A blog about the funeral (7th October 2020).

 

Annie died peacefully 26th September 2020. She was 39 years old. A memorial page has been set up here: https://aaustin.muchloved.com/ . 

Arrival 

After a damp morning the weather dried up and the sun shone on what became a crisp autumn afternoon. The venue, GreenAcres Rainford, is a woodland of ancient oaks and several acres of more recently planted native trees. At the centre stands a newly built single storey building clad in wood. 

At 2pm we lined the track as the hearse arrived. Annie’s coffin was a natural grey colour, unbleached Yorkshire wool made in Pudsey, with a simple spray of long-stemmed sunflowers, her favourite, on top. 

As we processed in behind the coffin the opening bars of Annie’s requested music began to play “The Sea and Sinbad's Ship” 1st Movement of Scheherazade Op35, by Nikolai Rimsky-Korsakov performed by the Boston Symphony Orchestra. 

It was a piece she often listened to on headphones walking to work or for treatment at Christie Hospital. She always said it was best enjoyed at high volumes. She chose this piece for her funeral back in April. When I suggested it might be a little too dramatic she suggested to start after the initial bass motif (about 20 seconds in). Ideally she wanted us to listen, in silence, to all four movements (perhaps next year we will). 

The room was set out with 25 chairs carefully distanced in 5 rows. Annie’s coffin sat on an oak table and the front window through which we had an uninhibited view of the green natural landscape. 

Welcome

The funeral celebrant, Debbie Jones, welcomed us to the ceremony.  Her opening remarks included:

“I heard how Anna’s home has often been full over the past few months, as you and others spent as much precious time with her as you could. There were also many who could not visit because of lockdown and the guidelines, just as there are many others who would have liked to have been here today…

Anna was the beloved daughter of Deborah and Allan.  No parent ever expects to be at their child’s funeral, and I’m sure your thoughts will be with them both here today…

This ceremony today allows us to place Anna in the centre of our thoughts for a while, as we gather to say, “Thank you for your life. We will remember you always. Go well, with our love and blessing.”

Debbie also pointed out that Annie was known to different people as either Annie or Anna, and that she would therefore use both names interchangeably (as does this blog post). 

Debbie introduced Annie’s mum Deborah who read a passage from 'Through Mine Own Eyes’, by Katherine Trevelyan, published in the early 1960s. This was a piece she had originally chosen for a surprise “this is your life” book she compiled to celebrate Anna’s 21st Birthday in 2001. In introducing Deborah it was an opportunity to discuss how Anna had travelled the world and had developed a keen sense of social justice since a very young age. Deborah then read:

“There is nothing on earth like the moment of seeing one’ first baby. Men scale other heights, but there is no height like this simple one, occurring continuously throughout all the ages in musty bedrooms, in palaces, in caves and in desert places. I looked at this rolled-up bundle…and knew I had not created her. She was herself apart from me. She had her own life to lead, her own destiny to accomplish; she just came past me to this earth. My job was to get her to adulthood and then push her off”. 

Debbie then introduced a short video extract from an interview in the summer of 2017. Here Annie talks about three memories. The first is the time, just before leaving to go on holiday, when her dad decided to make a burglar trap by stringing together pots and pans. In the second she explains the family joke about the time she couldn’t find the fridge. It recalls that in 1991, during renovations, the fridge was moved to a different room and Anna couldn’t find it – shouting through to her family “where’s the fridge!?” Anna informs us in the video, that whenever she lost anything, which was pretty often, her family would always say “it’s next to the fridge”. The third story is how she used to run the 200m as a teenager and her dad would always stand the bend to cheer her on, because it was the hardest bit of the run. In addition to sharing these treasured memories, the video also helped remind us what an engaging storyteller and conversationalist Anna was, showcasing her engaging sense of humour, her expressive face and repertoire of voices. 

Michael: Anna Austin the Influencer

Debbie then introduced Michael, Annie’s brother, to speak on behalf of her family the Austins and the Singletons. The theme of Michael’s talk was Anna the Influencer. 

“Anna Austin “The Influencer… might sound a bit unusual given the modern definition of “influencer” and since Anna barely had any TV channels, never mind any social media channels. Why call her an influencer? The reason this came to my mind is because while she might never have set out to get into the limelight, she was such an outstanding person, both professionally and personally, that I think there are hundreds of people from all over the world who she made such a positive impression on who are currently sharing with us how we are all feeling at the moment…

Anna had this incredible gift for treating people with respect and valuing them for who they were, from the instant they met, and regardless of the walk of life they were from or the circumstances in which they met…

Over these last …difficult months but the way Anna dealt with it, with unbelievable grace and dignity, never with blame and bitterness, really lead the way for everyone else; and on a personal level this is definitely what gave me the strength to cope with the situation. And so last Saturday after Anna stopped breathing something happened which I will never forget and almost unbelievably I think this is actually going to qualify as a good memory. Stephen, my mum, my dad and me sat with her and reminisced about the summer, in the format of an awards ceremony; giving recognition to some of the incredible people who came to help look after her and also some slightly tongue in cheek awards for some things which I won’t divulge. This calmness that we all felt was undoubtedly given to us by Anna and for that I am very grateful.

He closed his speech by talking how she was clearly an inspiration to him growing up but he is sure her legacy will be a positive influence and role model for her son and her two nieces. 

“I’ve got some suggestions for things that we can all do to keep Anna’s influence alive: drink Earl Grey tea (by the gallon), don’t waste too much time on social media (but wasting time with reruns of Love Actually or the original BBC version of Pride and Prejudice is encouraged), listen to 1977 by Ash, plant plants inside and plant plants outside, look up the Trees for Cities charity, perhaps learn the differences between the great philosophers (or at least just learn what Aristotle thought about things), and most of all treat everyone you come across with respect, remembering the value Anna gave to everyone, whoever they were”.

Helen, Letter to a Friend. 

Debbie then introduced Helen, who lived on the same Warrington cul-de-sac growing up. She read a letter that had been co-written by 7 of Anna’s school friends, “the girls”, friends she had made at secondary school and had remained close ever since. 

The letter revealed stories of Anna eating chips in the street (the shame!),  Anna’s ability to sleep through anything at sleep overs, it documented her rebellious streak of having her nose pierced without permission, her various hair styles and colours, dreadlocks and even a skin-head. It documented their first holiday without parents at aged 17, a long coach trip and a caravan in Newquay only days after appendix surgery. Helen said:

The rest of the week was spent making up songs, playing knock a door run, blasting out the lion king on a ghetto blaster, many, many drinking games, talking in a Somerset accent and bus spotting. Some holidays can break friendships, but not us!  We became stronger.  … After that holiday, Ghetto Superstar became our friendship song that always takes us back to that amazing time.

