....no panics...just wanted to be here when the consultants came around....and also to make sure that my lovely wife isn't telling porkies to them all in an attempt to be let out....she would so like to be at home...with her dog!!!

As I arrived I actually bumped into our consultant in one of the corridors downstairs....she's not coming around early this morning as she has meetings first thing....great...my routine is destroyed...the nice lady that tells me what to do when I'm (desperately) trying to operate the automatic checkout in Sainburys will be wondering if I've been run over by a London bus.....and I've not got a newspaper either....looks like the biggest decision of the morning is whether to go back out now and shop etc. or just wait for the consultants to arrive....phew, it's a tough life trying to decide!!

It was great to see G and LT last night...hot food for supper...that makes a change.....and of course, once we got to nine o'clock, the phone started buzzing with news from St Martins Public Hall....all very exciting...some bloke has been elected by the parishioners without even being there....what's all that about? Seriously though, I'm chuffed to bits to be able to carry on being Deputy....there's so much more that I want to get done...and Michel is also to be re-elected....I'm so pleased....i think we make a good team.

No sooner had I typed the above ....the consultants turned up....a very quick meeting apparently...just as well I didn't slope off to get my paper....would have missed all the fun....WE ARE COMING HOME.....I suspect that they have basically had enough of us, and the thought of having us here for the weekend was just too much...so off we go. Flights are booked (many thanks Jersey General for helping to coordinate that) and we are with easy jet......let's just hope it's a little easier than it was the last time....at least it's a Friday morning and not Saturday afternoon....and hopefully the rest of the population of London will be at school or at work....

Lots of messages for me today...most to do with the nomination meeting last night...but lots of others for Jill from all sorts of wonderful people...too many to list. We are also really happy for two particular people who have their son back at home after a few months away....those of us with kids know how tough it can be when you're "not in control" of little ones....or not so little!!!!

I knew it would happen.....no sooner have they told Jill she can go home, she's decided that she wants to go for a bloomin' walk....it's still morning...we don't do walks in the morning...having said that, we're gong to be doing quite a bit of walking tomorrow, so maybe we should get some practice today......as long as I can think of a route that avoids the shops....Im always very wary of shops without prices in the windows......dangerous for your bank balance.

So off we go... I'll post more later...but thought that our reader deserved to be updated ASAP with the travel bulletin. Laterz peeps.

Wasn't allowed to post by her ladyship...so it's just a continuation below.

Right, back from walk....a struggle keeping Jill out of shops...but managed by conveniently forgetting to take my wallet (phew!) .... But we went down the Fulham road...crossed to the kings road...and then back up via the park...less dodgy people there today...maybe they only come out in the afternoon.
Got back to the hospital and reconnected to the internet....it appears that the boys at home have been re-in acting (?) something from the "Bridge on the River Kwai".....building what can only be described as a "structure" over the stream in the meadow so they can get the mower over to the other side....all a bit Moses and the Red Sea for my liking....but they do seem to have had a good clear up in an area that has always been a bit inaccessible.....not any more..our meadow will be envy of the civilised world next year...not that anyone ever gets to see it....the hanging gardens of Babylon better watch out.

Beef salad has just arrived...for Jill that is....reminds me that it must soon be time for me to cross the road to my cafe for lunch....people watching on the Fulham road is a past time I can thoroughly recommend.....

Honestly, it's a minute by minute account of today's activities, I shall be glad to get back to Jersey and let him attend to his ' important ' stuff and leave the blog posts alone for a while......:-)

You've heard of three old ladies locked in the lavatory? Well Steve managed to get locked in the lift with four ladies and the sweet trolley!!! Typical, as he said they could survive there for quite a long time, ( not entirely sure the ladies would have agreed with him) that lift is definitely dodgy, but really the only means of getting up to the the fifth floor, especially if you're not fit.....

