SECOND VISIT TO OVERGATE HOSPICE

Up at 7:30... need two hours to eat b.fast and shower. Ready right on the dot of 9:30. 
I saw the transport go past twice.. they couldn't find house! Eventually set off at 9:45.

Bright sunny day. Blinds closed at Hospice. Apparently sun gets in the eyes of people opposite the window and is too warm for those by the window... Oh well! Seems a shame not to enjoy the sun... but that's me!!

Asked re menu.. I could see Cottage Pie.. (I hate mince, especially institutional mince). So opted for Jacket pot, tuna mayo and salad.

I then started my interview with Teena... a "getting to know you time". After a short while Jenny arrived. 
Jenny is a volunteer artist who was happy to share water colour techniques. We started with primary colours...... I slipped in I had an HND in Fine Art... we went on to dilution.... Then at 11:55 the table needed to be laid for lunch. But I hadn't touched the paint ! Resolved to get my watercolours out and have a go to show next week.

Escape for Nicotine.... 

Noon, lunch.  Very good, simple, filling!

More interview... 
2:00  Bus arrives to bring me back to Misty Morn.

A short sit, followed by a frenzied lay of table ( 3hrs!!), ready for book group at 8:00.

A great evening, discussing books recently read,  which we would recommend.

Well,I haven't read since diagnosis... can't concentrate... so I did a Victoria Wood monologue, "Giving Notes"... based on an am-dram Hamlet... It went down well, I feel.

All hands to the pump and the house was cleared!!! 

Bed, Shattered!!!

HUG ME, I'VE GOT MND.

THURSDAY 30TH AUG, MOVING DAY

I woke at 7:30, dressed....... took some photos... Elsa arrived at 8:40 and Howarth's at 9:00.. John at 9:30...

We sat, made tea, and I smoked a few cigarettes... until the kettle boiled over and wrecked the packet!! A quick shufty through the unpacked boxes, revealed another packet... was I ever pleased.

So at about one-ish, all was packed, and it was time for me to leave. I felt tense.

The Howarth's men carried me out on my transfer chair.
I got into car, but couldn't effect the lock down for the chair. I had forgotten that the passenger chair needs to be pulled forward, and John was sitting there. Howarth's men made stressful, (to me )comments, like .. Poor lady what if she was alone, and in the dark!!!

Oh dear!
After I sussed that the seat needed to be forward, and John got it sorted, we were were ready to move.

Elsa went ahead to get some lunch and bring to MM.

I arrived. The traffic gods had been with me and no hill starts required on Keighley rd. But he stress of feeling I might have to do a hill start was intense.

So I got to MM. Parked outside, there were 5 people waiting and the Howarth's van. They all said go onto the drive.

As there were so many watching , and I was so stressed, I didn't do a proper swing around. Thus meant I had to do a hill start on my drive.  As ever it (the car) slipped back then jerked forward.. fast.. I nearly hit the house!!!!!!

So, for the first time , I entered my home in my new (wide ! ) wheelchair. I got through door.. difficult.. and simply collapsed.................... totally hysterical..

After a few moment I pulled myself together.

Richard needed to give me important instructions.
Howarth's were putting furniture in rooms.
Friends were buzzing round.

People surronded me, in my new chair it was so,  sooo difficult to move!!

STOP THE WORLD I WANT TO GET OFF!!!!!!

The next few hours are somewhat of a blur.
Liz arrived, Pat had to leave... we sat and ate and drank quite a lot of wine.
Eventually I went to bed, absolutely  shattered , but slept fitfully.


One of the loneliest nights I have ever spent.
I feel as if I have been moved here to die, I feel totally, totally displaced.


HUG ME, I'VE GOT MND

TITLE...YOU CHOOSE....

I couldn't decide on a title for today's Blog,    so thought  I'd give you my list of possibles. do email me nicola.woodman@virgin.net, , or tweet 1949NW, to give me your thoughts:
Possible titles are:  Or have you a better one!!

1. Laugh or You'd Cry
2. Spirometry
3. Hospital visit
4. Porters I Met Today
5. Waiting, Waiting , Waiting
6. Oh,  To Be Independent
7. Hospital Maintenance ! 
8. Gold Medal for Survival!

Today I had a planned visit to the Spirometry clinic at Hospital. At this clinic you blow into a tube which is linked to a computer. You have to do each test 10/12 times sitting, then laying down. You have to breathe long and slow, and hard and quickly.