Helen then spoke of how the next big holiday was a Californian road trip in 2003. Annie had met the girls in LA after spending 3 months travelling solo from Santiago, Chile. Helen spoke of how they’d hired a cheap minivan. Annie didn’t have her license however…

“You were a very good back seat driver though – telling us to 'just drive' as we pulled up outside a very dodgy looking hostel”

On the way back from the Grand Canyon, there was the option to have a quick dip in the Colorado River but we were warned about the river snakes.  As if that would stop you! …. By this time we were all used to your quirky ways but drying your knickers on the aerial of the tour bus has to be a highlight! 

On your 30th birthday you asked us for a Le Creuset pot. Now in hindsight, taking a heavy pot on a night out to gift to you is not the best idea.  An inquisitive young man asked why you had a pot with you!  When you explained that it was a birthday gift he couldn’t believe it!  “You wanted a pot?  For your birthday?”  You had the last laugh though by sticking the Le Creuset sticker to the back of his shirt when he wasn’t looking!  

Helen concluded by saying:

“The girls will always be a group of 8. We will laugh and smile and dance and we will think of you every time we do. We will be bold and brave, we will wear what we want and do what we want, just like you would.  We will apply the rule 'what would Anna do?', and it will see us through, always”. 

It was mid-way through Helen’s talk that Joseph said he wanted some fresh air (I’m sure it wasn’t personal Helen). His Aunty Hannah took him outside. The need for a run around at some point in the ceremony had been antitcipated but what we hadn’t planned for was that they would be running around on the slope in full view of the service. It made for a lovely sight. Hannah said that the loud speakers meant he could hear the talks while he played and on a few occasions he came close to the window to check what we were all up to. The celebrant Debbie later said it looked like a scene from the Telly Tubbies. 

A Thinker, a “Colleague”, a Mother 

Debbie then introduced me (Stephen, Annie’s husband btw) to talk about Annie in the last 10 years, particularly focused on her academic career, our time as a couple and her role as mother to Joseph. 

The talk was inspired and built around a paragraph from one of Annie’s travel journals, when she travelled through Latin America in 2003. She had just spent a year studying philosophy at the Universidad Catolica de Chile, Santiago, and travelling solo gave her space to reflect on her future. 

She wrote:

“I have decided to be a thinker. All the mathematicians were also philosophers. All the great novelists were also philosophers. I think that applying philosophy to anything makes it better, more meaningful and more profound. This includes life. Applying philosophy to life makes you better at it”.

I spoke of how for Annie philosophy gave her a template by which to live her life and understand the world. While some academics label themselves singularly as or historians, economists, Annie was difficult to pigeonhole. She was a rare talent in that she had an excellent grasp of theory, language, qualitative and quantitative methods. I talked of how Manchester recognised her mathematical aptitude and how she would go on to define herself as a social scientist. 

If pushed Annie defined herself a social scientist -but what drove her is again found in that passage from her journal – “Applying philosophy to life makes you better at it”. What united all of her various projects -from her time with Brook Lyndhurst doing work for government, her PhD, and her postdoctoral projects and work at Sheffield was what factors, what policies, what practices, what capabilities enable somebody to live a good and meaningful life. 

I then turned to talk about how philosophy (and bar work) informed how she interacted with others”

“Anybody that spent just 5 minutes with Annie felt completely at ease. It came from a sense of ease in herself. She understood herself and was completely comfortable in her own skin. Her expressive face and her sense of humour could disarm the proudest of egos. She was able to speak on a level with people from any walk of life. Years of part time bar work helped her hone these skills. Be it the Trigger Pond in Warrington, the Lord John Russell in Bloomsbury or a cocktail waitress at El Divino beach bar in Florianopolis, Brazil. All this came in useful in later life, whether it be advising senior civil servants in Whitehall, rubbing shoulders with world leading professors or carefully conducting an interview with married couples where one partner has dementia. 

I spoke briefly about how we met and became friends working on a project together, how delays caused by a general election brought us together, how we married and the arrival of Joseph and the strong bond between them. I then spoke about how Joseph had experienced his mum’s illness, be it witnessing partial seizures, many appointments or overnight stays in hospital. I said:

While Annie acknowledged her diagnosis, she never let it deflect her from living a good life. For her, prognoses are self-fulfilling and to stay as normal as possible is the best way to proceed. As a result many colleagues and neighbours never knew what she was dealing with. Annie at 70% is as good as anyone’s best. She worked throughout her treatment as an incredible mum to Joseph,  all while – supervising and mentoring students, designing fieldwork, conducting interviews, analysing data, presenting findings, publishing papers and writing a book. 

I spoke of the close connection she formed with her multi-disciplinary medical team and how her Macmillan nurse used to say “This is Anna Austin we’re talking about. Anything for Anna Austin”. 

Perhaps the most important message to convey was how throughout the final 5 months she never became angry, bitter or hopeless. 

For Joseph the changes were gradual and incremental. Throughout, his favourite activity was watching Sarah and Duck or Peter Rabbit tucked up next to his mum. On the shelf, a gift for his mummy, a limp dandelion or hardy geranium sitting in a glass milk bottle.

I then read an extract from a letter she wrote to Joseph on his third birthday that conveyed her sadness she would not be there for Joseph when he grew up. 

 “I just hope that the love I am giving you now is enough to last you far into life…I know you’re going to grow up to be the most amazing person, I am gutted I am going to miss it…I hope there’s enough of my love-energy embedded in you that we’ll never be really apart”

I finished with:

“Sad, yes, but anxious, no. She had nothing to fear. She had already given Joseph more than enough to ensure he would go on to live a good life, a mighty fine life, in whatever he chooses to do. His mum, Anna, OurAnn, my Annie was a thinker. She applied philosophy to life and she was bloody brilliant at it. 

Reflection. 

We then had a slideshow of photos from the four decades of Annie’s life. Choosing 25 from the several hundred candidates had been an impossible task but they provided a focus as we reflected on a life well lived. Annie chose the music for this part. It was by one of her favourite bands Green Day. The song: ‘Good Riddance (Time of Your Life)’. It is often used as part of graduation celebrations in the US, but for Annie it is a song she has loved since its release when she was 17 and seems to have taken on a greater significance since becoming a mother and coming to terms with having a life limiting illness. It looks back on a life well lived and if you mis-hear the “hope you had” as “hope you have” the time of your life (as I frequently do) I think it is message to Joseph and all who will miss her. 

It is only a short song, so in the end it was played through twice. 

In Debbie’s closing remarks she trailed the two final pieces of music. 

You also have memories.  Some may be still painful and raw right now, but there are many memories of such heart-opening, amazing times, which may well be extraordinary in their simplicity.  

In a few minutes, once we’ve finished here, we’ll leave to the sound of ‘The Bare Necessities.’ In Stephen’s words: “This is another song Annie frequently sang to Joseph from birth. The line about “fancy ants” would always make him smile. The song captures perfectly Annie’s values. Happiness is not to be found by owning and acquiring more stuff. For her stuff was unnecessary and unwelcome baggage. For Annie happiness is found in relationships and valuing nature and simple pleasures: the simple bare necessities. “

Anna saw great value in the simple, unencumbered life and time spent with you who were closest to her.  My wish is that you may all continue to feel a very real sense of her being with you.  Wherever you are, there’s always Anna.

