Diana's story (Morecambe Bay Pulmonary Support Group)

Diana (or Di to her friends) Jones was born in 1939. She studied nursing at the Nightingale School in St Thomas School in London and had two children. She was a keen flower arranger winning first prize at the World Association of Flower Arrangers show in 2002 and enjoyed gardening and craftwork.

Diana was in her late 50s when she was diagnosed with breast cancer after a routine mammogram and had surgery and radiotherapy. In her 80s she was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) – a condition in which the lungs become scarred and breathing becomes increasingly difficult.

Here her daughter Wendy Jones shares Diana’s experience of living with IPF and why she decided to set up Morecambe Bay Pulmonary Support Group as a lasting legacy to Diana:

“We celebrated mum’s 80^th birthday with a housewarming party for all our friends. It was a beautiful day and people spilled out into the garden. Mum proudly told everyone that since she had moved, her grandson had brought her a cup of tea every morning! Mum had been assessed as pre-diabetic, so she had worked hard to keep her weight down and succeeded in controlling diabetes with her diet alone. She also told me she had found a lump on her chest. In her usual no-nonsense way, she went and reported it to the doctor who sent her for a mammogram and chest x-ray. There was no sign of her cancer returning and the lump was just scar tissue.

“However, the radiologist was not happy with the chest X-ray. A few more tests including a CT scan and breathing tests revealed a condition called Pulmonary Fibrosis. This diagnosis was given to her by the GP at our practice who specialises in respiratory problems. The GP told her that ‘at the right stage’ she would be referred to the consultant and specialist unit at the hospital for pulmonary rehab, medication and access to a specialist nurse. At that time, we had no idea of the enormity of this diagnosis. Like most people, we had never even heard of it. Despite the scary information I found online I felt that it could not be that bad as nothing else was happening – just a routine check in six months with the GP. 

“Unfortunately, that six-month check coincided with the start of the first lockdown, so it was cancelled. At that point, we sorted powers of attorney, wills and an advanced decision to not be ventilated.

“So, we plodded on through the first lockdown, my business ground to a halt, my son was schooling online at home, and mum’s floral art classes were paused.  Mum was understandably disappointed, but she put her time and efforts into the garden. At that stage, she was starting to struggle to mow the lawn but with her cheerful outlook she reassured me that she could rest halfway through if she needed and ‘after all it doesn’t matter if it takes me all day!’ 

“She relished being in the garden and constantly commented how lucky she was – she was very aware of families who were locked down in high rise homes with no outdoor space.  We were also fortunate to have a home where mum could live separately to us as we were very aware of her vulnerability to COVID.  By the end of summer 2020 she was starting to get a bit more out of breath and was experiencing some muscle pain and weakness, so she went to see the GP who sent her for a chest X-ray. This showed that her fibrosis had worsened so she was again sent for another CT scan and breathing test.  There was a long waiting list for the breathing test which took place in November. Her cough was getting a bit of a problem especially when she was eating. We then heard nothing despite mum being told by the nurse that the breathing test results were being sent to the GP that same day. At this stage, mum was still very capable and knew her own mind. She just felt she had to wait and that she understood how busy everyone in the NHS must be. It is difficult to argue with that and much as I wanted her to chase it, she didn’t want to, so I had to respect that.

“She went to the surgery just before Christmas for a routine blood test and happened to ask about the test results.  A phone call just after Christmas confirmed that the results were nowhere to be found! Christmas 2020 was lovely. My son was home with us (He spends alternate Christmas’ with his father) along with my then partner who was in a support bubble with us. Mum spent hours creating amazing decorations for the whole house and making her now famous mince pies. She took charge of the Christmas dinner including homemade Christmas pudding which had been maturing for months. It crossed my mind that it could be her last Christmas but dismissed the idea as overdramatic. In fact, when we saw in 2021 together, she was making plans around which competitions she was going to enter and what projects she wanted to take on. Indeed, she went on to enter two classes at the National Association of Flower Arranging competition which was online.

“At the beginning of March 2021, on a Monday morning, I checked on mum briefly before going to work as I usually did.  She was still in bed and told me she thought she might have flu although she did not have a temperature. She was going to take it easy and see how she got on, so I left her to it. Her symptoms came and went over the following days so by Friday I wanted her to just get checked by the GP as we approached the weekend. She reluctantly agreed. I was horrified at how out of breath she was. Just getting to and from the car and in to see the doctor took every ounce of strength she had. The GP was genuinely concerned and told us he would contact the consultant to get her seen asap. My instructions were that if I was concerned, then I should contact 111. Once home, mum did not stop coughing to the point where she could not get her breath. She was exhausted and could not breathe so I called 111. The paramedics were wonderful and were shocked by her oxygen saturation. She instantly improved when they gave her oxygen, so they took her to hospital and explained they had to treat her as if she was covid positive. That meant of course that I could not go with her.

“The staff at A&E were kind and phoned me. They said that she may have a slight infection but would keep an eye on her. I was surprised when, after 24 hours, she was discharged.

