Well, the holiday did kp the world of good, although I think she was already on the up the week before the hols.

On the monday following the holiday, kp and Patti had lined up some interviews for Karen’s new support worker. The plan was to get 2 to cover 56 hours of support. I think there were about 9 interviews.

A good sleep the night before would have helped, but sleep still remains the biggest issue at the moment. And unfortunately, Karen had had ZERO sleep by the time I got up at 7.30am to help her get ready. She was absolutely knackered. I did some quick calculations and worked out she could have 45 minutes and she snapped at it. That’s the sleep for Sunday.

She was very worried when she got up that she would fall asleep during the interviews, but I think the adrenalin of the day kept her going.

The interviews went very well ! Karen used to be a manager and has interviewed MANY many times before and she was pleased that the core skills are still there. What really made her day was that Patti (who runs the company that employ the support workers) said something like …. “We think very alike”….

I think what had happened is that when there was someone who wasn’t suitable, Karen had only asked a few of her questions and then said to Patti….

kp:- “I think that’s all my questions done…”

Pattie was on the same wavelength and knew what she meant. And that’s where the “We think very alike” came from. I can’t tell you how good this made Karen feel. I (and others) keep telling her she hasn’t lost the core Karen, but to get confirmation from Patti (someone official) meant a lot to Karen and it 100% boosted her confidence.

I rang at lunchtime, and spookily, kp was ringing me at exactly the same time ! There was noone suitable so far !

But, by the end of the afternoon, they were spoilt for choice. They recruited two people (Laura and Sharon), but unfortunately, later in the week, Sharon declined the post, worried that she didn’t have the confidence to do it. But, Laura seems great from what kp has said, and she has subsequently been offered more hours which she is pleased at, making her full-time and the balance of the hours is going to another lady called Judith who specialises in fitness so it has all worked out really well.

That was monday.

Tuesday and Karen dropped her Gabapentin dose from 1800 a day to 1500. Couple this with the morphine patches down to 500 (as of Friday), plus Tamazepam down to 5mg from 60 at the peak, she is doing awesome !!

On Tuesday, I also took kp to her physio session with Steve at the local Fitness Centre. That went very well apparently.

kp was desperate for sleep on Tuesday night, so took some Zopiclone (it’s not addictive like tamazepam) and 2 of them saw her get 7 hours.

To give you an idea how bad her sleep is, here is a sleep chart we prepared for Dr Parry’s appointment on Wednesday….

The Dr Parry appointment went really well. kp was very anxious to get some movement on the sleep issues now her depressions seems to be lifting. And she got it. He is starting her on another anti-depressant (as well as the Venlafaxine) but not so much for it’s anti-depressant qualities. He explained that it had 2 other properties, one was a sedative effect and the other a calming effect. She started it on the wednesday night (on a low dose (25mg)) and it didn’t help, but on friday this got upped to 50mg and there’s a LITTLE more evidence it’s working, but it may need to go up higher.

Thursday and Joanne (physio) came to help loosen kp’s left shoulder and we also went to see Jane at the Lansdowne Clinic for kp’s psychological counselling and that went very well. Wednesday’s is Karen’s day off from rehab and this got reinforced as the right way forward.

Friday saw Charlotte (an OT helper) come. She is filling in while we wait for the Support Workers to start. Together, kp and Charlotte put up some curtains, something kp has been wanting to do for AGES !

Saturday and the weather was treacherous and we had planned to meet up with Mum, Dad, Jane, Guy and the kids at the Highwayman Inn near Kirkby Lonsdale. The winds were howling and the heavens were opening and kp (and I) had a scary 2 hour journey to this wonderful pub !!

kp was very relieved to get there in 1 piece. What a cracking pub. The food was awesome and we all had lovely meals ! Despite all the noise, kp didn’t find it too overwhelming, which is good, because in the past when she was on a low ebb, that would have been too much. So, that’s another positive !

Here’s Jamie and Sophie at the pub.

Last night’s sleep was another bad one, and I think she came in at about 4/5am. It’s 11.36am now, so I’ll get her up soon to walk the dogs.

Having to do this from my phone as we have no Internet.

A good week with up in the up and up !

Main issue now is sleep, but despite it still being to pot, she remains upbeat.

Monday,and Laura (one of the new supprt workers) attended to go for a drive with kp to be sure that kp felt safe with her.I sat in the back. There was absolutely no problem with her driving and kp felt very safe. It was my first opportunity to meet her, and she is just what kp needs, friendly, caring and should be a real asset.