We then sat and listened to Three Little Birds by Bob Marley (ala “Don’t worry, about a thing, every little thing is gonna be alright). . It was another song chosen by Annie. Debbie quoted me describing the reason it was chosen. 

“This is one of those truly global songs that reflects Annie’s extensive travels to Africa, Europe and the Americas. It is a song of optimism. It is something she would put on when friends came to visit, it featured strongly on her walking playlists and became a song she sang to Joseph when changing his nappies. It would soothe all family members during the most difficult and complex of code-browns. In choosing this as the outro to her funeral, I imagine she wanted it to soothe us too.”

Closing 

As the song finished, the two GreenAcres staff, the celebrant Debbie, and the funeral director Rosie from Natural Endings stood in front of the coffin and bowed. ‘The Bare Necessities’ ( Phil Harris & Bruce Reitherman, from ‘The Jungle Book’) started to play. We decided to start it 41 seconds in, so it skipped over the gentle introduction).

They then opened the enormous glass doors of the front window. By this point Joseph had returned to the room.  I carried Joseph over to the oak table and we chose some flowers to place on the coffin. All were from our garden and picked in the morning.  In the basket were four types of flower. There were hardy geraniums. These are in bloom for what seems like 8 months in our north facing back garden. We inherited them when we moved in our house in 2015. Along with a wilted Dandelion were often the flower of choice that Joseph would bring for his mum after a long morning in the park with his grandma. Also in the basket were pink and white sweetpeas. Annie planted these in trays back in March. On the 17th March, shortly before going into hospital, she dug up our front lawn ready for what is now a vegetable bed. The bed has fed us well over the summer. I brought one of the courgette flowers (clinging on as we enter October). Finally the basket contained a few vivid pink fuchsia flowers from a plant she added a few years ago after admiring the riotous display in the garden of one of our neighbours. 

Early Grey Truck

We left one by one, saying our final goodbyes, placing a flower on the coffin and then walked over to the other side of the carpark where our dear friends Dan, Kyla, Chris and Mike had turned Annie’s camper van (Polly) into an impromptu mobile Early Grey truck. The only tea available was Earl Grey (of course), Deborah had been to M&S (obvs) so we had sandwiches and cakes. It had taken a full hour to boil the kettle on the gas stove. 

The weather had continued to improve. We stood and sipped tea and exchanged stories (at a reasonable distance of course). Joseph zoomed up and down on his cousin’s balance bike and ate an eye watering number of fondant fancies and chocolate tea cakes. 

And, although there wasn’t a scheduled end time (something that Annie would have instigated in the printed programme) after an hour or so we all headed for home (Manchester, Sheffield, Warrington, Cockermouth, Oxford, Sidmouth, Bristol, London). It is such a pity we couldn’t have had a bigger funeral but we very much intend to have some form of memorial later next year when the time is right. 

Directly after the service Annie was cremated at St Helen’s crematorium two miles down the road. We intend to plant oak trees at both Rainford and Dove Stone in Saddleworth, the latter being very special to us and a place we enjoyed many lovely walks in the sun and rain. 

The P word

 

 

***WARNING  - this is a very long and heavy read. Tea/coffee and chair advisable *****

"No need to reply" is perhaps the most common phrase we get in text messages at the moment. It is one of the kindest things to do, to send love without expectation. We get a lot of messages and there is rarely time, it seems, to write any kind of considered response. When things were more hopeful we enjoyed writing these blog posts, helping people understand how the system was working. Although cancer treatment can be punishing, it is offered with a view to improve the situation, to offer the possibility of an improved outcome. But when the situation is less hopeful, the future doubtful and the timeline uncertain then there is a tendency for the immediate family to close in, and the quality and frequency of communication suffers as a result. The lockdown situation only further added to this. Over the last few weeks our horizons have become rather limited. At so many points, usually around 9.30pm, when the house is quiet and all are asleep, I think I must write a blog to update where we are. But that is as far as I get.

 

There are some bits of this story we have tried to convey face to face, or at least over the phone. But the reality of an all this has meant it just isn't possible. If this is the first news you’ve read since the last blog in May, then I am sorry that we hadn't been able to speak to you. Some aspects of this story have got easier to tell, but it remains, and always will remain, bloody hard. 

 

The very early posts in this brain blog focused on treatment. It was a story of a young woman, embarking on an exciting academic career, having to "step off track" whilst she worked on trying to rid her brain of a most unwelcome tumour. The tumour was large, slow growing and relatively accessible (or operable for a surgeon). It resembled a low grade, slow growing tumour. There was some optimism among the medical team. The operation was pretty successful. Unlike a great many brain tumour patients there wasn't a "I'm sorry we can't operate" or "you'll have to just manage this with massive doses of steroids". The treatment Annie received allowed her to return to her PhD a few months later. For the years that followed the operation and treatment in 2012 she achieved some incredible things (many of which I have written about previously).

 

Scanxiety

Brain tumour patients talk of "scanxiety" that is the anxiety in the days running up to a 3 or 6 monthly MRI scan. After a session in the MRI machine we would sit in “waiting area 1” to be called to a consultation room to speak to the oncologist. "I have had a quick look at the scans and it is looking pretty good", "no change", "small change but nothing to worry about", or "I'm sorry". Whether the news good or bad, the one thing we never spoke about was prognosis. Had we asked, the doctor would have been straight with us. But all along we shared the view that somebody telling you that the chances of surviving this beyond “x years is y” can almost become self-fulfilling. Such knowledge closes doors. shuts down hope. 

 

In July 2017 instead of getting the 5 year “all clear”, we got the devastating news that the remaining bit of the tumour, the bit they couldn't remove in 2012, had started to grow again. Our oncologist was visibly upset by the news as he broke it to us. Perhaps this was the chance to talk about prognosis. But again, the focus soon shifted to action. Over the next 2 years came three further rounds of chemotherapy. It seemed surgery was not an option and radiotherapy unsuitable. For a few months the tablet based chemotherapy (known as TMZ) was holding it. We almost got back to normal, but it was short lived. 

 

In June 2019 the decision was to look again at operating. For us operation number 2 was about removing as much of the tumour as possible. It was about reducing the size of the job for any subsequent chemo. The operation seemed to go well. Annie was home the next day. Given that TMZ had stopped being effective we switched to more traditional chemo (called PCV). While we saw the operation as a form of treatment, for the MDT (Multidisciplinary team) it was primarily one of diagnosis. For the first time since 2012 they could be certain what the tumour had become. 

