Day 22 – marking time amongst the artwork

Another day on the ward and all is much the same.  This place feels very familiar now, the same cheerful nurses, the same doctors, even most of the same patients.

We set off on our daily walk, well I am walking and pushing hubby in the borrowed wheel chair, and we wander along the ground floor corridor. It is a special place linking four major hospitals, each with it’s own specialism and history.  There are two areas we love, each an atrium,  with sunshine flooding through the glass panels above, as we sit and chat there is a feeling of space and light here, it is a healing place.

The corridor is lined with artwork, with pictures of hospital staff, and details of their roles and responsibilities.  As we head towards the children’s hospital the artwork is of framed pieces, each different and each illustrating the International Rights of the Child.  They are fascinating.  One, titled  Article 13 is by Alan Lee.  I had never heard of him before but his monochrome image depicting the Right to go where we want in our country and to travel abroad as we wish, is amazing. A black and white drawing it depicts a border, a harsh wall where origami birds are trapped in the wire along the top.  There is much to see in this picture.  I could look at it for ages, and I will be looking for a print one day soon.

It made me think of all the people seeking medical help at borders across the world.  The children in hospitals in war zones and those that lose their lives trying to reach safety.  A day for counting our blessings for sure.

Anyway, back on the ward, we are soon settled again, the days continue, we are playing a waiting game for sure.  Hubby is looking good, his health is improving everyday, step by step towards the operation that will fix his broken heart.

And me?  I am grateful as ever for these memories we are making, and for finding new things in unexpected places.

Day 19 – time at home counting my blessings

At last things are looking up.  Yesterday hubby was much better, he even managed to walk with me to the day room, the first day since he was admitted we didn’t use the wheelchair!!  The medics are pleased with his progress, it feels like we are moving closer to actually fixing his heart.

I have taken a day off visiting and come home to the hill, the sun is shining and the trees are all in bud.  It is a useful reminder that summer is approaching and that we shall spend the warm days together, as he makes his recovery.

When life is tough, and it has been this past few months, there are many worries. I have spend nights lying awake thinking thoughts and there have been difficult decisions to be made. Amid this chaos there are unexpected bits of wonder. One thing that will stay with me forever will be the kindest shown to us in so many different ways.  People reaching out with open arms and hearts to try to do their bit to make things better.  Alongside the gentle caring of the hospital staff, have been the family and friends, who quite literally have wrapped us up and taken care of me.  It is simply amazing.

Homes that have been opened to me, with a bed to sleep in, closer to the hospital, and so much more. The company of people who know you well,  and who really want to help. I have been cooked for, taken out for meals, laundry done, they have driven me to where I need to be,  I have been completely taken care of, I shall remember it forever.
Friends and family who have come along to visit, bringing a taste of normal life with them together with thoughtful gifts and warm love.  Everyone has to make a huge effort, no one lives close by to this city hospital, and yet they have come, and it has meant the world to both of us, to know how much people care.
It is when things are difficult that you need your tribe around you.  I had thought moving away would mean I had lost my connections with my tribe, but it seems not.  People who have stayed in your life for decades are, it seems, truly friends for life.  I am so grateful to them all.  It is making me think about the times we have had people living in our home over the years, always with good heart we have delighted in helping. It is only now I can understand a bit of how it feels to make someone else’s house your home, albeit briefly.
We are blessed with the best family and friends in the world.  Those that understand the issues we are facing are helping in so many ways.  I know I am hard to help, a life of having to be independent, does not make me one who easily ask for, or accepts help.  It fact my default position is to decline, saying everything is ok, even when it isn’t.  It is then that those who know me are finding other ways to get help to me, and I am in awe of this.  Thank you doesn’t come close, I hope they all know how much their support means.
 Today will be spent in the Welsh sunshine, on my own.  I will take a walk by the sea, but not at our favourite beach. I am saving that one until we can walk again together, hand in hand in the late summer sunshine.  With luck the best is yet to be.

Day 15 – good news bad news

Another Monday and we are still here, hopeful that this will be the week he gets his operation.  The ward is busy today, new people post operation are needing care, the staff are rushing about and we sit in the middle wondering what will happen next.

The doctor arrives mid afternoon, with the results of this morning’s scan.  The good news is there is nothing seriously wrong, the bad news is there is an underlying infection.  This will mean a whole week of medicine before they will consider surgery again.  The news sinks in, we are looking at at least another three weeks in hospital, maybe more.  It feels a bit daunting.  The doctor answers our many questions and then takes his leave. It is hard to think is going to be a long time til we get him home, we are both a bit quiet.