Monday afternoon saw rachel (the OT) attend for a big catchup session.

Tuesday was Physio with Steve. A good session by all accounts and kp started doing some work on the cross-trainer kind of machines as well as beating her endurance record on the treadmill and bicycle. Well done kp.

Wednesday was the day off and she and Adele planned some future interior improvements.

Thursday, joanne (Physio) came to do the shoulder-loosening exercises/massage. There’s a big improvement on her left shoulder because of all joanne’s work, so that’s great.

Thursday afternoon and I took kp to see jane at the Lansdowne Clinic. A very good session with kp leaving very upbeat and with definite goals ahead which she is very pleased at. One of the things which was discussed was that Karen would like to to and see her friend in London (veronica aka vd). The idea would be that veronica and I would work together to make it as safe as possible. I would put her on the train and see her off and vd would be on the platform to greet her off the train. Kp mentioned this to jane and jane was understandably concerned that this is a big leap. To fill the gap while we wait for laura to start we have a new support worker that we can call upon from time to time so the current plan is to call upon her (michelle) to make the journey with kp. Another possibility is to do a joint trip to somewhere more local (like York) abdcwirkcupto Karen doing the London trip on her own. This would be fine as long as the train had no problems. But if there were any problems then kp would be in very vulnerable position which is best avoided.

Friday saw another Physio session and this time kp was trampolinig. Charlotte (ot assistant) came in the afternoon and helpedvkp put some curtains up. Syd the case manager came in the afternoon with a temporary support worker (michelle) for kp to meet. We had a good catchup with Syd who was pleased with how well kp was doing.

Saturday was the usual dog walk, tv catchup, pizza and the x factor.

Sunday (today) was a beautiful day and we had a lovely dog walk. Kp caught up with some sleep in the afternoon. Tonight we are going to see the Eva Cassidy Story at sunderland empire so that will be a nice change

Busy week this week, with a real dip (but not in mood).

I went to Lancashire on Monday for an all-day trip to attend the funeral of one of my friends’ mum (Marie Brockbank). To ensure Karen was covered, one of the temporary support workers (Michelle) came for the day and took Karen to Boundary Mill to buy some earthenware. Something she has been keen to do for a while.

I enjoyed the day in Lancashire; meeting up with Marie’s family was a big trip down memory lane for me and it was good to be able to see all my old friends.

Karen enjoyed her trip out with Michelle. She told me that she is a really good support worker and she is well on the way to knowing what a Support Worker should be doing. It is quite amazing that Karen stayed awake all day, as she had only gone to sleep at 6am, until 8am !!

The following day we had arranged to meet up with Marie (kp’s sister). Regularly blog readers may recall that Marie had a dog called Strike (lurcher). It escaped out of a first floor window and wasn’t seen for a couple of months. Well, the other week, someone left it tied to a fence on a main road and rang it in anonymously to the RSPCA. The RSPCA picked the dog up and have cared for it since they picked it up. It had been mistreated. Because it was tagged, they let Marie know that he had been found. In the meantime, Marie had took in another dog from the RSPCA called Tye.

So, she is now in a position where she wants both dogs, so we went over to help her introduce the 2 dogs together at the RSCPA centre at Great Ayton. Unfortunately, when we got there, it was all shut up with a note saying they were understaffed and so couldn’t open today

So, we headed home where Steve (Physio) was visiting for kp’s physio session. We also went to the local doctor’s to get him upto date with kp’s medication and get the repeat prescription rejigged. He was well pleased at how well kp was coming off the medication, which was good to hear (from another official source).

Wednesday’s are Karen’s day off and we try and keep them clear of appointments, but Dr Yellowlees wanted to see Karen to see how she was doing. His secretary had sent a letter (which arrived on Saturday), informing us of an appointment on the Wednesday. It was for 5.30pm in Hexham. Well, we try and avoid rush-hour trips and driving in poor lights as kp gets too anxious, so I rang to postpone the appointment. The letter specifically said to ring if there was a problem. Well, by the time Wednesday lunchtime came, I had rung 11 times without any reply. I had left 2 messages and sent at least one email, but no reply. Karen didn’t want to go, but I thought it the honourable thing to still attend and kp reluctantly agreed to come along.

When we arrived, we sat in the waiting area and waited. We waited about 20 minutes, before someone noticed us and asked what we were here for (as the Day Treatment Centre was now closed). We explained. She looked a little concerned. I got bad vibes. 5 minutes later, Dr Yellowlees appeared. He was surprised we were here and explained that he’s normally somewhere else on a Wednesday and wasn’t expecting anyone, but had come for another patient. He asked to see the appointment letter and was a little miffed at his secretary. Had he not been there, I think Karen would have killed me and I would have blown a gasket.

