I forgot to mention last week, I had a particularly bleak moment on a splintery wet Wednesday afternoon when Vick realised she could not put her shoes on due to puffy feet, and I drove to the grey roundabouts of Burgess Hill industrial estate to the beige mobility shop. I bought some enormous shoes with velcro fasteners which Vick finds not a fashion statement. It is a shame that equipment is so ugly, but it is life-transforming as well.
Vick has had low sodium in her blood which explains the faraway feeling she has, and she is craving peace and quiet. Shortly, one of my dear nurse colleagues is coming round, and I will dye her hair, but Vick consents for us to discuss in detail every aspect of her physical being, which is nice for me, to check I'm not missing anything. The community nurse and hospice nurse also come regularly of course, but I'm wary of being too knowledgeable and bossy with them in case they feel undermined so I try and keep schtum.
I went to see David Copperfield at the cinema with great anticipation but was sorely disappointed. I couldn't bear the cheerful crescendos of music and general frivolity. I was hoping for something much deeper and wanted to actually care about the characters, which I didn't. I did not fall asleep but was desperate for it to end.
Josie
Yesterday was chaos here. A workman came first to do some odd jobs and started sawing noisily and then a huge consignment of Aids came; a trolley, an enormous white plastic bath seat which lowers itself at the touch of a button, a four-wheeled pusher and a rail for the bed. I've still got the Zimmer of course which they would not take away. I'm overcome by the generosity of the NHS but it is difficult to move in this small bungalow with all this equipment.
The cello and the wheelchair are handily stored at the foot of the bed in the spare room.
Outside the window, a disconsolate fox was walking up and down as if he was waiting for a friend. The usual gang of squirrels and magpies looked a bit wet, but fortunately today the sun is shining. I'm still feeling fluffy in the head but I'm just taking each day as it comes.
Vicky
Tuesday 28 January 2020
Tuesday 21 January 2020
21 st January
Shortly after our last blog poor Vick acquired two nasty infections, but the good news is we avoided a hospital admission. Luckily due to quick thinking and a helpful GP, we got started on the oral antibiotics straight away, but I'm convinced if we had left it a few hours we would still be stuck in some dismal ward watching the tea trolley being wheeled around and on the IV antibiotics.
Vick has had some times of feeling wuffly in the head as she calls it, but she does not act at all confused. We have a system of me being here Tuesday to Thursday and sometimes popping in at the weekend, then other family members doing Friday, Saturday, Sunday and Monday. It is good to be here at night to help with the hot water bottle top. We all love being here, it is warm and cosy and pleasant and just like a David Attenborough programme sitting on the sofa and watching the crows and the squirrels.
Last night I sneaked off to the cinema alone to watch 1917, as I had two great uncles die in that awful war, and I felt I should go. It was grim but I was absorbed, and it took my mind off my troubles for a while. My poor mother in law is also struggling, and I often feel quite nervous. On a positive note, we have a delightful American jazz singer who has just moved in and her Southern accent is most calming.
Josie
I feel down in the dumps at the moment. It is difficult to carry cups of tea and glasses of water with the Zimmer frame (much as I love him/her, and everything takes twice as long to do as usual. I have people here most of the time to help. R came yesterday with snowdrops from her garden and outside the view looks sunny and frosty and beautiful. I had a quieter day yesterday writing letters, emails and listening to radio Four. I prefer listening to Radio Four to watching TV nowadays. I'm fed up with programmes about people buying posh houses and cooking weird meals. I've even gone off breakfast TV which I used to love as they keep saying the same things over and over again, especially Carol, the weather lady.
I'm hoping to get to Tiger's school play next week if I can cope. I haven't been out much lately but perhaps it would do me good.
Vicky.
Vick has had some times of feeling wuffly in the head as she calls it, but she does not act at all confused. We have a system of me being here Tuesday to Thursday and sometimes popping in at the weekend, then other family members doing Friday, Saturday, Sunday and Monday. It is good to be here at night to help with the hot water bottle top. We all love being here, it is warm and cosy and pleasant and just like a David Attenborough programme sitting on the sofa and watching the crows and the squirrels.
Last night I sneaked off to the cinema alone to watch 1917, as I had two great uncles die in that awful war, and I felt I should go. It was grim but I was absorbed, and it took my mind off my troubles for a while. My poor mother in law is also struggling, and I often feel quite nervous. On a positive note, we have a delightful American jazz singer who has just moved in and her Southern accent is most calming.
