10/03/2024 - 'A birthday and moving to our new house!' by David

Within my role in NHS theatres I was extremely privileged to be part of many retrievals, where organs are harvested from patients that are in intensive care and on life support. After the family have been given the heartbreaking news that their loved one is not going to survive, consent for organ retrieval is received and specialist teams from all over the country make their way to the hospital and the organ recipients are contacted. As one family grieves, others are elated.

These retrievals usually happen during the night when theatres and the road network is quiet, and once the family have had time to say goodbye, the patient is brought up to theatre. The procedure is challenging, technically and emotionally, and is carried out with the utmost respect for the donor and in accordance with the family's wishes. 

Once removed, the organs are safely packed in cooled boxes and transported to various transplant hospitals. As one life is lost, others can recover and thrive.

The reason I am writing this is because I have always wanted to be able to donate my organs, but unfortunately, my MND diagnosis has all but prevented this. I will probably die at home or in a hospice, so unless I die in hospital under the right conditions, my organs will not be suitable. I have also donated blood 38 times (saving 114 lives according to the website), but again, my diagnosis means that I can't donate any more. If you can give blood, please do. 2 seconds of pain could save a life, and if you are prepared to accept blood from someone, then you should surely be prepared to donate?

At my recent meeting with a neurological consultant at the John Radcliffe Hospital in Oxford, I was made aware of being able to donate my brain and spinal cord to the Oxford brain bank, which has made an enormous contribution to research into MND, MS and autism. 

I have discussed these donations with Alice and we are both keen for me to be part of the recent advances in the understanding of motor neurone disease, and to help the development of future treatments.

This week, I continued my sojourn on the Isle of Wight as the new house was still being renovated for my future needs.  The spring weather was beautiful and my mum and I sat out on her balcony enjoying coffee and the spring air, and we let the world just happen around us.

On Wednesday, I went for a pint of home brewed ale at the Legless Arms, a bar that my friend Andy has built in his summer house at the bottom of his garden, and we also had a visit from my daughter Rachel, and she was telling us of the fun she had on her hen weekend at Centerparcs, and of her preparations for her wedding, which is now less than a month away. I am so excited, and I can't wait to be the proud father of the bride.

Alice and I had to spend 7 days sofa surfing while the work on the house was happening and it was the longest we have ever been apart. We missed each other terribly despite hour long phone calls in the evenings and when we finally saw each other again, we held each other tightly, not wanting to let go.

I drove my 2CV, Zippy over to the island for the last time, and I would like to see it stay on the roads it knows and loves if possible. If it doesn't sell, I will bring it back to Southampton and sell from there. It's 40 years old this year and it will be sad to say goodbye but we've had some great times together. 

On Friday I celebrated my 58th birthday and Alice and I spent the day in sunny Salisbury. We jumped on the train,  wandered through charity and vinyl shops, drunk coffee and cake, then walked around the cathedral gardens before entering for evensong.

Alice and I are both Humanists and have no other beliefs, but we love the beauty and majesty of a cathedral and have visited many, and on one occasion in Bristol, we wandered in just as evensong was in progress. We were taken aback by the sound of the organ and the choir of all ages, reverberating around us. Unfortunately though, we were disappointed this time. It was more chanting than singing, had just 6 men in the choir and sadly, no organist. We were actually allowed to sit with the choir though, which was nice, and the cathedral is absolutely stunning in is scale and architecture.

The font in particular, is amazing. It's huge, and the black granite base, and the still water reflect the stain glass windows like a mirror. 

I nearly had a birthday bump when I tripped on a paving slab, but thanks to my stick and Alice holding my other arm, I managed to stay upright, although it is a sign of what lies ahead for me and it shook me up. My walking is becoming a problem, and the distance I can cover before having to sit down is ever decreasing. After about 20 minutes, my left leg starts to become numb, and I start to involuntarily lift my foot as I walk, but with my trusty sidekick holding on to me, I feel safe, thankful and loved. 

For my birthday, I received a crocheted pretzel from my friend Edisa and a hand painted flower pot from Alice, but three of the most precious presents, didn't cost a single penny.  My daughters compiled a 'mixtape' streaming playlist of songs that reminded them of me, which we listened to on the train. It took me back to the days when they were growing up, and it was a lovely thing to do, as was our friends Dawn and Stephen sending a voice message of them singing Happy Birthday to me. More on the third in the next paragraph. 

Saturday is parkrun day and this week we travelled to the Portsmouth Lakeside course to walk with our friends. 

I was unsure if I would be able to walk without a stop, and when my legs were starting to feel weak after less than 2km, I feared that I would have to give in and stop. We agreed it was time to look into sourcing a running wheelchair for future parkruns and we have a couple of options to explore to make this happen. With the help of Alice though, and the encouragement from those walking with us, I completed the 5km in just over an hour.

As I approached the finish line, I was delighted and overcome with emotion as two children of our friend Simon, held out our Vegan Runners flag as a finish tape and Layla, one of our lovely friends, had made a sign with my name on, and I had tears in my eyes as I was applauded in.

She said that she hadn't had time to get me a present so had made the sign for my birthday instead. After hugs and photos, we went for coffee and brunch, to give us energy for a busy but exciting afternoon ahead. Some gifts have no monetary value but mean the world.

We've moved in! Alice and I, with help from Fin, Matthew, Alice's parents and our friend Andy, moved wardrobes, beds, and boxes all around the house and finally after four weeks since we exchanged, we slept in the house for the first time, and it felt good. Alice's dad has been working very hard on the house for us, improving and future proofing it, including handrails up the stairs and in the bathroom. It's nearly up straight and any remaining jobs can be done with us in the house. We're very lucky to have had this help and we're very grateful to everyone who has helped us on this journey, whether it was help navigating paperwork or ferrying boxes up and down the stairs. After a full day of lifting, shifting and sorting, we sat down to a takeaway, generously paid for by our friend Matt from Vegan Runners and it was just what we needed.  This morning, we woke up in our new bed in our new house and delighted in the peace and quiet of our road, which was a real treat after living opposite Sainsburys loading bay for 4.5 years!

Alice has taken on virtually all of the emails, paperwork, and phone calls with estate agents, and mortgage advisors, and I am so proud of the way she has coped with all the stress associated, while also looking after me, her son, and working full time too. She definitely deserved her Mother's Day lie in, her breakfast from me, her plant and card from Fin, and her trip out to an escape room with her mum and sister, Ellen. Thank you to Alice, my mum, and all the equally brilliant mothers all over the globe x