Archive for February, 2008

Day 1006 – 1012. Monday 26th January to Sunday 3rd Feb 2008

Karen’s first day/night in the Canaries didn’t go too well. The problems with the tickets left her feeling very anxious and ill at ease.

Unfortunately, there are no photos (annoyingly) of the holiday because they kept forgetting to take the camera out.

The weather was beautiful all week and the girls had a great time. Each day was a lazy day with appropriate eating/drinking and sleeping. The odd trip to the local market and shops etc…

kp suffered from headaches a lot of the week but she managed to get some migraine tablets which helped.

As for me, I didn’t half miss Karen the first day or two. At one point, I was wandering around the house talking to myself in a posh James Bond kind of voice just to fill the silence. The dogs gave me some funny looks.

After that, I had a great relaxing week, xboxing and watching James Bond films. It was great

But, it was also good to have her home !!


Day 1013 – 1019. Monday 4th February to Sunday 10th Feb 2008

Well, monday saw a big meeting for us. It was the day of the Multi-Disciplinary Meeting. Basically, what happens is, each of the people concerned with Karen’s rehab come to the house to discuss the state of play in their field of expertise and to explain where they are going to direct their efforts. Because they are all there, this allows for discussion and a co-ordinated effort. The lineup of people consisted of ….

Syd (the Case Manager)
Steve (the Physio)
Matthew (the Speech Therapist)
Rachel (the OT)

The “other side” had asked to be there (only fair since they are paying for all this treatment), that’s what we call them. Basically, there was (Barry) a lovely chap representing the Norwich Union, and his solicitor (Nichola).

And, our solicitor was present.

It was a packed house, and a packed driveway. 6 cars. Well, I say cars. There were 5 cars and a Motorhome which Steve had brought. It helped break the ice a bit  when he arrived, ‘cos he came out the side door and it was totally unexpected.

Karen was very anxious before the meeting and I could tell that she felt very uncomfortable with all these people here for (and talking about) her.

It reminded me of our wedding reception. I did a bit (in my speech) talking about Karen, and she held her hand to her face, as a kind of comfort gesture. She was doing the same here.

It all got a bit much for her after a while, and she got upset. We took a fag break (Good suggestion Syd) and she felt a bit better after that.

Anyway, basically, it was very constructive and an opportunity for everyone to get upto speed.

The following day, we had an appointment with a Dr Eldabe at North Tees hospital, regarding Karen’s pain and what we thought would be the Dorsal Column Stimulation (or as Syd called it at the meeting on monday, Dorsal Fin).

He was very nice and was accompanied by a nurse and a psychologist. He asked Karen to describe her pain, which she did. She mentioned that it goes down both her legs and also covers her lower back. She later told me, that she didn’t mean back.

kp:- What do you call this area here ? (she pointed to her pelvis)
dp:- Your pelvis.

It feels like the lower back to her (which it is I suppose). This could be key, because one of the things Dr Eldabe said was that the best treatment for Karen would be “Intrathecal Drug Delivery”. Basically, what this is, is they put a machine under your skin in your abdomen that pumps morphine along a line that goes round to the Spinal Sac area at the back (same place they put an Epidural).  I asked why he wasn’t considering the “Dorsal Column Stimulation”, and he said because it doesn’t do back pain very well.

So, we’ll have to mention this at our next meeting.

Anyway, forget that for a second.

He also asked what medication Karen was on. His jaw visibly dropped when she told him the amount of Fentanyl (morphine) patches she was on. He said mostly people are on 50-100ug patches (changed 3-daily). Karen is on 600ug and that this was a lot. Well, we knew that anyway, but it’s good to have it confirmed.

Back to the “intrathecal drug delivery”. He went on to explain that this device gets fitted, it’s filled with morphine and it pumps it directly to the nerves in the Spinal Sac.  He said one of the big problems that this gets around, that it is targeted pain relief. At the moment, Karen is using  a nuclear missile to kill a fly. Nice analogy dp.

She “kills the fly but gets all the negativeness of the nuclear attack”. She kills the pain but has bad constipation (which she takes 9 tablets a day for), slowed thinking, apathy, lack of motivation, etc etc…..

What she will get, following the analogy on, is a fly swatter, that kills the fly and leaves the rest of the room unaffected.

Her body would be getting a fraction of the morphine (I think he said a 1/100th) and it would be going direct to the pain. She would lose all the negative symptoms which sounded great.

I was over the moon. Karen was NOT !

When Karen gets something fixed in her head, woe betide if it gets changed. She had her sights set on “NO MORE MORPHINE” (with the Dorsal Fin ;-) . Totally understandable. Now, effectively, she was “NO MORE MORPHINE”, as everything negative about morphine would be there. But kp still saw it as “Still on the morphine”.

kp:- I am going to be on morphine for the rest of my life (In floods of tears in the car on the way home).

