Monday, 11 December 2017

Grumpy Neil getting patched up.

I had another grim day - this is getting boring. Lots of pain and ne pains too. On the other hand, it is possible it may be my fault again, which probably doesn't come as any surprise.

I was due to change my morphine patch at 0630 this morning, which is when I put it on last week. You are supposed to do it at the same time every week. Well, I put it off for a while (four hours) because the timing didn't suit me and I want to move it round gradually to the evening.

Anyway it was a really painful day and that may be due to hanging back four hours or it may just be that the slow release patches are very inefficient.

When I did get it on I could feel the effect almost immediately - a buzzing feeling as well as a strange feeling in my mouth and tongue. But the funny thing is that the patches take about a couple of days to get in their stride, which means that these feelings may well be purely psychological rather than genuine. Drugs are a very funny thing.

Meanwhile, Christmas just hasn't got sorted. We've (Robyn) has done the cards and they've gone out but no shopping's been done, no presents....nothing.

It's also a bit bleak at the moment - the sow has melted but it's bitterly cold and miserable. I'm trapped in my chair, moaning and grumpy and dreaming of doing exotic things that are never going to happen.

I'll get over it.

Neil Harris
(a don't stop till you drop production)
Home:helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com


Sunday, 10 December 2017

Snowed in!

It snowed - we got up and the rooves were white, the road covered, all the branches picked out in white dust.....beautiful. Of course it meant I was snowbound, not that it takes much to keep me indoors these days. But Robyn also didn't go out. Then it snowed again, so when we went to bed there was still snow lying which is unusual here.

I had another rough day, which seems quite common again. Not that I had any plans but this week I need to get out - to the Doctors amongst other things. So I'm hoping it improves for me.

We also need to start sorting out Christmas but that's another story.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com

Saturday, 9 December 2017

Close call.

A bit of a depressing day today - I wasn't so well and there were a couple of Christmas events on that we would have gone to if I'd been well enough - I wasn't.

On the other hand I was able to empty the vacuum bag! If you have a bag in your vacuum, you can make it last more or less indefinitely by cutting corner off it and resealing it. if it's paper you can staple it back together, if it's cloth I use clothes pegs.

Either way, it's messy job emptying it out and Robyn doesn't like doing it. So it was nice that it was something that I could do - the first useful thing I've done for a while.

The muck went into a bag and when it was done I realised that I was looking at an entire new Sydney, the Grumpy cat. She has long black hair and the bag was just stuffed full of Sydney.......we could have had a brand new cat.

Instead we decided to put up with the one we had.

Close call.

Neil Harris
(as don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com

Friday, 8 December 2017

Promises to keep.

This old favourite this appeared on this Blog a couple of times before but it somehow seems appropriate on this snowy weekend before Christmas;



Stopping by Woods on a Snowy Evening
                           
By Robert Frost
 
                                             
Whose woods these are I think I know.   
His house is in the village though;   
He will not see me stopping here   
To watch his woods fill up with snow.   

My little horse must think it queer   
To stop without a farmhouse near   
Between the woods and frozen lake   
The darkest evening of the year.   

He gives his harness bells a shake   
To ask if there is some mistake.   
The only other sound’s the sweep   
Of easy wind and downy flake.   

The woods are lovely, dark and deep,   
But I have promises to keep,   
And miles to go before I sleep,   
And miles to go before I sleep.


Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com

Thursday, 7 December 2017

The 17 days of Christmas.

And I made it again! We got to Tesco's and Robyn did the shopping while I careered about on the disabled buggy, occasionally moaning as the pain got too bad.

I even got ready early - ten minutes quicker than last week. I'm not proud of it, I aimed to get away earlier and Robyn certainly did a bit of lip pursing as I slept in the morning.

We have so much to do and I'm just a dead weight. Even without Christmas it's too much. Christmas just makes it harder, struggling through the crowds, being ignored by people because when you are disabled you are just invisible unless you are a problem.

I'm still in a lot of pain but sleeping better and at an equilibrium. The morphine is obviously essential and I've learnt a hard lesson. I suspect I already need to be on a higher dose. At the moment that comes from a patch you wear on your skin with a slow release mechanism. It's quite crude and relatively low dose, which is what I wanted. Higher doses come from slow release tablets, which is what they want me on next.

