Catchin' up.....

Some weeks ago now, and after religiously watching every episode of Poldark since the very start of the series, I missed an episode....one single episode (our reader may remember that there was a Sunday night, not so long ago now, that I had to spend driving around the Metropolis in search of fish and chips for her who was in hospital....another story from a previous blog). Anyway, the week following the "missed programme" I just couldn't find time to catch up on BBC iPlayer, and so found myself resolving to watch 2 episodes in the coming days, so I could be "caught up" before the next week. Inevitably I just never found time to bring myself up to speed.....and consequently got to the end of the last series with 6 complete episodes missed! Over the last week or so Bex and I have been trying to "do the Poldark catch up" while eating together...and this evening we have got to the last programme. With 10 minutes left I only have one observation to make.....and that is that we've heard nothing about Ross' be leagued tin mine for 4 whole programmes! What's going on?.......surely the programme makers realise that we don't want to see all those gushy romantic close ups, or those dramatic Cornish coastal views, or even those intriguing political sketches....what we want is to see how the mine is doing....how far have they dug? How many tons of tin have they mined? What's the output per day? What's the price of tin? How many are now employed? When are they opening the next new seam? These are all crucial questions.....how can the Beeb leave us with all these questions unanswered? I might consider withholding my licence fee if these issues are not resolved soon. In some sort of strange coincidence, the EV (electric vehicle to you petrol-heads) may well be responsible for the rekindling of Cornish mining. Tin is once again in demand, but it is Lithium (the metal so important for those EV car batteries) that could bring about the Cornish mining revolution. If they are right and there is Lithium to be mined in Cornwall then we may get all those ancient Poldark mine workings reopened.....yes, I know, it's a fictional drama....but Cornwall does have a huge number of mines.

Enough of that..... I've been most of the day in the garden, and dog walking. Fruits and vegetables picked and harvested included blackberries, raspberries (the last 3 of the season!!), pears, apples, beans, courgettes tomatoes, and (finally) the dreaded beetroots. Isn't it uncanny how the veggies I really don't like always manage to grow the best...and I just can't bring myself to like beetroot. The other "job" in the garden was to erect the new flagpole.....but I'll let Jill tell you all about it. I'll only say that, as so often, your friends use their many and varied skills and come and help out.

Dan's been boating today...trying to catch up on some cancelled trips....and Jack and Stephe have taken Lady J and gone to Carteret this evening. They're hoping to get a few days away, and with a friend's car available over there I'm sure they'll have a good time in La Belle France...can't say that I'm not a little jealous.

As for her ladyship....she's still in good spirits, but her cough isn't getting any better. I suspect (hope) that we will be back in hospital this week for some more draining works. I'm sure that there will be a link between her (still) extending stomach and her cough. The fluid pushing up on her lungs must be having some effect. Let's hope we can take some of that fluid away, and help to ease off some of those other symptoms. Despite having to still dress her legs 3 times daily, I think that her knees and calfs are ever so slowly improving, and becoming less swollen....with luck we can keep those improvements going. I'll hand over now and let her tell you herself.....as usual, I'm sure I've got something wrong!!! 




Very proud of our new flag pole... and our "St Martin" flag!! Thank you to our good friends MR/JR ...

 Cows, swallows and our flag !!

My girls hiding in the washing......

Steve and I enjoyed lunch at Wayside cafe in St Brelade... beautiful views ....

 Sorry guys, a little tired tonight now, all the excitement of flag pole erection, and walking around the garden! I've had a good weekend, and once again, count each day as a blessing.

 “When you count your blessings, count life twice.” 
― Matshona Dhliwayo

Friday 24th August 2018

I have to write the date, I can't believe we are at the end of August already, Steve said when he opened the blinds this morning, that the weather was feeling definitely autumnal.

That answer the question of our 'date' night, not once but two nights 'upstairs'!

That's enough excitement for this week I think... plus, although sleeping on the new Lilo mattress was a lot more comfortable than our mattress, on  the first night for no real reason I woke at 2:30am andcould not get back to sleep!

By 3:30am I was getting hungry, so, and this really has to be LOVE, Steve goes downstairs and makes me toast....

Fortunately last night I slept much better, a fair amount of random coughing, and awake a few times, but at least no toast making skills needed....

The district Nurse comes in every morning to 'dress' and tape the legs up, the compression bandage on the left leg does stem the lymph fluid, but still a day to day issue.

Had lovely visitors yesterday morning, which means I talk too much! As it takes me so long to get sorted with putting on the one pair of beach shoes ( tied with elastic band) that fit my fat swollen feet, oxygen tanks etc we had to leave for hospital.

Met a new oncology nurse , who was ( as they all are) lovely, and the worst part of having the stitches out? Getting the week old sticking plaster off the skin! My skin is so thin that it has caused loads of blood blisters, despite copious amounts of 'peel easy' spray put on first!

Had a good day today, and managed to get on the scooter for a short while this afternoon, much to the amusement of most of most of the family and road users in St Martin!



This was my beautifully made breakfast this morning, may not impress many people, but my husband's culinary skills with egg poaching/crushed avocado are first rate!

 Buzz lightyear impression? LS I'm ordering a basket for the front! Reckon I could do with a flag too? Or actually L plates!!

 Blue sky! My garden view from the road...

Happy helpers?

Steve's turn.....

Not much to add really...it's a shame the weather hasn't been a little brighter, but we got out this pm so we're happy (of sorts). Tomorrow I have a "big shop" to do at Waitrose apparently...I can't wait...I usually spend 10% of my time finding 90% of the "stuff on the list" and then the other half an hour trying to locate 2 items....both usually out of stock or mysteriously rebranded something else...or (worse still) discovering that the only place said item can be purchased is M&S!! First world problems....