We decide to escape the ward and head down to the cafe, the one run by volunteers, profits helping where ever they can.  Tucked into his wheelchair, with carrot cake and tea we chat, it feels almost normal.  We decide to make this a regular daily treat, a little bit of the usual amid the unusual.  We shall look forward to this.

I have been thinking how this life has become so natural, it is surprising how at home I feel in this place. Familiar faces everywhere, from the nursing staff and doctors to the other visitors, all of us making the best of tricky situations.

I will be back later today, and am planning another excursion.  There is a beautiful atrium in the hospital and we shall go and sit under the rainy skies and enjoy a change in environment for a while.  Making the best of this is the best I can do.  We are making memories, even if some won’t be remembered with affection.  No day should be wasted, because in truth each day is all we have.




Day 14 and all the days before

Day 14 – two weeks in and I am really wishing I had been writing each day during this crazy period, but the truth is I have been far too exhausted and emotional to even switch the laptop on.

So, let’s recap, it was two weeks ago today, a warm and sunny Sunday in North Wales.  I spent the day in the garden, digging out the old plants, tidying the borders, good therapeutic work, after weeks of uncertainty about hubby’s health.  Delayed admission to hospital to begin to mend his broken heart, he has become more and more poorly, these are worrying times.  This Sunday I persuaded him to join me in the sunshine and he sat on the bench, chatting and watching me dig and toil.  It began to feel almost normal.  My phone, for weeks glued to my body awaiting the most important call of all, was on the table indoors.  We heard it ring and I dashed, just too late, I had missed it.  Luckily, I had the hospital numbers on speed dial and within minutes we learned that at last there was a bed!!!  We were on our way to the rainy city where people could operate and fix his heart.

The drive there was tricky, sat nav got us most of the way and good luck did the rest. Unfamiliar roads then, have quickly become second nature.  Soon he was allocated the precious bed, I wanted to take a photo of it, such a rare thing.  Then, I left him, in the good care of people who understood, I felt emotional and a bit shaken but I was optimistic that soon he would be healthy again.  I would get my strong and capable husband back. The person I can rely on for everything, from carrying shopping to driving distances, my friend, my partner, I have missed him.

When we heard later that night that the operation could be done the next day we were both thrilled, we hoped that this will be sorted soon. Alas it was not to be, not this time nor the next time or the one after that.  Each operation cancelled at the last minute, it seems hubby is not well enough for surgery.  I cannot explain the feeling of hopes dashed time after time, the worry and concern.  We had thought admission to hospital would be the beginning of becoming well, it seemed at times that he was actually getting worse not better.  Problems with other organs are detected, they need more doctors, more tests, on and on and on it goes.

During this last two weeks I have visited daily, sat beside his bed time spent talking and sometimes watching him sleeping, he is exhausted by breathing and lying in bed.  I have spoken with nurses, with doctors, they all agree, he is not a well man.  This is very tricky.  I am eighty miles from home in a once strange city that is now becoming very familiar.  I have been wrapped up with the love of friends and family who have offered their homes, their support and their time to take care of me, and yet it is all difficult.  I have driven miles and miles between beds, toting my wardrobe in a suitcase, most of my life is in my car.  Nothing feels right.

Visiting times are long and yet the time passed quickly it is almost restful.  Sometimes I just sit, holding his hand, other times we can chat and laugh. Once, last week I managed to take him off the ward in a wheelchair for an hour of normality in the café downstairs. We were hopeful things were improving, but a week on we are no further forwards.

I know they can fix him, I understand more about hearts and surgery than I ever wanted to, I understand the importance and the irony of him having to be 100% well to have an operation to make him well.  None of it matters, we will do this.

I think the most difficult thing is the isolation, that despite the love and care people are offering to me, I still feel completely alone.  I am responsible for getting myself to and from the city, for talking to the doctors and trying hard to understand what is really going on.  They say the operation may happen this week, I am trying not to hope, instead consoling myself with the facts.  He is in the right place, people are caring for him and we are no longer trying to manage on the hill.

I no longer lie awake at night listening to him coughing, checking his breathing, for this I am grateful.I am grateful for other things.  For the kindness of strangers, the man at the reception desk late one night in a hotel across from the hospital.  I couldn’t face driving another mile, he found me a room,  with kindness and a smile, he did the best he could to get me a good deal.  As I type this I have just checked out of that room, I kept it for an extra night, the luxury of walking across the road to the hospital to visit has been fabulous.  I came into the bar area to sit and wait until visiting time, and the same kind man offered me a coffee.  I set up my laptop, writing has always been a great way for me to pass time, and within minutes another member of the staff team brings me a coffee to the table.  Little things, they mean a lot.

