All around the world....part 1

I know I said I wouldn't blog about female singers again....and I haven't started on the blokes yet....but today's blog title is a Lisa Stansfield song title. She had a great voice....why don't we hear more about her? Anyway, I was prompted to think about this song when I looked at the blog stats this morning. Yes, it's just after 10....and Sally, Dan and I have been here for while...more of that later.

Before I get to the stats, can I just apologise for the "very flat" blog last night. It wasn't well written, and if it looked like it was put together by someone who was "not quite on the ball" then that was about right. I'm determined to do better today, hence this early start.

Our reader may be interested to know that they are now one of over 500 who are currently downloading/opening the daily blog posts. According to the readout those receiving the blog really are "all around the world". As well as those here on our little rock there are others in the UK (obviously), the US, France, Greece, Ireland, Malaysia, Spain and even Guernsey....then there's a big number of people from "unknown regions"....what's all that about? I thought we'd discovered all the four corners of the globe. How can there still be "unknown regions"?...and if they're "unknown" then how do we know about them? Let's no go there....if we start on known unknowns and unknown unknowns we will certainly be here all day. I know that some of these statistics will be generated by people on holiday, and that the "unknown regions" will certainly include Oz (because we know people there who read the blog every day)....and if you're reading this and your "country of residence" hasn't been mentioned then please don't get offended...we're grateful for everyone who reads this blog, where ever they are.


At the moment we are a room full of family (us seven Luces plus sister Sal)....the last couple of hours has been a little challenging....tough. Once again Jill woke up in a panic....and no strength to get to the bathroom. No worries, catheter sorted (yes, I'm afraid we have had to resort to that as well), jimjams changed, drugs administered....I suppose one could describe Jill as "comfortable". She's also terribly weak now, and pretty much confined to bed. With all the boys here we can keep her in her favourite position, but I know the nurses don't really like the way the Luces do "assistance". Let's just say that the "Luce Boys Method" and the "British Medical Association handbook" do NOT have the same instructions for how you move a patient in bed. I'll leave it there. I'm not sure which option is best, but I know which is quickest.


Talking of speed.....the bed that Jill is in/on has all the "bells and whistles". There's plenty of controls for every required angle, as well as a "ripple effect" machine that inflates and deflates the many separate parts of the mattress in order to keep the bed sores away. There is, in addition, two small cords hanging down under the bed with rings on the end. These are emergency cords, a little like a rip cords on a parachute, and the cords are there in case the patient needs immediate CPR (that's Cardiac Pulmonary Resuscitation)...or heart compressions to people like you and me. One cord deflates the air mattress very quickly and the other cord flattens the bed completely and drops it to it's lowest setting. If you need things to go flat, accessible and low very quickly then pull the cords. Our reader will know where this is going.....the boys are desperate to see how quickly the bed would react if those cords were pulled. I've suggested we might wait until Jill isn't in it. Jill's muscles may be weak now, but her heart is still strong....in all ways.


One of the (many) admissions (from the children) that has come out while we sit together talking and thinking back over the years was one about the daily routine of returning home from school. Often Jill would shop before picking the kids up, and so the car was regularly full of children and food.  Kids being kids, they would always be arguing. Jill would get annoyed and threaten to make them 'walk home from the end of the road" if they didn't stop. It turns out they they used to argue deliberately in the knowledge that they would be turfed out 300 yards before they got to the farm. Why? The answer is quite simple....apparently they all hated unloading the shopping so much that, if they walked the last 10 minutes home, everything would done before they got back! Ingenuity at it's best.


One of instructions on Jill's last emailed list was to "start sorting the house out". In her usual practical way she told us to start returning the various special "bits and pieces" that we've accumulated over the last few months. The special medical bed we had hired was being picked up this morning, and I've contacted Environmental Health about all the "disability aids" they brought around. We've collected all the grabbers and pullers and assisters and boards and steps and extenders and risers from around the house and got them all together. Slowly the house will start to return to normal....but what's normal? Normal for us is a home with Jilly at the heart of it. It wouldn't be our choice to start this clearing job now...it wouldn't be my choice to do it at all.....every little thing we do is another small admission that Jill isn't coming back home. 