This test measures not only lung capacity, but more importantly the strength of the muscles controlling breathing. It is a fact that these muscles will weaken. When they begin to I will have to wear a breathing apparatus...................................... 

So My appointment was at 1:45. 

I left home at 12:45.. (Jessica from next door locking the door for me. ( I can't lock the door at the back of my house .The angle of the lock is strange, and I fall if I attempt to do it myself !))

I left home at 12:45. Traffic lights along the valley meant I got to Halifax at 1:35. I managed to get the last disabled parking space. YEY! I tottered to the speaking post, pressed the button to get help. No answer. Pressed again. No answer. Kind lady in pink fleece asked if I was Ok. I explained that I was trying to contact reception to ask for a porter with wheelchair, to get me to my appointment. She kindly said she would notify them.

I waited 5 mins. Thinking she might not have given the message , I rang from my car. Yes, the message had been given. A porter on his way.

It's now nearly 1:50. Two ladies in uniform come out. Can I walk... no, sorry.,,,,A wheel chair has been ordered, but he person before me has been waiting for 20 mins... I'll have to just sit tight.... They promised to let dept know  that I was on premises, but would be late.. Thankyou.

During my wait, many cars pass.. Are you going? (politely) No sorry.. I'm waiting for a wheel chair. (Car-parking is at a premium)................... I made quite a friendship with one woman in a yellow Metropole.. she passed so many times! Eventually she said she was giving up on trying to find a space and just going home..................  Most of us in the parking situation are polite and understanding of the problem... But one man,, U goin! ... (really quite aggressive tone).. No, sorry , I'm waiting for a wheel chair. Then because I simply couldn't resist... I cant walk  .    Perhaps I misjudge him, perhaps he was about to have major lifesaving surgery and needed to park quickly........................Perhaps........................ Oh aren't I wicked!!! 

2:05. A polite porter, in a beautifully ironed shirt,  arrived, no wheel chair.( I mention the shirt because my experiences have been to date, that porters rarely look ironed, and or tidy... sorry,  but they are often grumpy too!)..

Need a  wheel chair?    OH ! Two minutes , I'll get one. At 2:20 I arrive at the correct department.

There I huff and puff. The room is small and has air con. The air seems dusty.. Remember there is a peg on your nose, so air in through the mouth causes you to get very dry. Kind lady technician, Viv, gets me water.

3:30 and the assessment is over. I am to meet my friend Val in the coffee bar at 3:40. So Porter called, and I was assured that it wouldn't be long. But I did think that I would have time to go to the toilet.

So I get out of chair, and walk in my ungainly fashion, 7 steps to the disabled loo............. All well. I finished, let down the side bar  to help me stand..... and it wobbles. I try again... it wobbles... I try again, again, again.... .................Well I've been stuck on many toilets, but never imagined this would happen in a disabled toilet in a hospital! But it did. It had!!

No option, I pull the orange cord. A woman shouts through. Are you OK?    No........ Is the door locked? ...........Yes.............. So the special key is  found quickly.  Door opened... it opens directly on to the waiting area... so potentially all   could see me sitting on the throne!! . Door closed quickly though, and the helpful woman, supported me up!!

I'm way beyond feeling embarrassed about things like this. I feel it says more about hospital maintenance than about me!!

Please note all medical staff, and support people behaved impeccably, and did all they could to help me with understanding and kindness.

Porter arrives.( Shirt OK, but grumpy).  I ask to be left at the coffee bar, by reception, as my friend would take me to my car. I asked to be left at the counter. He did................ a meter away,........... then put the brake on the chair( health and safety????)............... Stranded!.............. Kind man,  seeing the predicament pushed me into place. Coffee ordered and sandwich, (you cant eat before the test and I was starving). Woman behind counter says she'll bring over snack. Thankyou says I... But I'm now stranded at the counter. Kind man still behind me, but hasn't noticed my predicament. I turn to him, and politely ask if he will push me to a table. It was then that I found that he was deaf. (what else would he be!, NB Not a comment on deafness, which must be awful, but rather that of all the peoplein the world I choose him!!!). .... but his wife heard, and signed for him to help. Which he kindly did.

Val arrived. We sat and had a natter. FOR AN HOUR, I'M NORMAL!

Home at 5:55. Five mins early, I have a GnT.... may have another after this. Then bed I guess. I'm sooooooooo shattered. Think I've won a gold medal for survival!!

I cant wait to be more in charge of my own destiny, a wheel chair in my car will so help... its on it's way!!!!

HUG ME, I'VE GOT MND