As with every experience I look for the lessons.  I know that this is nowhere near over, that at best I have another two weeks or more to spend in this city, maybe a lot longer, and yet already I  have been reminded of the good in the world.  People who go just a bit further, the nurses, there have been more than one, who have hugged me out of sight of the ward, who don’t pretend it is all ok, they know it is not.  This is day to day stuff for them and yet they make me feel special.  I wonder if they know what a difference they make?  Then the doctors, again, there have been many, who sit beside us, and sometimes just with me, they explain over and again the issues, answering question and helping us to understand what is happening.  The young registrar who coped well with my tears, moving me to a private room and spending time to reassure me, they have this covered.

Back on the ward I watch other wives, mothers, daughters and partners sitting beside beds, all hoping for the best.  The Mum that is two years in to her son’s admission, who visits daily and does everything she can to keep him calm.  The wife who sits for hours reading aloud to her husband, he cannot talk to her, or move for himself, but I am sure he can hear her.  All of us share smiles, and stories, in the day room and across the beds.  Part of a club that no one wants belong to, we keep on keeping on.  Another lesson for life.

I tell hubby often that this is but a moment in time.  We shall get through this, and life will go on.  We will walk again along the Welsh coastline, in warm sunshine and laugh as we always do.  Grateful for this life we have, we will watch our family grow and prosper, and we shall grow old together.  One thing I know is that I shall never, ever again take life for granted.

So, back to the beginning, it is Day 14 of this adventure.  I shall walk across the road shortly and visit, hopefully we will chat and he will be on good form.  Today he is getting a visit from our precious Granddaughter, which I hope will lift his spirits, her Mum and Dad are driving up from the countryside to spend time with her Pops.  This means the world to me.

I have no clue what next week will bring, we may well be in exactly the same position as we are today, and this is tricky for someone who loves a plan.  I am learning what is actually means to take one day at a time, to have no control over events and to have to go with the flow.  It is all I can do.

I cannot write all this without talking about the NHS.  The treatment offered free of charge at the point of need is simply the most valuable asset we have.  We need to hold it close and fight fearlessly against those who want to change things.  The people I have witnessed this last two weeks are hard working and skilled, of course they are, but more than that, they are part of a team, a culture that could never be built again.  The different uniforms, from the suits of surgeons, to the scrubs of theatre nurses, the greens, whites, blues of the nurse’s shirts, each showing the part of the team to which they belong.  Every one of them using their skills to make the machine that is the NHS work.  The sum of their parts is greater that each individual, another lesson for life.

I will not be part of the generation that wastes this, that casts it aside in the name of profit.  I will stand and fight every inch of the way against the media barons, the politicians and the business people who are circling above like vultures, waiting to pick the carcass clean.  A young doctor told me yesterday that the NHS is the best thing about this country, a country he has chosen to move to, to work in, and somewhere he can see the value of.

I think of my Dad’s family, of his sister who died in childbirth, along with her baby, because the family could not afford a doctor, and his eldest sister who lost a leg for the same reason.  I think of my Mum’s Dad, the Granddad I never knew, who died of a heart attack as a young man.  His son became the first man in the family to live beyond fifty, thanks to heart surgery and the NHS.  These are real people who lived within living memory, and I know that without a fight, this world will come again. So, it is time for us to stand up and to say, enough, we will not allow you to take this away from us.  My Granddaughter is just three years old, I want her Grandchildren to have health care, free at the point of need, forever.




on helping the helpers

I have a temporary job here in Wales, just down the road from the hill, it is office based, full of smiley people who do their level best everyday to help those in need.

We work with people that most people would pass by, with those who would be judged and who are not sure how to help themselves.  It is a tough job, done with great good heart by people who give a damn.  It is my privilege to be part of this team albeit briefly.

If anyone was watching us at work I think we would look like worker bees, constantly moving between the offices and the community, grabbing a quick coffee on the way.  Mostly people are smiling, they certainly support each other, never a problem someone can’t offer an idea about.  Yet amid all the activity are real people with real lives and sometimes it is worth looking at the helpers.

It makes me think about all the other places I have worked in a team to offering to support and help where it is needed.  From youth work to refugee aid, I have seen people coming together to try and make things better for others.  Within these teams there are people who have struggled with life themselves.  Some have been poor, or poorly, have worried about family and loved ones, and yet despite all of this they come to work with a smile and get on with things.

These people are my heroes.  Looking above the smile and into the eyes is sometimes a giveaway, things are not as good as they could be. Others are dealing with people who remind them of times gone by, bringing up unwelcome thoughts of problems in the past.  Yet, everyday there are such people turning up for work in all sorts of places and quietly getting on with trying to help, people who are making things better for others.

