A strange week.

This change as in the arrival of the cancer on the scene, has Β given me such a lot to look at and consider. The first reaction is to consider the length of time left as opposed to to that given by COPD. I have to admit if we can get the pain relief under control I’m hoping my quality of life will improve.

Having said all that it seems to take forever to get a good balance of first the type of morphine to take, oral versus slow release tablets. Then of course the paracetamol, which I personally think I will continue to take. Now Ibuprofen has been added to the list even though in the not too distant past it was a big no no for those of us with COPD.

It appears that each drug or type of drug has a better reaction to the pain in each type or position of the pain. In my case paracetamol tablets plus slow release morphine tablets work well in the kidneys whereas oramorph seem good in the bones. I am having to keep a list for my own benefit to pass onto the medics.

Even though the list is growing thankfully it’s getting simpler as there is more repetition. My only difficulty is giving up control which I must do. But in doing so I get annoyed with myself which gets me upset which in turn upsets Chris and is definitely not something that I want to happen, contrary to popular belief.

Lets be honest I am a very very lucky person to have such a great family here to help me over the last few years/months etc and they shouldn’t have to put up with a miserable arse wipe during that time. But believe it or not I do actually try to do my best and remain cheerful if I can.😘😘😘😘😘😘😘😘

Right that’s it for tonight everyone. Sleep well.

Update

Apologies everyone, rough night and day therefore nothing meaning full to contribute today. Will be back as soon as possible

First week over ……..

Thursday 13th July 2017.

Well that was a very strange day, content wise.
The expected visit from the optician went very well and I should have a new upgraded pair of all seeing eyes within a week or so. The other helpful addition are some drops daytime and night which I believe are the same ingredients just that the night ones are a gel as opposed to liquid. I presume that is to help keep them in place overnight.

The weather seems a little easier today, not quite so oppressive. As I write it’s 8 pm, garden patio door is open and it’s feeling pleasantly cool.

The other unexpected visit today was from the district nurse. A very pleasant young fella, Caryl, never come across the spelling of Karl in that form.😊. Anyway spelling apart he seems a great person to chat to. We spent over an hour generally talking about the situation and getting to know each other. For the time being he is intending to visit on a weekly basis just to find what level of help etc I need. I think once I can get it into everyone’s head that I’m still alive and kicking these greatfully accepted visits will be reduced dramatically.
We chatted about all of the options available towards the end, I suppose it has to be done, but what would be great is if you could do it with one person and they could then share that information. Over the last week or so that’s all I seem to have been doing.
That’s the evening meal over with now, plus a quick chat with Jenn a very good friend in the US. She works as a teacher I’m not sure what age group, I think teenagers, to be honest I can’t really follow our school system let alone theirs as well.
But a very intelligent down to earth person with a very interesting husband to boot. He also suffered from/with lung cancer a few years ago but has made a full recovery.
So other updates for today I bought a garden chair “Adirondack” and an up to date πŸ“Ί for the bedroom so I can make full use the facilities on Sky Q.
I have just been giving it some thought and maybe I will use midweek entries for the more down to earth stuff and leave the weekends for the in depth brain rattling stuff.
Right, that’s it for this entry, I’ll get it posted now. If you are having any probs with the blog reading it,finding it etc. Please let me know. Although I’m finding it interesting to write I just hope there are some out there finding it interesting to read. If there is anything you think may be of interest to know about please let me know.
All the best for another day.

Wednesday

Wednesday 12th July 2017

Well another great day, nice morning with Mark and Dylan playing around in the laboratory with 3d printers, CNC and a general tidy up.
Chris had a free morning at a WI committee meeting so a great morning break from each other, although we actually need the company most of the time.
Then this afternoon I had to make good use of the sleeping facilities πŸ’€πŸ’€πŸ’€πŸ’€
Bad idea . Waking up a couple of hours later to a very bad pain, feeling akin to someone plunging a knife in my left side which I can only compare to when they gave me a pleurodesis ,explanation “Pleurodesis is a medical procedure in which the pleural space is artificially obliterated.[1] It involves the adhesion of the two pleurae.”
This required some major pain relief from the opiates available and after a while everything subsided, I don’t know what I would have done without them, but it’s nice to know it is there when needed.

