Message Eighty Five

On Saturdays we are in the routine of collecting Elizabeth ready for breakfast.  But the sun was shining, so we headed for Bradgate Park.  Anny came down from Sheffield for the afternoon, and we had friends round for scones and cream.

Liz now does 'step transfers' which do not require a banana board.  She is learning to stand in a controlled and sedate manner.  In the park we watched two 'one year old' twins doing their standing and they were not nearly so elegant.

Joanna has been away for the weekend with our church learning to surf(!?)

Saturday morning- breakfast in Bradgate Park

Resident of Bradgate

Amazingly, my wheelchair is invisible.

Message Eighty Four

Elizabeth said "put it on the blog, but warn my friends it's heavy on the God stuff."  I don't think we would be where we now without the 'God stuff'.  Two of our pastors (church leaders) made a video of Elizabeth talking about her story.  It's is on this link Elizabeth's Story.  The clip at the end was taken by Joanna and is Elizabeth's 'walking out' ceremony.  It is her leaving Ward 2.  The music that accompanies this is a song by Tom, our pastor's son, which Elizabeth particularly appreciates. 

Our pastor  used the video as an illustration in our service at the Leicester Arena yesterday.  The night before, the venue had been used for a big boxing match. (No connection, just a random fact.)

Elizabeth is settling into Barclay House.  All the staff are positive and friendly.  Liz is straight into Speech therapy and Physio,  Her new OT is also going to come and inspect our house for overnight stays.

Of course Liz still misses her old nurses and therapists.  She appreciates them so much, but we all feel blessed by the new venue, and it's the beginning of a new chapter.

Message Eighty Three

We have just got in from a meal at Mithaas, an Indian vegetarian restaurant near to Elizabeth's new address at Barclay House.  My Mother is staying with us.  Joanna has just returned from a short beak in Bedford with Auntie Ruth.  Elizabeth has had two nights at her new address, and is feeling a little more settled.

Wednesday's move went well, but it was also very emotional, as the comments you recorded on the last message rightly anticipated.  The end of Hospital life has been an opportunity for all of us to release some pent-up emotion.  Elizabeth was sad to leave the wonderful staff at Ward 2, but we have found that Barclay House has another set of welcoming and committed carers and therapists.   To begin with, it was strange for Elizabeth to experience the luxury of her own room, but she is adjusting to the new freedom, which includes going out later in the evening, and living a more normal life.

Elizabeth's Psychologist, R, and Psychology Assistant, N, are up for the challenge to help Elizabeth prepare to return to university.   Today she also met her new Speech Therapist who travels down from Derby each Friday to work with Barclay House.  Elizabeth thinks she will be her Therapist's new project.

Address: Barclay House, 165 Barclay St, Leicester LE3 0JE   Phone: 0116 255 3039

Barclay House

Another view

Message Eighty Two

"I have news" said Elizabeth when we arrived this evening.  At 4:15pm Liz was told that she has a place at Barclay House.  Mercifully R, Elizabeth's physio was right next to her as the news was quite overwhelming.  It's been a long journey and now the end of her time in Hospital has come.  Her last day will be this Wednesday. (Apparently there are four people waiting for her bed.)  We were all affected.  Liz has so many people she has become attached to and now she is going to have to say all those painful good byes.  The departure time will be 3:00pm, and that is when she will walk, holding on to R, to the front door and leave.  Joanna will help Liz take down the strings of cards from all of you.  Also the many pictures pinned to the walls.

Everything in this life has a beginning, middle and end.  Each one has it's story.  We are so thankful for the wonderful care Elizabeth has received every single day of her time in Hospital.  Liz is close to independent walking, but what could be better that having two physios, both who have become like friends, walking either side of you as you leave.

Message Eighty One

Liz and I have been discussing what it is like to live with 'complete immersion' TV.
For many patients, there is not a lot to do, and the TV is company.  Culturally it's assumed that the TV's is on in all bays all of the time.

This is how our discussion went.

Grade the programmes that are on every day from 1 to 10.