Back at home I just lost consciousness as soon as we got back. It's hard work being ill.

Meanwhile my candidates for my Christmas present music for you have (of course) got well out of hand and at the moment there are likely to be 17 days of Christmas unless I get edit them down. Which I will do.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilwithpromisestokeep@gmail.com

Wednesday, 6 December 2017

Feeling a bt low.

Oh dear me - I had a better night, got some sleep but had a rough day with lots of pain. So I'm not at my best, not getting to grips with Christmas and tomorrow is our shopping day, which I'm not looking forward to.

Robyn wants us to go as early as possible, I want to go late. I need to sleep after I've got up and had my morning medicines. It takes me time (and a lot of pain) to get dressed and then I want to time it so that I've just taken the next lot of painkillers as we go. Robyn gets worried about not having anything for lunch, trying to get the shopping done when it's quiet and when there's a disabled buggy available for me.

She's right, of course, but it is a real struggle to make it, remembering that I don't even have to do anything.

Right now there are no Christmas cards sent, I have no presents, I haven't even done a list of the things we need and it's all looking a bit bleak. Hopefully, things will sort out soon.

Meanwhile, I'm not really in the festive spirit.

And then the nurse from the hospice rang, a couple of days before I wanted her to, so I've had to admit my foolishness in stopping the morphine patch. Made my day, I can tell you.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilwithpromisestokeep@gmail.com

Tuesday, 5 December 2017

Present list.

My Christmas presents are coming along nicely - I'm putting together some fantastic music to give you over the Christmas period.

They aren't meant to be a 'Top Ten', or my all time favourites. But each one is something you should have heard or have forgotten that you have heard and which is guaranteed to blow your sox off.

I've still been largely out of action, waiting for the morphine patch to kick in which can take a day or two to happen. Or it will never happen which is another depressing possibility.

I'll probably know how that pans out tomorrow night.

Wish me luck.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com

Monday, 4 December 2017

Oh dear.

Another truly depressing day - I'd thought I could manage without my morphine patch and learnt I couldn't. I had a really bad, really painful night which continued through the day, leaving me unable to do anything.

I've replaced the patch although it will take a couple of days for the effects to build up. Plainly the new meds weren't as great as they seemed, just a cumulative effect with what I was already taking.

Also I can't see any improvement in my illness which probably means bad news when we go back to see Dr Feelgood in a couple of weeks time.

So, all in all, a really depressing day. Mind you it could have been worse - I could have got a call from the hospice and had to admit my foolishness. Presumably that will come in a few days time.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com

Sunday, 3 December 2017

Christmas presents.

I had a really painful day, which may mean I spoken too soon about the morphine. It may yet be having it's revenge on me. On way or another I've been taking one morphine derivative or precursor or another since the spring. It would be strange if I didn't notice the difference when I stopped taking it.

On a much happier note; I won't be able to do any Christmas shopping this year, so I am starting to select a series of very special presents to give you for the festive season. I'm putting together a selection of special music that either you may never have heard before or should be reminded of and I'll post links over the festive period.

They aren't Christmas songs, there's no logic to it. Just very special tracks that should blow your socks off, if you have any style in you.

Neil Harris
(a don't stop till you drop production)
Home; helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com

Update.

I've been having a review - it's over a week since I started the new medication and while I'm in lots of pain, there have been developments.

I'm in bed a lot longer - often up to two hours more time lying down, which is really good. I'm no longer sure how long I sleep for. It's very disturbed, rarely an hour at a time but more. I'm uncertain because I'm awake less.

I'm not much more mobile than I was, but it's no worse. In fact, I think it may be slightly better. I walk faster although not for long.

Best of all it's over a week since I used oral morphine, which was never much help anyway. I've been using a morphine patch, which slowly releases the drug. Yesterday it was due for renewal and I didn't bother. This was because I didn't want to increase it and I wasn't sure whether to keep it the same, reduce it or give up altogether. I gave up.

I'm not sure what difference it's made, which probably means it wasn't helping much, as I suspected. I'm now dreading a phone call from the medical staff at the hospice.

Can't please everyone.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com

Friday, 1 December 2017

Just Saying.

Well, Friday came around and I made it to Tesco's, driven by the long suffering Robyn. We even managed to leave an hour earlier than last week although that was mainly because Friday afternoon is a nightmare.