Off for our second walk, he realised he'd left his jumper in the cafe he had lunch in, and then during the walk we stopped at St Luke's church cafe, where I had to pick up his phone he'd left on the table......his mind obviously on other things!

Posting a few pics...


The Marsden.....' my windows' on the top floor...


Our selfie, in St Luke's Park ....


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The return of the disappearing blogger...Wednesday

Well, seeing as I'm such an "epic failure" I will try hard to "save" everything today....and hope for the best. Ironically, the volumes that I had typed before the bloomin iPad decided to go to sleep were mostly about charging my mobile devices....little did I know that her ladyship's iPad was also badly in need of reviving....anyway....we now have more chargers plugged in to all sorts of pads, pods, blackberries and androids than the average patient after an big operation...I'll try to remember what most of yesterday's failed post was about.

Save

The big plus point yesterday was that I didn't think we went backwards at any stage....and that may be the first day that's happened for some time. Jilly was dressed properly the whole day, and as she mentioned, we went out walking...I can't say I'm totally in agreement about the park....it is a very nice park...with a church next door....having said that, there were some very dodgy looking people in it if you looked closely enough...I had my eyes firmly on Jiily however, as her blood pressure is maybe the only thing that is a slight concern...still a little low this morning.... But then she did have a rather relaxing massage just now....I felt sleepy just watching. The nurse has just arrived to take stitches out from the "drain plug closing"....so I'm going to "save" and go and hold her hand...there may be some swearing as she's not going to have any local anaesthetic.....this could be interesting.

Save

Right, we're back....and, as usual, that was different. The poor nurse said the words "right, this is the last one" three times!!! Anyway...all done now, and Jilly has a photo of said stitches to add to this evenings blog. We're now "discussing" pain relief....this morning at the doctors meeting Jill suggested, no asked, if she could reduce the pain killers (been quite a while now on heavyweight pills) and was told yes....the nurse has just come and noticed that them seem to have removed most of the pain relief completely.....what's going on??? The lovely nurse has gone off to "have words" with someone...it's of no consequence at the moment because lunch has just arrived...lentil soup, followed by tuna and sweet corn salad...hold me back....it must be my cue to get across the road to my little Cafe Roma for lunch (or is it queue).....not sure that I'll be sat outside today though...weather is very dull and murky....hopefully brighter later.

Time to save and post I think....no doubt there'll be more drivel after lunch...and I'm sure that i'll be getting pestered to " take the wife out for a walk"....thought I'd left all that sort of thing behind in Jersey!!!

Save.

Not posting yet....major fail if I do apparently...her ladyship wants to " add later"....suits me....off for lunch.

Tired this afternoon, needed a big sleep, the lovely lady in the next bed was just back from op, and so needed two hourly checks last night, it meant my night was a little disrupted ....

Anyway, sleep over, I was champing at the bit to get out for a walk, and it was lovely, managed half an hour before I was frog marched back into the hospital.

Friends over from Jersey LT and GT happened to be in London and popped by to see us this evening, it was nice it see familiar faces, and them to be able to take Steve out for quick supper, taking his mind off the fact that he was supposed to be in Jersey at the nomination meeting in St Martin... Despite my insistence he should fly back today, he wasn't having any of it..

Think that's all for tonight... Really hoping that finally things are on the 'up' !!



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Tuesday 16th September

I only know the date because I've just had to sign a form and write it, otherwise I would have no idea, the days are just a blur, interspersed by meals and toilet trips.....( obviously one follows on from the other)

My husband has had what is known in our house as an #epicfail .... He wrote loads of post earlier, failing to 'save', thought he had enough battery power in iPad and guess what he didn't....

I am not writing reams of drivel you don't want to read about, and anyway what is there to say? Brief visits from different doctors this morning, basic poke, very unusual to be in my situation but very occasional can happen(!) just going to keep an eye on you, and hopefully not have to aspirate any more, as it maybe settling down.....