This laptop is telling me it only has 2% battery left....so I'm going to push the post button now and hope it still has the energy to do what it should......a little like me at this time of day. Next time reader.. 

Day to Day Dealing with Disability, Disease and any other nasty things starting with D.

Jill said something today as we "strolled" along the sea front at First Tower. She said "all those people looking at me and thinking "I'm glad it's not me"......just like I would be thinking if I was in their shoes". There's no doubt that having to deal with disability has opened my eyes to how some of us must struggle. The very simplest of things, like walking (sorry, make that fast shuffling) that 75 yards with the breeze in your face, or sitting having a simple lunch looking out over St. Aubin's Bay, are some things we all take completely for granted....indeed, just getting out of the house and going for a drive can become a BIG event. Anyway....toilets....another subject that becomes important, especially if you "need to go". There aren't many disabled toilets....but at least one can get on the internet and look up where they are. It's the height of the seat that's the issue for some....if you can't bend your legs then getting up from a low seat can be pretty difficult, if not impossible if you've lost much of your muscle strength....

......and then there's disabled parking spaces. I've always been a little sceptical of disabled parking....all too often I've seen apparently able bodied people almost running away after parking in a disabled space....and I'm always wondering how easily doctors hand out "blue badges" .... and then there's those who use other people's blue badges for their own benefit. This week in the UK there was some data released about the percentage of disabled spaces being used by "non"disabled people.....not good. Anyway....we now look forward to finding a disabled spot everywhere we go. I accept that we could be using the wheelchair, but Jill can walk short distances (with her oxygen of course) and if we can get close enough to where ever we've decided to go to then that's really good. So far we've done okay....and today was one of those. We managed to find a space at the end of lay-by number 4, and we went to the Lookout Cafe for a bite of lunch. I think we can say that we were very impressed....service was cheery and good, food was quick and delicious....outlook was very pleasant....and no green weed on the beach at all...so that was Brucie bonus. I'll leave Jill to comment further in a minute.

We haven't managed to get out on the Reliant Robin yet...mainly because we've spent Monday at Hospice and Tuesday at the Hospital and Doctor....but it's sitting there in the shed ready to go at a moment's notice...maybe tomorrow? Certainly we agreed today that we could "give it a run" down on the flat between town and St. Aubin. Another goal will be to try to get out on the other Beach Ability wheelchairs at St. Brelade's and maybe even Les Brayes....if there are two of us helping then I think we could well try to walk the dogs (and Jill) at the same time....I know that would be something that would really cheer her up....not being able to walk dogs is something she's really missed.

Finally, no music opinions this evening....but I'll try to start a thread next time.

After a long morning in hospital yesterday and the afternoon at the doctors getting more medication and a weigh in (!). I was keen to get outside and do something a little more 'fun'. So a mini shuffle along the front, lunch and a trip to buy some more plants ticked all the boxes... luckily the weather held out too. 

Monday morning I had an appointment at hospice to see the lymph nurse. It was decided that in order to stem the lymph fluid I have a fairly heavy duty leg compression bandage. She very kindly gave me a massage to try and relieve some of the pressure I have in my legs and abdomen first, and then strapped me up, only left leg as its slightly worse than the right, and it would have been too much to do both legs after drainage.

I followed that up with a lovely relaxing Reiki treatment, before my friend LW kindly picked me up  (two hours later), and we stopped off at the zoo on the way for a bit of lunch. Good to have a 'normal' (ish) activity. Although even that amount of time out is tiring, so more resting at home. 

I had contacted the hospital on Monday, I wanted to basically touch base with the consultant, as its been over 10 days since I had the stomach drain, and I was aware that my abdomen is slowly filling up, and didn't want to end up on Friday evening at midnight coming into A and E with a bad stomach, and unable to eat/drink etc. 

They had booked me in for 10:30am, Tuesday,  and I spoke with a lovely new doctor I hadn't met before, he had read all notes, so I didnt have to go through all my 'history', and he said they'd talked about me at the Marsden that morning at the MDT meeting . They said, don't bother with doing bloods! Its just a check up, and if she needs anything doing later in week, they'd have to do it again anyway. 

They organised an ultrasound scan on my tummy for 12 noon and followed it with a chest xray. Needless to say both sets of 'nurses' knew me and greeted me an old friends, with the usual joviality and gentle teasing from both sides...

Humour gets me through tough times, even if it is sometimes a bit 'dark'. 

Again, I was most grateful that they look after me so well, I can't praise the teams enough for their compassion and care, its outstanding.

Time for lunch at the cafe with Steve and Sue (my gofer amongst other things!) and then onto the doctors.  Once again, very tired when arrived back home and missed out on "scooter' time! 

Twice now I have arrived back home this week and found out that "Mrs Mop" has been, beds made, washing done, ironing whisked away, floors washed, toilets cleaned(!!) She does like a gossip but she's cheap and does a good job ... :-) 

Looked at forecast tomorrow and don't think its conducive to much outside time, so that's yet more tidying jobs. I tried to sweep the utility room floor yesterday with a broom and without plugged into oxygen, well I managed three strokes, and you would have though I'd run a marathon! Couldn't bend down anyway to use brush and dustpan, I just don't realise how incapacitated I really am, until I try stuff.

My work surfaces and cutlery draws are VERY tidy however, they get special treatment at 3 am when I cant sleep, and its all one height! Sad or what?! 

Tonight though, will be different , instead of sleeping in the dinning room downstairs on my ripple Techincare bed, I have a 'date' night with my husband in OUR bed. Three months ago we bought a new mattress, and we do like a 'firm' mattress, which was all well and good, before I became poorly, now its rather uncomfortable! However we have purchased a sort of Lilo single mattress that is supposed to alleviate some pressure ( actually AB has bought it, so as its arrived today we thought we'd give it a go... ) 

I'm sure you three readers will hardly be able to contain yourselves until the next blog update to see how it went... "the date' or the "the mattress"??