It was so sad. I kept trying to tell her that it was a good thing, but because it wasn’t what she had her hopes up for, she was bitterly disappointed.

She remained tearful for the next FEW DAYS. And her mood swung 100% in the negative direction.

The rest of the week saw Karen go downhill, with zero motivation, I would say close to a breakdown again. Things were not good.

Karen had also decided not to use the fantastic neuropsychologist Pip, because she needed someone who was keen to take on the case. Pip hadn’t phoned to make an appointment, and she felt she needed someone who really had the time to deal with her case.

Coupled with her down-ness, she felt guilty that she hadn’t been able to help Marie (sister) who isn’t very well at the moment.

So, things progressed downhill. On Friday, we had an appointment with another specialist but it’s not bloggable.

The weekend has been gorgeous weather and it has helped lift kp’s mood a little. Unfortunately, I had to do some work, about 10 hours of it as well, which really got me frustrated as I had promised I wouldn’t work at weekends. As well as it being “pain in the arse” work, I felt guilty about kp being on her own. Aaaaaarrrgh ! But, we still got in a nice walk each day with the dogs.

Here it is. I GPS tracked it with my phone. It says it was 2.6 miles long, but 2 miles of that is in the car to get to the railway line. So, just over half a mile.

That’s it for this last week. Her mood is a little better, not much, but a little.

This coming week is quite a busy one. Here it is…..Dr Millner (btw) is a plastic surgeon and she is seeing him about all of the leftover scars etc from the accident.


Day 1020 – 1026. Monday 11th February to Sunday 17th February 2008

Very eventful week this week, a couple of real highs, and the lowest of the lows.

Monday was uneventful. We like uneventful, we want more uneventful.

Tuesday, Rachel (the OT) came and discussed, amongst other things, sleeping patterns, how to record anxiety levels etc etc….. Matt (the speech therapist) was due to come straight after Rachel, but as Karen had to take a taxi to my work for her next appointment, we had to postpone him.

When Rachel had left, Karen took the taxi to my work so we could go together to Mr Millner (Plastic Surgeon) to see if there is anything that can be done for Karen’s scars, lumps and bumps. The taxi ride was eventful and had Karen in stitches. The taxi driver started a conversation and it went something like this…………(it won’t be funny when I recall it, but Karen will laugh at this in years to come).

TaxiMan (noticing Karen’s walking stick) :- Do you get DLA (Disability Living Allowance) then ?
kp :- Yes
TaxiMan :- Eeeee, i am having ‘nowt but bother getting my DLA approved. They’re asking me to go for medicals and everything.

Karen was flabbergasted that he was even applying for DLA, ‘cos he was walking fine and driving a cab for his living, but she didn’t say anything.
kp:- Well, they just gave it to me. It was very straightforward.
TaxiMan :- Nah, they’re having me go here, there and everywhere.
kp:- What are you claiming it for ?
TaxiMan :- Fallen Arches.

Karen kept her cool and didn’t laugh until she got out of the taxi and told the story to me in the car trip to the Plastic Surgeons (in Jesmond). Karen was laughing so loud, it was an absolute JOY to see. Real hearty laughter. We were still laughing about it when we got home on the nighttime.

The Plastic Surgeon (Mr Milner) was disorganised, rude, abrupt and unsympathetic. He asked Karen what he could do for her. When I asked him had he not received any pictures, he checked his bag and found about 20 of them showing all the issues. His phone then went off, and he started talking to the caller. He would cut Karen’s conversations short and be generally unsympathetic. We have found this before with some of the exceptional medical people that they tend to be like the archetypal Hospital Consultants. Anyway, he gave her a good examination, and said he would write to the solicitor.

Wednesday saw Steve (the Physio) come. It was a lovely day (weather-wise), so he took Karen for a walk and they had a lovely walk, and Karen covered good distance, going about 2/3rds up a field that Karen had previously walked the dogs up. Very impressive. He also got her to fill up the bird bowl but only using her left hand. She spilt quite a bit, but it was good exercise nonetheless for her weak side. That night, she even cooked tea (which never happens) and it was gorgeous – Cottage Pie. First good meal we had had for ages. That night, she had her first good night’s sleep for as long as I can remember. She slept the whole night with just one trip to the loo. Well done KP !

Thursday – Karen had been getting anxious about her bowels, having had no movement for two weeks. I was pleased at the saving on toilet paper. Her anxiety had been building up over the week, with us gradually upping her bowel medication to try and get her moving again, but still nothing.

