Photo Left to Right: Ellen, James, Marina, Jean & Jim.
Jim Reid, husband of Ellen, and father of Jean & James, was born in Western Australia in 1935. Jimâ€™s father died in a car accident when he was 12 years old, with a mother who was already in poor health, so life stresses began early in his life.
Around this time, the British government had several nuclear tests on mainland Australia, and offshore Western Australia, but no radioactivity was reported in the cities. Some have speculated that atomic radiation may be a factor causing serious long term disease, and we have wondered about this over the years.
Jim trained as a school teacher in Perth, then taught as a primary school teacher for 3 years in Moora. He left teaching and then worked fulltime with the YMCA for 7 years, 3 years in Perth, and 4 years in Hobart.
He returned to teaching, and met me in Esperance, where I was employed as a pharmacy manager. We married in 1968. When we married I noticed that Jim had sensitive nerves in his hands and feet. He was also experiencing back pain, and a slipped disc was diagnosed.
Jim's health was never robust, and total exhaustion followed any activity like digging in the garden, or lifting. Most days he would need a nap after school. He would come home, have a snack and a nap, and a meal, and return to work to prepare the next day's lessons. He was always tired. School holidays were spent with Jim doing extra work for the next yearâ€™s class. He was very conscientious, and seriously dedicated to teaching, especially Remedial Reading. He became a Deputy Headmaster in 1979, which increased his responsibilities.
Jim had continual health problems. He had many skin problems, like dry skin, dandruff, dry eyes, shaving rash. He used moisturizing creams continually, and low ph skin cleansers, and water softeners. He saw many dermatologists over the years. He took all sorts of vitamin and mineral supplements.
He had many allergies that affected his nose, lungs, and gastric system. He had severe hay fever in the Spring, a "teacher's cough", and continually used nasal drops for his rhinitis. He saw allergy specialists, and had de-sensitizing injections. He took many anti-histamines.
His gastric troubles went all the way from his mouth, with ulcers, and a tongue that swelled now and then, to his rectum. He often had trouble swallowing food, so had to eat slowly, and drink fluids to wash it down. He had a gastric reflux problem, so we had to put bricks under the top of the bed to elevate the mattress. He took antacid tablets, and "Stemetil" tablets for nausea. He had an irritable bowel, which fluctuated between bouts of constipation and diarrhoea. He had his appendix removed in 1982, but this did not stop the problems. He took laxatives, and anti-diarrhoeal preparations. He had haemorrhoids develop. He saw gastro-enterologists. He had barium swallows and enemas, and endoscopies. He tried many different diets, and lactose intolerance was diagnosed. Coeliac disease was also suspected. Food fads had to be tried and much food was wasted over the years. Soy milk was one of the best products he ever tried.
Jimâ€™s back pain grew progressively worse over the years. It was always diagnosed as a pinched nerve or slipped disc. X-rays were taken. Physiotherapists were visited many times. Neurologists were visited. He took many pain killers and anti-inflammatory drugs, but had to be careful because of their effect on his gastric system. He saw a rheumatologist. He could not stand still for long, nor sit in one chair for long.
Jim retired early, at 59, from teaching, because all of the above were proving too hard to cope with. The doctors kept saying "You'll just have to learn to live with it.", and he would ask them "How?" One problem was that as a teacher in Western Australia, the education department moved teachers around, as they had a vast country area to service, and male teachers would be moved to country areas when they sought promotion. This meant that the general practitioners were changed every few years. But even then, when Jim stayed with one doctor for several years, they never looked at the collection of symptoms as an overall syndrome. Some treated him as though he was a hypochondriac. They regarded me as neurotic for being concerned with his health.
All of this affected our married life, emotionally, physically and financially. Jim could never find a comfortable chair to sit in, and we were continually changing lounge chairs. Beds were another problem, as he could not bear pressure against his body, so twin beds were needed, pushed together. Medicines and other medical supports were needed. Long term planning and travel were limited.
Part of Jim's health problem was sensitivity to weather conditions. We lived in Perth, a city where the summer heat could reach 46C. Our home had to be air-conditioned for 6 months of the year, and this cost a lot. Water cooled air-conditioning would have been cheaper, but the humidity was another problem. Jim used to perspire very heavily at night. We decided to move to England in 1996, as our adult children were living there. Jim's health improved with the cooler climate, but deteriorated under the National Health Scheme. We lived in an upstairs flat, and going up and down stairs became very difficult. The food he liked best (high protein) was not cheaply available in the UK, so his gastric problems increased.
We returned to Australia, but moved to a cooler area, Melbourne, in late 1999. Jim became weaker, and began to withdraw inside himself. He developed a tremor, and lost a lot of weight, and his leg muscles were wasting. He couldn't stand to be touched. His toes in particular were very painful.
Nobody could please him. I considered leaving him, because he was so difficult to live with, but in my heart I felt there was something seriously wrong. He was sleeping for 20 hours a day, and was thoroughly miserable.
I trawled the "Merck Manual" textbook looking for collections of symptoms that covered Jim's problems. The physiotherapist thought that he might have Parkinson's disease, or Motor Neurone Disease, because of the tremor. I asked his GP to refer Jim to a neurologist again, and he told me I was wrong. -His problems were not neurological. But he did refer him to a rheumatologist, who immediately called in a neurologist. By this time, after waiting months for an appointment, Jim needed a walking frame, as he could barely stand.