Josie
I feel down in the dumps at the moment. It is difficult to carry cups of tea and glasses of water with the Zimmer frame (much as I love him/her, and everything takes twice as long to do as usual. I have people here most of the time to help. R came yesterday with snowdrops from her garden and outside the view looks sunny and frosty and beautiful. I had a quieter day yesterday writing letters, emails and listening to radio Four. I prefer listening to Radio Four to watching TV nowadays. I'm fed up with programmes about people buying posh houses and cooking weird meals. I've even gone off breakfast TV which I used to love as they keep saying the same things over and over again, especially Carol, the weather lady.
I'm hoping to get to Tiger's school play next week if I can cope. I haven't been out much lately but perhaps it would do me good.
Vicky.
Tuesday 14 January 2020
14 th January
It is a lovely dank January morning and I'm really bored with dry January although I feel ever so healthy. I'm with Vick in her lamp lit bungalow, with lots of phoning to do. I have already phoned the GP, pharmacy, hospice, community nurse and electrician. I helped her with a wash in the candlelight and practised my new shiatsu techniques on her puffy legs, but still need to sort out the mouth, fingers, and prevent any skin damage on the legs by applying copious amounts of moisturiser.
I handed in my notice from my hospital job last Friday but the acupuncture in the NHS may be expanding. I feel I need to make a proper rota as Vick may start to need more care now her mobility is not so good.
I helped behind the bar at an intercultural social club for refugees on Saturday and found I loved it, as I've always wanted to work a till and I'm very happy chatting. I felt I was in my element in fact. I could have a future career as a barmaid perhaps.
Josie
The man who brought the hospital bed was not best pleased, as he had to push the bed in the dark along a bumpy path to my bungalow. He said it was the fourth one he had done that day in Sussex. But it is a truly wonderful bed with electric controls that lift the head and the feet and I now sleep like a log.
All sorts of minor ills have occurred in the last week. A crown fell off a back molar, revealing a decayed tooth that will have to be extracted. The lights all failed so that we have candles, dribbling wax in the bathroom and elsewhere. I can't get shoes and socks on my swollen feet and my walking has plummeted. Also, I have sore fingers and a sore tongue. Otherwise, my health is fine. I am cutting down on the steroids so perhaps my euphoria will evaporate but this hasn't happened yet.
Granddaughter M has been staying and we have been reading poetry aloud at breakfast time which is a really good start to the day.
Vicky
I handed in my notice from my hospital job last Friday but the acupuncture in the NHS may be expanding. I feel I need to make a proper rota as Vick may start to need more care now her mobility is not so good.
I helped behind the bar at an intercultural social club for refugees on Saturday and found I loved it, as I've always wanted to work a till and I'm very happy chatting. I felt I was in my element in fact. I could have a future career as a barmaid perhaps.
Josie
The man who brought the hospital bed was not best pleased, as he had to push the bed in the dark along a bumpy path to my bungalow. He said it was the fourth one he had done that day in Sussex. But it is a truly wonderful bed with electric controls that lift the head and the feet and I now sleep like a log.
All sorts of minor ills have occurred in the last week. A crown fell off a back molar, revealing a decayed tooth that will have to be extracted. The lights all failed so that we have candles, dribbling wax in the bathroom and elsewhere. I can't get shoes and socks on my swollen feet and my walking has plummeted. Also, I have sore fingers and a sore tongue. Otherwise, my health is fine. I am cutting down on the steroids so perhaps my euphoria will evaporate but this hasn't happened yet.
Granddaughter M has been staying and we have been reading poetry aloud at breakfast time which is a really good start to the day.
Vicky
Wednesday 8 January 2020
8th Jan
We are now back in our orderly routine, which involves being with Vick most days except Mondays and Fridays and writing lists of jobs and doing them, and keeping on top of the symptoms and drugs and social arrangements. My equilibrium is restored, and I hope Vick's disease is stable but if she gets poorly I will step into proper nurse mode. Although I am expert at arguing with husbands in the past, I have never argued with my dear mother, except about the sensitive matter of the Hospital Bed. Vick being Libra minds about aesthetics, and I respect that greatly. However, I was getting most concerned about her legs getting swollen from not being able to lie down at night. So when the efficient GP persuaded her to have a tasteful hospital bed I could have cried with relief. Within minutes I had the hospice nurse saying she would deliver it TODAY, and the district nurse coming to assess Vick tomorrow. What a service.