Friday, it all came to a head. I got a call at work asking me to come home straight away, she was very weak, and really upset. I was home within 30 minutes – Dr Pollard to the rescue. We have a staged approach to bowel issues. She is on 2 types of pills for the constipation that comes with morphine (Sodium Docusate and Senna (3 of each / night). We had upped this to 4 of each over the past few days. Our second stage is called Movicol. It’s a soluble powder, which kp hates taking and so hadn’t taken any (which in hindsight, she should have done). Stage three, if there are issues, are Glycerin suppositories which have helped before and our emergency medication is called Arachis Oil, which is an enema.

It was enema time, we were beyond suppositories. Dr Pollard administered the treatment and then Karen went to sleep for an hour hoping for some movement. She was ABSOLUTELY exhausted. At the same time as all this was happening, Pip (the neuropsychologist) arrived for an appointment. And then while I was all rubber-gloved up, Steve (the physio) arrived for his appointment. Both had to go. A couple of hours later, there was no movement, so I called the District Nurse out. I had rang the local chemist to get another enema in, and the nurse picked this up and administered it. Karen went back to sleep again. Normally, these enemas work instantly. We didn’t see any movement until about 10.30pm at night, which in itself, is amazing. We were over the moon when there was finally some relief for kp. That night, despite sleeping all day (on and off), she had ANOTHER full night’s sleep. Incredible and very welcome.

We thought that that was the end of kp’s problems that week. How wrong could we be !

The weekend weather was forecast to be gorgeous but cold and they were right. But, it made for great dog walking weather. kp loves walking the dogs with me on the weekend, but she “didn’t feel right”. Her walking was poor and she was walking at an incredibly slow pace (much slowed than usual, and it’s normally about 1mph). But she was adamant she wanted to do the usual weekend walk. She had pains in the leg muscles around the groin area. Half-way to the fields where we let the dogs off the lead, I suggested we go back, but she wouldn’t hear of it and she persevered. She got to the bit where I let the dogs off the lead and just stood stationary watching me throw the dog toy. Normally, she would get involved, but I could tell she was in a lot of pain and discomfort. When asked to describe where the pain was, she just pointed between her knees and groin on the inside of her legs.

We are still not sure what was wrong. She spent much of the rest of Saturday asleep.

Saturday night was not a good night’s sleep.

Today (Sunday), things got a lot worse. She came to bed  about 5.30am this morning and slept until about 9.15am. When she got up, she couldn’t walk unaided. I was having to go in front of her and walk backwards holding both her arms as she took the smallest of steps. She wasn’t sure if it was muscular or a bone issue, but either way, it was crippling.

We tried to work out what could have caused it. Had she slept funny, has her medication changed, had the constipation strains took its toll etc etc…. We couldn’t work it out. It was hospital time for x-rays. Karen really didn’t want to go, so we came to a compromise. She would go back to sleep after taking some Gabapentin and see how she was when she woke up. She DID feel a bit better and the walking was improved. She took some more Gabapentin, and we had a 3-hour snooze (I had walked the dogs during kp’s first sleep), and when she woke up, she felt a lot better. Her walking is nearly back to kp’s normal walk, and we think she is out of the woods here, which is a BIG relief !

What caused it ? We aren’t sure. It could be one of the following or a combination :-

  1. Bowel issues caused some muscle strain
  2. Lack of Gabapentin (kp hadn’t taken as much this week as she felt it was stopping her sleeping)
  3. The long walk with Steve, quite a bit was uphill
  4. Sleeping on her left side – she normally sleeps on her right, but she had had TWO good night’s sleep and both of them involved a lot of time sleeping on the left hand side, something she never does !

We will have to keep an eye on it.

So, eventful week. We both hope things improve as the Summer is coming and kp has been enjoying the lighter days, the daffs coming up etc……

Fingers crossed.

Day 1037 – 1043. Monday 18th to Sunday 24th February 2008

An eventful week this week. Let’s start on a positive. Karen is sleeping much better. I think she has probably had 2 full night’s sleep this week, maybe 3 ! When I say full, she may have got up for the loo at some point, but that’s fantastic for Karen to get up and come straight back and carry on the sleep.

Another bit of good news is that Doreen (the Support Worker) starts on Monday March 3rd.

The week really started on Tuesday when everything GOOD and BAD happened.

Steve (the Physio) came and as it was a nice day, he took Karen AND the dogs for a walk. One of Karen’s aims is to do the old dog walk we used to do. There are two dog walks that she used to do. One is about a mile (and up hills), the other is about 3 miles and verging on mountainous at times ! The former affords a view of Esh Winning from the top of the hill and so is very rewarding when you get to the top. Karen DID IT !!!!! She was absolutely OVER THE MOON !!! She texted me she was so excited. Well the day got better than that !

Next came Matt (the speech therapist). He went to work on Karen’s confidence when she talks to people who don’t know she has a brain injury. Together they constructed a starting sentence that Karen can use to set their expectations that she sometimes appears slow. Here’s what they come up with…..

