Friday, December 14, 2012

Christmas message 2012

We shall overcome. This is Hoxne man in our local millennium wood

Merry Christmas everyone.

You may already know that 2012 has been an annus horribilis for us. On 17 May Sam suffered a massive stroke on the left side of his brain. It left him with no movement on the right side of his body, with very badly affected speech and language, and an unquantifiable effect on his abilities and understanding. Sam is 72 and had just been diagnosed with atrial fibrillation, a heart condition which probably triggered the stroke. He has remained resolutely positive, optimistic and cheerful even when Camilla and the rest of the family have been pretty miserable.

Sam in Beech ward a few days after the stroke with all four sons -
from left, Guy, Ben, Nick and Tim

In many ways we have been very lucky, especially with the treatment Sam has received from the NHS.  After only four days in the Norfolk & Norwich Hospital, Sam was sent to Beech Ward at the Norwich Community Hospital, a dedicated stroke unit which is only two years old. Sam was there for almost two months and received physio and speech therapy every weekday. We saw a little improvement in that time, and about six weeks after the stroke he started to be able to move his right leg. After two months Camilla took the difficult decision to bring Sam home, on the basis that what he really needed was love, and in spite of daily visits he wasn't getting much love in hospital. We are fortunate that most of our house is on one floor and we were able to get some ramps fitted to improve wheelchair access. Sam moved into what had been Ben's bedroom and we arranged for carers to come in several times a day from a local agency.

Sam coming home on 18 July
Sam standing on his own for the first time with Emma (left) and Jenny (right)

Once Sam was home in mid-July we moved to “stop-gap” therapy from our local NHS community health team. Our physio Emma and occupational therapist Jenny did a fantastic job and somehow managed to arrange for Sam to have physio every weekday morning – probably because it was mid-summer and things were relatively quiet for them. By mid-September Sam could walk, very slowly and with two people helping him and moving his foot occasionally, for about 10-15 yards. He could transfer himself from bed to the wheelchair, or from wheelchair to easy chair, without using a transfer stand. He'd also gained a little movement in his right arm, and his trunk mobility had improved from a score of 5 out of 40 in July to 30 out of 40 in September. His reading had improved to the point where he could read whole sentences, although his speech was still very hard to understand.

Sailing with the Nancy Oldfield Trust in October

In October Sam moved to the care of Icanho, an outpatient rehab unit in Stowmarket for brain injury and stroke survivors. Icanho has a reputation for pushing people along if they are willing to be pushed, and Sam is clearly showing lots of willing. He's there three or four times in most weeks, fortunately with volunteer drivers doing most of the to-ing and fro-ing – we are 18 miles from Stowmarket.  Icanho supports not just Sam, but also Camilla and the rest of the family.

Where we are today

Sam is now walking around the house most of the time, slowly and with a stick and with Camilla helping him, and only using the wheelchair when he is very tired, or when he is out and about. We only have one carer to help Sam get up and dressed on weekdays, and in the last few days he's progressed to being able to get in and out of the shower, hooray! He's moved out of the hospital bed back into our bedroom, although we aren't quite ready to get rid of the hospital bed just yet. Sam is able to write a little, especially if he has something to copy, and read a bit better. On good days we can understand a reasonable amount of his speech, although abstract thinking or a sudden change of topic can result in extreme frustration. His right hand still has only flickers of movement, but there is a little more movement in the right arm. He will probably be with Icanho for another six months or so and may then reach a plateau where things don't improve any further – but recent research shows there can be sudden improvements years after a stroke, so it's almost impossible to say.

And the rest of the family....

Camilla, out with friends last week
Camilla was almost at the end of a challenging contract with McDonald's Europe when Sam had the stroke, and was also struggling with a very painful frozen shoulder (now almost resolved, thanks to more physio). If things had gone to plan we would have spent the summer sailing in Sweden – Kalessin is still in a shed in Denmark where we left her at the end of the 2011 season. At the moment Camilla is not working, but is trying to resist being labelled as a full-time carer. She has found Sam's stroke incredibly difficult to come to terms with. Severe stroke and brain injury are unusual among diseases in that the family has no time to prepare for the change – in just a few hours you lose the person you love and then have to adapt to a completely new way of living with someone who has complex needs. Sam's positivity has helped to bring the whole family through these difficult months.

The tough life of a flotilla skipper - Guy in Greece this summer

Guy was working as a flotilla skipper in Greece for Sailing Holidays when Sam had the stroke – a hugely responsible job and we were very proud of his achievement. He was able to come back to the UK for three weeks straight away, then returned to Greece, but when Sam came home from hospital decided to come home permanently to offer his support. He's still looking for the perfect job in the UK, but in the meantime is helping to keep Camilla sane by looking after Sam on various days and evenings so Camilla gets some time off. His best achievement recently has been taking Sam to the Swan, our local pub in Hoxne, and getting him to walk all the way across the car-park and into the pub for lunch and a well-deserved pint.

Ben re-took his maths and physics A-levels at Greene's in Oxford in January and managed better grades.  He missed a grade A in physics by 0.6 of a percentage point, but still got a place at Nottingham University to read civil engineering. During the spring and early summer he volunteered on the Mid-Suffolk Light Railway, which is about as pure old-fashioned engineering as you can get! Ben is just finishing his first term of engineering at Nottingham and we think he's enjoying it, although possibly he is enjoying his Japanese lessons more than the pure maths :-)
Ben starting his rail trip at Diss station

Just before Sam's stroke we'd started to arrange Ben's trip-of-a-lifetime, travelling to Japan overland by rail, and Ben decided to go ahead with the trip because we knew Sam would have wanted him to go, in spite of an astonishing amount of hassle and expense, especially with sorting out visas. In early July Ben left Diss station to head to London, took the Eurostar to Brussels, the Thalys to Cologne, then a sleeper to Warsaw and another to Moscow. From Moscow he travelled for five days on the Trans-Mongolian Express to Beijing. After four days in Beijing he took the new 300km/h train to Shanghai, spent a night there and then took a ferry to Osaka. In Japan Ben spent two weeks volunteering in an international work camp in Mimasaka, where he made some great friends and had an amazing variety of experiences, and then had two weeks travelling around Japan (by train of course) before flying home in mid-August. You can read more on Ben's blog.

On 11 December we heard that Sam's brother Adrian had died quite unexpectedly, after hurting his leg in a fall and developing intestinal problems and pneumonia. He was only 65 and not in the best of health, but it was still a shock and another blow for Sam. We tried valiantly to get to Guernsey for Ard's funeral but the weather was against us and all flights that could get us there in time were cancelled. We hope to visit Guernsey early next year to scatter Ard's ashes.

Onwards & upwards

In the past seven months we've learned a lot about the importance of love, family and friends. Massive thanks to everyone who has been so supportive - every email, phone call, card, visit or pre-cooked ready meal has been hugely appreciated, even when we haven't managed to respond properly.

We've all been on a roller-coaster journey which continues, with endless problems and responsibilities to deal with and no guarantee that things will get better. In early summer 2013 we hope to rescue Kalessin from Denmark, bring her home, and decide what to do with her – even if we have to sell her, we hope to continue boating somehow. Camilla and Sam are booked on a P&O cruise to the Canaries in April, which at least gives us something to look forward to in the dark days of winter. And in due course Camilla hopes to return to some kind of paid work.

If you are passing through East Anglia, do come and see us. We love to see visitors and Sam is still 100% Sam, he's just a bit wobbly on his feet and hard to understand.

Much love to you all and wishing you the very best for 2013

Camilla, Sam, Guy & Ben

Jade and Amber, the two most recent additions to our household

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