 

The story we told on this blog in summer of 2019 was one about the treatment - how it seemed to work at first but it was playing havoc with blood counts. A reduced dose seemed hopeful but it didn't hold for long. What we didn't share on here back in July last year was the news of what would be the first of two prognosis conversations.

 

Conversation 1

A week after the operation in July 2019  the surgeon called us to his office. He showed us the before and after scans. He had been able to remove a great deal of the regrowth. But he was straight with us - the pathologist had confirmed the tumour had advanced to a grade 4. There is no higher grade in cancer. Furthermore it was a most insidious form of tumour called a glioblastoma. For some brain tumour patients, the first point they find out they have a tumour is news is it a grade 4 glioblastoma (or GBM4). Our trajectory was different - one of a progression over several years and with almost 5 years in remission. The surgeon advised us to speak to the oncologist about next steps, but when we were ready. We took the opportunity of seeking him the same day. For some inexplicable reason we rushed a breakneck speed across the city to the cancer hospital. We were squeezed into the morning clinic list. It was only here that Annie asked the P question, the question of prognosis.

 

-How long have I got?

-Worst case 6 months Best case 3 years - but I will do everything I can.

 

This information, calmly delivered, from a doctor of over 40 years of experience, Hit. Us. Like. A. Train. After a few hours Annie dealt with it in the way she has all the way through - it is not 3 years, but 3 plus years. She would focus on the plus. She didn't go as far as some in this situation would and google GBM4 until she found a black swan - like the bloke who has had it for 25 years and wrote a best-selling kindle book.  She just got on with it. I followed her lead. 

 

Running out of options

The chemo that followed this news held for a while but when blood counts started crashing, it felt like we needed to consider all options. At this point brain tumour patients and their partners start bargaining, and doing radical things like moving to Germany to get on a drug trial, or seeking to pay through the nose for treatment not available on the NHS or buying cannabis oil from their hairdresser. We went as far as travelling to London to get a second opinion from a leading oncologist and a top brain surgeon. Both agreed the treatment we were receiving was equal to theirs, to not give up hope and to keep going. Had we shared the prognosis news more widely I'm sure somebody would be contacting us with an idea of injecting turmeric every morning or some such. But the brutal truth about GBM4 is there is very little can be done. In part this is not helped that it seems to affect people very differently.

 

It was at this point in the summer 2019 I joined a forum for partners of brain tumour patients. What I wasn't prepared for was the large proportion of these to be partners of specifically GBM4 patients. Inevitably those that post most on such a forum are the most lonely, the most extrovert, most vulnerable, most isolated, most anxious and they share everything, sparing no details right up to, and in some cases the point of death and the weeks following. Instead of finding fellow travellers, I found trauma. After 6 years in a bubble of determined optimism I had an insight into the bubbles of others. Not only was it horrific, it also presented a host of possible pathways for what our future would hold.  After a couple of days I decided to quietly exit for the time being.

 

 

Back on the table

Springtime 2020 brought the somewhat surprise news that a third operation was to be offered. If Annie was willing, they took the view a further "debulking" of the tumour would buy us more time. After said operation radiotherapy was also back on the cards. We said yes. A week on from the third operation, the surgeon offered a 4th. There was more he could get. We consented. It all seemed to be about reducing the levels of follow-up radiotherapy. As you probably know from previous posts this fourth operation didn't go as well. Upon waking Annie in recovery they realised she had suffered a stroke. Further assessment showed a near total loss of movement in her left arm and left leg, She spent 2 weeks in hospital at the height of the original lockdown.  All visiting cancelled. During this time physio commenced rehab work, developing methods to keep her mobile and maintaining core strength and stability. Then one morning my phone rang, it was the surgeon. Can you come down to the hospital this morning?  I'd like to speak to you both together. 

 

Conversation 2

I got the ward before him. The nurse turned me away and sent me to a small family room. The surgeon said a few words to the charge nurse and I was allowed in. Mask and visor, gloves, apron. At first I stood 2 metres away from Annie. He ordered me to sit next to her. Curiously he had no PPE. It was only a day or so later that I realised why. This was prognosis chat 2 and this time he was instigating it.

 

-I'm sorry, we had hoped to buy you more time but it is a matter of weeks not months.

 

The tumour it seemed had spread to an area at the back of the brain in the spaces called the ventricles. He kept it brief, allowed us to ask questions and then left us alone for a few minutes. A nurse interrupted us and instructed that I was not to leave. The chief nurse was on the ward. After a few minutes more she beckoned me out to the corridor - walking 5 paces in front, checking around corners, suggesting on two occasions I hang back, or step into a doorway, eventually we safely reached the exit door and I was ejected into the atrium. The whole process was so farcical it distracted me from the enormity of the news. Later, at my sister's house it sank in.

 

All our energy became invested in getting Annie home - out and away from Covid wards and to be with her family, including her soon to be 3 year old son. Staff at the hospital, the commissioners of continuing health care, Macmillan, district nurses and city council pulled out all the stops for us. Joe's birthday was the target date and she was out and home with a day to spare.

 

Once the subsequent infected wound site was sorted we have eventually found a rhythm. To onlookers it is a busy house of coming and going. Joe's return to nursery 3 days a week brought much needed structure to us all. Districts nurses once a week, Macmillan nurse once a week, a physio and consultant when required, carers 4 times a day. Every day is different but a typical day for Annie over recent weeks has become breakfast and medications at 8, carers at 9:30, a visit from a friend or a medical person at 11. lunch at 1pm, Nap from 2-4. Tea at 5.30, cartoons with Joe, medications, ready for bed 8pm, lights out at 9. 

 

Steroids mean appetite is healthy. Eating is very slow. Meals can last 2 hours. A trip to the toilet can take 30 minutes. A shower takes 2 hours. Carers can call anytime between 9-11. 12:30-2, 3:45-5, 7 and 8:30pm. Although welcome and needed, such calls mean like banana man we are ever alert for the call the action, anticipating a conversation to be interrupted. or the conversation to be about the carers themselves – “are the carers here, when will they be here? I wonder who it will be today”?. This leaves 90 minutes a day. Most safely 11-12:30 when we can be pretty certain that Annie will be in good form and nobody will interrupt.  At first these 90 minute slots were being auto-populated by medical appointments - of the "same time next week variety". We went full circle. Tried to move to phone call follow ups, go for whole days without any visits. It has been a period of experimentation and failure. There is no typical week - but here is a kind of model that is emerging for the 11am slots. 

 

Monday - Macmillan nurse- this is blend of family and individual therapy, care coordination and pain management/medication review. Our nurse is a GP, palliative nurse, therapist and all round fixer.

 

Tuesday - District nurse - this is more about physical examination - ensuring skin, blood sugar are in good order. 

 

Wednesday - Bath day - hair wash - bath, blow dry, a shower or a bath is physically exhausting but essential for wellbeing. 

 

Thursday - A trip out. Joe is not at nursery today. this is a day to get out to a park or beyond. We’ve kitted out the van to carry a wheelchair - so can travel. We even had a day at Monkey Forest in Stoke. 