Key Worker came to see me this afternoon, didn't realise she was psychoanalysing me as well, told me I'd mentioned " going home" three times in ten minutes!!!! Did manage to strike a bit of a deal , if I behaved I could go outside for a WALK! Whoopee! Steve took me round the block and into what he described as a"park", very nice green space if you're a Londoner but nothing like a real park...what do you expect we are in Chelsea!

And so I'm relatively pain free but that is definitely aided and abetted by strong painkillers, and I know this as by the time it's coming to next dose, I'm ready for them ( hope they're not addictive...) I feel able to walk a bit faster, put socks and shoes on ( couldn't reach feet properly before) and generally eating better and slightly larger portions, ( couldn't get any smaller!) .

Thought you'd like to see photo of Steve reclining in my chair and reading the paper...... He had been trying in vain to listen to the states 'live' but it was broken, so had to follow twitter feeds all day ....and yes that is my private TV you can see on the right hand side of pic....


He told me to smile..... I just thought that folk think I was exaggerating when I said I looked five months pregnant, this top was the only 'loose' tunic I had in my wardrobe....and it's tight..... Totally ridiculous it will be four weeks Thursday I've been struggling with this ' fluid' , and yes I'm angry!!!!!


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If it's Monday...it must be the Marsden. Part 1.

So, here we are in sunny Kensington...or is it Chelsea? ...either way, we have returned to the top of the Fulham Road, in Horder Ward... 5th. Floor....and it's just as well the lift works....20 stairs per floor....and I should know because I've counted them more than once already.... We have had an "incident" with the lift already....it arrived...Jill got wheeled in on her stretcher ...the Doctor and nurse got in along with the two ambulance people...and another lady....they punched "5"....off they went...I waited ....the lift went down instead of up....it descended to the basement, turned around and came back up to my level...
The door opened, but the lift was about two feet higher than it should have been ....the lady presumed it was level and stepped out....from her heap on the floor "words" were spoken....I decided that it was time to leave so I walked up the stairs.....what a start...and we hadn't even got to the ward at this stage...

....when we did eventually to the ward I realised I had left my phone in the ambulance....down the 100 stairs I went ....in fact more than that because the street level is another flight....got there just as they were shouting the doors to drive off.....panic over.

For those of you who like travel details we have already today done car, ambulance, plane and ambulance....the plane and trip up from Biggin Hill were both about an hour each...so good going ....and I knew the ambulance men in Jersey and the pilot of the plane....so all good. Jill was strapped into her bed for the whole journey...maybe a trick that I could try in Jersey....and a pretty slick operation all round. For those of you who know their planes (I think there is at least one pilot that reads this) we were flying in a Piper Chieftain...twin 350hp engines with turbos....i know all the details ...sat up at the front alongside NP....had a great view...chatted to him all the way over. The ambulance was a Fiat....don't say anything....it got us here...

We are currently in the throes of doing al the usual....especially when you arrive directly from another hospital...bloods, pressures, tests, swabs.....it goes on. Supper has been ordered, and doctor and dietician have also,been. No fat....no fat at all....as if Jill eats any fat anyway! I don't think much will happen today...more discussions...tomorrow may be the day for decisions?......although they have already indicated that aspirating Jilly's stomach isn't the favoured option....I don't know how they intend to lessen the swelling then...maybe they'll bring some special Doctor Who device down and suspend it on sky hooks .... Sucking out the fluid without intervention, just like a cyber man or dalek might do?

I'm going to post this now...hopefully her ladyship will add more comment later on. Stay tuned for Part 2.

Update....

A long day, and all slightly surreal... " is this really happening to me?"

Steve's covered the journey so I'm not going to write anymore, except it was all very professional and smooth. Many thanks to all involved. My husband didn't tell you that he dropped his phone on the floor of the ambulance , didn't realise until he'd got up to the ward, raced back down just as they were closing doors and driving off.....

