Message Eighty Eight (the END... and a beginning)

I've decided to take up the mantle and write the blog myself. I've started a new one because I didn't want to write for my own team, and it's a fresh perspective. Potential names for the sequel jokingly included: The Last Laugh, I Laugh In The Face of Danger (as Simba famously says), I Had a Brain Haemorrhage! Lol, Shake a Leg, At Least I Didn't Break a Leg, Gloria Gaynor Said It All and Patient's Guide to Pet Therapy (a nod to Dad's personal blog you can see here), but I settled on How To Walk. You can read more of my story here:

www.howtowalkbyelizabethstarr.blogspot.com

A big applause for Dad and the amazing job he has done of keeping you all up to date, often when it was very painful. And a big applause to you, who have thought about me, prayed for me and visited me. I kept every card I was sent hanging proudly and there's nothing like countless people across the globe rooting for you to give you strength. Basically everyone who saw my bed was struck by the number of people who cared for me and I was struck too.

Message Eighty Seven (By Elizabeth)

"The staff use walkie-talkies (radios) to communicate as it's got floors and twists (not huge though). I got a kick when I came back one night and heard them radioing "Elizabeth has entered the building"  I said they looked fun and can I play with them, and the staff member burst out "they're not fun!!" That novelty must wear off so quick when you're trying to get someone to assist you.

The physio is a Zimbabwean lady called D. She used to be a manager in the NHS but took a step down to have more quality time with patients. She's super nice and chuckly, but also very teacherish. We've gone back to basics like sit to stand and ironing out all the wobbles, which she says have improved really quickly. There are a lot less sound effects partly because I don't feel so wobbly and partly because its's too melodramatic and they'll just look at me like, "what?!" She always laughs when I do something stupid but is also a bit disparaging. Today she give me a "nice talk" basically saying I need to shut up and concentrate, so I didn't speak a word after that and mimed and we couldn't do what she envisioned because I kept giggling but silently and it was making her laugh too and she said she was gonna give my parents a bad report and I loudly then blamed her for making me laugh. We've also been using the parallel bars a lot and practising that technique. Her advice was: 1. control EVERY movement, 2 stay in the middle, 3. try harder. I feel like I've moved from primary school to secondary school. 

 I've also been given a lot of homework, excises from physiotherapyexercises.com which makes me feel more in control as I can DIY. There's also a bike machine I can use and she's taught my parents more stuff they can do with me, like gymball/plinth work and sit to stand and they're keen. She said I'm improved a lot in just a week,  probably cause I've cut the messing around and I've been remembering all the steps to walking well on the parallel bars."

Message Eighty Six (by Elizabeth)

I had a good second day, the first I unsurprisingly feel a bit rocky. I had a long
session with the much-acclaimed speech therapist. She is really nice. She said she once had a patient who had strained their voice trying to do a poo. Careful everyone. The neuro-psyches are looking out for me and have taken it upon themselves to help me with my dissertation and are gonna take me to the library. They also did some complex testing and the answer is, surprise surprise, I'm very bright but impulsive. They're gonna look at how I can help this. (I blew the memory and word-defining tests out the water obvs).

I heard the phrase 'hydro' and looked up like a dog catching a sent. They take a man to hydro Friday afternoon in Hinckley (as the General, although closer, is hard to book). I told the physios l love "splish splash", but they can only take one at the moment but at least I said. She said I will be having daily physio though so yay.

They're very accommodating to me and different rules apply to different people depending on their needs, so I can like, go out for a meal in the evenings, not the back by 8 rule of the hospital.

I am getting used to doing step-transfers with two, and I have been wearing my foot splint a lot more because of this. I've quickly got used to my own room though I miss the communal banter. Most of all I like the control of the light and can make it nicely dark

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.

Message Seventy Six

"Nothing in the notes!"  If only there had been some reference in Elizabeth's notes to her trip home last Wednesday.  The therapists agreed Liz could leave the ward for about three hours at a time, but they hadn't recorded it, and they don't work at the weekend.  We were all on tender hooks, with cinema tickets bought.  Elizabeth did her special look, and the ward staff decided to take a risk.  And the film? - How to Train your dragon III - (It's a dragon thing). Today it was lunch with Charlie and Jill.  Whoohoo.

Phoebe stopped off on her way to Nottingham Uni, and joined in with the dragon thing.

Elizabeth also received her new bespoke wheelchair, a gift from the NHS.  It is very fine, and includes a large bag for things on the back.

So Elizabeth is getting out of the ward.   We decided Lala's inaugural lecture would be a trip too far at this time.

A walk in the park

Lunch with Charlie and Jill

Message Seventy Five

It was a fun day today (Wednesday).  Elizabeth made the short trip from hospital to home with three of her therapists.  R, her Physio, L her OT and B, her Physio students (UEA).  With measuring tapes and test transfers we worked out how Liz will be able to do weekend visits home.  It will be easier when she has more strength to stand and move about so that our downstairs loo is less problematic.  That's coming.  Margaret and I are off to London for two days to visit a friend, and stay in my uncles house for a break.  Jo continues to work at a local deli. The hours have been a bit bitty, but this does fit well with seeing Liz, and doing some voluntary work.

We are so grateful to Liz's therapists, nurses and doctors.  They have all given Liz such a great service.  Let's not forget the Health Care Assistants and Housekeepers too.

This post was delayed because there was some dispute over the best pictures to use.  (I look a bit bored in this one, but I'm not so choosy.)

Lindsay helping Liz get onto the sofa at home.