A few photos from today... and I'll save the fat leg compression look until a later date....

Happy husband well fed after our lunch date....

 Our best "Cheesy" grins!

Just a short update, with maybe a few pictures this evening.

Saturday morning and my "Beach Ability" outing was a great success, Steve even managed to push my lardy lump along the soft sand for a true beach experience, and in fact as the weather wasn't brilliant, not many people out and out so didn't feel too self conscious.

It was so lovely to be able to spend some time on the beach albeit in a chair and not walking the dogs,  ( cue sad face ) but seeing friends ready with smiling faces, hot drinks and cakes, more than made up for it!!

Didn't get my feet in the sea... but of course made sure others went swimming!


And we are off....

 Hardy swimmers....?

 Picnic all sorted, hot drinks and homemade cakes!

Needless to say, after all that excitement that morning,  I rested in the afternoon, but did manage to pop in and have a quick cup of tea with two good friends much later.

This morning was a struggle, feeling a little 'fuller' around the tummy makes it harder to move around and the constantly leaking legs is tiresome. I think that I will have to contact the hospital this week and see if an ultrasound on the fluid has built up again, shame it's only been ten days since the drain, but it can't be helped.

A lovely friend had a 'spare' mobility scooter lying around her house ( like one does) and has kindly leant to me, although it's a three wheeler its roadworthy, and is portable, so I'm thrilled that I'll have a little more independence.

(A son has already tried it out and warned me not to corner too fast or I'll fall off, sounds like he's been test driving/trying to break it. )

Watching other people do jobs this morning. ie pressure washing the patio and cleaning out the freezer was my morning, and after yet more 'resting' ..I had a a little drive out to go M and S shopping with Bex!

We tried to get to my sister-in-laws Cake and Concert event at the Public Hall, but .......left it too late! Cake all eaten, and packing up begun! Still think they raised a good sum of money for their forthcoming trip to Prague in the Autumn.

Look up Holmchase Singers on FB if you need someone to sing at any future event, they are VERY good!!


A day without a friend is like a pot without a single drop of honey left inside.
-A. A. Milne

Ain't nothing like the real thing...

Okay, before Jill gets to write the medical update on the last couple of days, there are a couple of things I need to talk about.

First, I just wanted to announce that we are now selling tickets for the big event on Saturday morning....oh blimey, that's tomorrow (another week gone in flash). There has been so much comment about, and so many people announcing that they are "coming down for a look" at, the Beach Ability demonstration that we are having to warn the Grouville Honorary Police to come and organise the car park. Remember, 11:00 tomorrow, Saturday, Long Beach.

Secondly, female singers....yes, I said that I wouldn't mention them again (and I'm grateful for all the comments from our readers about my various choices....and whether I'm right or not), but, with the sad passing of Aretha Franklin I thought I should say just a couple fo words. There's no doubt she was a natural "natural"...but I was never really "into" Soul....preferring Motown to be honest. However, she was such an influence on so many people from all walks of the musical world. She will be sadly missed.

Motown, or Tamla Motown to be precise....what a record label it was! I've mentioned Diana Ross previously, but male artists included Smokie Robinson, Lionel Richie, Marvin Gaye, and the great Stevie Wonder. I'll write about SW another time (an absolutely unbelievable performer and songwriter), but for tonight I'll just mention my absolute favourite track by a Motown duo...Marvin Gaye and Tammy Terrell singing "Ain't Nothing Like The Real Thing". Covered more recently by Beyonce and Justin Timberlake, it's just sums up Motown for me. What a shame that TT was taken from us so early....did MG ever recover?

Okay, our reader seems to have got the impression that "the scooter" was a permanent fixture. It is with great relief that I can report that it has gone back....thank goodness for that. One could have made quite a bit of money by videoing our exploits out and about....and I was exhausted trying to keep up. It was always only a trial....24 hours....and we knew it was to be returned. However, such has been the success (if you ask Jill) of the scooter that we have been offered another one on a more permanent loan basis. This "new" one has only three wheels apparently....I wonder if it's the Reliant Robin of scooters? There's little more to report at this stage, but no doubt once it arrives there will be more to report. My excitement and anticipation know no bounds.....

Right...that's enough other unimportant things for tonight. Some highlights of the last couple of days include a successful port removal (and a dressing change this morning...where everything looked good) and the successful planting of those shrubs we purchased recently. Our two gardeners (recommended by SW of St. Brelade) are a real find....in a couple of hours they had transformed one large border of the front garden. They've been rebooked to come back in a fortnight for a repeat performance. That means my credit card taking another "beating" when we make a return visit to our newly found plant centre in St. Lawrence. Apparently, as well as a few more shrubs, we also need some "ground cover" plants. I always thought the best "ground cover" was concrete...no maintenance, no weeding and easy to clean!!! Right....here she is.


Not entirely sure how to follow on from this except to say, please don't turn up tomorrow morning, its bad enough feeling like a wally without having an audience !

It's been so lovely having Aunty Betty here... (she made me type that) , she always tackles any job I  give her with a beatific smile on her face and a spring in her step. Running errands, doing copious amounts of washing ( lymph legs show no sign of letting up leaking, hence lots of washing machine abuse) and it's REALLY not pleasant . 

There's nothing she cant do, gardening chores, vegetable picking, cleaning bathrooms etc, her  tea and coffee making skills are second to none, and occasionally she'll make me one too.  


Friends have been over to make sure we have been supplied with extra food, shopping and essential items, which as a collective family we are all very grateful. 


As Steve said the port removal went 'ok', although he wasn't actually the one that had it done! It was time to come out as without being too graphic the skin had started to 'meld' over the port as it made a bid for freedom and therefore was a little tricky to 'dig out'. Lots of local anaesthetic thank goodness.

