What a strange 24 hours this has been. I ended up spending the end of Christmas Day in the A and E of the Royal Sussex Hospital. This was grim at first with smells of wee and pools on the floor and someone vomiting into a washing up bowl. But then Josie and I were shifted to trolleys in another area and spent a restless night. Opposite us was a prisoner shackled to two guards. He had taken an overdose and claimed he was a serial killer but was that true?
The reason for my admission was that I had severe pain in my back and hip and I lost the use of my right leg for a bit. There is a danger of cord compression causing paralysis and incontinence so I had an urgent MRI scan which showed progression of the bone cancer which needs radiotherapy. Now on Level 9 of the new block which is wonderful -NHS at its best. Very quiet, well-staffed- such kindness. I really love it and am in no hurry to go home.
Vicky
I had a sense of impending doom from Sunday. It's a terrible thing to know too much. Poor Vick didn't want to go to A and E, and I associate that place with patients' pain and distress from working there. But after a calm Christmas Eve with a fine salmon dinner and mulled cider, and a civilised Quaker breakfast and comfortable time in Ditchling on Christmas Day, we had to go there.
However, amidst the grubby chairs, yellow bins, cups of weak tea, and confused old ladies I am so warmed by the staff here, some of whom I know. It feels like the NHS is holding us, which is a great comfort, and it sounds like we caught the cord compression just in time.
This blog was written on scraps of paper in the ward, and we later saw OT, physio, pharmacist, oncology team, and one of my palliative consultant colleagues. We were sent home after Vick got tattooed for her radiotherapy, and arrived back to my house bursting with people, where we had a lovely party. The only hiccup was a journey back to the ward late at night to collect Vick's medications which are getting increasingly complicated. She is now back in Ditchling with my daughter Millie staying.
Josie
Friday 27 December 2019
Monday 23 December 2019
23rd December
I love this time of year, Point Zero. I pranced around at dawn to the bagpipes in Lewes on the winter solstice. We lit a fire, sang rounds and drank mead. I'm such a crusty hippy at heart.
I've been reading Anne Tyler books voraciously and love the detail about lovable but flawed characters. She is a genius. Danny and I have been lighting the wood burner and talking to each other a lot more now that our children are largely independent. Hot water bottles are an endless boost. I am enjoying drinking a glass of wine in the evenings, and in January I will drink nothing alcoholic.
I am often worried about Vick's pain and keep tweaking her drugs like I used to with my hospital patients, as it is so important to have complex cancer pain under control. I wish they would get on with the MRI scan and a blast of radiotherapy, as that would definitely help. I liaise with the GP and hospice nurse a lot and we are all on the same hymn sheet.
Josie
There have been a few comments after my last entry about the names of cats and dogs. We missed out Pudding, Percy, and Bradley Wiggins. Percy (or Percil) was an unusually large white cat who would sit by the phone when I was out, hoping to hear my voice on the answerphone. Next time I lie awake I will think about other people's pets.
The plan for Christmas Day is as follows. We are all having a shared breakfast at the Quakers followed by Meeting. Then back to my little place to open our presents and eat the vegan canapes from Waitrose. And some bubbly stuff. Play a few games. Watch the Queen, although what she's going to say goodness knows. Then the family will clear off and I am looking forward to a quiet evening watching Gavin and Stacey and eating scrambled egg on toast. What bliss. Hope it doesn't all go wrong and I end up in A and E.
Vicky
I've been reading Anne Tyler books voraciously and love the detail about lovable but flawed characters. She is a genius. Danny and I have been lighting the wood burner and talking to each other a lot more now that our children are largely independent. Hot water bottles are an endless boost. I am enjoying drinking a glass of wine in the evenings, and in January I will drink nothing alcoholic.
I am often worried about Vick's pain and keep tweaking her drugs like I used to with my hospital patients, as it is so important to have complex cancer pain under control. I wish they would get on with the MRI scan and a blast of radiotherapy, as that would definitely help. I liaise with the GP and hospice nurse a lot and we are all on the same hymn sheet.
Josie
There have been a few comments after my last entry about the names of cats and dogs. We missed out Pudding, Percy, and Bradley Wiggins. Percy (or Percil) was an unusually large white cat who would sit by the phone when I was out, hoping to hear my voice on the answerphone. Next time I lie awake I will think about other people's pets.