“Just before we start, can I just let you know that I have had a head injury  a few years ago, and I’m a little bit slower with some things, so if you can be a bit more patient with me, that would be great.”

Karen tried this out later in the week when we had to call the Dyson man out and it worked, so she was pleased at that !

Back to Tuesday.

On the evening (6.30pm appointment), we went to see Mr Eldabe (the Pain Consultant) about the intrathecal drug delivery device. He had been thinking about Karen’s case and had come up with a drug that was NOT morphine-based that Karen could use. Karen was very pleased about this (as you can imagine). The only downside is the cost at £6000 per year. The device itself has to be changed every 7 years (at a cost of £7000 + the cost of the operation), so the next step is to get confirmation that the insurers will pay these fees. He has written to Syd (the Case Manager). Fingers crossed. Norwich Union have been great so far. Interestingly, the drug comes from Sea Slugs (from the Phillipines), it is some part of the venom that they use to kill fish which they then eat.

This appointment was in Middlesbrough, so we had arranged to have tea at Michelles. She cooked us home-made chips and steak – very tasty it was too.

And then the bad thing happened. Let me set the scene, it was very foggy, and not the best driving conditions.  Karen was very on edge, and talking all the time, partly to calm her nerves and partly ‘cos she had had one of the best days since the accident.

About 20 minutes into the journey, we were on a dual carriageway where there was a petrol station, and I had been following a petrol tanker for a while (at a good distance). He indicated left to pull into the petrol station, and he turned into the petrol station. He couldn’t get fully in, so part of his tanker was in my lane, so I started to brake slightly until I realised I could get past. So, go back 7 seconds, here is what happened from Karen’s perspective.

kp:- “Eeeeee, I am talking a lot aren’t I ?”
dp:- “You are, well, there’s a lot to talk about today”
kp:- “Is it bothering you, me talking ?”
dp:- “No, but it’s taking a lot of concentration with it being so foggy……”

At which point she looked up and saw the tanker (which I was already braking for, although not enough to stop, because in my head, I wasn’t stopping).

Karen just screamed and went in to what I can only describe as a hysterical fit. She was absolutely besides herself and utterly distraught. AND THE WORSE THING IS, I couldn’t stop as it would have been dangerous with all the fog etc…… She just wailed and wailed for about 5 minutes (although it felt like 2 hours) until i got to a hotel car park where I could stop safely. I jumped out of the car and went round to her door, opened it and gave her the biggest of hugs. She wouldn’t let go and just cried and cried.

We spent about 15 minutes (which is a long time) just hugging and me talking, explaining that we were never in any danger, and that I had already seen it etc etc etc…..

I promised her I would drive really slow on the way back, which I did, so she had to endure an even longer journey home. She didn’t stop crying until she fell asleep (crying) on the night time. She said things like ….

kp:- “I’ll never go in a car again”

God, that would be awful if she meant it (which she did at the time). She got up with me on Wednesday morning and she was a lot better, but still crying and upset. She remained upset for the next couple of days and it was obviously taking up a lot of her thinking time. But, thankfully, time is a great healer, and memories fade and although she hasn’t been in the car with me since, I am sure she will and in fact, she took a taxi ride with Marie to town on the thursday and although she was edgy, she did it and that’s the important thing !!

She enjoyed seeing Marie again, as she has been unwell recently.

Friday saw Steve come again for physio, but he wasn’t 100% so he went easy on Karen which was just as well, as the walk took it out of kp physically and she couldn’t do much for the next day or two. But, the good thing is that she said she WOULD do it again, despite the aches and pains which is typical kp !!

On Friday night, Dave and Helen came over (the couple we met in Egypt and who we are going away on holiday with in a couple of week’s time (Lanzarote) and we had a good night with them.

We stayed up until 2am !! And kp didn’t have a good night’s sleep that night, despite being exhausted when she went to bed. She was up from about 4am until 7am and slept until about 1pm Saturday. We had an easyish day on Saturday, taking the dogs for just a short walk. The usual Saturday night pizza was postponed as we didn’t feel upto it.

Sunday (today), we have had another chilled day. kp sleeping a lot of it, me playing on my xbox, but we did fit in a nice walk on the old railway line. Tonight, it’s pizza night, with Lost and some program celebrating Bruce Forsyth’s 80th birthday. Happy Birthday Bruce – Bruce for a knighthood.

Busy week this week for kp.

Monday, the new neuropsychologist comes on board tomorrow with an hour and a half chat with kp.
Tuesday, Dyson man comes and Steve (Physio), Rachel (OT) and Adele are coming at some point too.
Thursday sees Syd (Case Manager) come to review things
Friday, Physio again.
Sunday, we are going to the golf club for Mother’s day with my family.

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