Josie
We had three nights in the Premier Inn in Winchester. They have famously comfortable beds and pillows and to my amazement, I actually slept like a log for the first time in weeks. Poor Tiger shared my room and had to endure the snores. It was lovely to visit some old friends; I wish I could have seen more. There were E and B with their five Russian/Cornish children; two of whom were born at the Meeting House. Also, dear little Latvian N, whose mum was a much-loved resident. My health has taken a bit of a dip and I rely on my trusty Zimmer frame to get about these days.
I am enjoying a book I was given for Christmas. A Single Thread by Tracy Chevalier. It is about the broderers in Winchester Cathedral, who were a group of women who made kneelers and cushions. It is about their complicated lives which were scarred by their losses in the first world war. Her books are always a delight.
Vicky
Josie
We had three nights in the Premier Inn in Winchester. They have famously comfortable beds and pillows and to my amazement, I actually slept like a log for the first time in weeks. Poor Tiger shared my room and had to endure the snores. It was lovely to visit some old friends; I wish I could have seen more. There were E and B with their five Russian/Cornish children; two of whom were born at the Meeting House. Also, dear little Latvian N, whose mum was a much-loved resident. My health has taken a bit of a dip and I rely on my trusty Zimmer frame to get about these days.
I am enjoying a book I was given for Christmas. A Single Thread by Tracy Chevalier. It is about the broderers in Winchester Cathedral, who were a group of women who made kneelers and cushions. It is about their complicated lives which were scarred by their losses in the first world war. Her books are always a delight.
Vicky
Friday 3 January 2020
3rd January
I can't believe a week has gone by since I last blogged. It has been busy, with family visitors crammed into my little room. Three small boys played outside climbing trees and chasing squirrels while sons, daughters in law, granddaughters, partners, grandsons and I had cups of tea, Christmas cake, and mince pies in abundance for several days. Now they have all gone home - up north, to Washington DC, Teddington and Winchester.
On Tuesday I had my blast of radiotherapy at the Royal Sussex Hospital. I was given dire warnings that I would have after-effects: nausea, diarrhoea, pain, and fatigue, but I have had none of these so far. I am hoping for an improvement in my mobility, but I have grown to love my Zimmer frame.
Vicky
For me, I am jolly glad Christmas is over. I found the whole thing rather intense. Vicky has coped much better than me, with all the hoo-hah. I stayed most nights at her place, being bossy about the drugs, and elevating her legs. She was far more relaxed and cheerful than me but hopefully, I'll improve.
I'm so glad she has had her radiotherapy, and it was nice for me to see lots of colleagues of mine from the hospital. I feel we are in good contact with the community services, but her pain control is not completely sorted. We can expect a flare-up of pain before it hopefully improves, so it is hard to settle on a regular analgesia dose.
I wonder what 2020 will bring. I hope the government react appropriately to the climate emergency. I'm so happy my three dear daughters live nearby to me, and I look forward to my son coming back from Australia in May. I will try to enjoy small things and take each day as it comes.
Josie
On Tuesday I had my blast of radiotherapy at the Royal Sussex Hospital. I was given dire warnings that I would have after-effects: nausea, diarrhoea, pain, and fatigue, but I have had none of these so far. I am hoping for an improvement in my mobility, but I have grown to love my Zimmer frame.
Vicky
For me, I am jolly glad Christmas is over. I found the whole thing rather intense. Vicky has coped much better than me, with all the hoo-hah. I stayed most nights at her place, being bossy about the drugs, and elevating her legs. She was far more relaxed and cheerful than me but hopefully, I'll improve.
I'm so glad she has had her radiotherapy, and it was nice for me to see lots of colleagues of mine from the hospital. I feel we are in good contact with the community services, but her pain control is not completely sorted. We can expect a flare-up of pain before it hopefully improves, so it is hard to settle on a regular analgesia dose.
I wonder what 2020 will bring. I hope the government react appropriately to the climate emergency. I'm so happy my three dear daughters live nearby to me, and I look forward to my son coming back from Australia in May. I will try to enjoy small things and take each day as it comes.
Josie
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