Hospice kindly changed the dressings today and it seems to be healing ok, which is the main thing, I just have to keep it dry for a week/ten days. 

Typically certain plasters I have an allergy too, so have to be careful, as the gauze is not waterproof,  (don't think about splashing me tomorrow in that sea!)

Lastly to save anyones queries thought I'd run through the "physical" issues that I have on a day to day basis. Not for any other reason that an information reference. 

I have no hair, not bothered by this, bandanas I have told suit me, and I couldn't be dealing with the moulting. 

I have lost so much muscle in my arms, they are like sticks, and have very little strength, and because of the tumours that have blocked parts of  the thorax in my chest, I can't disperse the lymph fluid around and flush it out of my system. 

My stomach is enlarged with fluid too, and probably slowly becoming larger again, so I do realise at some point more drainage, but again, it's a catch 22 as I need the protein, and by draining it will only fill again. 

My legs are very swollen, the skin constantly is stretched and tight, so moisturising is essential, at least twice if not three times a day. I also need to 'cover them' with some sort of 'padding' this in itself has been an experiment of sorts. If I don't 'bandage' they fill my shoes, and floor, so it's very necessary. So if you'd like to visual this... we have discovered that babies night time nappies are extremely effective , they take the moisture from the legs but don't soak through my trousers. They also 'self fix'.... if not I use "old lady" large incontinence pads, strapped on by micropore. 

As you can appreciate the whole ensemble is very fetching....  lower calf 'fashion wear'...

Apparently many people 'suffer' with this problem, it's so awful that there is no standard 'solution'. 

Cover up, smile, move on.

My balance is not good, and everything I do, walking, sitting, etc, needs to be thought about, I get a little concerned sitting in ordinary chairs, as can't manage anything too low, I'd never stand up, so eating out etc can be a bit of a minefield. 

On top of which, I'm pretty much plugged into oxygen 24/7. I have it for sleeping and whilst in the house, shower, and car. I can go without for short periods, which gives me a break, and although I can have quite bad coughing spells, (too much talking, too long talking, too animated talking), often it's with no apparent reason. 

Medicines. I have two small doses of Methadone twice a day,( helps cough) and Oramorph ( again small dose) if I need it to help my breathing. 

Paracetamol as and when needed. I have just reduced my steroid from 4mg to 2 mg, they help with inflammation, but Its been suggested to see if I can 'do without' for a while. They can lift your mood as well, and I know they have helped.  


“No matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow.” 
― Maya Angelou

Humorous Blog Post.....???

There are few things that Jill and Stirling Moss have in common. They are both English. They are both married to wonderful people (well actually, I'm not sure if Stirling Moss does have a wife) They are both bald. They are both very well known in their own sporting circles. They both have driving licences....and that's about it. They are NOT both racing drivers....but Jill doesn't appear to know this last fact. The arrival of her mobility scooter seems to have affected her brain....and we've spent the day going up and down our lane visiting neighbours. Jack also "road tested" said scooter in the field...and Thomas is trying to work out if he can double the speed by adding a second battery.....but don't tell anyone.

As predicted, there was at least one close incident involving said scooter and a car. Jill was coming down the road at a spot near Rosel Manor where the visibility isn't great. It's generally known among "locals" that at this particular place one has to cross the road and go with the traffic, and not against which, as we all know (!!) is how you should travel. Jill, accompanied by two of our trusty nurses and the two dogs, hadn't made the crossing at this dangerous place....and a vehicle coming in the opposite direction, and with no visibility, nearly had a close shave. The driver of the car wasn't impressed, and much colourful language was used, including quite a short response from Jill. How do I know all this? I know because I was in the car! I'll say no more....other than we have had a discussion about road safety.

(They were driving too fast... and we were going to cross over, but we were chatting, and anyway... it's good to practice emergency stops...) .  ;-)

Jill has had a good day....and she has told anyone who cares to listen this evening. Yesterday wasn't great....but today has been fine. The new "freedom" that she has had from her scooter now has her planning all sorts of trips. Where could we go? Which tracks could the scooter negotiate? The scooter apparently has a range of 18 miles....so goodness knows where we might end up. The very nice people at occupational therapy have also been busy thinking about Jill, and suggesting other activities she might try. Certainly one that we are going to have ago at is Beach Ability....those wheelchairs on very big wheels that can go over soft sand. If you're thinking of going on the beach at Longbeach at 11:00 on Saturday morning you might want to change venue.....we will be there so watch out!

On health related issues there have been a couple of updates today. Jill's "reservation" to have her port removed has been changed. We now do blood tests tomorrow and the Port-a-Cath removal is happening early Thursday.

On bandana related issues we can report that Customs have released Jill's highly dangerous Chinese clothes purchases, so we now have at least two more colourful headgear to choose from.

That's enough of an update for today...so I'll sign off because Jill has some photographic evidence she needs to add before this post hits the interweb. Laterz reader.

Tuesday helpers.... taking a five minute respite from " cleaning duties" ... Invitation making instead!

LOVED IT.... 

And again this afternoon..... 

Such a good day... and of course AB arrives tomorrow....lots of new jobs in store for her!

Surprise surprise....

I'll get on to the reason for the blogpost title later.....but for now I've been asked by Lady J to write the evening update, so that tells you a little about the day we've had.

In no particular order....Jilly was (for some unknown reason) a little out of sorts today, well this morning anyway. Was it the tonic water in her gin last night? Was it last night's Chinese? Was it an overload of monosodium-glutamate? Was it the impending appointment to join the ranks of the "follicly challenged"? It was almost like the steroids had decided to have a day off, even though they had been taken as normal with the honey on toast first thing this morning. We were so off colour that we had to cancel a lunch reservation with another good friend who is also fighting her own battles with this flippin' disease. That was a big disappointment....we know that she's away tomorrow for radiotherapy at the Marsden, and we really wanted to meet up, but we'll do it when she gets back. Our thoughts and prayers go with her.