Those last five words took some time to type. It's now 20 minutes later and I've taken some air and had some time on my own....my first "meltdown moment". I'm back now and a little more composed. Isn't it my job to stay big and strong and keep it all together?


We took the boat out of the water yesterday. Jack wisely suggested that it might be a good idea to get Lady J back home. The weather, while still looking relatively settled for the next week or so, will definitely be on the change soon. The air feels cooler and fresher in the mornings...and one of these days we will surely see some wind and rain to properly herald the start of autumn. We also know that the next few days are going to be tough....and not having the boat swinging around on a mooring at St. Catherines was a good suggestion. The whole boat retrieval thing went well...it was the first time the boat had been on the trailer...and the journey back up the hill and through the lanes/roads home went much smoother than I thought it might. Now that we've done that it's one less thing to worry about.


The other reason for the title of this post was that, only the other day, Jilly and I were talking about the destinations we've visited since she was diagnosed back at the start of 2012. We've been "all round the world" and, while there will always be places that we would have wished to get to, we managed some really memorable holidays. Oz, South Africa, Caribbean, Hong Kong, States, Europe....Jilly and I have often spoken about those good times in recent weeks.


I remember like it was yesterday the meeting we had with the consultant who gave us Jill's original diagnosis of cancer....the day that we found out the first time. When we were told Jill had cancer she jumped up, immediately in a panic, pacing the tiny consulting room, and her immediate reaction was that she wouldn't see her grandchildren. She automatically assumed (as so many do as a first reaction) that it would be all over in months if not weeks. She was convinced that we needed to do everything at 500 miles an hour (as if she didn't move fast enough anyway)....and we needed yet another list, this time a bucket list. It was all I could do to get her to make some sense of it all. Of course it wasn't going to be "game over", we were going to beat his thing, we were going to take our time because we were going to have lots of time. We didn't need to rush into anything, we just needed the op and the chemo and then we would move on.

How many times have I had to persuade her that there was a goal to aim for? How many times did we "plan it all out ahead"?...how many times did we convince each other that it was going to be okay? In the end we will have to settle for the happy (and it has been the most gloriously happy) medium. Somewhere between the summer of 2012 and "happy ever after" is where we've ended up. We didn't quite do the whole bucket list....we didn't quite get "all around the world"....we didn't quite get all those grandchildren (but the 4 little herberts from St. Ouen have done for us, if we could be allowed to assume such a thing). We've had good times. 


It's now after four in the afternoon and the day (as ever) is passing me by. The two Ministers (don't panic....religious Ministers) who are going to take Jill's church service came in late this morning. Helen and Nico have been involved for some time, and Jill has been clear about what she wants. Hymns, psalms, readings, music...she's had a view about everything. Jilly was just about with us enough to give the thumbs up to the last few decisions that needed to be made. Jill has been convinced all along that there won't be many at her service....how wrong she is going to be! The boys (who even as I type are using the Hospice wifi system to play some sort of online game with people from "all around the world") have been joking about seeing if they could hack into the big screen at Chapel during the service. Goodness knows what we would end up singing and watching. 

This afternoon we've concentrated on each of us having some one to one time...with a steady flow of  Luces at her bedside. There's not been much discussion but she knows we're here....and occasionally we've had a look or gesture that shows that she still hasn't lost her sense of humour.....although we got close when a nurse came in just now with a VERY big syringe of medicine....one of those drugs we changed to a liquid format so it's easier to swallow. With only one in room with Jill at a time, we've rather monopolised the day room up here since before lunch.....I know they say "treat Hospice as your home" and "we don't mind how many of you come", but I think (in the usual way) the Luces have broken the mould.

Since lunch we have also had a visit from the doctors....and again some drugs have been added and changed. We've now got a new way to put slow release drugs just under the skin....and there's some sleeping medicine and also coughing medicine that's being administered like that now. Jill's had her leg dressings changed and the complementary therapy lady has popped in to do some relaxing foot and scalp massage. All is well......

I'm going to post this now, otherwise people are going to have to take half a day off work to stop and read it. It's my intention to post "part 2" later this evening. I've no intention of going home tonight, so our reader can expect some real ramblings from someone who's not inclined to watch (middle of the) night time television. So if you're going to be reading Part 2 later, then my apologies up front.