They said I gotta go to(neuro) rehab I say ok, ,K,K
Yes I’ve had a stroke but I’m not broke it’s ok, K K
I ain’t got that much time but if Stephen thinks I’m fine,, then that’s ok,K,K
Thank you for humouring me, people and for tolerating the abandonment of good grammar for the sake of rhythm (I’m not broke’) ... a sad and difficult trade off indeed 😁
Saturday, 25 April 2020
Monday, 20 April 2020
Book Recommendations
Here's a list of books suggested to Annie by family and friends ...
- A Confederacy of Dunces. (It’s bloody hilarious)
- A Gentleman in Moscow by Amor Towles. (I really, really loved that book ; Really good escapist stuff)/
- Canal Walks by Julia Bradbury.
- Eleanor Oliphant is Completely Fine by Gail Honeyman (2 votes).
- Galbraith mystery books
- How to be a woman - Caitlin Moran (belly laugh funny)
- How to Pray for Normal People (Pete Grieg) What it says on the tin
- Innocent wife' by Amy Lloyd (woman falls in love for murderer on death row, he's released, they marry...)
- Jigs and Reels by Joanne Harris (the first one is hilarious and reminds me of me and Stephen’s mum. We escape from a nursing home!!)
- Ken Follet Century Trilogy (Really long but un-put-down-able.).
- Mallory Towers, Enid Blyton (Easy escapism read. Reminder of stuff she read as a youngster).
- Mythos Stephen Fry
- Neverwhere Neil Gaiman
- Persian Fire and Rubicon, by Tom Holland
- Philip Kerr Bernie Gunthie books (murder mysteries set in Berlin in ww2 / cold war,)
- Philippa Gregory series-
- re-read Adrian mole books (easy to read and very funny).
- Shantaram by Gregory David Roberts
- The Bookshop by Penelope Fitzgerald ( a short book wonderfully observed)
- The Cockroach by Ian McEwan. Great political satire!
- The Hundred-Year-Old Man who climbed out of the windo and Disappeared – Jonas Jonasson (Fab book, Funny and clever; v good).
- The Loud Halo by Lillian Beckwith (life on a Scottish Island)
- The Music Shop by Rachel Joyce (a novel )
- The Neapolitan novels x4 by Elena Ferrante starting with My brilliant friend – (excellent; fantastic; really enjoyed them)
- The Number 1 Ladies Detective Agency books by Alexander McCall Smith
- The Once and Future King. TH White -
- The Postcard - by Leah Fleming!
- the Potkin & Stubbs series – (“yes the target audience may be 10-12yr olds but the author is my sister in law”)
- The queen and I Sue Townsend
- the Rivers of London series by Ben Aaronovitch. (light fun reading).
- The Street Lawyer by John Grisham (like every other Grisham)
- The Unlikely Pilgrimage of Harold Fry – uplifting.
- the Witcher series by Andrezj Sapowski
- Things I don’t want to know’ by Deborah Levy
- Three men in a boat Jerome k Jerome (good for a laugh)
- Three Women by Lisa Taddeo. (Totally up her street and a page turner to boot!)
- Trash by Andy Mulligan
- What Would Boudicca Do.
- Wolf Hall by Hilary Mantel
Sunday, 19 April 2020
three steps forward
Guest contributor: Stephen.
The aim of the latest operation was to further prepare the ground for radiotherapy. By all accounts, the goal was: "further debulking of the medical temporal component" and was satisfactorily achieved. The last two operations, where Annie was in for one or nights before being discharged, has not reflected the risk associated with this kind of surgery. It seems this time, at some point during operation, Annie suffered a temporary loss of blood to part of her brain. This has resulted in a loss of mobility down her left side. It is not total. She can move her left foot, wiggle her toes, chew and swallow normal food etc. etc. but her left-hand side is weak. It is far too early what level of mobility she can regain. In the meantime, she needs to rest to recover from the operation but regular twice daily physio to maintain muscle tone. Medically, she is well and improving every day. She has a good appetite, is reading, listening to music and is easing back on to the iPhone sudoku. All of this remains punctuated by naps and a variety of assessments from therapists and care from specialist nurses. She could not be in a better place at this time. Salford is by all accounts world-leading in this area. She is has her own room in what is a modern facility. However, these are strange and challenging times. All visiting is suspended. The hospital seems to be coping with demand from C-19 but remains in a state of readiness for a surge in demand.
Annie's care is being overseen at this point by the department of neurosurgery. Preparations are made for neurorehabilitation. From what I can gather (this is all rather new to me at this point) is there are three steps:
I think these three steps offer a sketch of what is in store- but what isn’t clear is how long each step will take. We are still only 4 days since the operation. All we can do is remain optimistic. But we also need to be prepared for a process that will likely take several weeks and months of incredibly hard work to engage with the programme of rehab.
