“Nothing really prepares you for the moment when you are told you have a life-threatening illness.  You are numb with shock. The world as you have known it seems to come to an end and the unknown future is more like a nightmare. The paralysis does not last too long – there are decisions to be made. You can turn your face to the wall and simply give up!  You can wallow in self-pity and let waves of sympathy wash over you! I discarded both these notions and took stock. 

My disease does not define me. I am still me!! There is no one else like me – I am unique!  It made sense to me that each new day granted to me would be part of a voyage of discovery. I would be experiencing a new way of living and I would be meeting a host of new people – all eager to help. What a variety of amazing people and personalities they have proved to be!

My consultant confirmed that there was no cure and no treatment  - one day, perhaps – they were working on it. As and when difficulties arose, as inevitably they did, he was able to nudge me in the direction of experts who were wonderfully kind and helpful towards dealing with problems. Then, one day, after a consultation, and almost as a throw away aside, he asked, “How would you feel about being referred to the Day Centre at the Hospice?”  Here was a big step on that voyage of discovery!

Thursday was my day.  A gentleman rang our doorbell - the first of whole army of volunteers I was to meet that day. He drove me carefully to Strathcarron. No hanging about! Nurses were on the lookout for fresh arrivals and one of them came running down the ramp pushing a wheelchair. I noticed how sensitively she watched what I was capable of managing for myself and where I needed help. Minutes later, there I was, in the lounge, and meeting the rest of the Thursday gang! Another volunteer was asking how I liked my tea and steering 'naughty but nice' biscuits in my direction. Over the weeks, I was to discover how vital these volunteers are to the running of the Day Centre, glimpsing that many of them are there because of the way Strathcarron has touched their lives and now they want to help make a difference in the lives of others. They succeed!

It is refreshing to discover that there is no regimentation. This is your day! You can bury your nose in a newspaper if you choose, or indulge in a spot of personal pampering. If the air is fragrant, it is because there are aromatherapists at work. You can even startle your family and friends by having your nails painted! If you walk into her salon, meet the hairdresser. She has such beautifully groomed hair herself that you are hardly surprised when guests emerge from her tender care looking transformed.  What a morale booster! 

Should you care to wander down the corridor, there is a veritable  Aladdin's cave – they call it the Craft Room. There is always light and laughter and music. The gifted staff are experts in teasing out the hidden talents from those who have gone to explore.  “Did I really make that?” they find themselves thinking.  The room is a treasure house of beautiful things. Don't get too engrossed in that painting!  A nurse appears to nudge you towards the dining hall.  They quickly learn that some of us are oh, so slow! A visit to a restaurant would now, for me, be a massive ordeal. I do not need to worry at Strathcarron. The meals are superb and some sixth sense tells each member of staff what their visitors need – the kind of chair, the drinking cup, the utensils, the food itself. Relax! Enjoy your meal! No one worries that I am the slowest eater in the universe. No one calls “Time”!

It takes only a few weeks to know you are among friends, not strangers.  My Thursday friends have a life time of skills and experience behind them. You will not find them sitting around with long faces and talking about illnesses!  Only once did a lady sitting next to me say, “If you don't mind me asking – where is your cancer then?”  I had to confess that as far as I know, I do not have one!  I am one of those neurological mysteries, waiting for answers.  Motor neurone disease is like that.

I have scarcely mentioned the staff at the Day Care Centre but they make a tremendous contribution to our well being. They are observant without being intrusive. They are there for you, and more than ready to have a quiet chat if there are special concerns bothering you.  To their training and skill are added the vital qualities of sensitivity and caring which are so very important.  They complete the Thursday family.  They too have become friends.

Alas! Into this happy family crashes A PANDEMIC!

We were once staying in a hotel in Toronto when the fire alarm rang out. With astonishing speed, people spilled out onto the pavement and the building was an empty shell. The Pandemic was just as effective in emptying the Day Care Centre at Strathcarron. The fire bell in Toronto turned out to be a false alarm. The Pandemic was, and is, devastating, affecting the lives of everyone regardless of status and age. Suddenly, without warning, I was cut off from my friends in the Thursday Gang. I knew well that, like me, they would be cherishing their memories and recalling smiles and laughter.  And what of the Staff?  There was no question of them sitting around and wringing their hands in despair. The Grand Facilitator, Sister Mandy herself, soon had her team around her – socially distanced of course! They were brimming with ideas for reaching out to us and linking us up. Pandemics are powerless to undermine caring. We look forward to white envelopes, unmistakably from Strathcarron, popping through our letter boxes with quizzes, newsletters – and even craft projects, including all you might possibly need to complete the finished article.  And there are prizes!

Having a terminal illness is a very lonely affair. You cannot share it – nor would you wish to. The Day Care Centre makes a huge difference. Caring is never a one way system. There is a mutual enrichment of one another's lives when we meet together. This applies to staff and patients. The pandemic cannot put a stop to this.  There are regular phone calls between staff and patients.  We are not forgotten and can still smile at the world.  It is always made clear that we are only a phone call away. How reassuring that is! In a recent phone chat, the Staff Nurse mentioned new patients who have been referred to the Day Care Centre. They have not even had a chance to meet one another yet.  “Never mind!” she said, “We can still make a difference”.

Our huge thanks to Heather for sharing such moving words.
April 2021