I will always remember that night in late October in 1996.
My wife Roslyn had been going to a string of doctors complaining of rib pains for nearly 15 months and had just about every test possible. The doctors were acting as if she was imagining the pain, but I knew it was real as we could be out having a casual walk and her hand would go across her chest. We went back to this physician we knew and Ros trusted and explained that this pain was real, not imagined. He then decided to do another set of blood tests and some x-rays. On the day Ros was having the x-rays the doctor rang me to tell Ros that he had changed her chest x-rays to a full skeletal survey and that he would see us that night. He then told us that the Calcium reading had increased and that she was to see a haematologist to get confirmation whether she had hyper-parathyroidism or myeloma.
At this stage I was working as a retail pharmacist full time and decided that there was no way I could keep on working and become a carer. I admit I was a chauvinist, I used to come home from work and dinner was on the table, dirty clothes thrown in the hamper magically appeared washed, ironed and back in my wardrobe. Well this all changed. Ros went into a very black place for a couple of years while she went through chemo, a stem cell transplant and then monthly Aredia and then Zometa for about 10 years. As everyone knows, this resulted in monthly visits to the hospital and we did not just select the nearest Hospital but one on the other side of city, usually a 45 minute trip then to find parking.
During the early time I had contacted the Cancer Council of Victoria looking for a Myeloma support group only to be told that there was nothing like this. About the same time Robert Moran had done the same after his wife Glenys was also diagnosed with myeloma. The Support group co-ordinator at the Cancer Council, Pat Dobson, brought us together at a meeting and from this the Myeloma Foundation began.
Prior to Ros’ diagnosis we had always talked that I would retire and we would travel, but now Ros does not have the confidence to travel far from home, I can get her as far away as Cairns but this is also chasing the warmth especially during Melbourne’s winter. About eight years ago she gave me “permission” to travel by myself and initially my trips took me camping in the Kimberlies, up the centre of Australia and to the top of Cape York and Thursday Island. The following year I was due to go to Israel and 7 days before I was to leave she fell on our front steps and fractured her femur, the major bone in the thigh. Thanks to insurance she had surgery and then extensive rehab to learn how to walk properly again.
Ros is keen to live and enjoy her life now she has achieved her wish she made when she was diagnosed: to see both our children married and to have grandchildren. We now have six beautiful grandchildren who are the best medicine you can have. Helping with them, doing folk dancing upto four times a week and still working two days a week keeps Ros pretty busy.
As I am writing this I am remembering all sorts of things that happened along the way as this has been a real journey. We have learnt a lot about ourselves, our relationship and about our friends and so called friends. We have met a lot of fabulous new friends and we have grown through this process. We have different values now and often discuss how many of our friends have no idea of what Ros has been through or where she is at now. I could write a book about our experiences and the people we have met along the way.
Thankfully, Ros has not had any myeloma treatments since her transplant and though has a few other unrelated problems, is in pretty good health now but we still regularly visit her haematologist about every four or so months. Thinking back to 18 years ago there was very little in the way of treatments available and the prognosis was very poor. Now there are three major new products currently available and there are a number more being trialled and look like they will add to the arsenal of treatments available to our doctors.
I am now heading off to Scandinavia and Ireland next week with my sister. This is the fourth trip I have now done with her into different regions China, Cuba and Morocco. I am starting to get excited about this venture.
I know Ros will be fine as our daughter lives next door and I am on a promise to phone home every day. Thanks to Facetime, wifi and Iphones.
– Brian R.