 

Friday - VIP - Fridays have become a day for a surprise friend to visit.

 

Saturday - this has become about the three of us. A time for Joe to remember what life was like before the stroke and everything that has come with it. After the breakfast care visit - the lunch and teatime calls are cancelled. It is a day for doing relatively little, recharging batteries.

 

Sunday - a day for Annie to be with her close family - reading a book with her mum, looking at photo albums with her dad, discussing PhD progress with her brother. It is a day for me to take Joe out for a visit to his cousin's or to some form of transport museum. 

 

This timetable is not set in stone - but it has evolved over 3 months. One of the reasons for writing this now is to share the news that we had another scan. The news could go two ways - either it will suggest we have a bit more time sustain this new rhythm or the news that we shifting to the next chapter, to a different level of care.

 

The final scan - 5th August 2020

Leaving the house at 6:45am, it was an early start. We are lucky the hospital is 10 minutes away and at that time in the morning it was easy to park. As first scan of the day we were seen straight away. The biggest challenge was how to get on the scanner bed. I suppose they are used to people either being able to hop on, slide over or arrive lying on trolley. In our fancy wheelchair were none of these. Eventually we worked out we could use the handle of a hospital wheelchair for Annie to stand up and hold on to and then, in a scene not unlike the Paul Daniel’s magic show, the chair was whipped away and swapped for a big trolley.

 

The other odd thing about MRI scanners is that they are massive magnets – so all, and I mean all – metal stuff (like your flask of coffee, watch, coins, phone etc)  has to be put in a locker. They asked if I wanted to come in with her – I said yes before realising it would involve sitting on a futuristic plastic chair with both ear plugs and ear defenders. Annie coped amazingly. After a few false starts with the rather too accessible panic button we managed to get through the 30 minute scan. Back in the anteroom we had the getting back into the wheelchair routine down. Several of the radiographers came off their machines to lend a hand. I am sure many familiar faces to Annie over the last 8 years and countless scans. Universally lovely people.

 

Conversation 3

We were then put in a room that was so small it was surely a cupboard. Annie’s regular doctor is shielding at home but we met with one of his team who suggested the scan showed progression. This was not a surprise. But it is not the news we wanted. Later I the afternoon Annie’s doctor phoned and we had a chance for a further conversation. In essence, what was removed in the two previous operations has regrown. It has continued to spread elsewhere in the brain. He was somewhat surprised to learn that she was still relatively mobile, able to transfer to the shower, sit out in the garden. I was proud of this. Ha. Annie once again exceeding expectations. But his surprise is nothing to celebrate, it also means he thinks we don’t have much time left.

In the days since the scan we have started to see some changes: awake for two hours (8-10) to have breakfast and get dressed but then asleep until the mid afternoon. Perhaps the magical 11-12.30 slot has moved to 4pm. 

 

What will happen over the coming weeks? Please don’t Google it.  If you’d rather not know skip this next paragraph.

 

Gradually over the next few weeks she will start sleeping more and more. Afternoon naps will become whole day sleeps. Indeed on the day after the scan, this was the case. Speech, eyesight and mobility will further diminish. Balance will prevent transfer to a wheelchair without a hoist. It will become difficult to swallow tablet medications. Drugs will be administered by injection. She will be unable to get out of bed. She will lose consciousness. No food or water will be provided. She will gradually fade out. It could take day for her to die or it could last a week. It is possible she could suffer a further stroke, or a form of haemorrhage or could pick up a respiratory infection. What I think we can be certain of, that, unlike other cancers, she will not be in pain. And we have not seen the dramatic change in personality that plagues some sufferers of aggressive brain tumours. That said, the tumour is expectedly creating a degree of an altered state of reality, some delusion about time and place and visual and aural hallucinations, but in many senses it is still the Annie we love.

 

I realise this is a heavy read. But keeping this from you, carrying this alone or within our household, is a burden. The hardest thing is having to retell this over and over, trying to recall who knows what. Keeping it closed and secret is how people dealt with cancer in the past. There is nothing to be gained from keeping this private. If you read the previous paragraph you will have spotted that I used the word die. I realise more and more that we, as adults, do a very good job of avoiding the word. For the likes of Joseph we also need to be clear and straight with him. To talk around death – as passing away, going to sleep or becoming a star will only hurt more later. I’ve already started to work with a child bereavement specialist and am feeling well supported. It is difficult to gauge how much he understands, but he does ask about whether mummy will get better and we are straight with him when he does. 

 

This is an impossible situation. If you want to do something, then please work out how to record and share a voice memo on your mobile phone. Find a lovely picture of you and Annie and record yourself talking about it. If not a picture, maybe an object. Take a picture of the object and tell us a story about it. Or maybe a song. A song from a nightclub in 2005, a gig or a car journey to a festival. Annie is struggling to read but she can listen and with a bit of effort can make out a picture on an iPad.

 

If you want to come and visit. Please get in touch with me. Don’t wait or put it off out of politeness. If you need to come over and spend a short time please do. It will have to be short, half an hour really. Annie can’t do long visits. There is a possibility she will be sleepy when you come. A few weeks ago we’d reschedule in such a scenario but perhaps now it is different.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Nil by mouth (4/4)

If you are eating your breakfast whilst reading this instalment- you might want to put down your spoon for a paragraph or so. In the first couple of days after the last operation the wound continued to leak. Given the location (just above the right ear) the fluid in question was CSF(Cerebrospinal fluid). The surgeons added additional sutures (stitches) twice in the first two days after the operation. It seems to be preventing further leaking and Annie was able to go home. Once at home it continued to leak –often only perceptible to Annie. If nothing else it was an annoying in the same way a slightly running nose is. It was worse when she lay completely flat and made better by sitting up in a chair. The worry with something like this however slight is if something can get out then infection can also get in. After a week at home it was time for the district nurses to come and take the stitches out. The wound had healed well. There were no signs of infection and Annie was well. There was no sign of anything serious but they were concerned by Annie’s mention that the CSF was still leaking. So they stopped the procedure and we contacted the hospital. This is one of the moments when you want to have the surgeon on your mobile and have him pop over with a few of his team for a look. In reality his schedule means some days he is pretty much in theatre all day until late, in clinics or not available at all (no jokes about golf/private work please). It so happened this was Annie’s surgeon’s main elective surgery day.

It all started 3:30pm I was in an email exchange with Annie’s key nurse at the hospital. With the head person in theatre other doctors in the team were consulted. The following morning the key nurse advised not to touch the stitches and to await the surgeon’s advice. By 10:30 the view came through that Annie needed to go back into hospital to have it looked at and that Ambulance transport would be arranged.  At noon Annie’s GP and the Macmillan consultant visited for a scheduled visit. They offered assurance that it was a matter for the brain surgeon.  At 14:30 the hospital called to say that a bed was available on a neuro specialist ward was available for Annie but that no transport was available so we would have to bring her down ourselves or to take a taxi. There were two problems here – first we really didn’t like the tone that she was being re-admitted. It felt like a backwards step. And second the through of Annie travelling to hospital in a taxi in her condition and with the current pandemic seemed far too risky. Annie’s key nurse attempted to swing something for us to no-avail. There was no transport. Full stop.