Back to the CNC I was having some problems with the connection to the PC but with Marks skill, knowledge and ability to see (thank gawd the opticians are here tomorrow ) we are back to normality apart from the fact that the steppers etc need cleaning and lubricating.
Just had another vid call from my Bruv in law, he does seem to worry so much. Change of plans on his part, not coming down until pm Sunday, not such a bad thing as I can spend more time chatting to Reg.
Sounds as if my son in law has landed on his feet with his new job at Longleat https://www.longleat.co.uk
All will be revealed in the near future.
I’m afraid that’s it for tonight be prepared for a bumper edition tomorrow.

Tuesday

Day four, Tuesday 11th July.

9 am and we are off on another busy day. A Nurse is visiting and I expect to set up a few of the more down to earth things. My gorgeous daughter Bex is also popping round. I must get bad news like this more often, had all my meds laid out for me with coffee and a nice slice of toast. At the moment I’m sat in the living room waiting on my first visitor, I’m not sure who that will be.
Ok it has been extremely busy today as expected.
First off I met Jude, my nurse, actually the nurse. πŸ˜„She is a very clued up young lady and we went through what she considered to be priorities.
To that end we now have a rather detailed form to produce to other medical professionals such as emergency Drs and ambulance crew, basically saying no Resuscitation and to leave me here no more trips in the big yellow taxi to the hospital. The other and probably more Important was the type and levels of painkillers. To that end tramadol has been suspended and replaced with a time release morphine but retaining Oramorph and paracetamol. So far so good had a nice quiet afternoon pain wise, but just trying to get the o2 levels just right that should come right when this latest chest infection is sorted.
We are getting another visit on Monday seems like a lot to do. On a side note my son in law had a good first day at his new job and Bex popped round and collected my new painkillers.
AND best of all after ten years has worked out how to fill my liquid oxygen. πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ‘

Anyway everyone another day over let’s see what tomorrow brings………….

Day Three, Monday 10th July.

This is going to be an extremely busy day I think, mainly with the GP. Have awoken this morning feeling a little more positive , have Chris’s cousin , Sheila and her husband visiting today. Family wise it is her and Christine’s brother Robbie who have been amazing friends and all round stars over the years. Over the last ten years especially when the emphysema has kicked in big time they are here in a flash. Especially when considering Sheila lives in Birmingham and Robbie in Kent.

As for my family, which to be honest is fairly large in comparison, I only have contact with a cousin on my fathers side and a step cousin. Both great friends. The rest I think I shall refrain from commenting on needless to say they will not be welcome at my funeral or visiting prior to the event I think a polite word to use is “swivel”

Right today I aim to cancel a cataract operation I had arranged as I don’t really think I can justify using the resources for such a short time scale.

Late evening.
Well a very productive day, an amazing visit with Sheila and Steve both real spirit lifters. Also before 11am I managed to fill the rest of the week with Doctors , optician and nurses appointments. Very much Sod’s law in the post was an appointment for the cataract but I’ve mentioned it to the coordination team at the Doctors and they are going to sort it all out.

They are a great group of girls in there, their passing comment today was if you don’t feel up to anything let us know and we will do it for you.

Also got a great video call from Robbie, they are down on Friday, I shall be knackered come next Monday. But it’s just what I need to keep the brain going.
Anyway I think that will be enough for today busy day tomorrow with a nurse visiting. I’ll keep you all informed in tomorrow’s entry.

Cooler Monday

Day Three, Monday 10th July.

This is going to be an extremely busy day I think, mainly with the GP. Have awoken this morning feeling a little more positive , have Chris’s cousin , Sheila and her husband visiting today. Family wise it is her and Christine’s brother Robbie who have been amazing friends and all round stars over the years. Over the last ten years especially when the emphysema has kicked in big time they are here in a flash. Especially when considering Sheila lives in Birmingham and Robbie in Kent.

As for my family, which to be honest is fairly large in comparison, I only have contact with a cousin on my fathers side and a step cousin. Both great friends. The rest I think I shall refrain from commenting on needless to say they will not be welcome at my funeral or visiting prior to the event I think a polite word to use is “swivel”

Right today I aim to cancel a cataract operation I had arranged as I don’t really think I can justify using the resources for such a short time scale.