Dr Yellowlees is great and we had a really good chat with him. He was also pleased about kp’s medication reductions and instructed her to carry on the slow, but steady reduction. The best bit was that he discussed her sleeping problem, and he is of the opinion that there is a good chance kp is suffering from sleep apnoea. When he explained the symptoms, we literally ticked them off one by one, she had all of them !! Jane (Karen’s psychologist) had also mentioned this as a possibility, so a theme was coming through here !

We since did some research on Sleep Apnoea and it absolutely fits the bill…..

When you go to a Sleep Clinic, they ask you things like…..

Well, kp does both of the above !!!

And as for symptoms, here is a clip from the NHS website…..

Obviously, I can’t comment on the last one, but the rest are all definitely ticks….

Here are some risk factors for Sleep Apnoea

…. and what drew our attention is the last one. Early blog entries mention kp with a Grade 4 Larynx (the trickiest one), so this may also be an indicator.

So, we may finally have a diagnosis that is spot on !!! Dr Yellowlees is going to have a conference call with Jane (Psychologist) and Dr Parry (Psychiatrist) to discuss further.

Fingers crossed !!

The following day (Thursday), Michelle (temporary Support Worker) came to take Karen to see Joanne (physio) for her left shoulder work.

She brought her back and we just had time for a cup of tea before Judith arrived. Judith is another of the people Karen interviewed for her new Support Worker posts. She was coming to ensure Karen felt comfortable with her driving.

On Friday, we went over to Great Ayton RSPCA again to try the dog introductions. The first visit (which we didn’t attend with her), didn’t go brilliantly apparently, but this time, it did and they got on great and the RSPCS have ok’ed them being together. So, understandably the RSPCA didn’t want both dogs in the same car boot so early on, so Marie is going to pick Strike up sometime in the next week.

From Great Ayton, we dropped Marie, Louisa and Tye back off at Marie’s and then went to pick Adele up and I dropped them both off in town where they shopped around Middlesbrough.

Whilst they were shopping, I went to pick Ethan up (10 year old great nephew) as we had promised we would have him for the night. I took him to Toys’r'us to get his birthday present. Crikey, he knows how to shop ! We went to Toys’r'us, Game and Argos. We ended up with a football, a football pump and some Harry Potter game. He was happy.

From there, we went to pick up Adele and Karen and returned Adele home, before coming home ourselves. He wanted to stop for a Big Mac which we did. And as soon as we were home, he was on the Playstation.

It’s amazing what effect a kid has on the Pollard household. We are not mentally prepared for the hurricane that is Ethan. He constantly talks. kp and I might be talking about something and he’ll shout out ….

Ethan :- “David, LOOK AT THIS !”

as he hotwires a car and drives over a ramp

Ethan :- “How cools is that”

We will try and restartup the conversation before there is another round of….

Ethan :- “David, LOOK AT THIS !”

We don’t know if we are coming or going.

Whilst he is amused by the Platstation, I got kp in the bath and when he knew she was in the bath, he wanted a bath (‘cos he likes the Jacuzzi bit).

Here he is with a little too many bubbles.

Because he is frightened of the dogs, he wants me to sleep with him. But, he doesn’t really know what sleep is. Sleep is shutting your eyes and shutting up and GOING TO sleep. Not for Ethan. It means incessant chatter. To be fair, we had a really good chat and I quizzed him on his Maths Skills, English, History (which he is very good at), Geography, and Religious Education. Bright lad ! “Needs to learn the meaning of silence and the importance of it pre-sleep” would be my teacher’s report.

The following day at 7.30am (!!) Ethan woke up and the chatter continued. kp wasn’t feeling too well, but we didn’t think anything of it at the time. Ethan was straight on the Playstation and I was happy with that, as I hoped it would pass the time until kp was ready to walk the dogs with us. But, she felt even worse later on (hot/cold sweats). So, Ethan and I walked the dogs (although he wasn’t too keen). Now, when I walk the dogs, I am ready in 5 minutes tops ! Ethan (and apparently most kids now) are very self-conscious. He spent 5 minutes spitting on a comb and getting his hair just right !!! I kid you not ! FIVE minutes for a boy !!

And then he admired his “abs” for 30 seconds.

Ethan :- Punch me here David !