Together the specialist doctors decided to do some tests, including Bence Jones Protein test, and this proved positive. That was an indicator that Jim had a serious blood condition.
Jim was admitted to The Alfred hospital, a large, public, teaching hospital, in Melbourne. He was an in-patient for 6 weeks, while they tried to work out what was wrong. Eventually AL (Primary) Amyloidosis was diagnosed, because of the amyloid that was found in biopsies of his duodenal ulcer, and a mediastinal (chest) lymph node. Lesions were noted in his spine, but their cause was unknown. It was assumed that Jim had a Myeloma, bone marrow problem, as that is the normal cause of AL Amyloidosis, but this diagnosis overlooked another problem, drenching night sweats, which pointed towards a b-cell lymphoma.
Treatment for the duodenal ulcer was started immediately with Omeprazole tablets, and then the usual treatment for Myeloma/amyloidosis, a medium-dose Melphalan and Prednisolone oral regime, was started. Jim's age (66) and physical condition were seen as barriers to stronger therapy. His health started to improve immediately. He began to walk again, and his "sensitivity" decreased. He re-gained a lot of the weight he had lost.
After he had had 5 cycles of chemotherapy, two attempts were made to collected Stem Cells, for a transplant, but insufficient were collected. We accepted that all that could be done had been done. Jim's free light chains that form the amyloid were being monitored every 6 weeks, and while they remained fairly constant his health was stable.
After a year without chemotherapy Jim's health began deteriorating rapidly. He was losing weight again, his pain increased, and his walking was limited. We agreed with the haematologist's plan to try a new treatment, high dose Dexamethasone tablets. Jim had 4 cycles of that and he deteriorated further. It made him feel terrible. His free light chain levels were increasing, as well as his inflammatory markers, CRP, and ESR, and his liver function tests showed liver problems. His pain was so bad that we saw a Palliative Care doctor in November 2003.
We had been in contact with Prof. Philip Hawkins at the National Amyloidosis Centre in London since Jim's diagnosis in October 2001, so we sent him copies of all Jim's latest tests. He suggested that Jim might have a rare form of Primary Amyloidosis that is caused by a lymphoproliferative disorder. The haematologist at The Alfred, Dr Merrole Cole-Sinclair, followed his advice, and Jim was admitted to hospital for further tests.
In January 2004 Jim was diagnosed with a Non-Hodgkin's Lymphoma (NHL), which was believed to have caused his Primary Amyloidosis. Treatment was commenced with Rituximab ("Mabthera") plus Cyclophosphamide, Adriamycin and Prednisolone. He immediately began to improve again. However, after 3 cycles, he developed breathlessness and atrial fibrillation. Cardiac amyloid was diagnosed, so the Adriamycin was dropped. There were 2 more cycles of R+C+P, but the complete course was not given because of the heart problems.
Jim had regular injections of "Aredia" for the lesions in his spine, (â€śZometaâ€ť caused rigors) and "Intragram" for his hypogammaglobulinaemia. Jim's health improved considerably. His free light chains dropped by three quarters. His inflammatory markers decreased considerably. His liver function tests returned to normal. He only rarely needed a wheelchair. His pain disappeared! He no longer needed any analgesics! The neurologist said that the motor neurones in Jimâ€™s legs and feet were functioning normally again!
Jim was in remission for 6 months, although his blood tests started showing changes. Jim was retested for the lymphoma, and he started chemotherapy again in December 2004. Jim suffered side effects with the chemotherapy, and he died suddenly on 24th March 2005, just short of his 70th birthday. Heâ€™d endured 20 cycles of chemotherapy.
Jim had agreed on the necessity for a Post Mortem examination, so that his doctors could know just what had been causing so much trouble. If anyone needs a copy, contact us.
Jim is buried in the same grave as his great-grandfather, George William Knight Erskine, in the Springvale Necropolis Cemetery. We have subsequently learnt that Jim, and his great-grandfather have descended from King Alfred the Great of England, and other royal families of Europe. He never knew of his rich heritage! He would have laughed!
We are very grateful to the doctors and staff at The Alfred for their wonderful help. We are also grateful to the Australian government which provided almost free treatment for Jim, as an old-age Pensioner. We did not have to worry at all about hospital or chemotherapy costs, as patients do in other countries.
We are also grateful to the overseas doctors, especially Philip Hawkins of the National Amyloidosis Centre in London, and Ray Comenzo of the Memorial Sloan Kettering Cancer Clinic in New York, for their advice.
Our main support through the years has been our belief in God, and the truth in the Bible. Jim was confident that things would be sorted out eventually and they have been! When all was very bleak in November 2003 we followed the instruction in James chapter 5, and then advice was received from overseas to try a different tactic.
Jim's Amyloidosis was one of the rarest forms, and yet it was diagnosed, and treated, and he had good quality of life during his remissions. He died in his own bed with his wife at his side, as he wished. All praise to our Heavenly Father for these blessings!
If you wish to contact Ellen or Jean, please write to us atÂ
or phone 03 9001 9312.
We live inÂ St Arnaud,Â Victoria, Australia.