Late evening.
Well a very productive day, an amazing visit with Sheila and Steve both real spirit lifters. Also before 11am I managed to fill the rest of the week with Doctors , optician and nurses appointments. Very much Sod’s law in the post was an appointment for the cataract but I’ve mentioned it to the coordination team at the Doctors and they are going to sort it all out.

They are a great group of girls in there, their passing comment today was if you don’t feel up to anything let us know and we will do it for you.

Also got a great video call from Robbie, they are down on Friday, I shall be knackered come next Monday. But it’s just what I need to keep the brain going.
Anyway I think that will be enough for today busy day tomorrow with a nurse visiting. I’ll keep you all informed in tomorrow’s entry.

Day Two , Sunny Sunday.

 

Anyway Sunday is here, not such a great start.I think it’s just kicking in what’s happening, but I expect I’ll get used to the idea.
Just 8 am, think I’m the first awake, I can’t hear any movement down stairs. There’s only me and Chris here at the moment. Btw Chris is the wife. One thing I might have to do is get my medication delivered ready sorted into days etc might make life easier for all concerned, no discussion as to what’s been taken and when.
I hope your not expecting a deep and meaningful entry everyday. As I don’t believe in fairy tales, aka god etc, this is mainly going to be the nuts and bolts of going thro this horrible part of life. Just thinking how I can make use of this patron thing, what to offer etc. I know, how about the gory bits I’ve left out πŸ˜‚, there’s also the leather offerings I make. So there’s a bit of feed back any reader could give.
What leather, can’t be anything large at the moment like handbags. Maybe wallets or key fobs. Everything I do is made from the best hide available so it’s not cheap stuff.

Kids are over at some point today, so that’s always a very good highlight.
Just had a thought, we have a great lady who comes in once a fortnight to do a bit of housework for us, actually she is great at chatting and keeping us up to date with local news as well. It’s going to be an unenviable task of breaking the news to her. I think she is one of those great souls with that hard outer but inside, soft as butter.
Well a few hours have passed and it was a difficult start, I just couldn’t bottle the feelings anymore so I just let it all go, but am feeling a lot better and more positive now.

On a side note as I sit here watching F1 which is much the same again this weekend, how they can make it more interesting? The weather here today is flipping hot again, feels like it’s in the mid 20’s. that’s something readers will have to get used to I use and quote a mix of metric and imperial but I’m sure you’ll get the gist.
Anyway had a brief visit from the kids and it’s starting too get very warm out there now so I think at the moment I’ll call it a day. I may add more later.

The first day of many.

So welcome to the first day of what is going to be a long journey, if I have anything to do with it. Had a bit of a lay in, I had spent a couple of days asleep in RUH, for your information The Royal United Hospital in Bath, in the West Country. I’ve been in there quite a few times over the last few years mainly dealing with either chest infections or collapsed lungs.

This time I think they had an idea it was something else because within an hour or two I had a CAT scan which is where they found this pernicious little bugger lurking in my right lung, liver,kidney and bones (as in right hip and vertebrae).After a rather uncomfortable wait over night the consultant duly came a visiting to give me the news, I am quite pleased to say having had a night tossing and turning putting everything into perspective I think I made his job a damn more straightforward than he expected. At the end of Friday he came by and thanked me for making his day a lot easier, at least I did someone a favour, πŸ˜‚πŸ‘πŸ»The initial prognosis is six months but don’t forget I’m in charge so expect me to be around longer than that πŸ‘πŸ».

Possibly that helped me put forward my case for coming home as there wasn’t anything they could do there that couldn’t be done at home. By the way I am determined to remain here no matter what, as much as the hospital are extremely good at what they do there’s no place like home.

I’ve got a great support team here, my wife, my daughter and son and their respective spouses. They are all absolute stars. Plus there are of course my fantastic grandsons, although they haven’t been told any details, I got the feeling today they are not silly and know there is something a foot. We seem to forget how aware they are, the little humans we are so lucky to bring up.

Anyway that is the end of day one, I expect there will a few more visitors, local of course tomorrow but already know of a few more on Monday are expected from a little further afield. Then as and when, I know there are a lot of very good friends who will get to visit when they can, I’m not going anywhere for a while πŸ˜‚so I’ll just be sat sitting here waiting.

So Sunday tomorrow, hopefully at some point I’ll be able to do another page or so explaining a few more details.