I timed it so that I'd just taken all my painkillers as we left - that didn't really help a lot, I still wasn't over Wednesday's adventure.

I never imagined, even a year ago, that just going to the shop could ever be so painful. Legs like lead, everything that could possibly hurt, hurting.

I didn't drive, Robyn did all the work and by the time I got home I was completely shattered. By midnight, things weren't much better - I don't recover these days.

But I made it!

And all the way through my illness I've always known two things. However bad I feel at any given time, there will come a time when I look back on that as 'the good times'. That's been true all the way through.

Secondly, I knew to be grateful whenever I could make it to do the shopping, or the chores. All the things that bored me when I was well, because I knew there would come a time when all I could wish for was to be able to do the shopping or mow the grass or take a trip to the local dump.

Just saying.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com

Thursday, 30 November 2017

Out for the count.

After my trip to Egham and ending up waiting in the street, I was completely out of it today; no sleep at night, painkillers not working during the day. I was wasted.

The end result was that we couldn't do the shopping and put it off to Friday, which is a really bad, busy day to do it and just multiplies the problems. But, as it was I was so out of things it didn't make any difference.

I have hopes that I just overdid things on Wednesday and I'll get back to 'normal' soon.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com

Into town.

We're a bit disappointed, Princess Esmerelda Stinkybutt (AKA Sydney the Grumpy Cat) has not dealt with our mouse problem. Even though she sat herself on a mouse, it got away from her and seems to be thriving. Meanwhile Sydney spent the day sleeping to get over the stress of it all.

We went out - to Egham to do chores. I made it to the car although I'd had a bad day and then made it to where I  needed to go. There was lot of standing and I had to wait for Robyn after I'd finished. I have big problems standing these days but I made it.

Tomorrow is shopping day and I'm not sure whether I'm up to that yet. I hope to do it.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com

Tuesday, 28 November 2017

Stinkybutt strikes back.

I was stuck at home today while Robyn went up to London to meet a friend and take in the Christmas lights. it's the first break from me that she's had in ages - she was due to go up a couple of weeks ago but our kitchen sink went and she had to cancel.

I must admit I was sad - we used to do things like that together and I'm certainly not up to it. Although I am sleeping better and the general background pain is definitely less now. I'm still not up to afternoons out.

Meanwhile, Sydney the Grumpy Cat trapped a mouse in the clutter in the hall. From all the noise you would think this was a great success except that it eventually got away. I have to add even though at one point Sydney found herself sitting on the mouse.

It's got cold and the mice always come indoors when it gets cold. Hopefully Sydney's bottom will be enough to scare them away.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilwithpromisestokeep@gmail.com

Monday, 27 November 2017

My November Guest.


My Sorrow, when she's here with me,
Thinks these dark days of autumn rain
Are beautiful as days can be;
She loves the bare, the withered tree;
She walks the sodden pasture lane.

Her pleasure will not let me stay.

She talks and I am fain to list:
She's glad the birds are gone away,
She's glad her simple worsted grady
Is silver now with clinging mist.

The desolate, deserted trees,
The faded earth, the heavy sky,
The beauties she so ryly sees,
She thinks I have no eye for these,
And vexes me for reason why.

Not yesterday I learned to know

The love of bare November days
Before the coming of the snow,
But it were vain to tell her so,
And they are better for her praise.

By Robert Frost.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com

Sunday, 26 November 2017

Still not sure.

I had another bad night and was pretty much out of action today, so I'm getting a bit cynical about the new drug. On the one hand the pain is improved but not by much. On the other hand I'm worn out and not sleeping, as I was before.

Of course, not having ben sleeping properly for most of the year means I may have just got used to not sleeping during the night. The pain doesn't help, nor does the cold weather but it may just be that.

Either way I was out of action today and that needs to change.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilwithpromisestokeep@gmail.com

Saturday, 25 November 2017

Still up in the air.

I'm still getting big benefits from the new drug, although last night I had a lot of bleeding from my injection site and whether that's as a result of the new drug or not remains to be seen. I didn't get much sleep either but I was cold all night and went to bed far too late.

We'll see. Actually, I think the problem is that while the pain has ben dramatically reduced, things still hurt enough to keep me awake all night.

