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Phyllis’s Story

4 March, 2021

Phyllis Josephine Hewitt (Northern Ireland)

At the age of 76 Phyllis sadly lost her battle against the cruel, terminal disease pulmonary fibrosis on 25th November 2020

Written by her loving husband, Michael Hewitt

My name is Michael Hewitt, the husband and main carer for Phyllis, and I would like to tell you the story of Phyllis’s life from the time of her diagnosis to her death.  They say that a story should have a beginning and an ending, but on this occasion the beginning is hard to be found as it is only after Phyllis’s death and reflecting on the past, that some things come to mind that could have indicated something was wrong, long before diagnosis. 

After leaving school, Phyllis became a full-time hairdresser which she did up to the age of 30. After that, she did many other types of work and hairdressing became just a hobby.  She was always active, helping others and being involved in the community wherever we resided.  For the majority of her life, Phyllis always seemed fit despite being diagnosed with Type 2 Diabetes which never really gave her a problem.  

In 1975 our Son Jason was born. He was the apple of his mother’s eye and has never been far away from home even to the present day.

Phyllis on her 75th birthday

We move on in years to 2018 when we visited her sister in Newcastle Upon Tyne.  It was just before Christmas and I had noticed that Phyllis had become less active.  She was not walking as far as she used to, having to stop, feeling breathless and having to rest for a time.  Upon our return home in Northern Ireland she developed a very serious chest infection with cold like symptoms, breathing difficulties, headaches and a chesty cough.  She was ill all over the Christmas period and so we contacted the GP but with things as they were with the NHS, it was only a telephone diagnosis.  Antibiotics were prescribed but things did not improve and so we contacted the GP again.  It was difficult but a doctor did eventually see Phyllis and after carrying out the usual chest and lung tests, prescribed more antibiotics.  They did seem to ease the symptoms except for her cough which seemed to linger on. 

In Spring 2019, we were due to travel, but Phyllis then had to think about her cough and the fact that she seemed to be tired.  Her breathing was difficult at times which slowed her down a lot more, but she coped by putting it all down to getting older.  It was in July 2019 when Phyllis’s health took a bad turn when at first it seemed as if the chest infection had returned.  The GP once again gave a telephone diagnosis and liquid medicine was prescribed but her illness got worse.  After much more pressure Phyllis was sent to A&E where they found her blood pressure/ blood oxygen level was very low.  Phyllis was in hospital for five days, had many tests and was on oxygen for quite a lot of the time. 

Phyllis was allowed home with a course of steroids which did seem to help but they provided only a short respite in her symptoms.  It was a few weeks later that Phyllis was given a respiratory appointment where lung exercises and heart monitoring were discussed, but a date was never set.   

As the weeks progressed, Phyllis found that her walking was impaired more than ever. Tiredness and breathing became worse, shopping would mean having to lean on the trolley and she had to sit down to rest for short periods.

At a respiratory appointment in October 2019, Phyllis was formally told that she had pulmonary fibrosis.  This came as a total shock and it was then that we learned there was no cure.   The cause couldn’t be determined, and medication was trial and error. Phyllis lost weight around her upper body even though her appetite still seemed good but over the Winter period of 2019 and into 2020 her condition didn’t improve, and we still hadn’t been given a date for lung exercise or any other treatments.

Phyllis continued to find life difficult losing her motivation to get out and about and do daily tasks.  Then COVID-19 happened – the worst possible thing for people like Phyllis.

Appointments with the respiratory department were cancelled, Phyllis was told to shield which created anxiety and there were many times that we sat and cried together because the question kept coming up in her mind “why me?”.  We knew it was terminal but always had some hope that within the time frame from diagnosis to terminal something might come along that would give her the chance of a reasonable life.

We decided to get a stair lift installed which was a great help and I bought airflow fans to help with the circulation of the air around her, but it was not enough.  As a last resort I contacted the respiratory team and was able to leave an urgent message for help as I knew in my own mind oxygen was needed.  The next day a senior nurse came to see Phyllis and immediately prescribed oxygen. Commodes also had be used as at times, Phyllis could not reach the bathroom.   

An appointment was made to visit the clinic after which, oxygen concentrator machines were installed in the house – one upstairs and one downstairs which Phyllis had to be connected to 24/7.  Phyllis was prescribed more steroids as well as heart fluid tablets which eased breathing difficulties for a while and enabled her to move about better. 

She remained on oxygen 24/7 and in late July 2020 the steroid dose was gradually reduced. Phyllis’s condition changed once again for the worse. She lost the ability to walk, her weight went down to 8 stone and I could see that she was deteriorating.  She had more frequent visits from the nurse and whilst it was difficult for Phyllis, she never raised a hint of desperation.  Her unrelenting determination to fight this awful condition was reflected in her eyes, and the love that we shared gave me the inspiration to fight the battle with her.  I was at her side 24/7 helping her to manage day to day things.  

In November there was a real difference.  The Oxygen was being delivered at a higher level, Phyllis could not walk without close assistance and was unable to stand for more than a minute.

It was Monday 23rd November that Phyllis was very sleepy and did not want to get up out of bed. Her breathing was difficult, and her face character seemed to show that she was losing the battle.  On the morning of 24th November, she awoke and asked to go to the toilet, I lifted the commode as near to the bed as I could, and the Oxygen level was raised to the highest level.  Phyllis said that she could not get up.  I lifted her off the bed and onto the commode and she seemed better however, as she stood up she collapsed with me onto the bed in my arms crying out loud.  Phyllis then went into an unconscious state.  I reached for the telephone which was close by and called the ambulance and moved her into a comfortable position.

Phyllis was rushed to hospital and she managed to wave goodbye as she left the house.  I was devastated and just could not understand what had happened. Later that morning a doctor from the Hospital called me and said that they were trying to stabilise Phyllis.  It was not until the next day (25th November) that I was informed by the doctor that nothing more could be done for Phyllis and she had been informed of this.  Myself and my son were allowed to visit for a short period and Phyllis was able to converse with us.  We held hands and spoke about what she was going to do when she came home.  We had to leave, and it was a real loving farewell but later that evening we were called back to the hospital.  Alas, it was too late to be with her in her final moments.

Phyllis had been called to God’s house to save her from any more suffering in this world.  I have a big hole in my life, and it will take much time to fill, but I know that she is at peace in heaven and that I, as her loving husband, had done all that was possible.  I do get comfort from that.  

Pulmonary Fibrosis is a cruel disease which has taken Phyllis from me.  It needs more publication, more investigation and above all more finance.  I hope that in the future months I will be in a better position to help do that. 

To read Michael’s Belfast Telegraph article CLICK HERE

Michael made up this poem as a way of coming to terms with the loss of Phyllis.

A Poem to remember Phyllis
25th November 2020

The Angels came for Phyllis to take her home to God
For he had seen the suffering she was having on this earth
They whispered in her ear and said, “ don’t worry all is good
Just close your eyes and go to sleep for eternal life is yours”
Phyllis is now in heaven with no more suffering or pain
For we know the Lord will take good care of her for now and evermore
Our love for you will never cease, we think of you each day
In a heaven that will give you comfort and peace in every wonderful way.