WASH DAY

As Mick had his kitchenshower last night there was a ton of washing to do today. We always end up using every towel in the house so the washing machine has been working overtime. Thank goodness it was a nice windy morning so that I could get them out on the washing line for a while; saves a bit on the electric that the tumble dryer uses. Mick managed his breakfast quite well and is making up for the lack of bowel movements at the moment. Phoned the doctor yesterday morning to see if there was anything that could be done about the mucus build up in Micks throat. He so enjoys his food; it is so sad to see him choking on it when he is hungry. The doctor said he would try to drop in the next day. This has been going on for a year now and I know that Micks lungs must be full of something nasty because of it. Anyway, the doctor did turn up this afternoon but didn't know of anything that would help that wouldn't make Mick more dehydrated. He is going to have a word with someone at the local hospice to see if they have any ideas. He did listen to his chest and said he is a little chesty but not too bad.

HELLO!

What a wonderful start to the day today. My darling said "HELLO" to me and then said"HELLO" to Manda! That was all he said, but to us it was like he had just read the whole of "War and Peace" out loud. Why it is that approximately once a month he manages to come out with a word I dont know; but believe me it is worth waiting for and stops us from doubting that he remembers who we are.

I was especially pleased for Manda. She is off to Bury St Edmunds for the first day of a First Aid training course (I expect she will be hitting Toms first aid blog a few times this week) and she was worried about being out of touch with us as she would have to turn her mobile off. I know hearing Mick speak will have sent her off with a happy heart.

Couldnt resist taking this pic of Mick; think he is looking quite pleased with himself! Tracey (our hairdresser) is coming round to give him a haircut and then Manda and I will give him a kitchenshower - so its going to be a busy evening.

OUT AND ABOUT

We had to cancel our "with transport" trip this week because Mick was having a few really poorly days. As the clocks went back last night and we gained an extra hour I thought we would make the most of the glorious sunshine and go walkabout. Had originally intended to just have a short walk round the block but Manda and Chris said they would come with us so decided to do the long trek into Sudbury town. As we hadnt been into town for quite a few weeks it seemed strange (especially on such hot sunny day) to see all the christmas decorations for sale already. Had a little nose around a couple of shops; making the most of having Manda and Chris to carry the shopping! There was a police car and a forensic team near one of the pubs with a "do not cross" tape up so I reckon something nasty must have gone on last night. We decided to walk part of the way back home via the park and I noticed this new (to us) tree carving. It was really impressive. The whole journey took us about three hours but was worth the effort. It is easy to go a bit "stir crazy" if I havent got out at all for a while.

CHAMPAGNE AND ROSES

And the nominations for OSCARS (I Ought to Send Champagne And RoseS to them) are, in no particular order :-

• the locum doctor who (after 2 months of being seen by own doctor) took one look at Mick and within 48 hours had arranged an MRI scan, an appointment with a neurologist and a hospital bed
• the nurse at Papworths who, being so disgusted that our doctor and district nurses had refused to help until the referral came through, had WORDS with them to get them to give us some help
• the Red Cross which lent us a wheelchair so that I could get Mick out of the house
• the Macmillan nurse who (although Mick was staying at home and not going into a hospice) brought us some incontinence pads when I was unable to get them
• the jeweller who (when I explained about Micks wedding ring cutting into his finger) came out in his own time and cut the ring off and refused to charge for doing it
• my neighbour (Sue) who (although we had previously only exchanged pleasantries) turns up on the door step once a week with a ready made cup of tea for me and ALWAYS speaks to Mick
• the local community transport drivers (all volunteers) and company who give us the ability to get to get to town or a local garden centre without having to waste 2 hours walking to and fro
• technology; which has meant that I can do online shopping
• the local mobility centre for telling me that the cheaper brand of incontinence pad was equally as good as the dear one
• Steve for building a ramp (when O.T. said they wouldnt) and being our general handy-man
• Chris who is always on hand for carrying shopping and is the ONLY person strong enough to push Mick UP the hill from the Maldon Grey
• Rob for all his help with my computer queries; it wasnt that long ago that I didnt even know where the ON button was!

BUT THE WINNER IS........................................................

(big pause)

(hold your breath)

(the suspense is too much!)

(can you wait?)

MY DARLING HUSBAND, MICK

whose courage and determination to live is a lesson to us all

NB

Those of you wondering why there has been no mention of our daughters in the above nominations. Well the answer is simple!

No words could ever be said to convey to you, dear reader, the unfailing love and support that they have given us.

No riches would ever compensate them for their tireless devotion.

Lynn, Leanne and Manda (my rock)

*"Blessed indeed is the man who hears many gentle voices call him father!" ~ [[Lydia Child]]

WHAT A WHINGE THAT WAS!

To those who read my last post :- I am a happy little soul really! Will make up for all that complaining in my next post which will be entitled "Champagne and roses"

MOANS AND GROANS

Found it quite therapeutic writing the "DAY IN THE LIFE" posting. Wish I'd thought about putting in to words all the things that have happened over the last 17 months that have made me so angry and frustrated - it may have helped keep my blood pressure down! As so many of these things still rankle so much I thought I would do a "moans and groans"; posting. Please feel free to skip this; it is purely a chance for me to get things off my chest. So here goes:-

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*The doctor who fobbed hubby off with pain killers for 2 months when he complained of headaches, blurry vision and loss of memory

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*The referral from the hospital to our local practice taking 2 months (which meant we could get no aids, i.e. wheelchair, hoist, commode etc, and meant I had to physically lift my 6ft 2" 14 stone husband to move him)

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*Having to buy incontinence pads because the District Nurse said "it takes 6 weeks, so not worth it"

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*The District Nurse who said she would bring some incontinence pads from their stock cupboard and forgot

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O.T. saying that they could not put a ramp or stair lift in as "it wasnt worth it"

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*The District Nurse who said she would arrange for a ripple bed to help prevent pressure sores; and took two weeks (and countless phone calls from me) to remember to order it AND put the order into the "non urgent" category

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*The District Nurse who phoned and asked how my husbands feet were that she had looked at the previous week (TO THIS DAY NO DISTRICT NURSE HAS EVER TOUCHED MY HUSBAND LET ALONE LOOK AT HIS FEET!)