I didn't need to get up until seven o'clock though and that hasn't happened all year.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilwithpromisestokeep@gmail.com

Friday, 24 November 2017

Wheels.

Well, I'm not one to get carried away but yesterday I was pushed around Charing Cross Hospital on a wheelchair hardly able to walk more than a few yards.

Dr Feelgood has taken a risk - she's prescribed me with an anti inflammatory painkiller which I'm not supposed to have - it's dangerous.

Last night I took it for the first time. Usually, a good night gives me about an hour and a half's sleep and I'm up at five o'clock.

A bad night is about 20 minutes sleep and hours of agony.

Last night I got up at ten to seven in the morning and slept for a lot of the night. I'm far from pain free but it was the first thing like a normal night in about 8 months.

I'm not holding my breath, I've had false dawns before - they usually didn't make it to dawn. I've had miracles that lasted for a day. But who knows?

As it is it's got it's dangers but I was rapidly closing down, in such pain as you can't imagine.

It could be a new start. And my replacement wheelchair arrived today.

I got wheels!

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com

Thursday, 23 November 2017

Happy Thanksgiving!

Happy Thanksgiving! Which, as I've learnt from Robyn, is a very big deal indeed.

I had a tough, tough day. I got up at 0500 am, mainly due to pain but also to get washed and ready. I got dressed and crushed like a grape, took my painkillers and got some sleep at 0630am. We were off, with Robyn driving - her first rip up to London and first along the motorways. She was stressed out while I was in agony. She did better than I did - when we got there I had my first expedition in my wheelchair, pushed by Robyn across the Fulham Palace Road and through the hospital.

e had a long wait and I dreaded the blood test and being weighed. Just getting my jacket on and off was a nightmare. We saw Dr Feelgood and she's now prescribed an anti- inflammatory painkiller which I shouldn't be taking but we both feel it's a risk worth taking.

We sorted out my infusion and I took my next dose of painkillers and disappeared off into a happy land of sleep, which meant that Robyn drove back as well.

It was very tough, I can't begin to tell you how hard. A month ago I drove up and down and walked to and from the hospital. I still felt very bad but at least I'd done something.

At home, Robyn started cooking like a mad person. I must admit I don't understand the importance of Thanksgiving and never will. All I know is that as we tucked into a huge meal I had memories of how I spoiled all our last Thanksgiving's for Robyn.

In 2015 I was stuck in hospital and after a kidney operation the bleeding just wouldn't stop. In 2014 my back was broken.

This year we had plenty to be thankful for and we were. Tomorrow I'm having a very lazy day indeed.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilwithpromisestokeep@gmail.com  

Wednesday, 22 November 2017

Making it to Monday.


Don't think for a minute this was a good day! Because it really, really hurt. I made it back to Tesco's.

This is a bad week - I'm back up at Charing Cross Hospital tomorrow and I have no idea how I'm actually going to make it. For comparison, last month I drove u[ there and back and although I had a terrible time I was able to do it. This time I can't do that. I'll be in a wheelchair to start with.

Last week I was too ill to make it to Tesco's and Robyn had to go on her own. Don't imagine I make much of a difference to the whole shopping experience. I make it harder.

Today we intended to go in the morning but I ended getting out of the house at one o'clock. I have no idea what happens tomorrow with an 1100 am appointment.

I managed to walk to the car, somehow got my aching legs in and got out again at the other end. Luckily there was a disabled buggy available and I wizzed around on it. These days that hurts a lot. We paid and somehow I got back into the car. I'm not sure how I got over the front doorstep but I did.

For the rest of the day and the evening I was just out of it.

I've agreed with the hospice that on Friday I'll increase the background level of morphine I take - but it seems to make no difference to me. Everything is just agony. 

Anyway, I'm having a cash flow crisis at the moment. Just got no cash and I'm not well enough to sort it out at the moment. The earliest I can do that is Friday although we are waiting for the right wheelchair to arrive then. Hopefully I can make it to Monday.

Wish me luck!

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilwithpromisestokeep@gmail.com

Tuesday, 21 November 2017

Pizzaman.

I had another rough night - or at least I woke up exhausted even though I slept a bit longer than I normally do. I know it was a bad night because I had a really bad day - asleep most of the time, annoying Robyn, not getting anything done. And contemplating some rally tough days to come, with more than a bit of concern.

