Phil and Joanne’s story

Joanne shares her beloved husband's acute myeloid leukaemia (AML) story to help make others awareness of the symptoms of leukaemia. Some readers may find this story upsetting due to its sad content. Reader discretion is advised.

I want people to hear our story. I want to raise awareness of acute myeloid leukaemia (AML) and how it can present itself as weird and random symptoms that aren’t always easy to connect.

My beloved Phil Beachey was born in 1956; he was a country boy and grew in to a fit and healthy man, that stayed with him for most of his life. We met, fell in love, and in 1992 we married. During our 36 years together, I recall him being ill just once – a bout of bronchitis about 20 years ago.

In June 2022, Phil caught COVID-19. We were both essential workers during the pandemic and took what precautions we could. It was like a bad case of the flu that lasted for a week, and he tested negative just two days before we were due to fly to France.

I remember mentioning that hopefully, he could manage another 20 years before he was ill again… How wrong was I?!

In late July/early August, Phil had some strange red and purple marks appear on his back. He wondered if perhaps he had been bitten whilst we were abroad. But, we figured they would disappear given time.

In October, Phil began complaining about a toothache and numbness of the bottom lip. He was told he would need four extractions, but hopefully he would be out of pain for Christmas.

In November, Phil woke up with a swollen and painful knee – the pain was so bad he could barely walk and couldn’t drive. I suggested that, as we were due to go away for Christmas he should mention the marks on his back whilst there. The doctor had suspected arthritis of his knee, and he was referred to the hospital for a scan. Two different doctors looked at the marks on his back, neither had any idea what they were and described them as ‘weird’, so a referral to dermatology at the hospital was made.

A week later Phil came stumbling down the stairs clutching his chest in agonising pain. Panicked, we called 999 thinking it could have been a heart attack. We were assured it was not. The chest pain they felt was related to nodules on the lining of his lungs, they also found signs of infection. Antibiotics and painkillers got him well enough to return home with an appointment at the hospital for two days later.

Several different tests ensued, and I was called in to speak to a very pleasant lady who wore an ‘Oncology Nurse’ badge. Phil was however referred to Dermatology and we found out he would need a biopsy on the lumps on his torso.

December was a month full of further appointments, tests, sorting of appropriate pain relief, biopsies, a blood transfusion, and the postponement of our holiday which I rebooked for October 2023 so we could look forward to it. Biopsies on his skin showed no sign of skin cancer and Phil was referred to Haematology.

In January 2023, Phil had been feeling much better, so we headed to the hospital with hope, but we left with more questions rather than answers.

We were told Phil had AML; he was also one of a small number of patients who deposited rogue cells in other organs in his body; the lumps on his torso were leukaemia cells being deposited in his skin.

They could not offer him any treatment at the time; it would be a fight that the body couldn’t win. So, we needed to watch and wait as the only certainly was that some of his symptoms would return.

We settled into a routine, I checked his temperature 3 times a day, questioned him about any symptoms and reported any concerns to the hospital. There were a few more trips to the hospital to have symptoms checked out or to have blood tests. The results kept coming back good and we started to relax.

By April 2023, the lumps on his torso had disappeared and he was no longer in pain. However, by May we had noted some marks on his head so I sent some photos to hospital and they arranged an urgent bone marrow biopsy and appointment.

The leukaemia was back and he needed treatment. We were at the hospital on the Friday so he could have a PICC line inserted, and we were sent away for the weekend to get our affairs in order; an instruction that made both of us catch our breath.

On the Tuesday, we got the call to say a bed was available. We remained full of hope; surely a positive attitude would increase his chances of responding to treatment. But the news wasn’t good. Phil’s kidneys were not strong enough to cope with the suggested chemotherapy regime, but they could offer an alternative one. We asked what the success rates of this one would be, and we were told they were not significantly different to the former one. Things still looked hopeful.