Other family members have also been challenged today. Dan has had a rough day at sea, coping with very big tides (lots and lots of water moving about), wind (the celestial sort), and an array of age groups ranging from 3 to 80....and came home to deposit a very large amount of very wet clothing on the Aga. Tom has a work placement student to "look after".....no more comment needed. Jack has had to put up with taking me to the recycling centre this morning, and this afternoon spear fishing with no fish throwing themselves on to his spear. I've walked 11km, taken 15,000+ steps and taken Jill out later this afternoon to do some "errands"....all I have to show is tired legs, a tired brain and a bee sting! (oh, and my car has started telling me it's needs a service....doesn't it realise that I'm supposed to make decisions about that sort of thing?) Bex is possibly the only one of us who's started the week well!

On the plus side....we have a time and date to have the port(acath) removed (Friday 10:30) so we won't need to worry about the infection risk there anymore. Despite it's irregular issues, it's been a godsend for us, and has saved so many injections and canulas . Another plus....Aunty Betty arrives on Wednesday....so the garden and greenhouse will get the attention that they've both been sadly lacking of late.

Other news includes the fact that I no longer have the shortest hair in the family. A hair stylist friend came around this evening and shaved Jill's head.....unfortunately, the new bandanas that have been ordered (from China) have been detained at Customs (they've obviously highly dangerous) ...hopefully they can be delivered tomorrow! Jill's already feeling the cold a little more, and wooly winter hats have been dug out to keep the chills at bay until she gets used to the change in thermal insulation from her new hairstyle.

Finally, the blog title. Our reader will be surprised to read what  am  about to type....but (once again) I'm going to add to the list of female singers that are "worth a listen". These two each have a particular single track that I could listen to all day. The first is Dusty Springfield, and the song is "The Look of Love". A Burt Bacharach composition (did the man ever write a bad song?) taken from the film Casino Royale...the original film, staring David Niven. It's such a simple track...no full orchestra behind...but brilliant in its simpleness.

The second female artiste is (wait for it) Cilla Black. That's certainly going to be a "surprise surprise"  for our reader. However, right at the start of her career she did some really powerful stuff....young, keen, raw, inexperienced, hungry, brave, unfazed and not frightened.....you can hear all those emotions in the track that she recorded entitled "Alfie". It's no coincidence that again it's a Bacharach composition...he actually played and conducted.....and the original recording at the Abbey Road studios is more than well worth a listen.....just type "Cilla Alfie Abbey Road Live" into Youtube.....brilliant music at its best....and in black and white as well.

Right....I promise no more female singers will be mentioned on this blog. Next time I'm moving on to male songwriters and/or male artists!

I'll finish this evening with a short trailer/taster about tomorrow's blog, and the dangers of being disabled...... Jill has ordered a electric mobility scooter for a trial tomorrow. Her idea is that she can "fly around" up and down our lane, visit all our neighbours and deliver some invitations. there's little more that I dare add at this time....other than I have warned the Honorary Police and asked them to be sympathetic if they get a call. No doubt there will be much to report this time tomorrow....that's if we haven't all been arrested!

   

Friends

For my Friends

For those who believed in me

when I no longer believed in myself.

For those who swept the darkness from my face with a smile.

For those who exchanged my burdens for their heartfelt joy

and never sought a better bargain.

For those whose love and laughter gave me wings

and a blue sky.

For those I cannot thank enough

in this lifetime or the next.

Just found this in a book and thought it was appropriate, and kind of summed up how I feel sometimes...

Also, whilst on the lap top as opposed to the iPad, I can post a few pictures...  

Had a good few days, managed to get out and about a bit, and today pleased to spend a short time seeing friends for lunch and then a quick potter in the 'vegetable/flower garden....

Also had a visit from some smaller people who live out west, who always brighten up your day.

As the forecast tomorrow is for much needed rain, I can see that it'll be 'inside' jobs most of the day.... although how I wish I could put wellies on and stomp off with the dogs... 

Never mind, don't forget "The Glad Game"!!! I shall find a different 'fun activity' to do tomorrow instead.. that has nothing to do with hospital visits!!

Friday 10th August...

Quick update .

Realising I have been awake since 2:45am this morning, not quite sure why considering I as so tired from my hospital shenanigans yesterday, that I could have slept for a week, I should have updated this blog with a brief update, but instead I potted around the kitchen, read some of my book and make endless 'jobs to do lists'!

Team work saw Steve and I leave the house at 8:30am yesterday morning, no mean feat as usually it's more like 9:30 before I'm 'sorted'. Chuffed as with my new 'disability' aids ie bath board and shower rail , I managed my own showering unaided . (small things). We now also have a disability parking badge so it made it much easier leaving the car closer to the hospital to 'unload' me.

Although I was booked into Rayner ward, I had a bed on Pipon, it is short stay minor ops I think, but it's a large ward, cooler , more space and only had two ladies in it, plus we had the bed by the window, that had real glass you could actually look out of! ( again, small things ).

Around 10am had bloods taken, and saw Dr KG, it was decided that if bloods were OK , then judging by the size of my stomach ( 6 month pregnancy bump size) they would drain it.

It was just a bit of a waiting game as Dr FN wanted to assist DR KG ( actually practice how to do a drain?!) so it was a timings issue.

With my trusty man servant by my side we eventually headed down to a treatment room at 1pm, and after looking at an ultra sound scan decided whereabouts to put the drain in.

I mostly keep my eyes shut, but looked at Steve to see him watching with fascination at the incredibly long plastic needle 'thingy' that they insert first of all, and then 'pull a cord' and the drain curls up inside so it can't fall back out...

