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