Mentally, Phil was ready for treatment, he wanted to get on with the fight he had plans for our future. I was perhaps more frightened than he was but, there was no way I was voicing my fears and making them real. If he was convinced, he was going to win this battle I would be right there beside him. I would share his determination and have blind faith in his strength. However, within a few days of arriving at the hospital, he developed tumour lysis.

Normally, I would have been full of questions, but whilst Phil was an inpatient, I took advantage of having the responsibility lifted from me. My job was to be with him every day, bring in anything he wanted and pass messages to family, friends and loved ones. Despite the 65-mile round trip each day I was able to recharge my batteries.

He stayed in hospital for three weeks and was able to go home to rebuild his strength for the second round of treatment.

On the 26th June, Phil’s health had deteriorated, and now he was struggling to stand, eat and walk. On the morning of his haematology clinic appointment, Phil was admitted to ward and told that the chemotherapy had not been successful. Leaving him alone in hospital that night was one of the hardest things I have had to do. We both needed each other; we had always got our strength from one another and now we had a long night apart.

The following morning we were told no more treatment was available. He could have an intensive chemotherapy, but it would probably kill him. We asked how long left he had; a few weeks if the AML killed him, or a week or two if his kidneys continued to fail.

Phil was given the choice of staying in hospital, moving to a hospice or coming home. The choice was simple. He was coming home.

We cried together briefly, but then began to talk. Crying wasn’t going to help; it was wasting our valuable time. We need to try and make sure he could see everyone he wanted to see, and to create some lasting memories together that I could treasure.

That was the beginning of the end. We left hospital later that day and visited both his children. Phil had spent their lifetimes doing all he could to protect them from sadness and now he was giving them news that would break their hearts. We contacted family and friends, invited them to arrange visits. We asked a friend to arrange a dinner party, normally I would have hosted but, I couldn’t cope with that. We arranged a trip to a favourite restaurant.

Most importantly we talked, we discussed exactly what he wanted for his funeral, he was so grateful to Leukaemia Care for the £200 cost of living grant, it had paid for my fuel for the daily trips to the hospital. He asked that instead of flowers at his funeral that I asked for donations in the hope he could raise £200 and give someone else the same help. We decided what I would do with some of his possessions, and he gave me his permission to move on in my life in any way that I wanted, at any pace that I chose.

For the past 36 years we had said ‘I love you’ to each other every day, but then we said it every hour, if not more.

Within a couple of days we had completed the important discussions, we needed them out of the way so we could make the most of the time we had left to just be us. Phil made it clear that when the time came it was his wish to die at home with just me at his side.

Over the next two weeks, Phil was visited by friends and family. For the first time in his life he began to understand how loved he was by so many people. Phil told me that whilst he had no fear of dying, he feared not knowing what if anything came after death. Phil has never had any religious beliefs and had always been sceptical of mine. I asked him if he would consider putting his faith completely in me and sharing my belief that after death he would go to a better place where he could watch over all the people he loved. Phil thought about this, he commented that I was usually right so, yes, he would accept my belief.

On 12th July Phil had a fall. We felt that he was becoming exhausted by the number of visitors so, called a halt to visits whilst he regained his strength. This also gave us a few extra hours a day to have quality time together. Over the next two days Phil became a lot weaker and by Friday 14th July we were speaking to hospice staff about what assistance might be available to us.

Sunday 16th July, Phil had another fall, another ambulance call out. At 4pm that afternoon, Phil lay in his bed, I held his hand and said ‘’I love you’’ he responded with ‘Love you too’ He then took his last breath.

So, that is the end of Phil’s story but, it isn’t. Our lives were so entwined that ‘his story’ became ‘our story.’ Our story didn’t end with his death, the days and weeks that followed were the most difficult of my life.

Our story will never end whilst I have breath in my body, I and all those that loved him will keep Phil alive in our hearts. If one person reading this recognises a rare symptom in themselves or in someone else and takes action, Phil’s journey will have done some good.”

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