I am fifty years old, have three beautiful daughters age 27, 23 & 22.
I live on a farm on lower Eyre Peninsula, South Australia, with my husband Keith.
After a frustrating couple of years of misdiagnosis and suggestions of hypochondria I was diagnosed with Multiple Myeloma and Amyloidosis in August 2003. My liver was the most severely affected and had gown rapidly so that it extended down into my pelvic area, giving me the appearance of being 9 months pregnant. To a lesser degree my kidneys had suffered and so it was decided after a bone marrow biopsy confirmed the Multiple Myeloma, the least dangerous procedure to confirm Amyloidosis was a kidney biopsy.
Being 600kms away from treatment and specialists has not been easy at times, but we are only a bit over an hour away from the Port Lincoln airport, so I have become a very seasoned flyer.
Initially my specialist was very reluctant to be aggressive with treatment as I was considered to be in advanced stages of the disease and an estimated survival time was 6 months at best. I was put on oral chemotherapy and sent home to spend the valuable short months with my family.
After a couple of weeks it was obvious that the chemo was just making me sicker and I decided if that was all they had to offer, given the time frame I would rather have nothing.
I made the trip to my nearest and most trusted G.P. (45 kms away) to discuss this with him.
He encouraged me to make the trip back to Adelaide for a second opinion and maybe to â€śpush a bitâ€ť and reconsider my options. I will be forever grateful to him for his advice, support and encouragement.
The result was that I made the decision to have the recommended 4 x 3 weekly cycles of VAD, followed by a stem cell harvest, and then the transplant.
I was reasonably lucky with the early treatment and didnâ€™t feel too bad, the dexamethasone helped with fatigue and I prepared for the transplant in a very positive manner.
Then reality hit â€¦I had been an excellent stem cell producer and so it was decided to â€śhit me twiceâ€ť.
I had my first re-infusion in March 2004, and the second in early July 2004.
Hospital stays were kept to an absolute minimum and the rest of my time was spent living with my daughter 10 minutes from the hospital.
We made daily trips back there during the time I was neutrapenic and then stretched it to every second day for other blood checks etc.
As soon as I was able (about a month) I travelled home to the farm to recuperate.
Although I had been lucky and only suffered the usual pains, bone shivers, rashes, constipation, then horrific diarrhoea, a couple of minor infections, nausea and fatigue, going back to Adelaide to have my second stem cell re-infusion only 3 short months after the first was one of the hardest things I have ever done.
I was exhausted for a very long time and felt very frustrated both by this and my lack of independence which I had guarded very fiercely all of my life.
I found myself relying on friends and family to clean my house, cook my food, drive me wherever I had to go in fact everything I needed was dealt with by others. Looking back this was a small price to pay, but at the time I found it more frustrating than the actual treatment.
I have been asked the question- how long did it take you to recover- the answer is not easy I donâ€™t know how much of what I feel now is treatment related and how much is disease related, but I donâ€™t think one ever fully recovers from such aggressive treatment and at times the itches, headaches, bladder problems etc still come back to haunt me, but again it is a small price to pay.
I lead a relatively normal life and still do everything I did before, albeit a lot slower now.
My only treatment is a â€ťmaintenanceâ€ť 1 mg Dexamethasone every second day, which helps with my energy level and apparently is beneficial in the control of my disease as well.
I return to Adelaide every three months for a check-up with my specialist and if anything arises in between those visits I see my G.P.
From the onset I have had the most supportive and loving group of family and friends one could ever wish for.
Two of our girls were living in Adelaide during my treatment and the other one came whenever she could get time off work.
I was never alone at the hospital and would often have at least two of my girls with me all day.
Keith would come over for the initial treatment and then return to the farm to catch up on the work backlog when he was comfortable doing so.
I have absolutely no doubt that it was this support that got me through the difficult days, I will be forever grateful for this and could not have got here without it.
Both my Specialist and the other medical staff who cared for me were amazing and very knowledgeable even chemo nurses went out of their way to find out what they could about amyloidosis.
I am not cured and the little things remind me I am still deteriorating, but at a much slower rate than pre-treatment.
This is not a journey I would have chosen, but it has been life changing and in many ways for the better. Both my family and I â€śsmell the rosesâ€ť
And cherish every day together.
I refuse to be negative and when those thoughts creep in on the bad days
I remind myself that I owe it to every single person who has lost their life to this hideous disease to fight as long and as hard as I can.
I am alive and happy 32 months after diagnosis and for now that is enough.