Blood tests, how many have I had? Too many to mention.. So another round of blood to be taken, started off ok, needle in off we go, until the nurse turned around to pick up the other vial, having not released the tourniquet to be met with the needle popping out and squirting blood in her face and down my arm!! Much mopping up ensued but quite quickly got gauze and tape over the vein and it was fine. However still short of blood the left arm was quickly on display for ' ripe' veins, one duly found only when the needle went in the vein retracted ( something it's done before, they like me get fed up of being poked!) . At this point the nurse decided to call a colleague and see if she had better luck, she tried a new vein in the left arm ( painful, no blood- and I may have a bruise) before once agin trying the needle shy vein, which very reluctantly gave the required amount of red cells..... But..... On her confirming my name date of birth blah blah, found she actually needed one more sample for 'clotting' ..... We looked at each other and she said.... " I'll do it tomorrow!!!"

The consultant has been to see me, she is sorry that I have really been suffering, and said it was fairly unusual for the problem not to have sorted itself out by now. She was very sweet and kind and I did get a bit emotional , she also said that they (the other consultant) and her discussed the fact during the operation that they had to cut the main lymph vein, and was the plan to sew it, clamp it, or just leave it............

Anyway I can't turn back the clock, so I have to move forward , I think they may do an X-ray tomorrow and more consultants are coming to see me. They are also monitoring my fluid intake and outtake ( is that a word?!) a slight possibility of an operation, but at the moment " monitoring" seems to be the key word.
I have forgotten to use the edit function so this blog will now get posted twice... I'm too tired to let it bother me!!!


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Sunday..the day of rest!

Just for a change today we decided to go to hospital....how long is it since we had a day when we actually didn't make a visit to the big building in The Parade? The fact that I don't know shows that we've been there just a bit lately....and today was no exception. Having said all that, today has certainly had some real high points...and no real downsides as such....provided you don't call making arrangements to go back to the Marsden as a downside...we know they are the real leaders and experts in the field of cancer, but we've had such fantastic help and advice from everyone at the General...and there's nothing like "being at home". Tomorrow we travel back to London, and with a fair wind we can get this issue of "fluid" sorted out once and for all, after which we can focus properly on getting on and cracking this chemo.....and then, next year, normality again.

The day started well....Jilly had a good night...and we were all up and about early. Jill didn't feel the need to visit the hospital during the morning, but as the day progressed it was obvious that we would need to "pop in", if only for the doctors/consultants to say that all was well, and that Jill could come back home again for the night. I walked the dog for an hour...but as usual, my hour lasted two, as it's impossible for me not to bump into friends, neighbours and parishioners, all of which need an "update" (they should read this blog!) anyway....Pete and Donnas were due back on the boat at 2ish....we had abandoned plans for a lunch "out".... and so P and D, and SW (who had very kindly picked them up) all arrived here for a feed..... we were then joined by T and S, then my sister, and then Mum and Dad ....and then S and A arrived from the wild west.....we were almost in full party mode....except of course that it was Sunday lunchtime...but Jilly sat at table and ate a good plate of food, something that hasn't happened regularly enough in the past few weeks. ...it was all good.

It was obvious that Jilly was in increasing discomfort as the afternoon wore on, and as soon as the visitors had departed for their various homes we set off for the hospital. Jill had a whole empty ward to herself (Pipon is usually very short stay, during the week) and after a short wait we were attended on by NL, and she was really great, explaining not only all the procedure for the "handover" tomorrow, but giving Jill a 100% going over from top to tail.....probably more emphasis on the tail I think! Jill found the "comfortable" position in the hospital bed a real benefit, and it was obvious that after an hour or so she was much improved....and we set off for home "all the better for seeing the doctor". I was, and am still, concerned that Jill's "tummy" might be an issue between now and when we arrive in the Fulham road tomorrow...but we both know that if she arrives without all the symptoms that have given her all the problems then it will be difficult for the Marsden to see "what all the trouble is"....a painful and uncomfortable trip awaits in the morning...but I'm happier this evening that we can cope until we get to see the experts tomorrow....we're also travelling with a doctor and a nurse....so we're in good hands...provided the pilot doesn't ask me to land the plane!