Then, this evening I had half a pizza. I haven't eaten a pizza since the spring. Every time I had one I felt more and more sick until, in the end, I just had to say "No more Pizza"!

Which is not like me because I loved Pizza, loved eating it, loved cooking it from flour. Everything.

If I hadn't felt so ill, tired and hurting I'd have said that things were getting better.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogsot.com
Contact me: neilwithpromisestokeep@gmail.com

Cheating.

I was thrown out of N.Y.U. my freshman year for cheating on my metaphysics final. You know, I looked within the soul of the boy sitting next to me.


Woody Allen
Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilwithpromisestokeep@gmail.com

Sunday, 19 November 2017

So Cool.


I don't have a good reason for posting this cool picture, except that all these years later, it's still the ultimate in cool.

It's from Jean-Luc Godard's film Breathless. The beginning of the French New Wave, the 1960's existentialism. Everything.

Pictured are Jean-Paul Belmondo and Jean Seberg.

So Cool.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilwithpromisestokeep@gmail.com

Saturday, 18 November 2017

Not working.

Last night didn't go so well - my new double strength morphine patch didn't seem to help at all. I took my usual meds and got the usual hour and a bit of sleep, then woke up in pain which got worse through the long small hours of the night.

In the end I got up and moved off to my armchair at 5 o'clock, shuffling in pain through the dark house.

Clearly I need much bigger doses of morphine to have any effect, which was my worry in the first place. I have got the option of adding a second patch which would add another third to the total - i'll have a chat with the nurse in a few days next week after it's all settled down.

I am very conscious of how boring these repetitive Blogs are, nothing happening except a lot of wingeing about pain. Unfortunately, that's the person I have become these days. I still have hopes that I can get it stabilised and move on to more interesting things.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com

Friday, 17 November 2017

Grrrrh!

We've had another rough couple of days - Thursday when we should have gone shopping we spent a day waiting for the right wheelchair to arrive. It never came.

Thursday night was very tough. I woke up at three am and virtually levitated with pain. So much so that I tried using liquid morphine, which had no effect at all. In the end, Robyn got so frustrated that she brought me my PSP and I played a computer game that distracted me away from the pain for an hour but by 0500 I was in agony again and in the end got up.

When I took my normal timed painkillers in the morning I was out like a light, sleeping.

Robyn phoned the Hospice and I got a visit from my nurse as well as a very earnest doctor, who look me through the not very appealing alternatives.

In effect I've agreed to try stronger morphine patches, although I'm not optimistic. They still intend to move me to slow release tablets as soon as they can and I've given in, rather reluctantly.

The day got worse. I wasn't up to going shopping and let Robyn go to the doctors to get the prescription and on to Tesco's on her own on a busy Friday afternoon. Robyn was worn out and I was feeling generally defeated.

It's very hard to stand up to some very well meaning, busy  people who probably know best and only want to help.

Grrrrh!

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilwithpromisestokeep@gmail.com

Thursday, 16 November 2017

Valerian root.

Well, last night I tried an experiment - I stopped taking morphine. I can't say it went so well but it didn't go so badly either.

I've been on the lesser types of morphine for most of the year and it hasn't really helped a lot. The Hospice wants me to increase the dose massively and ultimately to get me onto a permanent, slow release dose that can easily be increased. I accept there may well be a time for that.

But I've had a bad relationship with the drug, which just doesn't seem to help a lot. Indeed, I've been in hospital being pumped with intravenous morphine, having hallucinations and still screaming with pain.

Don't get me wrong, it can be fun; a nice warm feeling when you increase the dose. But that doesn't last and your body just needs more. Meanwhile I don't sleep and I'm in a lot of pain.

So last night I took the paracetamol which does help and added Valerian root as well. That's the herb that turns Sydney the Grumpy cat into a wild ball of ecstacy. In my case it's supposed to help with sleep and relaxation.

Anyway, I took it and did get some help with relaxation although not so much with extra sleep. Then again, I didn't have too many bad effects from stopping the morphine, although later in the night I was in some very real pain, which be the result of stopping it. I'll give it some more time and see how things add up.

We'll see how things go.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilwithpromisestokeep@gmail.com

Wednesday, 15 November 2017

Another tough night.