Fortunately anaesthetic beforehand ... Drain in, beautifully done by the two amazing consultants of course!

Bag attached and filled within seconds literally ..... ( oh and if there are any medical suppliers reading this for heavens sake provide larger jugs for the size of the drain bags!!, it's crazy. 500g jugs and 750g bags!!

Two and a half jugs filled before I had a chance to get back to the ward.
Within half an hour I had 'lost' nearly three litres of lymph fluid, and was feeling decidedly light headed and a more than a little woozy.

Partly I think as it had been a long time since I'd eaten, but losing so much so quickly can be a trauma too.
Dr KG had decided 5 litres was enough, I'm sure there was more, but safe limit.

I had to have a nurse on ' bag watch' as the rate is was pouring out was still fast, apparently the bags can burst quite easily, not pleasant , for them or me.

Five litres gone, that's 5 Kg extra I've been lugging around, no wonder movement etc coupled with tree trunk legs has been so difficult.

3:30pm, time for the drain out, and I was really dreading this as the pain last time although brief was intense, but I think the anaesthetic was still working and it wasn't too bad .
By 4 pm we could leave the hospital , managing to avoid the end of the battle of flowers mass exodus fortunately .

By the time I arrived home, despite not having done much I was tired, but far too late to sleep, so yet more resting.

Thank you to AH and SP for their ' special deliveries' to Mrs Mop for sneaking around sorting flowers/ washing etc and my two ' dog walkers ' ...

And that's just yesterday's "helpers"... #tookind






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Hair today...gone tomorrow, and other medical mysteries.

Due to popular demand (well okay, actually one single request) this is Steve here again, blogging from a "new" venue. New, as in we haven't been in this precise location before, but not so new as in "we're back in hospital". Pipon Ward is situated in-between Rayner Ward and EAU, so we've walked/shuffled/trolleyed/wheelchaired (??) past it more times than we care to remember, but it is considerably more spacious, Jill has a bed next to a window (that opens and has clear glass!) and a proper cup of hot black coffee. Bloods have been successfully taken...and all before 09:30. How good are we? It seems recently that nothing seems to be achieved before at least 10....let's just say we spent much time getting prepared last night, and got up really early this morning.

The reason for the blog title is this.....chemo may no longer be on the weekly menu, but that doesn't mean that the side effects of the previous treatments have stopped. As regards Jill's hair, it's making a determined effort to part company with her head....and seemingly more so of late. I guess we'd hoped it might have "hung on in there" (so to speak) but if the last few days are anything to go by she will be challenging me for the title of "baldest Luce family member" in the next couple of weeks. Weirdly, I had a Facebook reminder this morning of a photo of Jill swimming at the Ecrehous 6 years ago today....she was wearing a bandana....yes, honestly, it really is that long that we've been battling this bloody disease.

The other part of the blog title is "medical mysteries".... and, the only reason I added it is that, it transpires that creating the amount of lymph fluid that Jill has been doing recently is very rare apparently. Just another medical quirk that is Mrs. B. J. Luce. It's not surprising that we see so many medical specialists....Jill seems to be a "test case supremo"....there's always something in her diagnosis that someone has never seen before!

As I type the rain is falling steadily outside. It's lovely to have a "fresher feel" to the air, but what a day to start the very much needed consistent precipitation! Those poor Battle of Flowers workers from all corners of the Island have spent the past months getting ready for today....it's pretty unlucky. I know that things are set to improve greatly this afternoon, but moving everything down to the park is a monumental task, and this weather isn't the best start. As with so many other Islanders, I've been there, done that, and got the T shirt. It's not quite the same when you find yourself at Millbrook, tired, wet and cold with work still to do of your float following the big move from wherever you were building. Anyway....from what I've seen on the Internet, there are some top top floats again this year....and I'm sure everyone will have a great time once the sun comes out.

Medically, this week has been okay.....actually I think things have improved slightly as the days have gone by. Yesterday Jill and I made an exciting visit to M&S at St. Brelade for clothing and medical supplies. I was ecstatic as our reader might expect. We managed to visit every floor (there are 3) and "browse" around to make sure there wasn't something we hadn't looked at. When I asked, I was informed that "browsing" is an absolute necessity. What's all that about? Surely you just make a list, find the things on the list, pay for them and come home? Apparently not!

I knew it would happen, but no sooner had I listed a few of my favourite female singers I would remember some others I should also have added. One in particular, Diana Krall....the Canadian jazz singer/pianist. There's no doubt that her blonde hair and sultry singing voice have an effect (!!), but it's her jazz piano playing that really gets to me. As a child I can remember seeing Oscar Peterson at the Opera House....yes, really. It had quite an effect in me, and even since then I've been an jazz enthusiast....piano especially. (As an aside, and he isn't a jazz player, but did you know that Diana Krall is married to Elvis Costello?.... Elvis Costello and the Attractions were another live act that I saw at Fort Regent....we had a bit of a purple spell back in "the day"....I also remember Nick Lowe and Rockpile.....Nick is another stalwart of the British pop scene....how come we don't see as many of them any more?) Finally in today's musical update I better mention yet another artist I've seen live in Jersey, another top jazz pianist, and another true Brit.....Jamie Cullum. Not only is he a great jazz musician, but he also has a really successful weekly show on Radio 2 showcasing jazz, hip hop and blues.....well worth a listen, but, If you get a chance to see him live then don't miss it.....

The rain has eased off outside now....our consultant has been....bloods have been taken....and (as soon as the results come back) we expect to "get draining". We've brought an overnight bag, but we're really hoping we won't need it. Certainly the intention of everyone in here is to "get us out" asap.....and I can't say I blame them. As I said previously, things haven't been too bad this week.....I'm not sure that the stomach pressure hasn't continued to build at the same rate recently....but, as Jill says, we need to probably do something today otherwise we will almost certainly be back in our "it's late Friday night, let's go to A&E for a visit" mode tomorrow. Too risky....

