Tearful conversation at FACT and philosophy

We went to FACT today while Lynn cleaned the apartment , we just had coffee as we did not feel hungry.
We had a deep conversation, John telling me how much he is enjoying this Christmas as it is likely to be his last one.

It is what most of us are thinking, hearing John saying it out loud, went right through me.I was very tearful. We have not had a deep and meaningful for a while and as time goes on you put it to the back of your mind.
It was ok though, and we went on to talk about our good fortune our sense of gratitude to have had the time we have had together, for our amazing children, their partners and the grand children.For La Comparsa, and our Scottish heritage, and other things too.

I wondered if John had thought about what happens after you die, we have had this conversation many times over the years.

In the end we both agreed no one knows ,but it is good to move towards the end of life with an opened mind ,a sense of curiosity.Why not? this attitude of curiosity keeps away despair for many folk.
For me at this stage, I like the idea of peace perfect peace in death.Who knows what I will think when I approach death, I mean ,if I know it is close.

I hope one of the children has the courage to talk to me about it , at that time, or any time to be honest, although I think people who examine their lives, who are willing to change and grow, will have changing thoughts over their lifetimes.

I like listening to people ideas of what it might be like, without judgement and with respect. It is more common for people to hold their own belief so dear( in most things) ,that they cannot hear or tolerate another persons ideas. Maybe they feel threatened. I suppose as a counsellor for over 30 years I have got into the way of listening to others with respect and curiosity and can honour that and I do not feel threatened.




I am not thinking of fanatics and zealots of course. I am thinking of people in my orbit who think in different ways from me.I do occasionally change my thinking as a result of being open to others, or sometimes it can confirm my own way of thinking when I listen to others.

So dear blog, we do not have the answers to many of life questions, yet talking , writing, blogging and listening to others, helps  us (me) understand ourselves ( myself ) more.

John is sleeping now, I am calmer.

All shall be well,
and all shall be well,
and all manner of things shall be well.


And so it is!

Boxing Day 2013

I really enjoyed Christmas Day this year.

As ever this last few months there is a thought ,will this be the last one with John, but then I try to stay in the now, enjoy the moment.

John ran the quiz and enjoyed the food and wine, as we all did. The presents were all great, it always amazes me that we get so many thoughtful gifts.

I think the gifts that I enjoyed  giving and seeing being received ,was the boxes I gave the boys, a little bit of their history in letters and cards that they had sent me over the years,and the old photo's.

I was touched by that.
Phil was touched by the pictures I gave him, some pictures of him with his dad and Robin, and his mum as May Queen.

After they all left, John went straight to bed, I cleared away the debris, washed up had a shower and into nightie and dressing gown. Bliss. John stayed in bed, had supper in bed, he was very tired after the days events. I watched a movie and was in bed by 9.30. It was a good day and a long day.

I admit I felt sad that I was on my own on Christmas night, but I am kind of adjusting to this way of life.

It is the price we pay for having visits and more people around and of course John wants to step up.

I heard from all the siblings today which was lovely. We saw David and Lara on skype briefly which was a treat!

I got John a years subscription for Times Literary Supplement for Christmas,he says it is his favourite gift :-)

I love my silver watch, I ordered it myself, but did not see it, John wrapped in up and gave it to me on Christmas Morning. I love the books and DVDs glad to have them even if we do have kindle and netflix.

I am so pleased to have my bath tidy, which I will enjoy in spite of the bath  chair, somehow. Just seeing it  on the bath glamorises the bath :-)

Looking forward to the rain so that i can use my new umbrella and see it changing colour.

So many lovely thoughtful gifts ,mugs with robins, bath things ,food, sweets, wine, bags , jewellery, scarves.


I am grateful. for our wonderful family! They are the greatest gift.

Christmas Eve

And so this is Christmas, and what have we done.

A lot to be honest.


I have done all the shopping, all the wrapping, made all the cards and posted them, made cakes and biscuits, organised nights out, lunches, friends coming in for cakes and poems.

I have enjoyed every minute.

We have had to endure  , hospital visits, nurses coming and going, carers coming and going and confusion over medication for John,but we have risen about it all.

The festive spirit ,the spirit of love has won the day.

We had a great day with Penny Kate, Johnny and Martha, we had a lovely festive family day.

I hear that the advent calendars are a big success, they have kept the children amused and interested all through advent. The adults and joining in the fun too.I love to think they will be part of the children's lives from now on.
I love the traditions, so it is lovely to be starting one for two generations down from me.

We had an evening with Andrew and Lucy under the tree, it was very special and I gave them a little joint gift. I told everyone a while back that we should spend less on Christmas this year, but as we sold dad's van I have  a bit extra money, so I spent a bit more :-)

Today our neighbours on the top floor handed in some festive ( homemade biscuits) so kind. Rachel and Adam have gone off for Christmas they left us a bottle of wine. Very kind. I made them a banana and raisin cake, they both love it.

Susan's gift finally arrived in a big red enverlope, and then a lovely white and green plant ( looks like snowdrops) in a fat white jug, was delivered from David and Lara.