I had a really lousy night  - probably no sleep at all, maybe some minutes in the small hours. But the meds failed me altogether.

So, tonight I'm going to change my meds, even though that may go even worse for me. I just can't see the point in carrying on because there doesn't seem to be any alternative.

Then today, of course, I was completely out of it. Wandering from sleep to wakefulness and trying to get things done in the gaps between, without a lot of success.

I'll let you know how it goes.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilwithpromisestokeep@gmail.com
 

Tuesday, 14 November 2017

Being fortunate.

After a wait all day and far too much money, we got our kitchen tap sorted out. It's incredibly frustrating. It was a simple job I could have done myself for nothing if I wasn't ill.

So it was an annoying day, apart from being a painful one too.

Probably, I should have become a plumber. It's a bit late now to realise that!

I have to keep reminding myself how lucky I've been; The Grenfell Tower Fire was five months ago and most of the families are still stuck in temporary housing. I could so easily have been born somewhere like The Yeman or Afghanistan and spent my life in poverty, famine and war.

In comparison I've been very fortunate, even if like today it doesn't always seem that way.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilwithpromisestokeep@gmail.com

Monday, 13 November 2017

Darn it.


A real up and down day. In the morning Robyn was very kind and rang the Hospice for me - they did order the wheel chair I could 'drive' myself and the company delivered the wrong one. Hopefully, by the end of the week it should be changed over.

Well maybe!

But tonight it all went wrong. At teatime the kitchen tap started to drip, which as I told Robyn wasn't a big deal. It just needs a new 'O' Ring and we can take our time on that.

Except by bedtime, the drip had turned into quite a strong trickle coming out of the hot tap, with every sign it was going to get worse. I don't have any 'O' Rings and I'm not well enough to get to where I can buy some.

So I ended up on a chair, trying to lean under the sink with a screwdriver to turn off the tap. I couldn't do it - arms too weak, back too painful. Luckily, Roby was able to finish it off for me and tomorrow I have to find an extremely expensive plumber to come out and do the simplest job that I would do myself if I wasn't so crippled.

It's very depressing, and expensive.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilwithpromisestokeep@gmail.com

Sunday, 12 November 2017

From Time To Time.


From time to time
The clouds give rest
To the moon- watchers.

Poem by


Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilwithpromisestokeep@gmail.com

Saturday, 11 November 2017

Groany day.

I've spent the day sulking about my new wheelchair - Robyn is very keen to make use of it. I've got to decide whether to try and get it changed over or whether I just accept the inevitable.

Last night was quite grim and I ended up doubling my dose of morphine when I went to bed. It didn't help a lot. I got more sleep but woke up more or less as usual in some agony. I'm beginning to wonder whether I have genetic problems in assimilating morphine based drugs. I'll start asking some questions.

The rest of today was spent trying to catch up with the pain, without a lot of success.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilwithpromisestokeep@gmail.com

Friday, 10 November 2017

Gloomy Friday.

Today really got me down - my wheel chair arrived. It was always going to be a tough one to deal with but, sadly, it was tougher than it needed to be.

For the sake of fairness I have to draw your attention to this 'Important Note Below', before you read on.

I thought I'd asked for and they'd agreed to supply a wheelchair that I could propel myself, as well as being pushed around by someone else. When it turned up it can only be moved by a carer - which leaves me helpless and dependant. Well, I am pretty helpless and dependant but, at least, I had the illusion that I could move myself around on it.

I've joined the ranks of the helpless and I'm more than a bit depressed about it.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com

Important Note Below.

I have to say I am still very grateful that I've been given the use of a wheelchair without charge and that there is someone kind enough (Robyn) to be prepared to push me around on it.

Thursday, 9 November 2017

My Everest.

Another gruelling day - shopping day.

I got 30 minutes sleep, with the help of my meds. I spent the long hours writhing in pain, alternating with playing a game on my old PSP. Nothing really helped and at 0530 I got up.

In some desperation I got washed and changed straight away, got my stuff, put my trousers on and an hour later collapsed into my chair.

I took painkillers at 0845 but was shattered. I was asleep for a couple of hours and we decided to have lunch before we went to the shop.

More painkillers and driven by Robyn I made it; very slowly and very painfully. Unfortunately I'd wasted so much time that when we got there all the disabled karts had gone and I took a seat by the tills to wait. I was really lucky; someone returned one and the security staff brought it over to me.