For a moment I was tempted to phone 999. But they would have taken her to the nearest A&E. Instead we mobilised the taxi ramps. Using Annie’s mum as a stooge in our dress rehearsal -we practised loading and unloading Deborah in and out of our camper van. Once confident we knew what we were doing – we gently wheeled Annie into the back of the van and secured the chair down with straps and chocked the wheels (all camper van owners have some chocks to level out the van on uneven campsites, so they came in handy).  Annie’s brother, a hospital doctor, rode in the back and I drove down the half empty streets to the hospital. It took us about 20 minutes. It was a warm day but Annie felt cold so we kept the van pretty warm. Just as we were pulling into the carpark space Annie was sick. Thankfully we had stuff in the van to help her get cleaned up and we left Michael to clean up while we wheeled down in our masks into the deserted hospital. By now it was 16:30.

When we got to the ward = Annie had her own room. It was as hot and airless in the room as it had been in the van. My challenge was how long I could stay with her until I got chucked out (no visitors permitted rule). In the end I got about 90 minutes. Student nurses busily got Annie settled, doing blood pressure fetching her a tooth brush to freshen up, and filling in that whiteboard with -name, nurse and “what matters to you?” information. When they asked Annie the “what matters to you” question I thought she was going to say “getting the fuck out of here” but she instead said something more anodyne – like “keeping in contact with my family”. In the meantime the nurse in charge asked me lots of questions about Annie, her condition, how we travelled in, her earlier sickness. Through all this Annie had about 5 or 6 partial seizures. I told them it wasn’t unusual for her to have one or two and sometimes as many as this. But I soon found myself in a catch 22 situation.

 “Oh so the seizures are not well controlled?”

 “No, no they are, this is very unusually.”

“Oh – so this is unusual -this means she’ll need to stay in for observation”

“No no – this DOES happen sometimes, she’s being having these for quite some time”

“Oh- so they are not well controlled” –

“oh, erm. Please don’t admit her, We just want her home”.

Not only did I want to stick around to be an advocate through this process -I also wanted to be there when the doctors came. I wanted to be there when they examined her wound. I wanted to know what their plan was. The problem we had was the surgeons that were working would have to prioritise emergency cases above us. The nurses continued to page the doctors – but by 18:00 there was still no sign. The sister came to the door and gave me a glance to say – go home. I kissed Annie goodbye and just as I got to the door one of Annie’s surgical team arrived.  We exchanged a few words -he apologised it had come to this and assured me it was going be okay. Then I was escorted to the door. Whilst washing my hands and binning my mask there was one more opportunity to plead with the sister not to admit her before heading down the corridor.

 Of all the things that have happened over the 8 years this was the hardest moment. Harder than waiting 5 hours for news of the first operation. Harder than the news the tumour had reoccurred. Harder than the news that the chemotherapy was no longer effective. I took a wrong turn and ended up on a different floor -with porters in full PPE pushing patients in masks and staff clocking off for the day. Back in the carpark we phoned Annie’s Macmillan nurse.  She put us at ease. She said the team would phone the ward and reiterate our preference. We went home had some tea and then returned to the hospital to bring some clothes and toiletries. I handed over the bag at the door – there was no way they were letting me in again. I could barely understand what the nurse said to me in our brief conversation. She spoke behind mask and full Covid visor.

Annie was nil-by mouth. If a slot came up in the theatre they wanted her ready to go down to theatre. They were also concerned because her temperature was slightly raised when she’d arrived on the ward. The temperature coupled with the seizures they were concerned she might have an infection. I wanted to scream – but “she’d just been sick- but you wouldn’t let her have a drink of water, but the ward was too hot, but she hadn’t had her usual nap this afternoon!! “ but the door closed in my face before I could open my mouth. During these strange times, the job of a nurse is not to bargain with family members at the front-door.

Once it became clear no surgical capacity was available that evening – they let her have some tea and toast. The following morning nil-by mouth started again. They put her on a drip of Anti-biotics.  She waited the whole day for a gap to appear. Early evening the surgeons returned = said they would get to her later the evening and to continue to fast/no water. Just as I was going to bed a junior doctor phoned me -we are going to operate tonight. At 2:30 am Saturday morning she was wheeled down to theatre. The procedure lasted just under an hour. They basically opened up the stitches and repaired any pesky holes in the dura. They cleaned it all out as best possible and sutured it back up.

When I spoke to Annie over Facetime on Saturday morning -she was in great form. The wound was no longer leaking. She’d had a huge breakfast of Weetabix and toast. It was a complete transformation from the person I had left 36 hours earlier. For the rest of the day she remained on an IV drip and got an early night.

It is not yet clear when they will let her home. Much of this depends on her blood pressure returning to normal (for Annie) and the blood and CSF tests showing any infection is under control. Our home set up and incredible support network means we can offer the care she needs so we’ll be doing everything we can over the next few days to ensure she can come home.

Although unwanted and unexpected, Annie’s stay in hospital has given us a moment to draw breath, to re-pot a few tomato plants and build some dens. We have a  pause in the visits and phone calls. It means when she does get out we’ll be refreshed and ready.

Have you got a hairdryer? (3/4)

Discharge means you leave the hospital umbrella and move to support locally. In our case it is jointly through three services: Macmillan nurses, district nurses and a private sector care provider paid for by the NHS/Local authority.  

The role of the carers is perhaps the easiest to explain. They are commissioned to offer 4 care visits a day – breakfast, lunch, tea and bedtime. Given Annie lives with her family she does not depend on the carers in the same way somebody living on their own would. At first I wasn’t quite sure what the point of the carers was. I wanted to make her breakfast, I wanted to help her get dressed, use the loo. You soon realise this is a very tiring thing to do, especially when you have a three year old who quickly clocks on that there is a new demand on your time. It isn’t unusual for Joe to shout “I need a poo” just as you are counting out pills or fetching Annie a drink. But it is strange to have carers coming in at first. After a few days it became quite normal and I learnt to absent myself- take a shower/read Joe a book/water the plants/go for a walk. Lots of people will earnestly say to you “Hey Steve, accept help” “let them take the strain”. Yes, yes,  I agree but it is not quite as simple as that. Let me explain.

Carers work in pairs – usually one man one woman. It will usually be the same two pairs, each calling twice in the day. But given the need for time off etc – it will sometimes be new people. They won’t know of what Annie can and can’t do. They are not a massive fan of the re-turn mo-lift truck thing and a baffled by the leg brace. It took a few days to fall into a rhythm. We know now to get clothes ready the night before, to have tooth brush, bowl for washing, when to bring the hairdryer downstairs, when to leave out some clean sheets.