10 = Worth watching.
5= Don't mind it being on and might watch snippets.
4= Don't mind it being on, but would prefer not to be exposed to it.
3= Deeply boring.
2 = Down right trash.  Should be deleted from TV repertoire
1= Actually quite distressing and painful to endure.

Here is the outcome.

5 - The News, Nature programmes, The Simpsons, Gogglebox
4 - Bargain Hunter, Grand Designs, Under the Hammer, Antiques Road Show,
3- The Chase, Pointless, Britain's Brightest Family, Egg Heads, Tipping Point, Escape Down Under
3- Take me out, James Martin (cooking show), Nickelodeon (Ultimate Spiderman)
2- Jeremy Kyle, Traffic shows, 999, Crime Thrillers,
1- Hospital dramas (Casualty), Ghost dramas. (There could be a law suit pending.)

Elizabeth says "the egghead's grand design for wall to wall gogglebox is pointless, putting her under the hammer.  She is reaching the tipping point. Take me out, I need to escape down under."

Message Eighty

Friends/ Family,

Elizabeth continues to work hard at her physio.  That's cycling, and doing sit-ups.  Movement in her left hand seems to have slowed down.  She continues to use it as much as she can because it must not think that it is being let off.  She is standing with minimal supervision these days.  Yesterday Alice and David from our church made an interview with Elizabeth of her experiences.  When it has been edited a copy will be given to Liz, and she may share it with us all.  There are long days on the ward so her continued visitors are appreciated.  Today Graham and Isabel visited with a beautiful lemon cake.  Jo and I partook of it in the evening (oh no, crumbs in the bed.)

Here is a picture we took of our family outing on Sunday.

Trip out to our one of our favourite restaurants - Shanghai Moon.

Message Seventy Nine

Margaret's Cousin Andrew is a speaker at a youth event in Scotland called 'Powerpoint'.  The theme of the event was dealing with suffering.  A few weeks ago Andrew asked Elizabeth if he could share Elizabeth's experiences, and sent some questions.  Liz (see her poem) found this difficult to do, but today when I was with her, we looked at Andrew's questions and she answered them.  I sent them up to Andrew not realising that the event was today.  This evening one of Joanna's friends texted her to say she was at the event and had heard Elizabeth's story.  Great timing.

Message Seventy Eight

We all continued to be touched by the never ending love and support our family receives every day.  It has not wavered, even as the time goes by, and this life style becomes more normal.

Elizabeth works hard every day on her physio and OT.  In physio she is learning to balance her weight on one leg, and then transfer it to the other.  She is walking up and down the corridor.  Her left foot continues to need a 90 degree splint to enable Liz to kick it forward as she moves.  She has two people, one on either side to help her balance. 

She is cycling in the evening for about 15 minutes hard, and then 15 minutes soft peddling.

People from both of the prospective rehab centres Liz has applied to have visited to talk about the next stage when 6 months in hospital comes to an end.  One is near to one of my work bases in Leicester.  The other is in Loughborough opposite the Hospital.  Liz felt both would be suitable, and she is open which ever is approved by financing.  (We shall see.)

Looks like a chopper? (bike from the 70's)

The Only Time I’ll Write About Pain, by Elizabeth Starr

Message Seventy Seven

My imagination wants to see this picture as Caesar, with three lictors about her.  Elizabeth said that's ridiculous because she is not Caesar, and her physio's are not lictors.  That's the state of our conversations these days.

Elizabeth has been doing a lot of supported walking, and her left big toe is beginning to move.  This is the last area of no movement, so it's lovely to see a wiggling toe.  Today she was sad to see L, her OT, move on to pastures new.  Liz suggested that L should get a guard of honour by the door, the tradition offered to patients when they leave.  L will be greatly missed by Liz.

Liz has appreciated  her visitors. Taiyebah, came.  She is looking into a job at the hospital.  Liz's great uncle and aunt, Lis and James, and Sandra were in town for our friend Lala's inaugural lecture as an Arts Professor at DeMontfort University, and visited her too.  Things continue to progress well, with another 6 or 7 weeks to go, and clear signs that every minute on Ward 2 means progress.