This evening has been spent on last minute preparations for tomorrow, mainly me I might add....Jilly is always organised, but I'm afraid that I am still very much lastminute.com....and this being nomination week I had a few extra things to try to finalise. I went to the Public Hall to meet the Constable ( he works far too hard) but I was grateful to be able to have a quick catch up about what's going on in the coming week. So, Jilly has her bag packed, and I have thrown various items of clothing into a holdall.... I always use the following aide memoir before travelling... PMT....Passport, Money, Travel documents.....and I have them all on the table, so what can go wrong!! Tomorrow at least I have no travel worries...and our wonderful friends and neighbours S&AD have "volunteered" their flat again for my/our use. As long as I can negotiate my way to Sainsburys around the corner I will be fine....and I know that Jilly will be getting the best treatment just up the road. It was also very reassuring to speak to T (and C) this morning...and I know that I have a back-up plan if things go wrong. How lucky we are to have so many good friends...I know I keep saying it, but I am continually humbled by the offers of help and support that we receive.

As they say, tomorrow is another day...and we will be back to daytime blogging and using the iPad....please forgive us if "regular service" is a little intermittent over the next few days....and I won't open a book on when we'll be back.....let's just hope it's this week.

Saturday.....13th September 2014....

Today has been fine...but in reality it will have to go down as one of those days when we went backwards and not forward....but again, not seriously....yet. As I write we have X factor on the TV...why?...nobody's watching it...and Dad's Army on the other side....surely there's better television on a Saturday night for us in this day and age... I suppose that (in this day and age) we should be looking at our mobile devices and putting the TV in the bin....I digress.

We started off well....I took Tim to the airport for 8...came home...walked the dog while Bex went to retrieve Jill from the hospital. We all got back roughly at 11 (I had been at Archirondel) and Jill was on fine form. Aunty SC was here doing an impression of our cleaner....sorting out flowers, fruit, fridges...just about anything, as long as it started with a F.....and then she hoovered, but our suspicion was that she was trying to fill time while she was waiting for the washing to finish so she could iron clothes...have you EVER known anyone who enjoys ironing?  well SC does...she loves it.....if you have some ironing and are willing to pay then I will start a business and hire out her ironing services. We are really really grateful...specially us boys.... ASC did two jobs really...did the chores AND kept Jill amused for a few hours....the latter being by far the most important.


After lunch Bex went with ASC to get medicine from the hospital and I filled in some details for our trip to London, and then went to three meetings (as we are now away on Monday early I have to get some important things completed, and quick!) and when I got back at 7 Dan was back (+1) eating supper after another not-so-smooth day at sea....looks like tomorrow might be a complete cancel...quite breezy. Anyway, by this time Jill was just starting to feel a little uncomfortable again.....the fluid that had been taken off is either starting to be replaced and/or she has also been eating and drinking again.....all in all I think that we will call the hospital again in the morning....I am NOT allowing her to get into difficulties Sunday evening and I am even more NOT getting to hospital early Monday and finding that we can't fly because she needs to have fluid drained.

We have another fantastic selection of new drugs to administer this evening.... I suggested that we could probably start a pharmacy, with flowers and fruit on the side....we have been so fortunate to receive gifts from so many.

As I type we are just the two of us here, Jill and I, rattling around in our big house. Tom is at a friends working on some Hitech project.....Jack is still at Lessay Faire (I think back soon)....Dan is now chillin', playing computer games upstairs with mates in the loft and Bex has gone to a barn dance at the Public Hall (bit rude to call the Hall a barn....but it does need a major refurb sometime....another project for the next session if I get re-elected) Some of Dan's mates have promised to be down soon and eat some of the food in the fridge...sometimes it feels like we have a family of 10 or 11, and not 6. In all seriousness though, we are always pleased to see the very and varied friends that our kids bring home....some of them are almost like additional family members....and sometimes I think that that's the secret of staying positive....surrounding yourself with positive young people keeps us sane (in a mad sort of way) ...despite shouting at them a lot, we wouldn't be without any of them......long may we continue to have a house full of not-quite-so-young-now people.