On the best days, on the days we nail it,  Annie gets up with us -we all have breakfast at the table – then the carers come and help her get washed and dressed. We go out for a walk or inspect the vegetable patch. We have lunch together – and then the careers come to help her get Annie back to bed for a nap. At the moment Annie is best when she can have a long afternoon sleep free from visitations or calls from various health professionals. This also means we can have tea together and Annie’s mum can spend a couple of hours with Annie one-to-one while I put Joe to bed and I can watch mindless TV with Annie as normal (Friday Night Dinner and Fawlty Towers both regulars at the moment). This invariably means she sleeps through her tea time care visit and it means the carers can catch up with their other clients. As you’d expect they are fully masked up – so we have never seen their faces. They are great with Joseph – putting him at ease and asking him if it is birthday again today. He calls them mummy’s nurses and seems to understand why they are here and doesn’t seem phased by the masks.

When it doesn’t work so well is if they arrive midway through breakfast  or lunch, and as a family group we naturally abandon our conversations in the same way you do when the taxi arrives to take you to the airport. It is difficult to remain normal -Joe picks up on this flapping and finds the loudest toy to hand and starts to scuttle about under everybody’s feet. Annie doggedly chews her muesli and calmly sips her tea, seemingly unfazed as two masked carers wait on in the hall. Thankfully this doesn’t happen too often.

And then we have the Macmillan service. Their capacity to support us is bottomless. (I’ll no doubt write more about them in future blogs so will keep it brief here). Annie has been meeting with the same Macmillan nurse since last summer. They both have one son called Joseph and Annie is completely at ease with her, natural conversation over a pot of earl grey. The situation is different now. Annie’s nurse has to wear PPE and cups of tea are no longer offered or expected. But what Annie’s nurse can do is fix things, sort things and offer assurance to us all. A quick text to Annie’s nurse and the next day Annie’s GP, a Macmillan physio or consultant knocks at the door. It is an incredible service that combines a joined-up-ness you rarely see in hospitals and yet has the headspace to be compassionate. The Macmillan service works really well with the district nurses. They are incredibly considerate our space – they will always check if it is okay to visit and will work around our plans.

I feel incredibly lucky that we have this face to face service during this pandemic. As with the hospital staff and carers , they are great with Joseph. He’ll often become Doctor Joseph when they call – making brief and surprise appearances during their visit. It always helps to lighten the mood and try and make all of this a little bit more human.

In the next blog I will focus on an unexpected return to hospital.

Key figures and Withheld Numbers (2/4)

When in hospital Annie was under the care of her surgeon. She was on a neuro- specialist ward led by a matron/sister etc.  She was being visited by physios every day to work on the process of transition and how to move in the bed. When I asked the physio how I could shift Annie up the bed she said “ask her to move up the bed”. I hadn’t thought of that. Instead I was grabbing her under the arm pit and attempting to shove her northwards. It makes you realise how important that initial physio work is. They are not only keeping you moving, they are telling you how to move safely and how to ward off over eager carers/nurses from doing too much. It is about keeping as active as possible without putting yourself at risk. Annie being Annie, she loves a clear instruction a programme. Years of Pilates is coming into its own right now as she understands how to move and maintain her core stability. The stroke means balancing can be tricky – the physios help you to find your centre, sit straight ready to transition.

As we started to move toward discharging from the hospital the Occupational Therapists, who share an office with the physios, would normally come to assess the home to see what you might need. With the current situation this had to be a virtual visit. Armed with a tape measure I was measuring chairs and steps, door widths, radiators and spaces. Then their role is to put in the order to the Equipment services folk. Where we live this is a matter for the local city council. What I learnt from this process is that although we were using video calls to do training and home assessment – these systems are mainly based on people phoning one another and leaving answerphone messages. Given our house sits in a mobile signal blackspot perhaps the most stressful thing about this discharge process was perpetually missing calls and trawling through answerphone messages from “Withheld” NHS and Council numbers” with questions like – will you be in? = or can you call us back on 0161 228 5blur8blurrryshat,*crackle* thanks bye! To answer a few questions.

If we want updates from the hospital much of this is done through phoning the ward number and hoping they will pick up. If you can speak to the nurses looking after Annie  that day you strike gold and you can usually get 5 minutes to ask some questions. Inevitably one will think of all the important questions once you’ve hung up. But you have to be proactive because they will not phone you.

During this C19 lockdown one of the most reliably sources of information and assurance has been through Annie’s key worker/ specialist nurse -who is a nurse practitioner in the brain surgery team. We find the most successful way to communicate is email. This nurse was working between hospital and home but was online most of the time and able to access notes/assessment/results and also had the surgeon on speed-dial when required.

You also start to realise how hierarchical the NHS is. There are processes and timescale. There are ways of escalating and speeding up processes where necessary. You realise that people are incredibly compassionate. So many of Annie’s immediate care team had small children themselves. Everybody was pulling out every stop to get her back in time for Joe’s birthday. Where necessary the lead consultant can throw his weight behind the plan and it clearly oils the wheels. Yet there is also a firewall that surrounds him. When he wanted to meet with me to discuss the outcome of the operation the communicated with me directly through mobile. In a system based on “Withheld numbers” but it seems inappropriate to contact him when at our lowest ebb. We fall in line and go through the suggested channels.

Everything I have mentioned so far is how we are supported remotely by the hospital. In the next blog I will focus on the support we have at home.

I don’t want our house to become a hospital. (1/4)

In this blog I focus on what has happened since Annie came back from hospital. To recap 15^th April was the 4^th operation. During this operation Annie suffered a type of stroke during and it meant she awoke with a loss of movement to her left arm and leg. She stayed in hospital for 2 weeks. In the meantime we started to make some adaptations to allow her to come home. The deadline everybody was working towards was Joseph’s birthday on the 29^th April.  On Friday 24^th April the news came that they were happy for her to come out on the Tuesday in time for birthday on Wednesday.

Bed

We needed a bed. One of those electric beds that go up and down, with sides, wheels etc. We needed a space for it too – so we took the sofa out of the front room- put it in the back room (where it actually fits a bit better). We needed to transform the front-room into something resembling a bedroom – something that was functional but not too hospital like. We left the hifi, vinyl records and TV as they were. We swapped the chest of drawers for a taller set to have space for clothes and toiletries. We took the net curtains from Joe’s room for privacy. We moved a small book case with Joe’s books to allow him to have a presence in the room and to encourage story reading with Annie once she got home.

Chair

Oh yes and the armchair: we also have a chesterfield armchair in the front-room – it was from a charity shop 10 years ago with broken casters and ridiculously low to the ground when seated. My first idea was to ask my friend Danny to fit me some legs – but the OT said we needed an ideal height of 52cms. That would have meant some pretty bonkers twiglett legs. Dan’s solution was to make a kind of platform out of fork lift truck pallets. Annie’s dad Allan then carefully sanded and stained and, well, it works. It is surprising comfortable, earth-quake-proof-stable 51.5cms, (but it will not be winning any design awards any time soon).