I am getting the festive feeling , at last. Looking forward to a quiet day now  will watch a few Christmas movies,I have only watched one so far.

Tomorrow the boys come with Phil ,for presents and quiz and nibbles.

Sunday we have The Artist Way tea party.

I am feeling ok, I am doing better that I thought I would. I went to the five trees to chat with dad, quite emotional, but OK.He was such a huge larger than life man, hard to let him go.

I think of my mum too, I have a few of her decorations on the tree, she loved Christmas too.

I am grateful that I come from a very big crazy, complicated ,confused at times, but mostly loving family.

Nothing like it. I love getting accolades about my work, my contribution, but most of all, the greatest joy comes to me from my family.

Christmas Tree

Joy and Sadness

We had a lovely start to the day, no carers came in at our request, what bliss to have tea in bed!

I picked out a small tree yesterday, small because I have to do it all myself this year and I was not sure I could manage a really big one.

Almost £40 for a tree these days with £5 delivery, but it is worth it for me. I love the real tree and I love our traditions. We usually pick out the tree together, I felt a bit sad going off on my own to choose one. John had great confidence that I would get the right one.

In fact we always fall in love with whatever tree we bring into the house.It is such a presence like a "being" in our midst.

Last night I went out with Lucy to The Philharmonic Hall to see Winter Wonderland, it was such a treat, the concert and being out with Lucy. I feel very lucky that we get on together, so many people find " the in laws" such a trial.

We started at Leaf and had food and wine and a good catch up, the place was buzzing with young glamorous woman in lovely festive outfits , much laughter and high spirits.

Lucy was just as lovely in her jeans and duffle coat, she has youth on her side.

She was so excited when we saw where we were sitting and the festive atmosphere in the hall.

She has not been there since her graduation, I was surprised.She plays two instruments and was in youth orchestra at school. I hope she can go more, I will watch out for some nice concerts.

I could see the whole experience was quite magical for her and that made it special for me, because it is the first time I have been to the Christmas concert without John and was very aware of that, but our evening stood out on it's own as a wonderful shared experience.

Today I brought all the boxes of decorations up from the cellar, they all survived another year.


It took me all day to get lights unfankled, and ornaments cleaned up and it was such a pleasure I love all this .

Last 12th night ,as is my tradition, I wrapped all the decorations up in the gift wrap that came with our gifts last year, and I have all of last years card there too. it is a nice connection from one Christmas to the next.  I love connections and traditions, John does too, he depends on me to make it all happen but he really appreciates what I do.

I baked two cakes and made the  cranberry and walnut and white chocolate fridge cake.

Finally the tree came in pouring rain, and as it always has in this house, it came in the window.

It is a lovely tree smallish but already we love it. We got the red lights up and a few silver decorations just to get is started, I will do more tomorrow in the daylight, and add some white lights eventually. It is an organic thing for me, decorating the tree,  like a garden you are always working on.
By Christmas Day it will be full on Christmas , then gradually I will take a lot of very Christmassy things off and have more white lights than red for new year. On 12th night a last hurrah for Christmas all the red lights and festive decorations back on.
When we had finished, we sat under the tree John with a wee Glen Livet, me with a cup of tea, and some fruit cake. We played " Oh Christmas Tree. It was as ever a special moment, but oh so sad, for me anyway, John seemed genuinely happy thank goodness.

I told him he will always be a huge part of my Christmas rituals, he says I must be joyful, I said I could not promise that, but I would do my best, the rituals without John will be very strange.

Possibly unbearable, yet I  think that even when things are difficult rituals help see you through the tough times even if at first you just go through the motions.

I had hoped Andrew and Lucy might come along to join in , then next year if I am on my own they can help me through them, but that is Ok as maybe it was a good thing that John and I had our special moment just the two of us.

I am reminded of the Dickens quote " It was they best of times, it was the worst of times"

It is a bit like that for me, if I stay in the moment.I am Ok, looking forward is painful, at times.

Of course Christmas brings with it memories of Christmases past, with out parents, grand parents, brothers and sisters, when we were children, when our children were children. Poignant is the only work close to describing the feelings.

I do allow myself to feel them though, the deep sad feelings felt and expressed, make the joy all the more joyful. I like to stay real even if it hurts.

So mr blog, that has been my weekend.

We have a busy week ahead!

Unfriendly district nurse/ lovely doctor.

Today we had a visit from the district nurse, she came in while I was on the phone.

She took John's blood pressure and said it was dangerously high.

She hardly spoke to me, she stayed for a while ringing a few people,I felt in the way so came through to the lounge.She left without telling me what was happening. John was very worried, she told him she would ring the doctor then phone us back.
Waiting was terrible. I took out the garbage washed and swept the hall floor.I was quite shook, cleaning is one of my coping strategies.
Rachel came out all cheerful and asked how I was and I fell apart, she was very sweet and loving and I felt calmer to come in to see how John was faring.

Finally Dr ( angel) Kate rang, wondering why she had to call, the nurse had not told her why to call us , I think that is strange.

Good news is, she said ,it was a sign of John's health returning, that his BP was back to it's normal high level. I was astonished. We both felt much better, she will fax new meds to Asda and I will collect them later. I asked if John could have his cuppa, and could we still go to Nutcracker , she said a resounding YES he must do anything he want to do.

