By Roslyn Rosengarten

5-minute read

Towards the end of October 1996, about the time of my 50th birthday, after 15 months of visiting doctors complaining of intermittent rib pains, I was told I had myeloma. Not understanding what this was and driven by good meaning friends I went for second opinions and even went to a naturopath who claimed he could cure the cancer. One haematologist told me to get my affairs in order as I only had 2 to 3 years.

I was referred to a haematologist at a local hospital who started me on chemotherapy.

In early 1997, the International Myeloma Foundation (IMF) ran a patient seminar in Sydney which my husband Brian and I attended. We learnt about myeloma and met some others going through the same experience.

With the knowledge gained from the seminar and as the chemotherapy was not having great effects, I requested a referral to specialists that could do an autologous stem cell transplant. At this time, stem cell transplants were only being done at 2 or 3 hospitals in Melbourne. We met with a haematologist at the Royal Melbourne Hospital and started the processes of stem cell collection and then the transplant.

I celebrated my 51st birthday by having my stem cell transplant in hospital. The candle on my cake set off an alarm and the nurses came running in. I was in the transplant ward for about 3 weeks until they let me return home.

This then started the regular visits to the hospital for checkups, starting every 2 days then the period between slowly extended. I still see the same doctor every 6 months and have my blood checked every 3 months.

One of the early highlights was our 4 weekly visits to the day ward for my bisphosphonate treatments to help strengthen my bones. We timed our visits with another two people going through the same treatment and even celebrated one Christmas with champagne in the day ward.

I was in a very dark space for about 4 years, not wanting to buy clothes or do any repairs at our home as I did not expect to be around long enough to enjoy them. I found the initial haematologist I saw was quite negative and didn’t provide me with much hope.

My current haematologist who I saw for my stem cell transplant all those years ago was positive and reassured me that there were treatments available that could help. This provided me with hope and along with support from my family, this brought me out of that dark place.

I can remember saying that I just wanted to see my two children get married. Having something to look forward was important. My children are now both married and I have 6 beautiful grandchildren.

There have been several hiccups along the way, broken bones from falls, various surgeries related to myeloma bone disease (including an elbow replacement and vertebroplasty), and a muscle weakening condition. I see a physiotherapist and attend regular exercise sessions which has helped me maintain strength.

I am managed by a great team of doctors who monitor my myeloma levels on a regular basis. My paraprotein has never come down to zero, but has stayed stable since my stem cell transplant, without any further treatment. My big hope is that none of the doctors will retire soon as I have been seeing them for a very long time and I have great faith in them all.

I also see a specialised dentist for osteonecrosis of the jaw (ONJ) a rare complication of bisphosphonate therapy, an endocrinologist (hormone doctor) for para-thyroid issues and a gastroenterologist (gut doctor) for bowel issues.

I am very lucky to have great family support plus a large circle of friends. I love spending time with my grandchildren and when I can, I regularly do folk dancing and walk as much as possible.

I prefer not to travel outside of Australia and so have regularly travelled to Queensland chasing the sunshine or short trips around Victora. As my husband, Brian, likes to travel he’s been with his sister on several trips overseas.

When I was first diagnosed, there was no support for people impacted by myeloma, no awareness of this cancer, no information to access and no opportunities to connect with others affected. After the seminar in Sydney in 1998, we contacted the Cancer Council in Victoria, and we were connected with two other couples impacted by myeloma in Victoria. Between Brian and I and the two other couples, Bob and Glenys Moran and Donald and Judith Brown we set out to change this.

We came together to encourage the government, universities, scientists and the public to dedicate time and money towards research into myeloma and support for those impacted. We formed Myeloma Victora, which then joined groups in other states to become what is known today as Myeloma Australia.

I am proud to see how the awareness, support, research and treatment options have changed dramatically since I was diagnosed in 1996.

This October, I will be celebrating my 80th birthday, 30 years since my diagnosis and 58 years married. After being told I only had 2-3 years to live and there wasn’t much to be done, I’m proud to say I proved that wrong!