waxkinglyrical
pfm Member
If Jack isn’t feeling good right now there no hope.
Jack Barron (Go Fund Me)
- Thread starter Tony L
- Start date
Marchbanks
Hat and Beard member
An update from Helen Mead tonight - here it is for anyone who doesn’t receive the emails...
Hi Everyone - thanks so much for your continued support and caring enquiries.
Sorry It’s been a long time since I’ve updated you - so much has happened. Much of which I am afraid to say has been an uphill battle for Jack.
Now I’m pleased to share I’ve just had over three hours with him at the hospital (I am now allowed to visit - at last) - brought him his favourite Honest Burger, Chocolate cake from Paul and left him watching the Champions League final with his team Chelsea in the lead - sadly the hospital kicked me out just before they scored but I caught the cheer on the way to the tube (and it reverberated deeply for me).
Finally I have news that is both positive and hopeful - and if the new intervention works, Jack could soon be on his way back to being medically stable. Which is what his Drs have been struggling with for weeks.
Yesterday he started a new treatment for his vasculitis that unlike the chemotherapy they were using before won’t wipe out his entire immune system. It’s not a usual treatment and has required special permission and thinking outside of the box - they are confident it is worth trying.
The last six weeks and especially the last two to three weeks have been a huge toll on Jack. First an awful case of thrush and two huge mouth ulcers that would not heal, so that eventually he was on nil by mouth for the best part of a month (they have just taken out the nasal feeding tubes now).
Then sepsis which knocked him for six and after that a mystery infection that wasn’t responding to antibiotics. Very worrying indeed.
It was a race against time to find out what was causing the infections: the Drs were confounded; and they were checking, testing and scanning every part of him with no success.
Suddenly a new symptom held a clue: a super painful ankle and surrounding muscles. After several specialist teams investigating and ruling out different options it started to appear that the vasculitis- which caused the strokes in the first place (and his medical team thought was managed by the steroids he was on) - was causing the pain and inflammation in his ankle.
The amazing news is that he’s had two brain scans and hasn’t experienced any more strokes. So it’s all a real blessing - that the vasculitis has targeted an area as far away from his brain as possible.
Jack’s been moved to a more medical ward for the Bank Holiday Weekend so they can keep a closer eye on him and then the plan is to move back to the rehab ward on Tuesday - where they have “saved his bed for him”.
Fingers crossed the new treatment works, he would need another IV infusion in a fortnight and then again in six months time. So much better than having to continue with the chemo.
Hopefully with this new treatment he will get the window he needs to be stable enough to start back on his rehab again in earnest - something that’s not really been possible since recovering from Covid.
I’ve just heard that Chelsea have won the Champions League - that will have made Jack’s day, maybe even his year. I am keeping everything crossed this signals a new and easier chapter in Jack’s recovery and makes it a Bank Holiday Weekend to remember.
Have a good one everyone
Love Helen 29/5/21
Hi Everyone - thanks so much for your continued support and caring enquiries.
Sorry It’s been a long time since I’ve updated you - so much has happened. Much of which I am afraid to say has been an uphill battle for Jack.
Now I’m pleased to share I’ve just had over three hours with him at the hospital (I am now allowed to visit - at last) - brought him his favourite Honest Burger, Chocolate cake from Paul and left him watching the Champions League final with his team Chelsea in the lead - sadly the hospital kicked me out just before they scored but I caught the cheer on the way to the tube (and it reverberated deeply for me).
Finally I have news that is both positive and hopeful - and if the new intervention works, Jack could soon be on his way back to being medically stable. Which is what his Drs have been struggling with for weeks.
Yesterday he started a new treatment for his vasculitis that unlike the chemotherapy they were using before won’t wipe out his entire immune system. It’s not a usual treatment and has required special permission and thinking outside of the box - they are confident it is worth trying.
The last six weeks and especially the last two to three weeks have been a huge toll on Jack. First an awful case of thrush and two huge mouth ulcers that would not heal, so that eventually he was on nil by mouth for the best part of a month (they have just taken out the nasal feeding tubes now).
Then sepsis which knocked him for six and after that a mystery infection that wasn’t responding to antibiotics. Very worrying indeed.
It was a race against time to find out what was causing the infections: the Drs were confounded; and they were checking, testing and scanning every part of him with no success.
Suddenly a new symptom held a clue: a super painful ankle and surrounding muscles. After several specialist teams investigating and ruling out different options it started to appear that the vasculitis- which caused the strokes in the first place (and his medical team thought was managed by the steroids he was on) - was causing the pain and inflammation in his ankle.
The amazing news is that he’s had two brain scans and hasn’t experienced any more strokes. So it’s all a real blessing - that the vasculitis has targeted an area as far away from his brain as possible.
Jack’s been moved to a more medical ward for the Bank Holiday Weekend so they can keep a closer eye on him and then the plan is to move back to the rehab ward on Tuesday - where they have “saved his bed for him”.
Fingers crossed the new treatment works, he would need another IV infusion in a fortnight and then again in six months time. So much better than having to continue with the chemo.
Hopefully with this new treatment he will get the window he needs to be stable enough to start back on his rehab again in earnest - something that’s not really been possible since recovering from Covid.
I’ve just heard that Chelsea have won the Champions League - that will have made Jack’s day, maybe even his year. I am keeping everything crossed this signals a new and easier chapter in Jack’s recovery and makes it a Bank Holiday Weekend to remember.
Have a good one everyone
Love Helen 29/5/21
eternumviti
Insufficient privileges to reply.
Poor old sod, he really is having a rough time of it. Bloody awful.
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
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
gavreid
Pretty Words...
Thanks twotone - it really is a b*stard.
I have vivid memories of the stroke ward myself. The view out of the window was of the hospital incinerator chimney. I had visions of concentration camps and the only way out being up the bloody chimney. Luckily I was only there for a few weeks. Let's not forget Jack.
Marchbanks
Hat and Beard member
Sadly no time to get a Birthday Party birthday card. Something more generic will have to do. A picture of Marchbanks Towers with English Heritage’s estimate for rebuilding printed inside perhaps.
Bob McC
Living the life of Riley
Marchbanks
Hat and Beard member
lordsummit
Moderator
Haha, that’s two he’s getting. Didn’t see your post before I sent mine.
Mullardman
Moderately extreme...
Apologies for only just reading Helen's update.
I've never met Jack.. but I feel for him and wish him well. Two very small strokes have given me a tiny insight, but only tiny.
I will make sure Jack knows I am thinking about him.
I've never met Jack.. but I feel for him and wish him well. Two very small strokes have given me a tiny insight, but only tiny.
I will make sure Jack knows I am thinking about him.