STOP PRESS....Jill has agreed (for a large fee) to write just a very few words for our reader this evening.....how special we all feel....come on then....see if you can still push these keys....as we've said in the past....all the right letters but just not quite in the right order....let's see how she does people....

Slightly unfair as I've just had my heavy duty (controlled) drugs, and while they do actually relieve pain, they make me a little 'spaced out', so thought i'd just post a few photos after I'd written a few lines.

Within a very short space of time after the two liters of fluid had been taken out yesterday, I felt a hundred times better, no pain, much more mobile ( able to actually sit up ) and best of all hungry!
Not a brilliant night at hospital, but still no pain, and what a blessed relief, I felt i could deal with anything, such a contrast to the misery of constant pain and discomfort that has haunted me over the last two weeks.   With Bex driving me home, I suddenly felt angry, cross that the Marsden had not had the foresight to at least Xray me and see what was going on before i left, and led me to believe it was a 'bowel' issue. Anyway, there is no point looking back, what's happened has happened, just feel annoyed i've had two weeks of total RUBBISH!!! Feel better I've got that off my chest, and now for a few pics of happy times spent with my lovely brothers!!

Bex not impressed with Uncle Tim cuddles.....!

Last walk I managed down to flicquet on Thursday morning......

Family tucking into one of the many meals provided by friends- (LT and AH and SC and Pdlh)!

Can't leave out my sister who travelled down to London for the day to see me.... I am lucky to have such caring siblings ( I'm the younger prettier one... obviously!)

Finally, this is IMPORTANT!! Please keep the 24th September (next Wednesday morning) free, you are all invited to the squash and racquetball club in St Clement (next to Partners). My friends are holding a Macmillan coffee morning down there. Not only coffee but loads of cakes too- and if you fancy a free taster of  racquetball get there about 9:30am, dont worry its not compulsory! Just turn up at 10:30am and enjoy the cakes! I am really hoping that I can make it, and not be stuck at the Marsden or sitting in Oncology having chemo, both options viable I'm afraid.

Hi ladies, thank for flowers... gorgeous.....I now look nothing like this photo!!!

Friday 12th. September

Well, if we thought yesterday was confusing then today was, at times, in a whole new league....and it all started off so civilised.

I went off to meetings early...leaving Bex to run Jill to the hospital for her check up...having said that, I did leave Jill with strict instructions that she HAD to tell NM about her pain issues, and that they HAD to take out some fluid. After a false start when the hospital called to say that NM wasn't on duty until 12, Bex took Jill in. I went to second meeting (close to the hospital) and waited to hear what was happening...then I had a message to say they were going to do x rays and bloods (last done only on Tuesday)...I left my meeting immediately and arrived on Pipon ward in time for the action. The x rays had showed that there was not any issues with any organs and that (yet again) the problem was just fluid. Given the issues we had with the drain, it was decided that they would use a needle and hope that the smaller "hole" would heal up much quicker. Anyway, this time Jill was quite adamant that I had to be present....so off we went.

I mentioned yesterday that Jill looked 5 months pregnant so it was apt that the machine NM used initially was an ultrasound.....he had a really good look around (I described it to Jill as a bit like using a radar in the fog when you're out on your boat....not sure that she appreciated the nautical reference) but anyway, there's no doubt that (although I wasn't watching the screen) that N could see some issues that needed resolving...mainly around the kidney area I think.....it was also clear why Jill was struggling with all her normal functions, including breathing. The best area to enter was identified, and we proceeded. A little "scratch" while the needle for the local anaesthetic was administered and then in with the bigger needle....pipes connected...and syringes connected as well...and off we went drawing off the fluid. I'll skip the detail from here on....but after at least half an hour of filling and emptying the syringe we were done.....2 litres taken....and Jill feeling MUCH better...and looking better.