Wherever you are, whatever you do, there is always scope for helping.  A friendly smile, a light touch to the arm, eye contact and kind words, cost very little, but can mean so much.  Spare a thought for all the helping people, think about how they put themselves and their own worries and problems into a box while they reach out to others. Think as I do, how best we can help them.  Helping the helpers, it has be worth it.

on the first day of April

today is Easter Sunday, a day that holds little significance for me, an active none believer, but a day that evokes memories of Easter’s past, of small children and egg hunts, of family dinners and lots of chocolate..  It is also the first of April and as such a day for pranks and jokes, who doesn’t love some foolery?

For me the beginning of a new month is giving me the motivation to start writing here again.  It has been a while.  Things have been tricky for some time and the last month particularly so.  I shan’t go into lots of details but life has not been kind to us recently.

We are staying positive, something that has taken every little bit of energy I have left.  At times recently it has been as if we are in the middle of a storm, with no umbrella and no shelter.  We are standing in the rain without a coat between us and all around the sun is shining on others.  It is not a good feeling at all and yet we are holding tight and we are still here, we might be in the rain but we still have each other.

Hubby is poorly, we know he can be fixed, the surgeons have told us so, and we believe them.  The operation has been delayed, and the stress levels are high.  On one hand we understand the pressures facing our NHS and we totally support what they are doing under such difficult pressures.  None of this is easy. On the other, more selfish hand, we are feeling the agony of waiting for phone calls to be admitted to hospital, phone calls that either don’t come or come late into the night, bringing bad news, no bed can be found.

The consequences of all of this are many.  The balance of our lives has shifted.  From being my ‘go to’ person, who helped with everything, from carrying shopping to DIY, now hubby is mostly resting.  From eating everything I can ever cook and a bit more, his appetite needs nurturing.  I am learning to do it all myself, just as I did before we met and find myself second guessing his movements and his breathing on a daily basis.  It is not comfortable to be ever watchful of someone you love, hoping and hoping that today will be a better day.

So, life is difficult, here on the hill, we have given up our house we had for the winter,  there just too many stairs made life even more difficult.  Here our one level living makes things easier.  We are thankful we have our home on the hill and our gorgeous garden, even if it is in need of some serious work. I shall get out there eventually to at least cut the grass. Our neighbours come and go, as we once did, it is nice to have them around us.  We are finding new ways to relax.  Reading, chatting, I have been baking and we have welcomed friends and family calling in to say hello.

This living in limbo, waiting for phone calls has little merit. I hope that the operation will come quickly now, then we can begin to get hubby well and our lives back on an even keel. There is little doubt this experience has changed both of us, I think things will be different from now on.

When everything you take for granted is lost to you, when you find yourselves in the midst of seemingly unsolvable problems, in fear of ill heath and without a lot of your possessions, or your support team,  well, it gives you time to evaluate life.  What is really important to us?  Where do we actually want to be?

Until now, mostly life has happened to me  I have gone with changes, made the best of things, sometimes made massive mistakes.  Yes, I have had control of my destiny, but within parameters, always making decisions based on other people, on jobs and on geography.  This last year, none of that has been possible.  We simply lost our way of life along with our home.  We have bounced between our place on the hill, the house in the town and a house share, and along the way there have been happy times alongside the worry and a constant feeling which I can describe as being the loneliness of distance.  We are still here, shaken, stirred and a bit bruised, but still here.

Today, he is feeling brighter, we go for a drive, we head away from the coast, making our way inland and soon the mountains rise up in front of us.  Hubby is loving it, he is seldom a passenger, in the last ten years he has been at the wheel of all our days out and holidays, he has driven through lovely places, with his eyes on the road.  It is my pleasure to be the driver now and to see him enjoying the views of the snow capped peaks and the green of valley below.  As we drive we chat about other journeys, about times with friends, and how lucky we are to have so many wonderful memories to look back on.  We wend our way back home, the radio, a constant companion in the car, is playing and the DJ is having some April Fool fun.  We are laughing, spirits raised as we head back to our sanctuary on the hill.

I can’t help but be grateful for the life we have made together, and even now, in the middle of the worst of times, I know there will be many more pockets of wonder to be stored in our memory banks.  Today, driving through mountains in the sunshine, laughing at the radio is such a simple thing, yet it is already a precious memory. We are thinking of the summer, when back to health, we can resume our walking, and we are already planning places to visit.

So, in the middle of tough times, there are still good times, we just have to be open to them.  Looking around me I have much to be grateful for.  Life goes on, things change, but the future is there, just around the corner, I can almost touch it.