Email exchange with Macmillan Nurse

Over a series of emails between Rachael and Claire (Macmillan Nurse), Claire enquired about suction machine and medication. Claire agreed to send letter detailing new arrangements for enteral administration of medication.

November 2011. In which my sister visits from Australia and I go camping.

01/11/2011. 4.41am

some passing glass sensation but weaker than previously waking me but can return to sleep fairly stiff joints

01/11/2011. 7.56pm

Catheter change was more painful than usual Sister and family visiting from Australia in the evening - tiring but wonderful

02/11/2011. 5.38am

Worn out can't sleep position pain passing glass sensation cold teeth chattering bit the side of my tongue

02/11/2011. 8.07pm

Another bizarre day carer off sick went to the zoo with p.a. and his son and met sister and family visiting from Australia.

03/11/2011. 1.12am

restless and uncomfortable bottom very sore finding it hard to sleep after staying awake waiting for daughter to be dropped home after a gig.

03/11/2011. 8.38pm

Extremely tired today. Also getting jittery about some financial concerns. Didn't eat as well as the previous few days.

04/11/2011. 3.17am

Positional discomfort sore bottom legs heavy too hot dehydrated feeling of impending panic can't sleep.

04/11/2011. 8.32pm

Superb hydrotherapy session with proper physiotherapist! Unbelievably relaxed and loose limbed. Can't stop smiling.

05/11/2011. 5.49am

Slept deeply and woke only once for moving. Feeling refreshed. Knees feel easier quads less tense.

05/11/2011. 5.09pm

Mmm humus and Emma's chillis then Tom's stew and Maggie's bread. I've nearly burned my face off but what a good do.

05/11/2011. 10.31pm

Wind in my face friends and a bonfire that couldn't be beat Surround sound pyrotechnics steaming bowls of stew apple pie and cherry brandy.

06/11/2011. 5.17am

Lovely deep sleep woke once for more blankets and once for moving Straight back to sleep Sore bottom feels like I sat on a Tonka truck.

06/11/2011. 8.37pm

Daughter quite unwell with sore throat headache and earache making her dizzy I'm ok.

07/11/2011. 5.19am

Woke a few times with sore skin under my bottom dehydrated night bag nearly empty but passing a fair bit (tsp) of blood.

07/11/2011. 7.57pm

Shattered. Daughter still ill. She slept all day. Tech support came to tweak my environmental controls.

08/11/2011. 6.42am

Someone robbed half the night! I woke shattered with an aching thigh as if someone kicked me.

08/11/2011. 12.58pm

Dribbling like Beethoven but mightily relieved that my daughter is in greatly improved health.

08/11/2011. 9.17pm

Daughter's parents' evening went well. My sister from Liverpool deputised for me She was formidable.

09/11/2011. 5.57am

Reasonable night slept well enough with a few wakes in position pain Legs and hips quite stiff.

09/11/2011. 6.48pm

quiet day at the computer. Bit of a choking episode at tea time All well again now but worn out.

10/10/2011. 5.04am

Can't stop grinding my teeth. Legs twitching like mad despite extra baclofen.

10/10/2011. 8.52pm

Where did the day go? Lovely carer doing bits and pieces with me Daughter was a thing possessed as she prepared to go to a gig in town.

11/11/2011. 6.41am

Good night until I woke with cramps twitching spasms and dehydration to find the eye gaze switched off and panic button out of reach

11//11/2011. 9.29pm

Shattered after a fun but freezing day in the garden with my p.a.

12/11/2011. 5.17am

some positional discomfort now really quite unpleasant but slept straight through, which is a rarity.

12/11/2011. 8.43pm

Slow day tired and sluggish Didn't do much but a good shower and bowel movement.

13/11/2011. 1.07am

First night back on feed - hideous stomach ache! Need to bend double but can't.

13/11/2011. 8.51am

Took feed off and after two hours of severe sharp pain the stomach ache subsided. Still feel dodgy.

13/11/2011. 5.17pm

visit from long lost friend really brightened my day. Lovely hour snacking with daughter over her revision

13/11/2011. 8.57pm

clucking like a junkie. Mis communication has led to a carer no show. on way now but late

14/11/2011. 5.44am

Muscles tense and twitching slept fitfully in great discomfort no feed no stomach ache is a bonus though

14/11/2011. 8.51pm

Fun day with carers time flew ate well no pain well looked after

15/11/2011. 6.35am

Slept from early evening in my chair. Well rested but a tad dehydrated.

15/11/2011. 5.51pm

Pampered and groomed for the weekly shop with carer. Grinding teeth still an issue.

