Updates (8)
11 August 2021by Helen Mead, Beneficiary
Next Tuesday, August 17th, will be Jack’s birthday. He will be 67 years old and it will also mark 10 months since he walked into hospital.
I’m hoping we can set up a birthday to remember for Jack. Once we have his therapy schedule in place for the day we can plan some activities for him. I will be with him in the afternoon so I can keep him company, help facilitate calls and get him something he will really enjoy eating. Steak is the plan. So I’m investigating local takeaway possibilities. So far thinking maybe Teriyaki!
If anybody would like to send Jack a card or a present that is all good with the ward. Please send to the Neuro Rehab Ward, 9 West, Charing Cross Hospital, Fulham Palace Road, London W6 8RF.
One of the lovely things about birthday cards is they can be kept by his bedside so he has a reminder of friends thoughts and wishes fresh in his mind. Maybe some stories of memories of favourite times spent with Jack. Tales to keep a smile on his face and in his heart.
Today when he was talking to his friend Simon via the iPad - he said “I wonder what it would be like to walk over to the window?” The window is just one bed away - with a view over rooftops and a green space (more attractive when you don’t know it’s a cemetery) - and it’s heartbreaking that currently that’s out of Jack’s reach.
Post Covid he had got up to walking 15 metres - but since the multiple infections of the last few months, most lately recovering from pneumonia in one lung and bronchitis in the other - he is currently on oxygen again (2 litres this time) and he’s only able to get out of bed with assistance and into a wheelchair to sit out next to his bed for an hour or so at a time.
Today he didn’t feel up to that - even though he would have been able to see another friend - another Simon who came to upload a huge selection of audiobooks to Jack’s iPad. A selection he relished and jumped straight into Keith Richards “Life”.
Have to say I found it more than a little awkward hearing the story of Keith being squashed between large black bosoms at a roadhouse in the deep south - when an African nurse came to check his blood pressure. Thankfully she wasn’t phased! And took Jack’s complaints about being disturbed gracefully.
That said today was a good day! This is the most stable and well Jack has been for several weeks.
His Dr, Lawrence, says he is on an “upward trajectory” and is engaging far more. He is both more aware and conversational which is great.
Medically he is currently being treated for an infection in his lung. He is responding well to a course of antibiotics-and they expect him to be on them for at least a month - they will give his lungs another CT scan then and hopefully the cavity and infection will have healed and Jack will be stronger and ready to engage with more therapy.
For over a month now I’ve started to write updates and things change so fast that they are obsolete before I post them. The rollercoaster has had very high peaks and low troughs and has been a very unstable ride.
One week on the Friday, Jack had been medically stable for two weeks for the first time since Covid. His medical team had just prepared paperwork to refer him to a care home (this in itself was a shock as I was really hoping he would still be able to go to a physio unit but he just wasn’t ready for the sort of unit he was originally going to prior to catching Covid - where he would have had 3-4 hours of rehab a day).
Then by the Monday he was fighting a new infection and we were back to all-hands-on-deck, medical intervention.
There have been some really difficult times these last few weeks. At one point when Jack was appearing to get better and I was so thrilled at the progress his consultant took me to one side and said to “brace ourselves” that he might not make it through.
So much difficult news often had ricochets of understanding as I worked to process what they were telling us and to continue to support Jack.
Always there were multiple drops of coffee and cake, and setting interesting things up for him to watch on the iPad or music to listen too. A highlight was the whole ward listening to a Pharoah Sanders album that Robin had gifted him. It turned the ward into a different, softer and much more pleasant, place - the way a Christmas tree transforms a living room and somehow you enter a magic realm.
Sometimes Jack was so deeply asleep he didn’t surface the whole visit. Others he was so hot with fever he had a four foot fan pointing at him from just inches away and he was still sweating buckets and had an awful headache. So seeing him the last two times waking as soon as I arrive and setting about his cake with relish and precision - is a joy to behold.
It feels as if we are only just coming up for air again now. Jack, me, the medical team, everyone else who has been supporting him.
I so hope this still point lasts long enough to post this - and onwards past his birthday. And in the meantime it’s amazing that he’s enjoying “Life” on the audiobook and can take steps into another world filled with all the things Jack loves.
Helen Mead 10/08/21