“A week later she finally got her appointment with her consultant.  He was wonderful with mum and introduced us to our specialist respiratory nurse.  He gently explained that her diagnosis was Idiopathic Pulmonary Fibrosis i.e. there is no known cause.  At this consultation, it was the first time anyone had mentioned the word exacerbation, the first time we had been given any leaflets about the condition and the first time we had been told about anti-fibrotic medication. We were shocked but remained hopeful particularly if mum could get anti-fibrotic medication which could slow down the progression of the disease. I do remember being shocked when the consultant said he would see us again in 12 months.  I hated to think that mum would struggle for another 12 months. The consultant had to take mum's case to a committee for approval as the drugs are very expensive. So, there was another wait. Once approval was given, there was another wait.   

“One of the problems with IPF is it can be very unpredictable and can progress at an alarming rate. So, waiting for anything is extremely stressful. Often the illness progresses faster than the systems in place to treat it. By the time the drugs were available for mum to take, she was too weak to cope with any of the many side effects.  My brother and I decided that they should be stopped.  What were we trying to prolong exactly?  Around this time, we had an end-of-life discussion with the GP who came to our home to see mum.

“One of the saddest things to witness was mum’s realisation that she would not be able to use any of her vast collection of floral materials that she had collected to use over the years. She wanted them to go to some of her many friends who she knew would cherish and use them. So, we arranged a Saturday for anyone who wanted to, to come and help themselves. These items were quickly being referred to as Di’s treasures!  It was arranged for the May bank holiday weekend.  She knew people would want to contribute so she requested donations to be split between Action for Pulmonary Fibrosis (APF) and a local homeless charity. 

“By this time, I had virtually stopped working.  It was impossible to juggle everything.  My son was also needing support as he was sitting his GCSEs. At the beginning of the year, we had also committed to getting a puppy!  I moved downstairs to ‘live’ in mums’ part of the home, camping on the floor so I was always within ear shot.  We didn’t really talk much about her dying, but she did tell me she wasn’t frightened of dying but worried that the people around her would not be able to manage. I took this as a challenge!  This woman who had quietly nursed and reassured people throughout her life needed care so I just copied what she would have done, after all, I was taught by one of the best. 

“The last month of her life was incredibly difficult and traumatic. The speed of this illness is terrifying. To hear someone, you care for tell you they can’t breathe is incredibly distressing. We soon found ourselves in what I can only describe as a whirlwind or rollercoaster. Carers came in four times a day. I hardly left mum’s side. I managed her medication, oxygen, hospital bed and food and fluids.  I slept on a mattress next to her using a baby monitor whenever I left to go to the kitchen or bathroom. My son took over caring for our puppy. The week before she died, we had someone from the hospice come and sit with mum for two hours.  It might not seem like much, but my son and I were able to take our puppy to the beach for the first time!  It was wonderful and I was able to film our puppy playing in the sea which I brought to show mum. I think that was probably the last time she smiled. 

“By the time the Bank holiday weekend came around, mum was virtually unconscious.  The carers and district nurses had made her so comfortable it was hard to accept she was dying.  As we had arranged for people to come and collect ‘Di’s treasures’ my son had to facilitate this.  He was in his element charming all of mum’s friends and we were able to raise over £400. My brother arrived from Derby around lunchtime so helped too.  At around 8pm as the sun was setting mum quietly passed away with us all by her side.  It was as if she knew her friends had been for her treasures and her family were together. I remember feeling an unbelievable sense of relief. The house went very quiet once all the machines were switched off.  It should have been a time to sit back but my work was not finished!  Back in 2007 Mum had bequeathed her body to Liverpool Medical school, so her body had to be kept cool. I opened all the windows and waited for the district nurses to confirm her death so we could get the undertakers to collect her as soon as possible. They knew mums’ wishes so knew to not do anything with her body other than keeping her cold!  It was a bank holiday weekend, so I had to leave a message with the medical school to inform them.  At this stage, there was still no guarantee they would take her. After some last-minute dashes to ensure all the relevant paperwork was in order she was accepted. As a family, we were delighted and felt a sense of achievement that we had managed to carry out her wishes.

“We were all extremely proud of her and held a thanksgiving service a few months later where all her flower arranging friends got together to create the most incredible floral tribute in the shape of a tree where each branch represented an aspect of her life. One of those branches was her legacy which, alongside her helping future medics, we wanted to form a support group to help families in the same position as we had found ourselves in. The group launched in October 2021 (online for now) with the help of the respiratory nurse who looked after mum and donations in memory of mum and her sister who sadly died a few months later.  I think she would be pleased with how much good has come out of something so awful.

“I did eventually go back to work part-time in my business, but an opportunity arose for me to work for Action for Pulmonary Fibrosis helping provide support to even more patients and families in the whole of the North of the UK and Wales. We also campaign for better resources and treatments, fund research and raise awareness of this devastating illness. Caring for mum was a privilege and so is helping other patients and carers affected by this devastating illness.”

How can I find out more?

You can find out more about Morecambe Bay Pulmonary Fibrosis Support Group at https://www.actionpf.org/support-groups/morecambe-bay-pulmonary-fibrosis-support-group

A case study with Morecambe Bay Pulmonary Fibrosis can be found here. A PDF version of the case study can be found here.