What if the Hokey Cokey really is what it's all about?

There seems to have been some positive response to Jill and I sharing the composition of this blog....so I'll start off this evening and see how we go. I had fully intended to get typing last night but, as usual, we got delayed. Despite some interesting programmes on TV (one on the life and times of Isambard Kingdom Brunel and all the amazing bridges and boats he built....and another programme in Spanish with English subtitles about The Plague) we still managed to find ourselves watching Tom Cruise in a Mission Impossible rerun. As usual the whole time was spent trying to make Mr. C look about 9 inches taller than he really is...so nothing changes there. Jill and I both agreed that he isn't really very well cast in the new Jack Reacher films.....and anyone who has read as many of those JR books as we have will know that Reacher is 6ft. 5in. plus....significantly taller that the said Mr. Cruise! Anyway....I ended up going to bed before the film finished...so this paragraph isn't going any further.

We had a average night...we've now got into some sort of routine with drugs at night. We seem to be taking the Lorazepam every night before sleep, it just helps.....and hopefully Jill sleeps through until 6ish. It's the first couple of hours in the morning that are challenging at the mo. This morning, for example, we struggled. Despite taking Methadone, Erythramycin, Pantoprazole, Apixaban, Probiotics, Turmeric and Morphine Sulphate Tablets, Jill didn't seem to be able to catch her breath properly.....we were at a bit of a loss as to where to go (so to speak). However, at 11:00 I gave her a little more Oral Morphine, and that really seems to help. She had a really good hour and a half over lunchtime which coincided very nicely with two friends popping in....one who's had her own challenges with cancer, and another who was so helpful when she worked at Macmillan. After they left we planned a trip out in the car....or rather, Jill planned a trip. We set off west...with dogs, wheelchair, two portable oxygen sets, and Jill's plan. I soon accidentally on purpose started changing things....and we ended up at the Hide Out at La Pulente for coffee and green tea, followed by a sand dunes walk for the dogs...while Jill sat in the car and chatted to SW (who appeared out of thin air to see Jill). Turns out Jill had called her as soon as I'd set off with the hounds.....obviously my company is starting to be some a little tiresome

That, as we all know is not true, we had a "business' meeting..... actually, I  did a bit of 'self pity' sad face, and she sorted me out, plus we had to discuss among other things, head shaving and more importantly lots more incredible off line donations for Jersey Cancer Relief.... the 'men' at La Moye golf course had a Competition  today and so as Sue happened to be there (!) she some how managed to  collect yet more cash, people are so generous, it's incredibly humbling. 

We (well, I) popped into M&S on the way home, and I experienced yet again the wonders of supermarket shopping. I'm always wary of St. Peter's shops for political reasons that I won't go into....and today was classic. I only had four items and found myself at the checkout behind a lady with a basket full. Only one checkout working...okay, I'll wait....I'm a patient sort (!!). A queue builds up behind me...the sole checkout girl rings for a second person to come and work another checkout....we're in business....except...the 4 people behind me all run off to the other checkout that's now working ....despite me being there well before them they don't seem to want to offer me the place. Okay, I'll wait...I'm a patient sort (!!)....the woman in front of me comes to pay, great, we're in business...only her card doesn't work....she swipes and swipes and swipes...I was worried she would melt the machine, or her card, or both. Finally, she gives her card to the cashier ,who then has to input ALL the 392 numbers by hand!....and then get a signature. Just as well I'm a patient sort....I would have been quicker to walk to M&S in St. John.

Tomorrow is the big haircut at Les Ormes. I have to say that I'm pretty embarrassed that Jilly and Sue have managed to raise over £5,600.... smashed that total already... Anyway, I'm sure that by 11:00 tomorrow morning there will be even more money in the pot for Jersey Cancer Relief....and I'm sure that Jill will add more before this blog gets posted.

There's been more talk today about spending some (more) time at Hospice...and mainly from Jill. I think she wants to see if they can find a way to get the breathing better under control ....maybe another drug....maybe more routine administration? I'm fairly sure that we will end up there tomorrow night. Nothing decided yet, but I can see it coming. Jill's keener than me....but if that's what she wants then that's what she gets. The advantage is that she can come and go as she wants (so they say...although I can't think they would want us to use their rooms like a hotel) but Jill seems sure she could "pop in and out" as she wanted. I suspect that once we're there it will become increasingly more difficult to leave....and I think that's where I get my reticence from...I'm a bit of a control freak, I'm (usually) confident in my ability, and don't want to have to admit that others can do better. Despite our very best efforts at home, I eventually will have to concede that we can't do everything. That's tough....but hopefully we can still find ways of keeping Jilly more comfortable, where ever she is.

Jill's also increasingly struggling with getting up from sitting, be that bed, chair, loo, car, etc....and that's another issue. I'm sure I can adjust the toilet seats further (we have some raised versions from Occupational Therapy) and maybe we can do something about the bed.....but adjusting the height of the car will be tricky. Maybe I just need to go out a find a higher car!! If Jill let me help her it would be easier....but we know what she's like....and she knows that if she doesn't use what leg muscles she has left they will disappear even faster. There's no doubt that the increased steroids are having an effect...they may well "perk you up" but they also increase muscle loss. Just another balancing act that we need to do!

I'm going to sign off now. Jill will no doubt update everyone on the Breca Run that we managed to get to yesterday (not taking part obviously!!), and I'm sure she will also have to upload lots of gooey photos of dogs. Laterz reader.

Firstly, without wanting to embarrass the husband, he has been truly amazing, and no words could possibly begin to do justice to his unwavering care, support, help, sense of humour, plus many other 'tasks' that is not only way out of his comfort zone, but many others would either point blank refuse or struggle with, he really does look out for me in more ways then one... Our marriage vows have certainly been abused.

Secondly, I'm not sure how I can ever get to thank you all for the truly beautiful 'blog' comments that I get after these posts. They make me smile/cry simultaneously, and are comforting ( even though there are many, many others out there who are far more 'worthy' and in far worse places than myself). 

I originally started this whole idea of putting stuff online as a way of easy communicating mostly with the UK family, so they were up to date with my treatment plan, operations, chemo etc, but quickly found that it was a really cathartic release for me to express how I REALLY was feeling.  

Whilst I realise everything online can be read by anyone, I still try to be as honest and truthful ( ok, so I do exaggerate a bit), it has also been an enormous help to me, especially in processing  new information. 

This of course, is just my way, and I do appreciate that it's not for everyone, and some folk prefer to be very private. 

I am stopping now, it's getting late and time for me to tackle the 'ascent of the stairs'....

www.jerseycancerrelief.org

Good luck tomorrow Sue..... maybe we will try the hat/hair  Captain Jack Sparrow look?


Lastly, for heavens sake, who has two sets of neighbours that say they are going to bring your family a full Roast Beef dinner over, cooked and ready to eat,  only to find that it's actually TWO roast meats, potatoes, loads of veg, gravy, and TWO massive puddings??? ( custard, cream, obviously!)

Not content with that , I get home made tomato soup for tomorrow.... speechless....