“Fabulous Ladies in the Same Boat”

These are the stories of three Fabulous Ladies, Wendy, Bronwyn and Diane, all in the same boat.

Thank you and we appreciate you sharing your tales with us.

First we would like to pay tribute to the great work that Dr Neil Graham did on our behalf. He was also a mentor and an encouraging voice to so many of us.

Wendy
I’m Wendy and I’m 72. I was diagnosed with CLL 15 years ago. Until about 3 years ago my CLL had travelled through life never interrupting my work and play.  Fortunately for me in September 2019 Bronwyn , Diane and I connected through the CLL website.  We got chatting privately and somehow the same boat was launched.

In this time, we’ve sailed through calm waters, and we’ve weathered storms together. We are three very different women leading very different lifestyles, but we have this common thread.  We have somehow found some common themes, such as: the disease doesn’t define who we are; one of us will have the wisdom or information that will solve an issue (like where to get ibrutinib from, at an affordable price), and we’re here for you – you’re not alone.

We share with each other how we’re getting on with life. Diane and Bronny truly inspire me, I don’t have enough words to thank them. We are not in constant contact but we each know that when there’s a challenge, medical or personal, the other two are only a message away. Due to Covid we’ve not had a chance for all three to join together, but one day soon. And that’s when we’ll drink our Moët across our trusty little boat’s stern.

Bronwyn

In April 2019 I was diagnosed with Small Lymphocytic Lymphoma/Chronic Lymphocytic Leukaemia at 46. Mine was an accidental discovery, a total shock. Once I got over my initial shock I wanted to know everything I could about my disease and possible outcomes and treatments. This is when I joined the CLL group. Neil Graham also reached out and chatting to him helped my understanding enormously. I’m not sure who got hold of who, but Wendy and I started privately messaging each other after seeing comments on the CLL page. Very shortly afterwards we started chatting to Diane as well. I then decided we should all chat at the same time and set up a Facebook messenger group called ‘fabulous ladies in the same boat’.

I was working full time in the Air Force when diagnosed and had one child still in the nest. Wendy and Diane are considerably older than me, but that didn’t matter at all, we all had CLL. Our experience with the disease over the last few years has been very different, so sharing has been helpful. For example, Wendy and I are on ibrutinib, and Diane is on watch and wait. Sourcing ibrutinib for an affordable price is something Diane helped Wendy with extensively, so when I was making decisions later on, the leg work had already been done. Wendy got hold of me when she was in Auckland back in 2020 and suggested we catch up. I was keen to meet the person I had been talking with a lot at the time, and we got along famously.

Meanwhile Diane and I had established that she had taught with my Dad at Aka Aka School – two degrees of separation in NZ. Wendy and Diane managed to have a weekend together but unfortunately due to Covid and life, the three of us haven’t been together in the same place yet. Finally, Diane and I met in person in March last year when she was on a road trip up North, it was like we knew each other already, it was lovely to see her.

Wendy, Diane, and I didn’t only share our CLL stories we shared our life stories and became friends. They were there for me over the most stressful time, initial diagnosis, they understood my fear and emotions more than family and friends. I am very thankful for the connection we made and would encourage others to do the same.

Diane

And I am Diane. I was diagnosed four years ago at 72. My WBC and ALCs are much higher than my other shipmates have ever been I think (sitting at around 83.5 WBC right now), but I keep really  good health with none of the accompanying symptoms as yet. I get tired from time to time but definitely wouldn’t call it fatigue (probably just old age!)  I take a keen interest in this damned disease we have and the most recent developments in treatment. I use Health Unlocked and Patient Power to helpme  and any other authentic sites I can to stay as informed as I can. I am so hoping that I can hold out until the drugs that are readily available in most developed countries are accessible here in NZ.

I am concerned that our most avid advocate Neil Graham is not with us anymore. We ‘fabulous ladies in the same boat’ would never have met if it hadn’t been for him.

Interestingly we have all made significant lifestyle changes since we met. It was great to meet up in ‘real life’ with Wendy and her partner Graham when they came to Nelson (I think they have since moved in together). I have moved from Nelson to Christchurch to be closer to family, and Bronny. has left the Air Force and moved to a beautiful lifestyle block in Kerikeri with her partner Scott. I am not sure what relevance that has to us all having CLL but maybe it means that we are all on the same path and trying to make the most of life!

At the beginning when we were all trying to ‘keep our heads above water ‘ with our new diagnoses we supported each other. Now that we have come to terms with our condition and know more about it we are not so reliant but know that we are always there for each other.

And as Wendy said, ‘One day we will all meet together and share that Moët!’