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Joyce Brawls (daughter)

1935 / Class of '01 / Skin rash / Cyclophosphamide, prednisone, VAD, Velcade / Died 2-27-08

Joyce Brawls was not only my mum, she was also my best friend. In January 2001 she developed a rash all over her body. It looked like she had been scalded with boiling water but I now know this was the first sign of Myeloma compromising her immune system. Her doctor treated her for scabies but when the treatment did not work he thought it may be an allergy. She then developed eczema on her hands and huge blisters on her feet. Finally after 6 months and countless blood tests came the diagnosis and my world fell apart. It was Multiple Myeloma and she had a life expectancy of 3 years.

I decided not to tell her and putting a smile on my face walked out of the office and told her not to worry she had a blood disorder but it was not serious and could be treated. She was terrified of a cancer diagnosis and I kept the secret for a year until a doctor let slip and told her the truth. To my surprise she took the news better than I had anticipated. She did not require any treatment for 2 years but during this time her rash caused her a lot of pain and not knowing what it was made it worse. A diagnosis was finally given: it was pemphigoid bullous, an uncommon skin disease. Thankfully after 3 years the disease spontaneously disappeared although her skin always remained sensitive.

In 2003 she started on cyclophosphimide chemotherapy tablets and prednisone steroids. She had 8 courses of treatment and this brought the para-protein down and sent her into remission. Her consultant then decided to start her on Thalidomide, but after 3 months treatment was stopped because of the peripheral nerve damage she suffered in her hands and feet. After being in remission for 9 months the protein levels began to go up and and in late 2004 she was started on Melphalan chemotherapy tablets and prednisone steroids. In April 2005, she was admitted to hospital with pneumonia but recovered after a week and was sent home.

She finished her latest chemotherapy in October 2005 and for the next 9 months was really well. Then on August 17th 2006 she started vomiting blood and haemorraghing and was rushed to hospital. She underwent abdominal surgery and the diagnosis was that the high dose steroids were to blame. She spent a week in intensive care and 3 weeks in hospital. She lost 3 stone in weight and we were told the Myeloma was also back. She went back on the cyclophosphimide chemotherapy but without the steroids and after 8 months treatment finished. Remission lasted only 3 months, and in August 2007 he doctor decided to start her on the VAD chemotherapy and Velcade. The side effects were horrific and she had a mini-stroke.

Early in September she decided to stop treatment and went home. For the next 5 months her health was better than it had been in years and she looked so healthy. God even gave us one last Christmas together. At the end of January 2008, I finally had to admit to her she was dying as she started to deteriorate rapidly. She was not afraid of dying she was more upset at leaving me and my dad. She started to have constant nosebleeds and became very breathless with anaemia. She told her doctor she wanted to die at home and we turned the dining room into a bedroom. Her doctor was fantastic, arranging for a hospital bed and commode. We also had nurses several times a day and the doctor on call whenever we needed him. She started to lose her appetite and was vomiting a lot and towards the end her eyesight and hearing started to deteriorate as her blood thickened.

On Sunday 24th February she was crying and said she had had enough. Her doctor put her on a morphine pump which made her comatose most of the time and on Tuesday morning the nurses told us to stop giving her liquids. At 4pm on the Wednesday the nurses sent me out of the room while they gave an extra sedative to mum. At 5.50pm her breathing became more shallow and dad and I held her hands. I told her it was ok if she wanted to go, as her mum and dad were waiting for her, and at 6pm she passed peacefully into God's care. I miss her so much and life will never be the same, I will never get over losing her. She was and always will be my best friend.

Love you forever mum xxx


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