Archive for September, 2007

Day 852 to 857. Mon 28th August to Sunday 2nd Sep 2007

Well, kp was off to “sunny” Prague this week with Ronnie and Jane. kp and I love Prague and had always sung its praises to everyone. No more !!

Although the girls had a good time, they experienced another side of Prague, which will mean we won’t be going back.

The palaver started on the evening they got to the hotel.

The Hotel, btw, was the Hotel Jalta (off Wenceslas Square). It was picked because it was 4-star and close to the attractions. Normally, we stay a bit out of the centre and take the trams in, but that’s tricky for kp now.

Anyhoo, kp was knackered and wasn’t up to going out for a meal, so they decided to order room service. It arrived at the room and the order was wrong. This happened a further twice !!

By the time the third attempt came, it was clear that they were rewarming the correct dishes in the microwave as the salad garnish was wilted and the sauce congealed on the plate. Enough was enough and they ate what they had been given. When they came to drink the tea they had ordered, there was no milk, so they rang down for milk, and a New York lad who must have been on a year out from University, came up.

He brought the milk in and the tirade started……

Waiter :- “You are really messing us around now, we are getting sick of you downstairs.”

Ronnie :- “I beg your pardon”

The girls were agog, but he continued…..

Waiter :- “Your kind shouldn’t be staying in a hotel like this.”
(I think he meant that they were too common for the hotel).

Ronnie :- “Look, just give us the milk. I think you should leave the room”.

Waiter :- “Can you sign for the milk ?”

Jane :- “I don’t think so.”

Ronnie :- “Please leave the room. We are not signing for anything after that kind of abuse”.

Waiter :- “Well, should I pay for the milk, then……”

At that, he started delving into his pockets to get out the 50p for the milk.

Ronnie yelled at him to leave the room, and he did.

Needless to say, the girls took this up with the manageress and found a bottle of Champers in their room on a later evening.

You would think that was as bad as it would get, and service-wise it was, but the quality of the food wasn’t what kp and I had previously experienced.

They also had an incident with a taxi driver who took them on a 5-minute ride to the hotel, and then told them it was £20 (or equivalent Koruna). kp started to get out the money, but Jane (the human ready reckoner) said “No, that can’t be right”.

kp put the £20 (or equivalent) away and got out something smaller (£10 equivalent). He snatched this, jumped out of the car, ushered them out, and threw kp’s wheelchair out of the boot onto the pavement and sped off. The trip should have cost £5 (for the distance travelled).

So, not the nicest Czech welcome, but the girls, in their usual fashion, made light of all these incidents and in one way, it probably made the holiday, ‘cos of all the laughs they had about the incidents.

The other thing of note, is that every night, kp had a magnificent sleep, which goes to show that if she is kept busy during the day, she sleeps like a log :-)

She came home absolutely knackered. She slept from before the takeoff until after the landing, and all the way home in the car.

We are now minus an NHS walking stick and a hair dryer stand as she left these in a disabled loo and the hotel room (respectively). Thankfully we have a walking stick we bought in Lake Garda as fallback (the brown one that Jane borrowed in the photos below).


Day 858 – 864. Mon 3rd Sep to Sun 9th Sep 2007

Not the best of weeks.

Sleep and Pain remain the predominant issues and they are becoming bigger as each week passes.
First of all, pain.

Karen has been having about 350ug of Fentanyl an hour. We normally apply 250 patches on the 1st day, and then on the 3rd day, we give her a 100 patch top up. This is the cycle we have been doing for about 2 weeks. We went to see the doctor this week to reflect this upp’ed dosage, but unfortunately, the maximum Fentanyl is supposed to be 300 :-(

Obviously, this is a concern, as the patch dosage has been on the up for the past 2 years, and we are kind of at the limit :-(

The prescription now allows us to apply 300-strength patches every 3 days. Karen has the morphine tablets for top-up pain relief and we will just have to see how we go, but we are both concerned about where we will be heading over the months/years ahead.

The biggest issue to Karen at the moment is sleep, or lack of it.

Last night for example, she didn’t come to bed AT ALL. She is knackered now, and will be going to snooze shortly (4pm when I write this), but then she won’t sleep tonight. She was supposed to be going to see family in Marske tomorrow, but she has had to knock that on the head, because she knows she will be knackered. With that comes a lot of guilt for Karen, ‘cos she had to miss the recent family gathering as well.
Today, we went to Tesco and TK-Maxx to look for some suitcases, but no sooner had we arrived than we had to come home because she was having cold sweats and felt out of sorts. :-(

So, kp not in a good place at the moment.
On top of all that, she has been trying to sleep by taking 3 Zopiclone on a night. It leaves a metal taste in her mouth and she hates it, but it’s the only way she can get some zzzzz’s. On friday of this week, she woke up and rang me and she was talking gobbledygook for the first 5 minutes. I was very concerned. I was having to tell her (over the phone) what to do to get ready for the shopping trip with Marie.

dp:- So, here’s what you need to do. Get in the shower, put your clothes on, dry your hair, and then wait for Alan (taxi-driver) to pick you up).

kp:- Are you not drying my hair ?

dp:- No, I am at work love. Remember, I sellotaped the hair dryer onto the mirror for you. (kp left the hair dryer stand on her recent hols).

Very sad. The good news is it all went to plan and she met up with Marie to go shopping.

