Hospice: Midlands Hospice
Name of patient: John Matthees
Written by: Midlands Hospice
Diagnosis: Lambert Eaton Myasthenic Syndrome
Message: Hospices are often misunderstood as buildings where patients spend their final days. Our members actually focus on enhancing quality of life and 90% of the care they provide is home-based.
Joy in the face of a life-threatening diagnosis
Midlands Hospice’s journey with the Matthees has been and continues to be one of hope – not necessarily in the hope of being cured, but that hope can still exist even in the face of a life- threatening diagnosis. The hope of finding peace and acceptance, making the most of the time left with those that one cares most about, and that medical advancements and breakthroughs could potentially extend life. It’s this hope that can provide a sense of comfort and strength during the challenges of illness. Our palliative care journey started on the evening of 24 June 2021. I still remember vividly receiving the message from Colleen – its effect punched me in my stomach, as I was yet again reminded of how much I took my life and circumstances for granted…it could all change in a flash!
John was about to be discharged from hospital after 43 days of recouperation and extensive tests. He was coming home unable to walk, not able to talk, and needing help with all the activities of daily living. He had been diagnosed with LEMS (Lambert Eaton Myasthenic Syndrome) – a very rare condition that affects the transmission sent from the nerves to the muscles. The muscles are unable to contract properly which causes muscle weakness and a whole range of other symptoms. This rare disease is triggered by a specific lung cancer diagnosis. Colleen sounded overwhelmed and frightened about what lay ahead. “This is all new to me… I never thought John would get sick like this, he was very healthy and energetic…he is only 52!”
John and Colleen used to have their own small business doing general maintenance jobs. He had tried to ignore weakness in his arms and legs for 2 months, until he suddenly became breathless and struggled to swallow. Their work came to a grinding halt due to John’s incapacity and Colleen needing to provide full time care. Grey’s Neurology and Oncology worked together to manage this complicated disease, and we all got excited with him as his speech and mobility slowly improved with the odd session from a DOH speech therapist and physiotherapist. Whilst his cancer was “under control” his LEMS symptoms improved with Colleen’s determination to keep pushing John with his exercises. Unfortunately, after almost a year of improvements, John began to lose mobility again, speech became more difficult and other worrying symptoms flared up. It was soul destroying to see a positive couple suddenly become so burdened by the reality of John’s cancer diagnosis. They had to move house to afford a lower rent and needed to sell a lot of their belongings to get by. Despite their circumstances, John expressed his appreciation for Colleen at every visit, and it was a delight to see her positive spirit buoying him day after day.
On 26 July 2022 whilst visiting and trying to provide the best possible support to help this couple at what seemed like the most dismal time for them, Colleen asked John if she could share the news…he had asked her to marry him! There were no rings or fairy-tale engagement photos. Their plan had been to wait until John could stand and walk again. It had become evident that their love for each other was stronger now than ever before, regardless of whether John could stand at the altar – they were ready to commit themselves formally and legally to each other. Colleen had found a dress, they just needed to arrange the day. I was thrilled for them but in all honesty, wondered if it was going to be possible. This was confirmed at the next visit – they had hit a brick wall, physically and financially. We discussed the disappointment at an IDT meeting at Hospice and our clinical manager started to make some enquiries. Within hours, an attorney from Tatham Wilkes Attorneys, had arranged for the magistrate to conduct the marriage in a personal capacity, the ante nuptial contract was offered to be written up ex-gratia and the marriage date was set. John and Colleen were married on 1st October 2022. When you ask them what the highlight of their wedding day was? John got up out of his wheelchair and stood up straight to kiss his beautiful bride!
It is the first time that a marriage has happened like this in our organization. The joy that it has brought not only to John and Colleen but to all of us involved in their care has been an incredibly heart-warming experience. Even amid a terminal illness, one can still live their best life!
“John and I would like from the bottom of our hearts to thank Hospice, the magistrate, and the lawyer for making it possible for us both. Miracles do happen. There are caring people out there. We tend to always think we are alone, but we are not. Never let anything stop you from going for your dreams, especially illness. Anything is possible. Thank you.”- Colleen Matthee