By the time I got home I was in agony and, once again, was moving like a slow motion sloth. And I pissed off Robyn who would rather wiz round doing the shopping alone anyway.

But I made it. It's a huge achievement. I may not have summited Everest or run a marathon but for me it's up there.

Tomorrow, the wheels arrive!

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com

Wednesday, 8 November 2017

I'm giving up on Sydney.

I got scratched by Sydney the grumpy cat, yet again today.

It's quite a common event but this time just a bit worse. Normally I get a scratch when I stroke her and she doesn't want it. Today I was just holding my hand out (she likes to sniff it), I then put it down and she deliberately scratched me.

I'm on the verge of giving up on her. I've studied cat behaviour on the net, taken advice from net experts. When she makes it clear she doesn't me to do something I stop doing it.

She just doesn't like me and I'm very sad. I've never failed with an animal before. Now I have.

It certainly didn't help that I had a really painful night and the pains just carried on all day.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilwithpromisestokeep@gmail.com

Tuesday, 7 November 2017

A present from the Hospice.

It gets worse - we had a phone call today from a company that supplies wheelchairs. This has been arranged by the Hospice and they told us that my new wheelchair will be delivered sometime on Friday.

I'm not looking forward to it although Robyn is. it will make life easier for her, more depressing for me.

I have ordered an Olympic sized racing model although I believe an old codgers wheelchair will arrive, the type that are pushed about by longsuffering carers like Robyn.

I know there are big advantages. It means we can go places and I don't have to worry about whether I can walk or not. I don't have to worry about getting tired on the way to hospital or if there aren't any disabled buggies in Tesco's/

But for me it's another defeat, a loss of mobility.

And I don't think there's time to qualify for the Olympics.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com
















Monday, 6 November 2017

Giving the finger should not be a crime.


Briskman said she had no regrets about the attention her public show of displeasure received.

This is the picture of Juli Briskman, who saw red last week when she was out cycling and got overtaken by Donald Trump's presidential convoy, on it's way to yet another golf course. As you can see - he got the finger!

Now, Briskman has lost her job - fired because she posted her photo on social media.

It's an outrage - Trump was in fact greeted by a series of rude gestures and people holding placards as he made his way towards the Golf Club. If people had known he was on his way he probably would have got more.

Briskman deserves to get her job back.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com

Sunday, 5 November 2017

Grenfell update.


It's time for an update on the appalling fire at Grenfell Tower last June. We are still waiting for the final death count, which still seems strange in the circumstances.

Meanwhile, a serial fraudster has pleaded guilty to conning £12,500 from charities by pretending that he had lost his home and family in the fire. Suspicions were raised when he was unable to remember his flat number.

A 'Senior Fire Officer' has been arrested and interviewed over the theft of large sums of money from flats that weren't burnt but were left empty for long periods as the fire was investigated. No charges resulted but it is clear that when the thefts occurred, only the emergency services had access to the flats.

Only a small percentage of families have yet been given permanent accommodation in Kensington and Chelsea.

Finally, the company that supplied the cladding for the tower and which is now suspected of increasing the intensity and speed of spread, has suffered extensive damage at it's West Country factory.....as a result of a fire.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilwithpromisestokeep@gmail.com

Saturday, 4 November 2017

Extra Morphine, Danish Blue and a Chinese.

I had a lovely birthday - thanks to everyone who wished me well.

It didn't start so well. I went to bed in a lot of pain and for all my meds and morphine....it made no difference. I couldn't get any sleep. At three am (well it was my birthday) I took another dose of morphine. That made no difference either.

In desperation I got up at 0400am and went to sit in my chair.
For no obvious reason I had a midnight feast of Danish Blue cheese and crackers (well, it was my birthday) and played computer games but as the dawn came up I was in agony.

This is what greeted me at 0400 am - the Google Birthday  doodle we all get.


I spent the day popping pills and not dealing with the pain. But with Robyn I had a wonderful birthday. I got a fabulous cake; 
 
Which, as you can see celebrates my life as a MOD - a world of left wing politics, cool jazz, hardline rhythm and blues, sweet soul music......a world of cool.
 