I can't think of anybody better placed to take on this challenge. Annie has never let this disease hold her back. The multiple operations, cycles of chemo, radiotherapy and epilepsy have made their presence known and left their footprints. Still, through it all she has done some incredible things over the last 8 years. From advising government on everything from food and rural affairs, to dementia care and support for carers. A masters in statistics and a PhD leading to an award winning paper, invitations to speak at prestigious seminars. Articles in top journals and a monograph on wellbeing and values. The full spectrum of research: from high level statistical modeling to qualitative interviews with older people with dementia and their partners, Q sorts in care hopes and all this passed this on to her postgrad students. And, all this while giving birth to (and potty training! Oh yes.) the funniest, smartest, bossiest most beautiful little boy in all of Levenshulme. (or as Joseph says; “I’m a big boy now, but with a small mouth”). The amazing thing is that Annie has done all this, achieved all this, living with the roller coaster uncertainty of what the next scan will show or when the next seizure will strike. Her positivity and determination to "do things well" has meant she has remained well, physically fit, healthy and active. She has been helped along the way by her incredible family and most loveliest assemblage of friends. We have been lucky to have continuity of care from the same oncologist, specialist nurses, surgeon (and even anaesthetist). Every attempt at a second opinion has revealed we have the best medical team throughout this. Despite what seems like unrelenting positivity, Annie's resolve has been tested so many times in recent years: countless blood tests and scans, the frustration of cancelled or deferred appointments, and trauma of seizure-related injuries. And now we are here. Now, this.
Where this chapter sits alongside previous setbacks is too early to judge but what is clear is she needs your support more than ever. If I can make one request at this point -please can you send any messages or questions my way for the time being. I will relay everything I promise.I think it is essential over the next few days she can rest up as much as possible. Once she is stronger, she’ll be able to reply and engage. In the meantime, Joseph and I are muddling through. Annie's lovely mum, Deborah is now staying with us. Thanks to Hannah and Deborah, we have plenty of food in the lockdown fridge, and we continue to devise ways for Joseph to burn up as much energy as possible the garden. He misses his mum so much. Like all of us, he was hoping she’d be home by now. He is almost 3 (29th of this month) and how much he understands is hard to say – but we are being open with him when he asks questions, and we have things like Facetime where he can say hello or good morning or ask questions "can I eat your Easter egg now mummy?" After a day and a night of puzzlement, things are starting to fall into place. The toughest bit in all this is not being able to visit. We can't speak to the medical team face to face. These are the realities of a hospital adapting to very challenging circumstances. Your messages of support and book suggestions are a tonic and have helped us immensely. We don’t have to face this alone.
The aim of the latest operation was to further prepare the ground for radiotherapy. By all accounts, the goal was: "further debulking of the medical temporal component" and was satisfactorily achieved. The last two operations, where Annie was in for one or nights before being discharged, has not reflected the risk associated with this kind of surgery. It seems this time, at some point during operation, Annie suffered a temporary loss of blood to part of her brain. This has resulted in a loss of mobility down her left side. It is not total. She can move her left foot, wiggle her toes, chew and swallow normal food etc. etc. but her left-hand side is weak. It is far too early what level of mobility she can regain. In the meantime, she needs to rest to recover from the operation but regular twice daily physio to maintain muscle tone. Medically, she is well and improving every day. She has a good appetite, is reading, listening to music and is easing back on to the iPhone sudoku. All of this remains punctuated by naps and a variety of assessments from therapists and care from specialist nurses. She could not be in a better place at this time. Salford is by all accounts world-leading in this area. She is has her own room in what is a modern facility. However, these are strange and challenging times. All visiting is suspended. The hospital seems to be coping with demand from C-19 but remains in a state of readiness for a surge in demand.
Annie's care is being overseen at this point by the department of neurosurgery. Preparations are made for neurorehabilitation. From what I can gather (this is all rather new to me at this point) is there are three steps:
- Acute neurorehabilitation: to provide the required nursing and medical input following the operation, and once medically stable
- Post-Acute neuro-rehab: that can offer the required intensity of rehabilitation and assessment. This is usually a specialist unit. There are several in greater Manchester and take direct referrals from her current hospital. But given the C-19 situation, it might be more of this second step work will take place where she is.
- Home and cared for by family but supported by community specialist neuro-rehab teams.
I think these three steps offer a sketch of what is in store- but what isn’t clear is how long each step will take. We are still only 4 days since the operation. All we can do is remain optimistic. But we also need to be prepared for a process that will likely take several weeks and months of incredibly hard work to engage with the programme of rehab.