I think I'll leave it there for now.....if things start to get drawn out later today then I may well blog again, if only to relieve the boredom! However, I'm staying positive.....with luck we will be heading home well before this evening, the sun will be out, the traffic light and un-congested, and St. Martin will have won the Prix d'Honneur. Okay, so I'll settle for two out of four.....




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Monday Monday

Does our reader remember the Mamas and the Papas? I know they were "around" some time ago now...but Mama Cass and Michelle Philips were both great singers...of their time of course....and no match for the great Karen Carpenter.......or some of my other favourite female singers....Barbara Streisand, Diana Ross, Carole King, Joss Stone, Sinead O'Connor, Agnetha Faltskog (doesn't everybody love ABBA?). Anyway, Monday Monday was one of the better Mamas and Papas tracks...but I think California Dreamin would probably be the best?

We've had, what I think can be described as, some good times recently....but yes, those "good times" do need to be taken in context. We went paddling at Le Hurel Slip yesterday (that's just a little north of Seymour Slip for those of you without great knowledge of Grouville slipways). The water was genuinely warm....the breeze was hot....the sun was baking....and we spent a good hour on the slip just enjoying everything....they were good times. Of course, it was pretty difficult passing by the (very) many people at St. Catherine's, Anne Port and Longbeach.....and how we wished we could have been sitting on the beach and running in and out of the water and swimming...and it was even more difficult passing Bel Val on the way home to see so many of friends and family there....doing all the Summer Sunday afternoon things that we were, until very recently, so used to doing ourselves.....BUT we had a good time. Small things like just paddling in the sea up to your knees have become really important, and real pick-me-ups for Jilly.

There's no doubt that since the various "episodes" with the lungs (drains and talc et al) things are generally much better. Much less coughing.....and No visits to hospital for nearly a whole week...and we've got into some sort of daily routine....(well, that's probably stretching it a little).....but our morning timetable especially is more settled. We've found time to make some visits....mostly involving buying things....plants especially. We've discovered a new plant nursery in the depths of St. Lawrence. They don't sell furniture....or cards....or pet food....or water features....or have a cafe....they actually just sell plants....which is a welcome change!! However, after buying the plants, we have been advised (by Sally, our learned family horticulturalist) that we need to do a lot of work in our borders before planting....and there was me thinking that Sally was going to have all these plants firmly established before she went off back home. I've settled for her doing the rounds of daily watering and vegetable/fruit picking.

Jill's stomach is slowly becoming more swollen again. It's not really a surprise and we knew it would happen. Today we sent a message to hospital, and now have an appointment to see KG and others on Thursday. My hope will be that we put in a drain, take off as much fluid as we safely can, remove the drain and come home. Let's just hope that we don't get into another prolonged period of draining...with the associated pain and discomfort. However, we realise that getting rid of some of this fluid is an absolute necessity, and the relatively short period of discomfort is something to be tolerated....unfortunately....but for the greater good.

Papa (now that his European visitors have left) is back in a daily "helpline" routine. We seem to be able to call him or text him at all hours with "requests". No errand seems to be beyond him....pharmacy visits to pick up (yet) more drugs....vet visits to pick up yet more dog/cat food (how do such relatively small animals eat so much food??!!)....visits to B&Q for any manner of "bits and bobs".....even food shopping from his beloved Waitrose at Rue des Pres. His
morning/afternoon/evening visits cheer us all up. We were even more cheered up (well, amused actually) when Jill sent him out the other day to "water the greenhouse" and pick the tomatoes. At this point I need to tell our reader that Papa is colourblind....so he can't really tell the difference between his greens and his reds. When it come to picking ripe tomatoes this can be a bit of an issue.....but we certainly ended up with a bowl full of tomatoes (of all and various states of ripeness!) We forgive him.... his endless help, patience and cheerfulness is an inspiration to us all.

Things that are happening tomorrow include Sally going home (more tears....again), and the weather "going off". It seems like we may have some of the wet stuff falling from the skies....unheard of! No doubt that, despite moaning about how hot it's been, we will surely be wishing for a return to the weather of the last fortnight by the time we get to Wednesday. I'm going to hand over to her who must be obeyed now to add a few pearls of wisdom....more soon reader.

Sally and I had an appointment at Hospice today, seeing the lovely 'lymph' lady... ( let's call her that, what a title!), and then the 'gym' lady, neither a very good description of either of them, both lovely ladies... but I'm pretty tired tonight and the brain cells have deserted me.

Having this 'Chyle' fluid ( its a milky bodily fluid consisting of lymph and emulsified free fatty acids, yes, as disgusting as it sounds), is in fact highly unusual. Well, there's a surprise.

It's really about trying to keep me comfortable, able to eat and function on a daily basis, as Steve said earlier, it's becoming an issue. As my thorax/chest is blocked by the tumours it's stopping the flow of the Chyle around those cavities, hence the pooling in the stomach and legs.

They were all extremely helpful, and the lovely new  nurse I met, ( I may even get a Jacuzzi bath on Friday, if I don't get a drain....), offering support and advice. The best way really to help keep me from getting any infection from the leaky legs, really not easy.

The most distressing part of the afternoon was the trip to the 'disabled' toilet, just before we left, not that there was an issue with the actual toilet of course, it was the full length mirror that I saw myself in.

At the top a balding patchy head of hair, wizened arms, no chest, six months plus swollen abdomen in my normal size 12 t-shirt, huge misshapen hips and to complete the picture a couple of massive thighs encased in bright green culottes, ending with the calves encased in large white bandages ( or I'm sure they used female personal care items instead), and fat feet.

