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.
No comments:
Post a Comment