A very small phial of "operating superglue" was brought up from theatre.... the needle might "catch" when I pull it out said N....( does every thing they warn you about have to end in "atch"... scratch, catch etc...) ..so out it came, superglue on...all good. back to the ward and we're cooking with gas. Then the real confusion started.

While the "procedure" happening there was also discussions going on about us at the Marsden...    
our reader will remember that although we're in Jersey we are strictly still "under" the Marsden. As I described yesterday, the advice from both sides hasn't been exactly consistent... and they (the Marsden) were still saying this morning that wanted us to start chemo next week...not quite what you want to hear when you're in so much pain that you can't even sit in a chair for 2 minutes...let alone sit in a chair for 2 hours while they give you chemo drugs. The confusion has to be resolved.....so the long and the short of it is that the Marsden want to see Jill next week....Monday to be precise.... and that came as a bit of a shock....to put it mildly.

The thought of a repeat of our less than marvellous return trip back here 10 days ago was not one I was happy about...if Jill has to travel she has to be fitter, and if she's fitter then why would we want to go back to London? But, the decision had been taken....and then we had a bit of luck. It appears that there is an air ambulance taking someone over Monday morning... and there is a space for both of us (even though I may have to sit next to the pilot...the thought of me piloting the plane is enough to make anyone ill!)....so the plan is this...fly out Monday morning to Biggin Hill and get a hospital transfer to the Marsden. The experts over here are very happy with that...Jill gets looked after on the trip over, and gets to hospital pretty quickly. The tricky bit will be trying to guess how long we will be there....I'm sure it won't be a day return....for no other reason other than we won't have any means of transport at very short notice...and the air ambulance will be gone. In any case, I have a suspicion that we won't be coming back until they are happy that Jill is in a fit state to have chemo.....and if they have to operate to slow the flow of the troublesome fluid, we could be another 10 days.....and that's NOT something we want to contemplate.

So, there you are.....the other thing to mention is that the reason that Jill is still in hospital this evening is that they have given her some new and different drugs....some controlled....and they really want to monitor her. I know that she was very keen to come home, especially as it is Tim's last night, but I persuaded her that she really needs to do what the experts want, and that there will be plenty of other opportunities for visits in the future. We'll also have to cancel Jill's involvement in Sunday lunch with brother Pete when he returns on the boat from France on Sunday morning before his flight back to the UK at 6....again, we can see Pete and Donnas in London next week if we need to.

I think that's about it...some rearranging of diaries to be done...and two days to wait...but it seems like we'll be blogging from London again next week...wish i could say that I can't wait, but it wouldn't be entirely truthful. Once again, the funny stories have all slipped my mind, but fear not, Jill and I did share a few laughs today despite finding out that yet another trip to the metropolis beckons soon.

More tomorrow.... when hopefully we will have her ladyship back in da House.

wednesday wonderland?

Today's been confusing, well at least this morning was....I know that, when it comes to us, we're easily confused, but our top man in oncology (the wonderful H) told us all the technical detail, and because we've been there, done that, and both got the T shirt, we are supposed to know exactly what he meant. To be fair, we had a reasonable idea what he was on about,  but the many and various different drugs are all long words, and we're only country people.