She also told me the results of my blood tests that she took yesterday morning, all good, no polymyalgia.( we feared it might be back) she said carry on with the massages the pains in my arms must be simple tension on the muscles.

I let Rachel know all is well, she gave us some flapjacks and some popcorn to make in the microwave.

So I continue to make the final touches to my Christmas cards, and John is cutting out the text that  he printed off for me last night.

Happy day indeed.

Good things

John is walking around on just one walking stick.

We went out to Host for dinner last night, first time since April

We are going to see The Nutcracker on Thursday.

I am going to The Phil with Lucy on Saturday.

I am taking Andrew and Philip to see Twelve Angry Men in London on February

We are having two festive afternoons  with friends during the festive season.

Andrew Philip and Phil are coming in for a few hours on Christmas day.

We have had amazing support from family and friends this year.

Penny and Johnny are spending a day with us on December 21st.

Andrew and Lucy are coming for a festive meal on December 21st in the evening.

John is enjoying a good pain fee life.

I enjoyed a weekend with my sisters.

We have had lots of visits from John's family in Glasgow this year.

We are enjoying the new technology.

I spoke to susan for two hours this morning.

All shall be well
and all shall be well
and all manner of things shall be well

and so it is.

Madiba - Nelson Mandela

Yesterday Nelson Mandela died.
I felt sad, the loss to the whole world is big. He was such an inspiration to so many folk worldwide ,including me. We lived with a picture of him in our kitchen at Seven Sisters in Hope Street.
When we moved into Hope Street, it was filled with old furniture, one of the wardrobes had a sticker saying " free Nelson Mandela"I kept in on for many years.

We were at the hospital yesterday,I do not like going to The Royal Lynda Mac Cartney cancer centre.

We are always kept waiting for long periods, up to two hours, I am not all that enamoured with the staff, they can be a bit bossy and dismissive. I am used to the great care at Marie Curie for both of us.
Still it has to be done. I think we will get someone else to go with John in future, then at least I can be at home feeling relaxed when he comes home instead of both of us being stressed out.

John has decided not to go to London for five days in December, I am a bit disappointed as I was looking forward to a few  days to myself, to get prepared for Christmas and just to have a sense of freedom. On the other hand I think it was a bit ambitious to think John could manage all that travelling, a new home, new bed, living in a busy household with young children. I was a bit worried.

I am a bit fragile at the minute, I feel very moved at this time of year, the carols , the lights, the whole Christmas festival is so connected with families, and I think of ma and pa, grandparents and all the folks who have passed on.
Our Christmas has to be different this year, our tradition since we came home from Spain was to spend Christmas day with Andrew Philip and Phil. it was a big adjustment for all of us, now we have to adjust to something else. Life's rich pattern of change.

I am feeling all kinds of things in this new role, I feel glad to be able to do it, and feel grateful that John is able to be home.
I feel a bit trapped at times, no spontaneity in my life now, everything has to be planned.
I feel a bit resentful if I am honest.I feel lonely too.John is here all the time, but now it is all about him, has been since his diagnosis, that has changed him. I think this is quite natural when you are very ill ,you only plan from one set of medications to the next ,one hospital visit to the next, and on and on.
I don't have him to talk to anymore I am the one who has to be leaned on. It is not a two way street anymore.

John's life is very small and he is the first to admit this.My life is getting smaller and I admit it, but sometimes that is when I feel resentful. Not my choice, not John's either, but he accepts it more than I can. He admits that when you get to 82 it is a bit easier.

Although when he feels good and when he is having a good time  and has forgotten for a little while how ill he is,he admits he does not want to go. So few people actually want to go.
Other times he says he is grateful to have had this time to see people enjoy his family , our families, friends.

I make plans for each week , for each month, hoping that when the time comes I can still go ahead with what is planned.

I am not so relaxed these days, I have so much responsibility, I wrote out a plan of John's medical regime and his daily routine and what needs to be done for him for Johnny and Penny, it made me dizzy when I saw how much I do.

We are adjusting to carers, helpers, befrienders in our lives,but they have not made it easy, it was a lot of stress in the beginning trying to get it to all come together so that we can feel helped.

I still do not like the interruption to our lives, but I am finding it a bit easier.

We do get some financial help, £78 per week attendance allowance , for John, this helps with taxi's ect - I am not entitled to a carer's allowance because I have a pension,I do not see the connection.
 I am on duty 24/7 and when I am not , a lot more than one person comes to do what I do.

Still ,it is how life is for now ,and really I want to embrace the life I am living rather than regret the life I am not living.

My camera is not uploading to picasa anymore, I will order a new cable and hope this will solve the problem.

We are still getting used to the new , BT system, Apple TV, Netflix.We keep forgetting what buttons to press, but we are improving. We don't watch enough TV etc  to be experts quickly and quite frankly when I do sit down to watch,I am too tired to learn.

Everything is changing at the moment,and will keep changing I am sure, and likely always has, sometimes you notice it more than others.

So cyberspace, this is my epistle for today.