The plan for Christmas Day is as follows. We are all having a shared breakfast at the Quakers followed by Meeting. Then back to my little place to open our presents and eat the vegan canapes from Waitrose. And some bubbly stuff. Play a few games. Watch the Queen, although what she's going to say goodness knows. Then the family will clear off and I am looking forward to a quiet evening watching Gavin and Stacey and eating scrambled egg on toast. What bliss. Hope it doesn't all go wrong and I end up in A and E.
Vicky
Tuesday 17 December 2019
17 th December
Just returned from a morning improv session with a log fire and lovely nibbles for lunch. I felt dreadful as I forgot to collect my friend on the way, but he got there in the end anyway. The secret with Christmas is to take one day at a time I reckon and have very low expectations, but we have been having nice times so far. The solstice is this weekend, and all these days are Christmas really, not just 25th. Having a sabbatical has given me a lot more space in my brain, and I can get interested in things right under my nose, which I had taken for granted before.
I haven't had any inspirational ideas about food or presents this year, but have bought a few people saunas, in a little wooden horsebox on Brighton beach, where there are essential oils and herbs, and little felt hats to wear like you do in Finland.
My pathetic Christmas tree looks happier and we collected some greenery from the woods.
Josie
I seem to have developed an addiction to mince pies. I keep buying them from various shops to compare them then eat them. They are delicious but it is having a bad effect on my waistline.
I went on a splendid day at the Wellbeing Centre at the hospice on Friday. Panto in the morning (three professional actors, absolutely brilliant). Then a slap-up Christmas dinner with lashings of bread sauce and gravy. In the afternoon a choir sang to us and we joined in with the carols. Tea and Christmas cake was beautifully served by volunteers. I was overwhelmed.
Sleep has deserted me at the moment. No doubt due to the steroids. I lie awake in my comfortable bed making mental lists of all the animals that I have kept, or the dodgy cars I have driven. There was Peggy, Lucy, Brian, Shirley, Daphne, Knocker and so many others. The time passes quite quickly.
Vicky
I haven't had any inspirational ideas about food or presents this year, but have bought a few people saunas, in a little wooden horsebox on Brighton beach, where there are essential oils and herbs, and little felt hats to wear like you do in Finland.
My pathetic Christmas tree looks happier and we collected some greenery from the woods.
Josie
I seem to have developed an addiction to mince pies. I keep buying them from various shops to compare them then eat them. They are delicious but it is having a bad effect on my waistline.
I went on a splendid day at the Wellbeing Centre at the hospice on Friday. Panto in the morning (three professional actors, absolutely brilliant). Then a slap-up Christmas dinner with lashings of bread sauce and gravy. In the afternoon a choir sang to us and we joined in with the carols. Tea and Christmas cake was beautifully served by volunteers. I was overwhelmed.
Sleep has deserted me at the moment. No doubt due to the steroids. I lie awake in my comfortable bed making mental lists of all the animals that I have kept, or the dodgy cars I have driven. There was Peggy, Lucy, Brian, Shirley, Daphne, Knocker and so many others. The time passes quite quickly.
Vicky
Tuesday 10 December 2019
10th December
I wrote my Christmas cards yesterday and I love doing them after all. A handyman came yesterday and fixed my tottery bookshelves which had been worrying me for some time. I had to take all the books out and they always multiply when you move them. They were all over the place. When it came to putting them back I decided to declutter and take the ones to the charity shop that no longer give me joy, which was about half of them. I kept most of the poetry, however, except the old ones such as Pope and Milton.
I've decided to only give Christmas presents that can be eaten, bathed in, or applied to the face and body. In other words, consumables. I have bought a lot of chocolate.
I'm still in a bit of a Funny State on the steroids although the dose is now being reduced. I see the world through rose-coloured spectacles and feel well and pain-free. It is particularly good at the moment with the election coming up.
Vicky
I am doomed when it comes to Christmas trees. I actually love them but have had terrible disagreements over size and shape over the years with my partner, and feel like somehow we have never got it right. I get Christmas Tree envy when I walk down my road and see pristine ones.
I bought one in a pot from Aldi last year for £14.99 and grew emotionally attached to it over the year in a pot in my front garden, watering it only with rainwater and experimenting with differing positions. I repotted it and bought ericaceous soil for it. Then I brought it in and specially bought new lights and baubles from Habitat. But it droops over sadly and looks pathetic. Vick says it looks woebegone. It is much too small for its big pot.
I am continuing the sea swimming and it is helping me a lot. I have also joined a drumming band which has always been a secret ambition of mine. I remember as a child longing to be a majorette or one of those drummers with sticks under their noses. This group is more of a wild samba rhythm but it is good for lifting the energy.