16/11/2011. 3.57am

My sleep pattern is out of whack. Woke with position pain and found it hard to get back to sleep Slept early evening

16/11/2011. 5.49pm

ate well worn out after trip to the market. I was scared when my driving arm failed and I could not work the joystick

17/11/2011. 3.07am

strong shooting pain in my urethra

17/11/2011. 5.57am

Still can't sleep. Waves of pain every few seconds. Blood clots in catheter. Lessening but still unpleasant

17/11/2011. 10.34pm

Hideous stomach cramps and back ache continued all day with fatigue. Slight indication of menstrual show was a relief

18/11/2011. 4.39am

A fractured night with some discomfort but long periods of much needed sleep.

18/11/2011. 6.49pm

No hydrotherapy until Monday. It's inconvenient and I'm not keen on change.

19/11/2011. 4.54am

Woke up a couple of times aching and in need of a position change otherwise slept well

19/11/2011. 10.46pm

Wrapped up and braved the garden, whilst carer prepared it for winter. Take away tea with daughter 1 choke, several naps

20/11/2011. 5.04am

Shat myself. Took a while to get me changed and into bed. Sore, skin red and blistering.

20/11/2011. 6.35am

Unexpectedly fun day pottering around the house. Tired now but wonderfully well cared for. Minor choking incident at lunch.

20/11/2011. 9.01am

Sunday carer is off sick. Lovely cover carer is showering with care and my bottom feels  much improved.

21/11/2011. 6.40am

Quiet restful night. Woke 3 or 4 times for rearranging my position and moving my limbs but no problem getting back to sleep.

21/11/2011. 9.02pm

Hydrotherapy was wonderful and much needed. I saw an OT about a further ceiling track and made a delicious stew with my PA.

22/11/2011. 4.53am

Slept well. Woke feeling dehydrated and groggy with sore buttocks. Need the toilet.

22/11/2011. 11.23pm

Calm day conserving energy for the evening. Theatre was great fun despite BM midway through the second act!

23/11/2011. 6.13am

Slept through with 1 wake. Sore labia from sitting in wet BM for hours last night but worth it.

23/11/2011. 6.01pm

Made bread pudding with carer Tired but well fed quite twitchy in triceps, deltoids and adductor muscles

24/11/2011. 3.19am

awoken by severe sharp pain between buttocks as though I had been goatsee'ed, torn asunder. The bottom sheet had slipped.

24/11/2011. 7.47pm

Hectic day of visitors waxing pie competition and being the taxi of mum!

25/11/2011. 2.41am

Slept fitfully and could not find a comfortable position dehydrated and constipated.

25/11/2011. 7.23pm

Another busy day with medical visitors and preparing food/packing for camping trip.

26/11/2011. 5.00am

Fairly uneventful night one minor choke sorted by able carer.

26/11/2011. 11.47pm

This yurt is awesome! I'm camping with 2 carers and the partner and son of one of them.

27/11/2011. 3.34am

Howling gale outside has crept in through the top panel, the fire has gone out, my nose is frozen and I'm stiff. Thankfully I'm drunk.

27/11/2011. 5.21pm

shattered but well worth it. Superb care, improvisation and fun.

28/11/2011. 4.08am

Everything aches but I expected that. Carer watching for choking like a hawk. It's worse when I'm tired.

28/11/2011. 7.51pm

Surprised by wheelchair engineers this morning, hydrotherapy pm then several naps later time for an early night.

29/11/2011. 3.37am

feet freezing struggling for breath still so tired and slightly headachy carer concerned but it will pass.

29/11/2011. 7.02pm

Relaxed after hilarity. Tuesday carer sick but Sunday carer stepped in.

30/11/2011. 2.47am

Quite a scare when a power surge tripped the fuses. All my equipment off and beeping.

30/11/2011. 5.11pm

Another restful day. Grateful that strikes caused postponement of routine blood tests. Still achy, diarrhoea.

Email Received from Physiotherapist

A emailed to set appointment to show how to use the suction machine. Appointment set for 17/11/11 at 10:30am.

Catheter change at TG Hospital

Rachael attended a catheter change appointment. Stuart (urology nurse) struggled to remove catheter tube and Rachael found it extremely painful, the worst catheter change to date. The trouble seemed to be that the balloon, when deflated, catches and forms a ridge making it extremely difficult to remove.

Email received from Macmillan Nurse

Claire emailed saying she had been in touch with a hospice doctor, who confirmed crushing drugs seemed to be effective,although there is no research available to support this. Claire also said she had passed my email address onto the Physiotherapist so suction machine training can be organised.

Email sent to Macmillan Nurse

Rachael informed Claire of Dr G's advice. Claire responded and said she would email her next week.

GP Appointment

Dr G came upon Rachael queueing for a flu jab and pulled us into her office. Dr G administered the flu jab herself. In regard to drug query, Dr G confirmed Rachael should crush Riluzole and open the capsule of Pregabalin to flush through the rig. She also said she would prescribe Baclofen and Ferrograd in liquid form, which we should mix with water to ease the enteral administration. Dr G said she would get back to the Macmillan nurses about training on the suction machine.