David :- Come on, hurry up, you’re worse than a woman at getting ready.

The dogs were having kittens desperate to get going.

Eventually, we made it on the walk. Here is Ethan up a tree !!

When we got back, kp was worse and didn’t want any breakfast, she just wanted to stay in bed. I was concerned, but too pre-occupied with keeping Ethan amused.

After we had had breakfast and a bit more Playstation, it was time to take Ethan back.

When I got home, kp was in a right state. She felt cold, but sweating buckets, her pyjama tops were LITERALLY wringing wet through with sweat and her hair looked like she had been in the shower. She couldn’t relax and was constantly jittery, describing her stomach as churning inside out. She moved her arms and legs involuntary constantly and was very agitated. She was also very confused. She was convinced Kath (one of her Aunty-type relatives) had murdered someone on a train with an axe. I was VERY concerned and was straight on to NHS direct. I did all their questions and they said a nurse would get back to me within 2 hours. But things got worse, so I phoned the local doctor and after following an automated system, I got put through to NHS direct (AGAIN!). When I explained the symptoms, and that I had rung before, they put me straight through to a nurse.

I then had to go another 20 questions. Whilst I was answering all the questions, Karen was shouting….

kp:- It feels like “Cold Turkey”.

Then it dawned on us, that we hadn’t changed her patches the night before (morphine-based Fentanyl) patches. She is down to 500mg so 2 patches is nearly half the patches. Throw into the mix, that one of the patches on her back had come off, PLUS another was a bit faulty and we had to cut a bit off, she was undergoing withdrawal symptoms. kp was absolutely convinced of it. Before this dawned on us, I was instantly thinking….

dp thinking :- “Right, this is the end, this is her Endocrine System shutting down etc etc…”

Silly me in hindsight, Anyway, I think kp was spot on. We tried to explain this to the nurse, but she had to go through her questions.

Eventually, she thought it could be that, but it could also be other things and said we should go to A+E just to be sure. Well, kp wasn’t having that, she was sure it was withdrawal.

So, with that in mind, Doctor Pollard prescribed a 10mg Morphine Tablet for the speed in which it would kick in , and we redid all the patches which we had missed. And within 90 minutes, she was feeling a bit better. The worst remaining symptom was that she was still convinced that Kathleen had murdered someone and she was very disturbed by this. Shortly after that, she decided that she just wanted to get “out of it” and took at 20mg Tamazepam and went to sleep for the night – And although she got up for an hour, she slept the rest of the night.

Today, Sunday, she feels a lot better. Which is a big relief !

She has took it easy, which was the right thing to do and we are going to do our Pizza Night with XFactor tonight.

So, busy and interesting week and another busy one coming up.

Her mood is still up, her pain is in control. In fact, that is ONE good thing about the Cold Turkey she experienced. She wasn’t in any pelvic pain. This bodes well. It’s hard to work out what level of morphine she went down to because of all the patch issues, but I estimate she was probably at about 200-250 (instead of 500). Which (in theory), should mean that she should be able to get down to that level and beyond. Dr Yellowlees had said she MAY be able to come off morphine altogether which would be awesome.

kp and I have been talking about this today. Noone else is ever on such high doses of Fentanyl. The doctors always do a double take when we say her Fentanyl levels to them. Another good example was Adam’s mum Marie. For her pain she was on 25mg Fentanyl Patch and when Adam upped it to 50mg, it floored her. Now, Karen seems not to need the high dose any more, so why did she need it back then. What I think has happened is that for the first year (when the doses were going up and up), kp has been walking on a badly broken hip. Once the hip op was done, the need for the morphine was no longer there. So, in theory, if that was the case, she should be able to come down substantially. Of course, it’s a layman’s view, but kp’s layman’s view of her problems yesterday were spot on. It’s uncanny how often kp knows her symptoms and their meaning very well and sometimes better than the professionals.

So, despite an awful last 24 hours, things are looking up !!! Life is good !

I have been recording Karen sleeping for the past couple of weeks and sifting through it is a right pain, taking about 30-45 minutes to analyse a night’s sleep, but every so often a gem like this comes along that makes it all worthwhile !

Name that tune !

guessthattunein1

If you are wondering what she says at the end…..It’s….

Karen:- You’re supposed to back me up aren’t you ?

Well, generally another good week.

On Monday, Michelle (the temporary support worker) was due to come and take kp shopping to get all the ingredients for a meal and then make me a meal on the night. I was looking forward to the first meal cooked by kp in as long as I can remember. The idea was she would think the whole thing through, pick a recipe, get the ingredients and then attempt its preparation.