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*The District Nurse who, when I phoned and asked for help as my hubbys hand was so clenched his wedding ring had cut into his finger and was inflamed and possibly infected, said "that's not our problem"

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*The fact that; despite my continually saying how difficult it was for my husband to swallow drinks without choking and my fears about him becoming dehydrated; it took 6 months for the District Nurse to tell me there was a product called Thick and Easy which thickens liquid for people who have difficulty swallowing

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*The Doctors Receptionist that insisted I get my husband out of bed and wheel him to the surgery when I feared he had a chest infection; because one of the doctors was on holiday and so they were too busy to do a home visit

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*British Telecom who took two weeks in August to repair our phone line (any one experiencing similar probles may like to visit http://www.btsuck.org/ )

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*British Telecom who (despite my having signed up for priority service) took almost a month in September to repair our phone line

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*The drivers of the cars who park right across the slopes in the pavements so that I have to bump hubbies wheelchair down the kerb

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*The Doctor who asked if hubby scratched himself a lot when he had a mysterious rash (HUBBY CANT MOVE!)

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*The local bus company - not one of its buses we've got on has had the pull-down wheelchair ramp working (or so the drivers say!)

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*The anonymous neighbour who keeps filling my gardenwaste bin with THEIR garden waste so that there's not room for mine - I PAY THE COUNCIL FOR THIS SERVICE!

***************

This post in no way reflects on the N.H.S., British Telecom or the British Public as a whole.

I HOPE!

A DAY IN MY LIFE

Any visitors who have already read this post in my "Me, my life, my garden" blog can skip this. In case you haven't click below for a wee glimpse into my average day

A DAY IN MY LIFE <------CLICK HERE

BAD DAY GOT BETTER

What a strange life it is! Only a few short hours ago I had written a post bemoaning the fact that my poor darling was having severe bowel problems and trouble eating and now ALL IS WELL! Not only did my husband manage to eat a bowl of soup with some bread and TWO yoghurts WITHOUT choking; wondrous things have also happened with his bowels. After nearly TWO weeks he has had a movement! All that worry and now I am sitting with happy thoughts with my darling sleeping peacefully beside me. I know the movicol, prunes, yoghurts and juices along with his and my perseverance will have had a lot to do with this success but I also think that somehow; in the mystery of time and space, the good wishes and kind thoughts of my blog visitors like Mousie, Ruby and IC2U2 have played their part. It is so good for me to know that I have special friends to share my pains and joys with. Thank you from me and (let me formally introduce him) thank you from my dear husband Mick.

BAD DAY TODAY

I had hoped that my first non-introductory postings to this blog would be ones briefly going over the last 20 months and explaining in some sort of chronological order what had been going on in our lives since hubby first started getting his "headaches". Today is such a bad day though that I need to write about it and get it out of my system.
My poor darling has not had his bowels open for nearly TWO weeks now! It is starting to affect him very badly. He is finding it even more difficult eating and drinking and is choking all the time. His appetite levels have dropped so much; the steroids he is on are prone to increase his appetite usually. He is bringing up lots of clear mucus which I think could be digestive juices and at times is groaning with stomach pains. I feel so helpless. It is impossible to sit him on a commode; he would not be able to sit upright on him and besides there is no way to get him ON one. I try to explain to him that he has "special padding" (incontinence pants) on and that its ok to to DO it while he is sitting in his bed but it is so difficult for him and I'm sure he is trying to hold it in; especially when there are visitors around. I know I wouldnt be able to "do" it sitting on a bed or in a chair. Also the fact that it is so difficult for him to swallow and get liquids down is not helping. I have done everything I can to give him foods like prunes to help him. We have Movicol powder which I mix with liquid; this helps to soften the feaces but, because of the difficulty in swallowing and the stomach pains it gives him, this makes him choke even more. I am sure a lot of the liquid goes down the wrong way and am sure that some of it will be in his lungs! It is heartbreaking to sit and watch him suffering.

WARNING!!!!

Before I start writing this blog in earnest I must warn you that this is my "no holds barred" blog. It is not for the faint hearted or the squeamish. Although I hope it will contain some "smiley" entries I know that many of my posts will be of sad events over the last 18 months and of sad events in the days to come. There WILL be mention of bowel movements and vomit. There WILL be tears. So should I make this blog a private one and allow NO visitors?

Maybe I should.............................

But then again.................................

maybe reading this will make someone happier with their "lot"

maybe reading this will make someone feel less alone coping with their problems

but most of all

maybe reading this will make YOU realise how precious every moment is that is spent with those we love

A NEW BLOG

Now that winter is approaching I have decided to create a new blog. I will use the "Me, my life, my garden" blog to post more about our garden with little stories and bits of information about our garden during the past years. This new blog is going to be a sort of diary going into more detail about our lives since hubby was diagnosed with brain cancer. I hope that by doing this visitors interested in gardening wont be bogged down with information about hubbys condition and, vica versa, visitors interested in the "caring" aspect of my life wont have to go through all the gardening posts. Of course the two blogs are very much part of the WHOLE story of our lives and I hope that many of you will visit both.

http://ruthjen.blogspot.com/