Saturday (yesterday) wasn’t the best of days. I am pretty sure it is the Zopiclone or the lack of sleep, but Karen is so irritable at the moment. I say Black, she says White. Quite hard to live with (to say the least).

But, she apologised this morning which was nice. Roll on the Egypt holiday.

Day 865 – 871. Mon 10th Sep to Sun 16th Sep 2007

Sleep and Pain remain the predominant issues. Karen has had some contact this week with a rehab consultant, who sent a letter to her advising her of the do’s and don’ts of sleep problems.

Drink lots of water during the day, no caffeine drinks close to bed time, no watching tv if she gets up in the night, and the most important one, don’t stay in bed if you can’t sleep, as you’ll associate not being able to sleep with bed. Hit a chord that one for both of us. She has tried all of the above this week, and although she had one good night (not good, by most people’s reckoning), it remains an issue.

She has been going for a short walk each day to try and tire her out as well.

Part of the new routine with Adele is to take the dogs out when she comes over (3x a week).

Karen did a Tesco (online) shop this week. First (and probably last) time doing it on her own. I think we totted up 6 items which she had ordered incorrectly….

Butter (Right type, 1/4 of the normal size !)
Orange Juice (No pulp, and half the normal size)
Crumpets (enough to supply Esh Winning for 2 weeks)
Bacon (wrong type, not enough)
A 5-pack of Fusion razors turned out to be 1 fusion razor pack (£10)
I can’t remember the 6th, but not a successful shop.

We had a good Saturday yesterday, lovely walk with the dogs, nice snooze in the afternoon.

Today, mum and dad made the trip up from Lancashire and we went to the Royal County for lunch. It was nice to see them.

kp is now knackered and snoozing. No doubt, she won’t get much sleep tonight.

Unfortunately, I have had to switch off the ability to post comments on the blog. Last week, there were 245 blog comments awaiting approval. I got through about 50 and they were all spam. Sorry if anyone has tried a legit blog comment. If you want to discuss the blog, please email Karen direct at kp at Thanks

Day 872 – 878. Monday 17th Sep to Sunday 23rd Sep 2007

Little funny I forgot to record in last week’s blog.

Mum and Dad came up for Sunday lunch. Dad was telling us a story about mum discussing with their friends about a recent trip abroad. When asked which airline they flew with, she meant to say “Lufthansa”, but her reply was …..

Mum :- Luftwaffe


Sleep has been _marginally_ better this week for kp, and we have the pain nicely in check. So, that’s good. kp arranged for the carpets to be cleaned this week, and she went on a shopping trip with Adele to view some blinds. The weather wasn’t too good when she went, and the heavens opened. kp wanted a fag, and a nice lady said kp could have a fag in her shop entrance. kp ended up buying £50 worth of soap from the lady !!! Expensive fag !

Yesterday, kp slept a lot, but we had an “ok” day. Today has been better, and we went to the Metro Centre for a few errands. One of the errands was to get Karen an eternity ring, something I promised a while back, but we never got round to it…..Sorry about the blurred photo. kp was pleased.


Another errand was to get a couple of webcams for our neighbours Tommy and Eileen. Their son, Keith, and his family are emigrating to Australia on Tuesday, and we thought a webcam each would be a good pressy to allow them to keep in touch. It went down well.

So, good little outing.

kp is a bit knackered now.

She is starting to get a bit fidgety about her future (or as she sees it, a lack of it), so we are going to need to work on that.

Day 879 – 885. Monday 24th Sep to Sunday 30th September 2007

More frustrations this week with the solicitor. Still not delivering on his promise to be upto date with communications. We told them weeks ago to get a Case Manager (for Karen) organised. No communications at all this week, until we prompted them.What is a Case Manager ? Well, it’s someone who handles all the parties to get the right care in place for Karen. We are led to believe he (Syd is our one, we haven’t meant him yet) will arrange house help, occupational therapy, cognitive behavioural therapy, psychiatry, physiotherapy, etc etc etc….. It sounds great, and should get kp back on track so she feels more in control of her life. At the moment, she relies heavily on family and friends to get out and about. This may bring back a feeling of independance or that is the hope.

Anyhoo……..It turns out the Case Manager was waiting on formal direction from the solicitor. The solicitor hadn’t even sent a letter formally directing him. It makes me very angry and I have had to hold back on the expletives. We are paying them a f+cking fortune, and they show piss poor performance. This is holding back on the expletives !!

I am that close to going to some other solicitor.

kp’s sleep and pain issues remain, although not as bad as previous weeks. She loves her new eternity ring. She is looking forward to visiting Egypt with me next week and some hot weather, which eases her stiffness etc….

Marie and Glenn returned from their holiday this week and came through to see kp. That was a nice visit. We went to the doctors on wednesday or thursday to try and up the patches to 300 Fentanyl but every 2 days instead of 3. No joy. They wouldn’t go any higher :-( She is doing 300 every 2 days anyway, and we will carry on with that until they cotton on that we are asking for quite a lot of repeat prescriptions. Instead, he has referred her to the Pain clinic. So, we are in the process of booking that appointment at the moment.

Nice weekend. Jobbed on today, and had a nice family day yesterday. Here are some fotos of the family members we saw…..

Abby and Louisa


Edna (joining us at the table for a chat)


Jake (at the table)



We slept in separate beds friday and saturday night to see if it would help kp’s sleep. It did on Friday, but not so much last night – so we’re back together now.

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