Becoming a grandparent alongside myeloma

Written by Ann Moir, NSW

In 2021 I was recently retired, coasting along through life, volunteering and excitedly awaiting the birth of our first grandchild. I was enjoying my retirement activities with my husband, David. There was, however, something niggling, perhaps I was ignoring symptoms. My sudden dislike for stairs and hills and dizziness after swimming- I was thinking it was due to lack of ability. I had excessive thirst and tiredness, even after a goodnight of sleeping. I finally visited my GP, asking him ‘Is this what old age feels like?’. He sent me for a blood test and that’s when I learnt I had myeloma.

My GP was thorough and followed up on my referral to the haematologist. I had recently heard of myeloma due to a friend’s diagnosis but was ignorant of its implications. I remember feeling like I had been slapped, due to the shock of diagnosis. I was healthy, I exercised and ate well and was going to be a granny.

My first ever cycle of treatment was given to me on the day that my first granddaughter was born – my granddaughter’s birth felt like a gift on a hard day. I received first line (standard of care) treatment with Revlimid (lenalidomide), Velcade (bortezomib) and Dexamethasone also known as ‘VRD’. It felt like it all began very quickly.

I was then scheduled for an autologous stem cell transplant as an outpatient, but COVID delayed this by six months, as hospitals needed to prioritise urgent care. For me the transplant, had its ups and downs, including a trip back to hospital after my temperature reached over 38°C. I still experience a few physical setbacks, occasional hand cramps, neuropathy in my feet, nausea and some tiredness. What helps me through these times is exercise, rest and some anti-nausea medications. I always make sure when I see my haematologist that I report any side effects I am experiencing and how I am feeling – a diary helps me keep track. I feel very positive about the future with the great support from my local hospital and outreach team. All of my family have been so supportive, and I feel their encouragement every day.

My life does feel like it revolves around treatment schedules, but I enjoy so many other aspects of life. I am lucky to enjoy cooking for my family and of course eating! My husband and I walk most days, we really appreciate the outdoors. I do strength exercises and qigong (a type of Tai Chi) and love reading books. I love spending time with my grandchildren and family. Timed around treatment, we plan and attend activities we enjoy including concerts, short holidays and I participate in choir when I feel up to it. I believe it is important for me not to be consumed by myeloma and for myself, David and all my family members, to keep up interests and activities.

Myeloma Australia’s yearly walk ‘My Greatest Walk’ is a great way to engage with others going through a similar journey- I look forward to it each year. I like to focus on the positives of my situation- I am grateful to have treatment close to my home, fantastic medical support and to be surrounded by family and friends. I have found Myeloma Australia’s resources including online support groups, have been helping with my understanding of myeloma and sharing other people’s experiences.

I am currently on a second line treatment Darzalex (daratumumab), Velcade and Dexamethasone also known as ‘DVD’. I have a weekly filgrastim injection to boost my neutrophils (a type of white blood cell). I feel very fortunate that I am able to access these treatments.

I am now a proud grandmother of Claire, John and another granddaughter who is due to arrive at the end of this year. It is a privilege to be a grandparent, and mine are special gifts. They bring such joy in the smallest things, like spying lady beetles, or colourful birds or sharing a moment of spotting a beautiful rainbow. They also make me laugh; being silly and pretending. Watching them grow is so amazing and my biggest wish is to see them grow up.