Commode and whatsit

We also needed a commode chair – ( we don’t have a downstairs loo), a wheelchair for getting into the kitchen. To get from bed to chair requires a transition on something called a Re-Turn or a MoLift (in fact it seems every professional we meet has a different word for what is essentially a very fancy porter’s sack-truck on casters). So we needed one of those too – a relift moturn trolly wotsit. We also needed training. Normally you’d go into the hospital to get a demo from the physios but with covid19 this wasn’t possible. In the end we had a Facetime demo which worked pretty well. 

To transition to a wheelchair from the bed there is a meticulous process to follow. In case anything happens to me -I’ll note it down for you here: First job is to locate and fit a metal leg brace to Annie’s left knee. It has four clips that have to be done up in a particular order. Almost everybody attempting this will put in on upside down 3 times in 10. Once on we need to fit a Velcro sling to the left arm. Then with two people- we help Annie swing round into a sitting position on the edge of the bed. Feet flat onto the Re-turn with shins against the front pads. Brake on. Annie pulls herself up into a standing. Once she has her balance brakes off – and slowly turn and roll back to the awaiting chair. When calves touch the front of the chair -stop, brake on. And then Annie lowers herself down. Leg brace off ASAP (it v uncomfortable but plays important role in protecting her knee, whilst also bruising her good knee. Annie's brother Michael has pioneered an innovative solution for this using a travel pillow. I’m encouraging him to publish it in the BMJ). Once in the chair we can loose the arm sling. It works best (and is safest  to do with 2 people – one on each side, but in the middle of the night we are starting to perfect solo missions with minimal light).

Now as you may have noticed, that is quite a bit of equipment to source over a weekend in lockdown.  The bed came very easily. The other stuff dribbled in over the next day or so. It meant for the first 48 hours she was stuck in the bed but at least she was home.

Thankfully we didn’t have to rely on our FaceTime transition training completely as two physios from the hospital kindly came out to see us and supervised us through our first attempts. There’s so much to remember – and all while also making sure we don’t put our backs out. For the first few days I was raising the bed 3 foot into the air to give myself a “safe working height” but frankly it added about 10 minutes to the process. Kneeling is the way forward.

Ramps

With the weather improving we also wanted to have a way to get into the garden. I spotted some Taxi wheelchair ramps for sale online. They are super lightweight and with them we can get a wheelchair out through the backdoor and into the garden and even down the side passage and out onto the street, all with relatively little fuss. The toughest bit was convincing Joseph that the ramps were not exclusively for rolling cars down. The first few times he was very cross about us moving them.

Stairlift

Because our house has one bathroom to get upstairs for a shower would require a stairlift. We were recommended a person who could fit us a stairlift on a rental basis. You get a brand-new stairlift fitted for a fee and then pay a monthly rental. They only take about 2 hours to fit -and sit on the stairs so cause minimal damage/impact to walls/skirting. The issue we had was the landing has one turn at the top. The choice is either a very expensive lift that goes around corners or to build and fit an additional step at the top. Danny’s dad Alan came to the rescue and made such a step using only measurements from a text message. He got the measurements mid afternoon and by 8pm it was fitted and in position. We hope to have the lift fitted sometime next week.

Table

It is only after a few days of using the equipment that you start to work out what you do and don’t need. We started with a plank of wood as a makeshift bed table -but now have one of those tables on wheels. But we also decided to send back an oversized dining chair that didn't really work. In fact we also put all but one of our dining chairs into storage to make space for the wheelchair. Most of Joe’s toys have been filed away upstairs but importantly not all. We are conscious not to medicalise our house and to make it feel to him like he is being driven out by the new arrangements.  After a couple of days we started to get out into the garden with the wheelchair and even started a routine of going for a morning wheelchair vs balance bike race down the former railway track that runs behind our house. The balance bike always wins by a nose.

In the next blog I’ll talk more about the people that are now supporting us.

Rehab (you know the tune!)

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 😁

Book Recommendations

Here's a list of books suggested to Annie by family and friends ...

1. A Confederacy of Dunces. (It’s bloody hilarious)
2. A Gentleman in Moscow by Amor Towles. (I really, really loved that book ; Really good escapist stuff)/
3. Canal Walks by Julia Bradbury.
4. Eleanor Oliphant is Completely Fine by Gail Honeyman (2 votes).
5. Galbraith mystery books
6. How to be a woman - Caitlin Moran (belly laugh funny)
7. How to Pray for Normal People (Pete Grieg) What it says on the tin
8. Innocent wife' by Amy Lloyd (woman falls in love for murderer on death row, he's released, they marry...)
9. 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!!)
10. Ken Follet Century Trilogy (Really long but un-put-down-able.).
11. Mallory Towers, Enid Blyton (Easy escapism read. Reminder of stuff she read as a youngster).
12. Mythos Stephen Fry
13. Neverwhere Neil Gaiman
14. Persian Fire and Rubicon, by Tom Holland
15. Philip Kerr Bernie Gunthie books (murder mysteries set in Berlin in ww2 / cold war,)
16. Philippa Gregory series-
17. re-read Adrian mole books (easy to read and very funny).
18. Shantaram by Gregory David Roberts
19. The Bookshop by Penelope Fitzgerald ( a short book wonderfully observed)
20. The Cockroach by Ian McEwan. Great political satire!
21. The Hundred-Year-Old Man who climbed out of the windo and Disappeared – Jonas Jonasson (Fab book, Funny and clever; v good).
22. The Loud Halo by Lillian Beckwith (life on a Scottish Island)
23. The Music Shop by Rachel Joyce (a novel )
24. The Neapolitan novels x4 by Elena Ferrante starting with My brilliant friend – (excellent; fantastic; really enjoyed them)
25. The Number 1 Ladies Detective Agency books by Alexander McCall Smith
26. The Once and Future King. TH White -
27. The Postcard - by Leah Fleming!
28. the Potkin & Stubbs series – (“yes the target audience may be 10-12yr olds but the author is my sister in law”)
29. The queen and I Sue Townsend
30. the Rivers of London series by Ben Aaronovitch. (light fun reading).
31. The Street Lawyer by John Grisham (like every other Grisham)
32. The Unlikely Pilgrimage of Harold Fry – uplifting.
33. the Witcher series by Andrezj Sapowski
34. Things I don’t want to know’ by Deborah Levy
35. Three men in a boat Jerome k Jerome (good for a laugh)
36. Three Women by Lisa Taddeo. (Totally up her street and a page turner to boot!)
37. Trash by Andy Mulligan
38. What Would Boudicca Do.
39. Wolf Hall by Hilary Mantel