Josie
I've decided to only give Christmas presents that can be eaten, bathed in, or applied to the face and body. In other words, consumables. I have bought a lot of chocolate.
I'm still in a bit of a Funny State on the steroids although the dose is now being reduced. I see the world through rose-coloured spectacles and feel well and pain-free. It is particularly good at the moment with the election coming up.
Vicky
I am doomed when it comes to Christmas trees. I actually love them but have had terrible disagreements over size and shape over the years with my partner, and feel like somehow we have never got it right. I get Christmas Tree envy when I walk down my road and see pristine ones.
I bought one in a pot from Aldi last year for £14.99 and grew emotionally attached to it over the year in a pot in my front garden, watering it only with rainwater and experimenting with differing positions. I repotted it and bought ericaceous soil for it. Then I brought it in and specially bought new lights and baubles from Habitat. But it droops over sadly and looks pathetic. Vick says it looks woebegone. It is much too small for its big pot.
I am continuing the sea swimming and it is helping me a lot. I have also joined a drumming band which has always been a secret ambition of mine. I remember as a child longing to be a majorette or one of those drummers with sticks under their noses. This group is more of a wild samba rhythm but it is good for lifting the energy.
Josie
Wednesday 4 December 2019
4th December
The effect of the steroids is quite extraordinary. Apart from the decrease in various symptoms, they have made me extremely cheerful and I look upon the world with new eyes. Also, I have my appetite back and am eating like a horse. I can even face broccoli and avocados again.
I went to a live performance from The National Theatre at the beautiful cinema in Lewes yesterday. Present Laughter by Noel Coward. Such clever writing, and an amazing performance by Andrew Scott who was in Fleabag. I regret to say that I dropped off once or twice but I enjoyed it immensely all the same.
I'm just about to start on the Christmas cards. In fact, I really do like doing it, as I like to think it is sending a blessing, even ones to the neighbours who I see every day. We all send them to each other in Dumbrells Court.
Vicky
Vicky is so great to be with as she finds everything wonderful and euphoric. If only we could all be like that. It's so infectious. Her kitchen that she did think needed a makeover, she now finds totally luxurious. She is happy with her new drug regime.
Since our last post, we have been to Winchester and had long talks about its personality, and the contrasts between Winchester and Brighton.
Last Friday, we ran a free market in Brighton, where we gave clothes and books away for free as a protest against Black Friday. Everyone was pleased donating and collecting stuff, as we all have so much stuff. There were some good quality items and a gift-wrapping service and it reminded me that the dreaded Christmas is just all about kindness really. It was a lovely chaotic event and I had good conversations with people. The news about climate change is so bleak though, and I hope these protests make a difference. Even if they don't I have met some good people through XR.
I also rushed into the sea on a calm day with Extinction Rebellion where we lay like synchronised swimmers making the hourglass logo. We held each other's feet and looked up at the bright blue sky above. The sea was like a milky lake and I felt happy. Life feels vivid and fragile at the moment.
Josie
I went to a live performance from The National Theatre at the beautiful cinema in Lewes yesterday. Present Laughter by Noel Coward. Such clever writing, and an amazing performance by Andrew Scott who was in Fleabag. I regret to say that I dropped off once or twice but I enjoyed it immensely all the same.
I'm just about to start on the Christmas cards. In fact, I really do like doing it, as I like to think it is sending a blessing, even ones to the neighbours who I see every day. We all send them to each other in Dumbrells Court.
Vicky
Vicky is so great to be with as she finds everything wonderful and euphoric. If only we could all be like that. It's so infectious. Her kitchen that she did think needed a makeover, she now finds totally luxurious. She is happy with her new drug regime.
Since our last post, we have been to Winchester and had long talks about its personality, and the contrasts between Winchester and Brighton.
Last Friday, we ran a free market in Brighton, where we gave clothes and books away for free as a protest against Black Friday. Everyone was pleased donating and collecting stuff, as we all have so much stuff. There were some good quality items and a gift-wrapping service and it reminded me that the dreaded Christmas is just all about kindness really. It was a lovely chaotic event and I had good conversations with people. The news about climate change is so bleak though, and I hope these protests make a difference. Even if they don't I have met some good people through XR.
I also rushed into the sea on a calm day with Extinction Rebellion where we lay like synchronised swimmers making the hourglass logo. We held each other's feet and looked up at the bright blue sky above. The sea was like a milky lake and I felt happy. Life feels vivid and fragile at the moment.
Josie
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