Unfortunately, Michelle fell ill and couldn’t make it, but kp was adamant she wanted to continue with the day as planned. Which we did, me taking the role of support worker and not doing the typical husband thing and doing everything for her. It’s quite hard to do, because if she is struggling with something, my first reaction is to step in and sort it.

So, she picked a meal (Pasta with a Bolognese Sauce) and we set off to Sainsburys to get all the goods. One of the things that I think has helped kp’s mood (aside the new anti-depressants and the increased dose of the old ones) is having some goals and one of her current goals is to “refresh” the living room. She has a theme that Adele has helped her with and she wanted to go to places like Rosebys, Asda Living and Next to see what she could get.

She got lots of things she wanted, but some things required to be ordered online at Next, because they were out of stock in the store. Then, to Sainsburys, to get all the ingredients.

All going swimmingly so far.

When we got back, she cooked the tea and my help was minimal (chopping onions and some help with timing advice). Aside from that, she did the whole thing and it was a nice treat.

After tea, she tried to go online to sort the remainder of the Next home furnishings, but it didn’t go too well. So, she phoned them up, but during the call got very confused as to what she had ordered. She came off the phone in tears, frustrated that she hadn’t been able to understand where she was upto. Very sad !

While I remember, there was a slight cockup with her trip to Roseby’s as well. We have 3 windows in the lounge which she wanted to get tiebacks for the curtains and she came away with 3 tie-backs (when we needed 2 for each window). She was annoyed with herself to say the least.

Anyhoo, she quickly got over the Next episode. Sleep still remains a problem, although is slightly improve because of the sedative effect of the Dolsolupin.

Tuesday saw Rachel (OT) come over. Together, they set more goals and Rachel is typing them up for kp. Michelle came to take Karen over to Steve’s gym (physio) where she did her longest time yet on the treadmill (40 minutes). Well done kp.

Wednesday, kp had booked a hair appointment, which I took her to. Unfortunately, the hairdresser was off sick, so she just got her nails done and rescheduled an appointment for Saturday lunchtime.

On the afternoon, we had planned to go and see one of kp’s ex-work collegaues, pretend-friend Deborah (in-joke). She had just had an operation, so it was kp’s turn to be the supportive friend after Deborah (and Lydia) did such a sterling job when kp was in th’ospital. It was lovely to see Deborah and we had a good catchup and gossip.

Here are kp and Deborah…………..

Thursday, Michelle came to take kp over to Steve’s Gym, where she tried a new wobbleboard which she said was a lot trickier than the old one, which was bloody hard in itself. Whilst she was doing that, I took Marie (kp’s sister) to pick up Strike and introduce him to Tye.

That went very well indeed and they got on great. On the way back from Steve’s, Michelle took kp to pick up the missing tie-backs.

Friday and I took Karen for her appointment with Jane at the Lansdowne Clinic. Jane was very pleased with how well kp was doing and together, we made the decision that kp should take a 4-6 week break from psychologist visits and “consolidate”. I read that, as enjoy being up for a while. A good decision with the next appointment not until December.

Saturday and kp and I had arranged to go to walk the dogs together, because for various reasons, we hadn’t been able to go together for a few weeks. Unfortunately, we had forgot about her hairdressers appointment. There was a bit of a heated debate about that, but she cancelled it so she could walk the dogs.

Pizza and X-Factor finished the day off.

Today (Sunday), kp is on the way to see Veronica (in London). Michelle (Support Worker) is going down with her (on the train) and will come back on a later train. She will then go and pick her up on Wednesday when she returns which is great. We had considered Karen doing it solo, I could put her on the train, and vd would be there to pick her up, but if the train was delayed or anything went wrong, kp would be very frightened, so we are playing it safe.

She isn’t having it totally easy though. The plan is for Michelle to leave kp on her own for a while on the train to see how she copes, so it’s a good test at the same time. Fingers crossed.

So, good week, sleep still to pot, but kp very upbeat and looking forward to seeing vd in London.

Kp’s trip is going really well, all was very smooth picking her up at Kings Cross, return journey tomorrow and expect much of the same. What do girls do when together? Shop till they drop. We managed to boost M&S failing profits buying job lots of trousers and tops that fitted Kp. Kps birthday today has been a series of trips to various Dennison households in the south, age and weather has got the better of us and we are staying in the warm rather than going out on her birthday night. Will miss her when she’s gone.

Veronica