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Surviving leukaemia

Grandparents and children sharing tips and stories

From Geoff Rondel (Ven Rinchen Choesang)

I feel particularly blessed. When I was first told of my prognosis in 1974, I was coolly told by a young trainee intern that I had a 50% chance of being alive in 12 months and a 10% chance of being alive in 5 years - I am glad I exceeded those grim expectations! He was at least kind enough to tell me that a lot of progress was being made in leukaemia treatments and that things were looking more hopeful! It is pleasing to note that things aren't so grim in 2004, but I would much rather read a 100% survival rate, especially for those of you whose loved ones are currently gravely ill.

I was extremely lucky - once I went into remission I stayed there. One minor setback was fixed with a change of chemo. I had some awful symptoms from both my illness and the treatment, but on visiting a cancer ward to see a neighbour who was in for cancer treatment, I felt guilty being in hospital - some of them were "really" sick!

I think what saved me was a combination of a (then new) laminar airflow bed that kept infections away from me; the chemo; the radiotherapy; a strong belief that life was better than death, so therefore I should stay alive; but most of all - i) a most fabulous Haematologist; ii) the most wonderful support from my parents and my wider family (I once had 20 friends and relatives aound my bed at one time - the hospital staff must have really thought I was going to die, 'cos the rule was only four visitors at a time!).

Unbeknownst to me, my Mum had organised to have my name included on various prayer circles. An aunt and uncle even organised for an Anglican priest to visit me. As I considered myself to be an atheist at the time, this was all a bit odd to me. Three years ago I was ordained as a monk in the Tibetan Buddhist tradition and now have strong interfaith links with a number of Christian friends both here in Australia and in the land of my birth - NZ. While my tradition does not have a creator being, I believe any religion can be of help in times of suffering, such as cancer diagnosis and treatment. Non-denominational pastoral care can also be of great benefit. For those with no real spiritual beliefs, it is really important to have someone at hand to talk to about their hopes and fears - preferably someone not too close to the patient. My Mum didn't and once I was over my crisis times she suffered a nervous breakdown. The importance of the human element in both healing and dealing with grief can't be overstated - we should never be afraid, or too proud, to ask for help in these circumstances.

Not only have I managed to live for 30 years since my original diagnosis, I have a delightful 22 year old daughter. Some years ago now, I heard that the only other inpatient with ALL at the time I was hospitalised who had also survived, was happily married and had children. As we were two of the very few 'good survivor stories' at a time that there weren't many to be found, perhaps reading this will give you some hope for those you love who are facing the odds that we faced.

A few years ago, I had the good fortune to speak to the Haematologist who had treated me on the phone when in NZ. He was well renowned world-wide and had the most delightful, caring and warm 'bedside manner'. He was also (thankfully) always honest about my prognosis and likely treatment symptoms. The opportunity to thank him again for giving me life was a real blessing. He has a place in my heart forever.

For those of you who read this, I hope you find some hope in my words if you are searching for hope. My theory is that the most important thing for supporting families is to do their best to provide a warm and caring environment for the patient AND for themselves. Any warmth amd love you give is healing to the patient and to those around you, even when you are not in their presence. It is also a good time to put aside old differences and frustrations.

Sometimes, survival doesn't happen and we have to allow ourselves time to grieve. Having recently lost a close ex-partner to cancer, I realised how important it is to continue supporting each other after the loss of a loved one. It also helps to remember how blessed we were to share our lives with them. Bodies die, but our love never does!

Warm wishes and healing blessings to all who face serious illness and those who care for them. May all beings be well and happy.

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Updated: 28 September 2009