I felt like I could have been played a  part on a Star Wars film where all these 'freaky' creatures sat around in a bar when Harrison Ford ( LOVE HIM) walks in with Chewy... I'd have slotted right in.



The Mos Eisley Cantina (sometimes called Chalmun's Cantina or "the Star Wars Cantina") is a fictional public bar (cantina)^[1] in the Star Wars universe. It is located in the spaceport of Mos Eisley on the planet Tatooine. It is the haunt of freight pilots and other dangerous characters of various alien races and contains booths, a bar counter, and some free-standing tables, and sometimes a band of musicians named Figrin D'an and the Modal Nodes

:-)
















 

Saturday 4th August

My big sister arrives today, actually she's really not very big, the shortest of all my siblings, and it has to be said, older than me....

Despite living "UP NORTH" someone has too... she likes to come down and enjoy the beauty that Jersey has to offer, and of course our incredible hospitality.

Like all our family members, its always a bit of a "bus man's" holiday, and it makes us all laugh when friends say to us "Have a lovely holiday", when really whenever we arrive at whichever destination there's invariably  a long list of jobs lined up!

These are nearly always dependent on the capability of the person staying, for instance, Betty is very good at sewing and mending, and loves ironing (!) She makes a pretty good macaroons too. Weeding the garden, picking fruit and providing she's armed with rubber gloves will tackle the cleaning, yes even on 'holiday'. Don't worry she has 'time off' to play tennis, swim in the sea and do the crossword occasionally, when she's not beating the boys at Crib, or Steve at Canasta. Now she's taken up playing Bridge as well!

Sally's talents far outreach mine ( in fact I'm not sure I have any).. which of course makes her very useful to have around for a few days. My brothers meanwhile come with their own set of rules, but I was never a very good listener.

The trouble with me spending so much time sitting or lying around the house, (not that I don't appreciate being at home for one minute) is that everywhere I look there's always things to do, and it's frustrating!

I know that I sound like an old nag half the time, requesting friends/family to "do this, do that' pleasssee, and I try to be a mobile as I can. I do have a portable cylinder I can wear like a backpack  that means I have more access to different areas, but they are expensive to run and last about 6 hours each, so much so that the "Oxygen Team" brought me a Dolly Trolly yesterday. It's a convector like the larger ones I have so means it takes in air purifies it and gives me neat oxygen. It's not exactly 'portable' but a good piece of equipment to have and I am grateful.

Yesterday morning I managed to get out on the swing seat and enjoyed sitting in the garden with a friend, found myself burbling nonsense, blamed the morphine. She was very understanding.

I have been attempting to sort out more 'paperwork', nothing hugely exciting, but quite cathartic in a way to have general 'clear outs', it does make you wonder why you end up keeping so much stuff, or perhaps that's just me. I used to try and wait for a rainy day to do those jobs but.......

A quick lunch followed, I'm afraid my appetite is not great, I'm still trying to get as much protein in as I can, this does involve high protein drinks as well as food, but the ongoing lymph issues are increasing, certainly back in my stomach.

There's nothing I can do about that but  hope that this weekend is not spent back in hospital with a another drain in....I'd like to have a full weekend at home for once, as would Steve.

Consequently It's very hard to plan anything too far in advance, I never really know how the day will progress, and much as my body thermostat doesn't work properly I also miss the signs of how quickly I tire.

Steve and I spent a lovely afternoon seeing our good friends (second daughter?) and "grandchildren" out west, only for a few hours, which was so lovely... but upon arriving back home, when in theory I should have rested. I pottered around the kitchen for an hour or so, and then ended up by 7pm, totally shattered, and asleep downstairs for the whole evening. Waking up at 9:30pm to chat to some of the family, before going back to sleep, at least until 4:30am.... when I thought about starting this blog post.

So here we are at 6:30 am and unsurprisingly no sign of anyone waking up yet, so I shall add a few photos, and wish you all a very good weekend. :-)

Piglet: “How do you spell ‘love’?”
Pooh: “You don’t spell it…you feel it.” —Winnie-the-Pooh

Thursday? August 2nd 2018....

I have 'lost' two months... June and July have passed me by....mostly in a blur of hospital visits, drug taking and various treatment plans, but.... and it's a big but... ( in more ways than one). All the medical intervention was necessary and I'm still here.

Able to be part of and enjoy the 'wedding' was a real bonus, and 'celebrate' my birthday (admittedly not spent in the the best environment) but the mountain of cards, gifts and presents more than made up for it afterwards.

Here I have to say a big apology to all those folks I haven't been able to thank properly, everything was a bit of a muddle but I do appreciate the many gifts, and now up to 'fifty' cards...#THANK YOU!

As you can already tell by the fact I have started the blog, today has been a good day.

Friends visiting, good times. One from far away... but always close to me.

An early call from the Occupational Therapist, apparently I was on their radar from one of my many hospital visits, who then duly rocked up half and hour later.

A very nice young man.... who was extremely helpful and has already contacted me with dates in next week for 'equipment', handles, rail fittings, anything which will aid my mobility around the house, and even garden access.

I did say I am not on my own very often, but I do still want some independence, however I have to be careful, I'd never get up if I fell over for instance ( I can't dress myself unaided or bathe without help).

I will get one of those nice 'alarms' you wear around your neck that's linked primarily to the ambulance and then to various 'key holders'. I wonder if it works two ways and I could give 'job' lists out to the family members? Maybe not..

Yes, ok, I have had morphine.... ( That's me, not Steve, although he is smiling broadly)....

 Tea at cafe fire fly in the zoo grounds . Wednesday

An afternoon spent doing 'fun' activities.... ok, so maybe not the 'Boots' shopping, although it was entertaining for the other customers!!