I got given some fabulous presents by Robyn - a new battery for my laptop - it died on me two years ago. A couple of pieces of polished stones - I was always fascinated by rocks and minerals. She gave me a piece of wavy green malachite and best of all a romantic piece of bright blue Lapis Lazuli flecked with gold, all the way from a lonely and dangerous mountain in Afghanistan.
 
And she gave me something I'd always wanted - a bike chain bracelet. I was a Punk after all, it's how everything started for me and I now can wear this one on my way out.
            

I got a foot massage and a lot of pampering as well as some fireworks on my cake. A six foot high flare and candles;


                       

And finished the evening off with a Chinese take away and a silly video film on the telly.




 Perfect day - thank you Robyn.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com 

Friday, 3 November 2017

The things I did!


I had a quiet day today - sleeping a lot and generally thinking about things. Tomorrow is my birthday although these days I'm not as excited about that as I used to be.

Not least, six years ago today I went up to West Middlesex Hospital for what I thought was just an appointment when in fact I had a rather nasty biopsy done which no one had warned me about. Worse, my cancer was so bad that the doctor who did it didn't bother to wait for the results and just gave me the news with both barrels. And that included how poor my chances were.

As I said that was six years ago and no one thought I would survive this long. Unfortunately, it's been a real struggle; lots of failed treatments, lots of bad side effects and more than a few very close shaves with the grim reaper.

Being still here is sometimes quite amazing although tonight a bit sad as we would normally have gone out to watch fireworks which we both love. I'm not up to things like that any more.

But six years! And didn't I do some things!

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com
  

Thursday, 2 November 2017

Shopping.

Shopping day and I didn't want to go. In the end we did, although Robyn did the driving and had to help me put my big bad boots on before we left the house.

I didn't want to go because we were low on petrol and we had to fill up on the way; that meant getting out of the car I'd just got into, paying and then getting back in before we got to the shop where I had to get out again. It was gruelling.

But I made it to the pharmacy and picked up my prescription then drove my buggy around the shop. We got home and I was really out of things again - it's been a really tough week with little sleep and lots of pain.

I slept the afternoon away and rested all evening.

Looking back I have no idea how, on Monday, I managed to drive up to Charing Cross Hospital and back and to do all the walking I did.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com

Wednesday, 1 November 2017

Social worker...gulp!

Today, Robyn had a long meeting with a social worker form the Hospice. This is not so much to do with me but it's support for her and I'm only too aware how tough things are when your partner is dying. I can't imagine how she deals with it on her own.

That's great but I know that the social worker is planning to sit in on my next meeting with the nurse, so I can see that the question of my reluctance to use morphine to the extent that they want me to is going to come up again. I can see the pressure mounting and it's going to be very difficult to deal with it.

Then again I had a lousy night last night. Ended up getting out of bed much earlier because of the pain and had a painful day too. So I can see that the day will come when I need to be relying on the morphine. It's just a matter of time.

On the other hand I have a raging appetite and I'm finding it harder to sleep in the daytime - which may be good or bad.

Who knows?

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilaithpromisestokeep@gmail.com

Tuesday, 31 October 2017

My second hospice day.

Another trying day although not in the physical sense - I didn't do anything.

But I didn't sleep and had to catch up in the morning. Then I had a meeting with my nurse from the Hospice to check how I'm doing, especially with the morphine.

Well, I'm not. I use one dose of morphine at night and that's half the recommended dose they thought I should start with.

I need more time to come to terms with this and they seem prepared to let me have it. We'll be staying in touch and I will reconsider - not least because I'm not sleeping and in some considerable pain.

Otherwise things are going well....ish. I still have a monster appetite which obviously comes from the drugs I'm taking but is a considerable step forward.

I have much reduced mobility and a lot of pain, but I have possible ways to deal with that if I can come to terms with them.

The problem for me is that to get here I've had a huge struggle, battle after battle. Most of the battles I lost straight off, but without the will to fight I would have given up long before now. I'm still very reluctant just to 'give up'. I know that isn't going to work out very well for me and I will have to change my strategy. I'm just not ready right now.

Meanwhile, seeing a nice, caring person who means well and wants to help is very wearing and emotional. I was worn out.

Neil Harris
(a don't stop till you drop production)
Home: helpmesortoutstpeters.blogspot.com
Contact me: neilwith promisestokeep@gmail.com