I can't think of anybody better placed to take on this challenge. Annie has never let this disease hold her back. The multiple operations, cycles of chemo, radiotherapy and epilepsy have made their presence known and left their footprints. Still, through it all she has done some incredible things over the last 8 years. From advising government on everything from food and rural affairs, to dementia care and support for carers. A masters in statistics and a PhD leading to an award winning paper, invitations to speak at prestigious seminars. Articles in top journals and a monograph on wellbeing and values. The full spectrum of research: from high level statistical modeling to qualitative interviews with older people with dementia and their partners, Q sorts in care hopes and all this passed this on to her postgrad students. And, all this while giving birth to (and potty training! Oh yes.) the funniest, smartest, bossiest most beautiful little boy in all of Levenshulme. (or as Joseph says; “I’m a big boy now, but with a small mouth”). The amazing thing is that Annie has done all this, achieved all this, living with the roller coaster uncertainty of what the next scan will show or when the next seizure will strike. Her positivity and determination to "do things well" has meant she has remained well, physically fit, healthy and active. She has been helped along the way by her incredible family and most loveliest assemblage of friends. We have been lucky to have continuity of care from the same oncologist, specialist nurses, surgeon (and even anaesthetist). Every attempt at a second opinion has revealed we have the best medical team throughout this. Despite what seems like unrelenting positivity, Annie's resolve has been tested so many times in recent years: countless blood tests and scans, the frustration of cancelled or deferred appointments, and trauma of seizure-related injuries. And now we are here. Now, this.
Where this chapter sits alongside previous setbacks is too early to judge but what is clear is she needs your support more than ever. If I can make one request at this point -please can you send any messages or questions my way for the time being. I will relay everything I promise.I think it is essential over the next few days she can rest up as much as possible. Once she is stronger, she’ll be able to reply and engage. In the meantime, Joseph and I are muddling through. Annie's lovely mum, Deborah is now staying with us. Thanks to Hannah and Deborah, we have plenty of food in the lockdown fridge, and we continue to devise ways for Joseph to burn up as much energy as possible the garden. He misses his mum so much. Like all of us, he was hoping she’d be home by now. He is almost 3 (29th of this month) and how much he understands is hard to say – but we are being open with him when he asks questions, and we have things like Facetime where he can say hello or good morning or ask questions "can I eat your Easter egg now mummy?" After a day and a night of puzzlement, things are starting to fall into place. The toughest bit in all this is not being able to visit. We can't speak to the medical team face to face. These are the realities of a hospital adapting to very challenging circumstances. Your messages of support and book suggestions are a tonic and have helped us immensely. We don’t have to face this alone.
Thursday, 9 April 2020
4th time lucky
Hello everyone
Well, recovery from operation number 3 has been going great guns. I spent two nights in hospital, came home, and had top class care from my men - the little one and the big one :) plus more top class care from my top class mum.
Being in lockdown hasn't made much difference to me - I'd have been at home recuperating anyway. I'm classed as 'vulnerable' and I'm not supposed to go out at all. Thank goodness for a garden! We won't talk about Joseph's views on lockdown...
This week, the results of the operation came in and we went to discuss them with the neurosurgeon. To cut a long story short, the post-op scan showed up another couple of dodgy bits that would be relatively easy to get out, and would leave a smaller 'field' for radiotherapy.
So. Back under the knife for operation number 4 next week (Wednesday). He (Mr surgeon) wants to get back in before too much healing happens.
I'm not sure how I feel about yet another operation, maybe because I feel a lot of things at the same time.
Good, let's get it done, better to get it out of the way now than have to do this again at some unknown point in the future. Good, as per last time, they wouldn't do it if they didn't think there was a chance of improving the situation.
Also, FFS, AGAIN?! We've got to go through all this awful upheaval and stress and worry AGAIN, so soon, just as we were starting to see light at the end of the most recent tunnel? Give us a break! It feels a bit like being in a boxing match, taking punch after punch after punch, before we've even got up again.
HOWEVER. We will never, ever give up. We can take it. We'll always get up again. Every single time. Because we've got each other, and all of you - the best support network of family and friends anyone could ever hope for. Thank you xxxxx
Well, recovery from operation number 3 has been going great guns. I spent two nights in hospital, came home, and had top class care from my men - the little one and the big one :) plus more top class care from my top class mum.
Being in lockdown hasn't made much difference to me - I'd have been at home recuperating anyway. I'm classed as 'vulnerable' and I'm not supposed to go out at all. Thank goodness for a garden! We won't talk about Joseph's views on lockdown...
This week, the results of the operation came in and we went to discuss them with the neurosurgeon. To cut a long story short, the post-op scan showed up another couple of dodgy bits that would be relatively easy to get out, and would leave a smaller 'field' for radiotherapy.
So. Back under the knife for operation number 4 next week (Wednesday). He (Mr surgeon) wants to get back in before too much healing happens.
I'm not sure how I feel about yet another operation, maybe because I feel a lot of things at the same time.
Good, let's get it done, better to get it out of the way now than have to do this again at some unknown point in the future. Good, as per last time, they wouldn't do it if they didn't think there was a chance of improving the situation.
Also, FFS, AGAIN?! We've got to go through all this awful upheaval and stress and worry AGAIN, so soon, just as we were starting to see light at the end of the most recent tunnel? Give us a break! It feels a bit like being in a boxing match, taking punch after punch after punch, before we've even got up again.
HOWEVER. We will never, ever give up. We can take it. We'll always get up again. Every single time. Because we've got each other, and all of you - the best support network of family and friends anyone could ever hope for. Thank you xxxxx
Subscribe to:
Posts (Atom)