This was our first visit to oncology since the operation....and our first visit to the new oncology unit at the General Hospital...what a great facility....and to think that not that long ago we were all working out of nothing much more than a hallway in the back of the Gwyneth Huelin Wing... not that it makes chemo any easier to think about....but it will be better and quieter when it comes to the treatment. Anyway, we were there this morning for our consultation....it was reassuring to see so many friendly and familiar faces, even though we had hoped never to have to speak to them (in hospital) again. The first part of the conversation was about drugs...what they could use, what they'd like to use, what would be the best to use.....and after all that, when they might start. There's no doubt that there is a prefered option...the problem is that one of those particular drugs is not very often used over here. We'll need some special agreements....hopefully we'll be alright. One of the reasons for the particular favoured option is because Jill's bone marrow is obviously not great....if you remember we had that London operation cancelled at the last minute due to low white cell count....anyway, this one drug will be very much kinder to Jill's marrow....it's going to be important NOT to wipe out the marrow right at the start of the chemo...otherwise we'll be finished before we've started.....and this time we really need to try to get through ALL the courses of chemo. Depending which drugs we end up with we will need different schedules...can you believe it, some drugs are every two weeks, some three and some four...some can be taken on their own, and some can be taken in combination with others.....we're going to have to keep a calendar around inside our underwear....and if we're confused now what will be like after a couple of courses of the "hard stuff".

The next subject we tackled was Jill's fluid....call it what you like.....she could well be pregnant (now that WOULD be a shock). The verdict from oncology was that the fluid shouldn't have be left there to "sort itself out" and that normally (in their experience) it would have been drained. If we weren't confused before, we were getting pretty brain dead by this point. No chemo before the fluid is drained....but no sign of anything being drained because the Marsden think it should stay there. So, one hospital say one thing and the other says something else....and the last thing we want is to be the filling in the middle, waiting for a decision. On top of all that there was even a long "discussion" about HOW to drain it.....given the terrible problems with last week's drain, who knows what's happening. There was discussion about the effects of the chemo (or otherwise) if there is a lot of fluid around....you don't want the drugs going anywhere except to the disease.....all in all I think the fluid has to go! ....but when. The specialists are away (at the Marsden ironically) until tomorrow evening...maybe we are heading for a Saturday "sort out".

Jill is in increasing pain....despite my suggestion that we go to Rayner Ward after oncology, the verdict was that as the experts are away no-one there would be able to make a decision as to draining the fluid. We do, however, need to monitor the situation....I for one will NOT be letting Jill get into the same state she was in 10 days ago (10 days!!!  where has all that time gone) We had hoped (and so had oncology) that we would be into the chemo programme by now.....I really hope we can sort this all out next week so we can have the first round of chemo maybe Wednesday. The fact that the fluid is building up again means that her "tummy" (let's leave out the detail for now) is not functioning at all well....no real BO and not a lot of PU either (those nurses among you will know what the letters stand for...the others will have to work it out for yourselves), her appetite has gone due to the lack of space for food to enter her stomach, and finally she is a little breathless due to the fluid pressure on the diaphragm .... all in all (just like last week) we could do with this pressure being reduced soon.....it's not increasing as quickly as it did last time, but it's still increasing a little more every day.

We are taking drugs for the pain.....and I'm not sure if we still have any additional potions up our sleeve in case things get worse in the night....maybe there is some Oromorph (and the clue is in the "morp" bit of the name) ....yes, I've just been to look and there is some....we're pretty lucky that the boys haven't been using it their coffee...seriously though, Jilly doesn't want to get into morphine unless it's really necessary...let's hope we don't need it.

The day has finished a little better...we had a full table for supper...thanks to all those who contributed to the food ...and all in all Jill's a little easier now. Visitors this afternoon also helped to keep Jill's mind off things a little...and catching up with news from outside St. Martin. Something I MUST remember to do is give Jill her injection this evening....for some reason last night it just didn't happen....hopefully no harm done, she had the pleasure of it this morning as we left for the hospital.

Not sure what tomorrow will bring...hopefully a visit to the General to sort out this fluid again....not that we miss the hospital...but sometimes needs must. There were some amusing highlights today...funny how I just can't think of any when I need to. Stay tuned for tomorrow's gripping saga of what, who, why, when.....and how. let's hope for some answers soon.

Yours, confused.com