Jo and Liz in our kitchen

Message Seventy Four

So, Liz got her Intensive Care diary back, and was touched to read about the love shown by so many friends, family and medical staff supporting her every moment of the way.  It seems a long time ago now, but it's been five months.  Liz therefore has seven months ahead of her before her third year begins at Sheffield.  We hope this will happen.  At the third care plan meeting which Liz, Joanna and Margaret attended, the plan discussed is for Elizabeth to finish her life on ward 2 in April.  By then we are trusting that she will be able to walk out of the ward.  Liz would like to move on to a private rehab unit in Leicester called Barclay House, where she can continue to have physio and other therapies.  If the funding is not secured for this, it will mean a move back to our house.  On Wednesday the plan is for Elizabeth's OTs and Physios to inspect our house to help with future planning.

Today Adam, Tash, Fran and Cameron all visited Liz.  We had one of our picnics in the staff canteen (with special permission.)  I was proud to have kept the pizzas hot with a brick that I had stashed in the bottom of the oven.  Now Domino's hasn't thought of that.

Pizza Meal with Liz's Sheffield crew.

Message Seventy Three

Conversation overheard on the ward.
a phone rings.

Elizabeth- "Helloo, I'm not at home."
Caller-  "Hello Liz, where are you at the moment?"
Elizabeth- "I'm in hospital."
Caller- "Oh, nothing serious I hope."
Elizabeth- "No, nothing serious."
Caller- "Well I hope you get better."
Elizabeth- "I will."
Caller- "Is anyone there with with you?"
Elizabeth- "Yes, Lots of friends are with me.  They can hear you. You are on speaker phone."
Caller- "Hi everyone, have a good evening .  Bye Liz, sleep well."
Elizabeth- "Bye."
Elizabeth's friend-  "Who was that?"
Elizabeth- "Oh, that was my dad."

Today we cruised round Leicester equipped only with a banana board.  Liz had an appointment at the Royal with Ear, Nose and Throat.  We wheeled into a packed Saturday Outpatient's clinic.  Perfectly on time,  Mr Haribaskaran saw Elizabeth and explained how he would put an optic fiber camera down her nose to examine her vocal cords.  With great skill he did this and reassured Liz that her vocal cords are fully intact and undamaged.   This means that with continued speech therapy, Liz should be able to get her singing voice back. 

Liz in the front seat 

Message Seventy Two

Liz has a driving licence but it's probably best that I drive at the moment.  Today she 'banana boarded' into the passenger seat of my car with Rachel, her Physio supervising.  It was a slick move.  We are preparing for Liz's next trip to the Leicester Royal Infirmary on Saturday where she will have her vocal cords examined.

We also traveled down the miles of hospital corridor to visit the Intensive Care Unit and requested an appointment for Elizabeth to be given her Intensive Care diary.  As she pointed out to the Sister, she feels that she was not traumatised by her experiences.  She has been largely conscious from the moment the haemorrhage happened, and has always felt peaceful.  The nurse could see this, but we agreed to their protective approach.  She will get it on Friday with the appropriate counselling.

A Banana and Apple visited at the weekend

Rachel with the banana board.  It's surprisingly green.

Message Seventy One

Elizabeth would like her left ankle to flex.  She feels that 'sensation' is moving down her leg and is about 6 centimeters away from her ankle, so it's on its way.  She would also like to know that her voice can be restored.  It is coming and she suggested that a little ditty she composed is put on the blog so that you can get an idea of how she is doing. (Click on https://soundcloud.com/andrew-starr-725590242/liz-little-patient ) (watch out for the follow on track- it's nothing to do with me - might be an atmospheric Korean song- quite good really.)

Yesterday Margaret was able to see Liz walk with the frame across the gym, and out into the corridor, turn right, and down to the nurses station.

Yesterday Anna and Joe came from Sheffield.  They all went out to the canteen and Liz had her hospital sandwiches.  Later Dave M was able to see the massive progress Liz has made having seen her in Sheffield.  Elaine saw her for the first time.  They stopped in Leicester en-route to the big rugby game at Twickenham.

Today we provided dhokra and Indian curries from 'Bobby's on the Melton Road to celebrate the reunion with Elizabeth's Mizoram team who visited for the day.  They turned up at the ward dressed as an apple and a banana.  The Nurse said, "oh yes, visiting Liz.  Second bay on the left."

A picture of Dhokla?  Well M from the opposite bed is brought it by her family and we are all very jealous.  Our friend Manju also cooks perfect Dhokla, is it's a real hit.

Dhokla- savoury Indian cake

Message Seventy

I have this saying that 'there are no secrets in families, just taboos.'

Elizabeth has probably now stayed on ward 2 longer than anyone else.  She knows pretty much everything that is going on in the ward, and could act as a prompt for staff, if they asked her.  The realisation of this caused a bit of a stir yesterday because it was noted that the strict patient confidentiality rules may have been stretched.  This resulted in them moving Elizabeth away from the nursing station. Elizabeth felt she was being pushed away and excluded when she has appreciated their company over these many days. It all felt too much and she was overwhelmed with sorrow.  Her therapies could see this and the nurses also felt bad.  Again we were reminded of how challenging it is to be cooped up in a hospital ward with next to no privacy, let alone experiencing significant disabilities.

Elizabeth enjoyed the weekend with her Uncle Peter and Grandma calling in late on Sunday evening after a train mix up delayed them by two hours.  We all ate late night cake, a gift from Helen.

Today Kate visited with a big bag of lychee to aid the celebration of Chinese New Year.  (We all pigged out.)

Happy New Year everyone.