My mother, Cath, was diagnosed at the age of 56 with Multiple Myeloma: a rare form of cancer that affects the bones. None of my family knew anything about this weird type of cancer.
We didn’t know what it was like and what it was going to do to my mother’s body and life in general. We freaked out over the word “CANCER” and when we saw the full body bone MRI X-Rays, everyone, including mum went into emotional meltdown about the unknown and the fear of CANCER.
Cath was given ‘about 6 months to 2 years to live’ and I for one am very glad that both Cath’s GP and oncologist declared that because it gave Cath (and us) a race to run…. together. She didn’t want to die and we didn’t want her to either. We all decided to work together and the game plan was as follows:
- Find out what Multiple Myeloma was and how it was being treated in Australia at the time in 2006;
- Find survivors, and find out what symptoms and side effects we were going to deal with;
- Implement a new communication strategy for all of my family members;
- Support Cath and make sure we didn’t suffer in our work, relationships and our own families due to the very real urge to over support her; and
- Support and acknowledge Dad (Bob). He was in charge of this family plan and he had the final say on his wife’s welfare, what happened in their home and how we operated as a family around mum.
Sounds simple enough? The first two were easy. Within a few weeks we had information, people to talk to, hospital support groups and online forums to glean insights and information. We found out who was the best in the country, which patients had lived or were still the longest living and what level of research this particular cancer had going for it. The findings were not very encouraging, still, we needed a benchmark and reality to deal with.
The third part of our game plan was a new way of communicating. Instigated and invented by Bob, we all agreed to play the game of STOP and Start Again.
There would be many times where emotions would over run and destroy conversations and had the real danger of killing a relationship. Someone would get angry, get way too sad, say depressing things or over react to a basic situation.
We are an extraverted family and Bob wanted to ensure that he and his four grown children and their partners created a stable, calm space for Cath to deal with her cancer and most especially for the family to stay together.
He didn’t want anyone saying something or doing something they would regret later. So when any conversation or situation started to go ‘off the rails’ and get out of line or out of hand, anyone (even the person in the middle of it that was causing the drama) could say… STOP, let’s start again.
WOW! Because there was an agreement and understanding of the game, many conversations just stopped dead in their tracks and hugs were given.
I assure you, there were lots of tears, sadness and anger and frustration and craziness in and around Cath and in the family. It just was never allowed to destroy relationships due to the intensity cancer and fear can create.
The fourth strategy was tough. It’s easy to be the martyr and be the one that is looking after the sick/dying and stop paying attention to your own life. The only person that had the right to do that, in our family, in my opinion was Bob.
Over time, he cut back his full time job to part time. Then to casual to then he fully retired so that he could take Cath to chemo, manage the house, deal with palliative home care and take her to hospital many times. His whole life was Cath, and they both wanted to make sure that all of us kids didn’t sacrifice our careers, marriages, families or businesses because she was dying.
What happened though is that we all individually decided what we needed to do, contribute and have in our lives to support Cath as a person, love our mum and also to deal with the fact she was dying.
My sister lived 14 hours’ drive away and she had two small kids. She and her husband agreed that she would drive to Cath and Bob’s house with the kids every 6 weeks to visit, help Dad and let the children get to know their grandmother.
My brother, who lived 2 hours away did many weekend visits to help Dad around the house and talk to mum about his work as she liked problem solving with him.
My other brother lived in the same town as Cath and Bob and would visit, call, drop the kids over and, me, well I lived in a different state and was over 2000 km away.
I decided that I needed to be local, so I moved states and cities and found a house nearby so I could be close. When someone has cancer and they are going to die and you know it, you’ve got to do what’s best for YOU! Don’t change your life or do anything that you think they would like. Nope, that’s not the best way to support someone with cancer.
Your job is to love them AND love yourself. You are going to continue on living and you want to have the best life possible. Your cancer patient wants that for you too.
The last part of the plan was to support Bob and we made him the leader. At work, Dad was the leader. He was amazing at work with his team and customers.
Although, when it came to running a house, washing machine, vacuum cleaner, dealing with doctors, palliative care, a very sick wife that nearly died 3 times, went to the hospice 4 times and took 6 and a half years to die, Bob had very little experience.
All of us, who were less emotionally impacted than Bob by Mum’s cancer and illness, could have very easily commented, criticised, demanded or over-ridden our father’s choices and decision as he may not have (in others’ opinions) been making the best decisions for Cath.
What we didn’t know is that he and Cath talked ALL the time at night when we had all gone (because she slept a lot during the day) and in the mornings when she was in pain and he’d lie next to her holding her gently, so as to not hurt her even more.
They would discuss everything and they were choosing together. It was her life, it was their marriage and it was their journey.
By the time Cath died from her cancer, it was 6 and a half years later. She lived so long because she had a support team around her that helped her in all areas of life.
She managed to score 2 new clinical trial drugs, she was a major contributor to the Cancer Compass Forum when it started online in 2006.
Cath and Bob founded a local cancer support group which is still running 10 years later and all of her children and grandchildren (as well as Bob) are all connected to each other and still talk to one another. Is the dynamic different? Yes. However, we managed to keep the family connected and not have the family bond savaged by the fear and destruction cancer can cause.
So If I can give you one thing from this article, and I hope you take more than just one…. if cancer has come into your world, be ok to change the rules of how you live, how you related to your family, how your family will talk about you and cancer and what’s going on and get support.
As a daughter who had a mother with cancer, I needed support just as much as my mother needed support. Reach out and talk about what’s going on so you can be present to the people you love at all times.
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Jen Harwood – Community Builder
