Updated: Mar 9
Thursday, 20th December 2018: Butterflies, Jitters, Tummy Tumbles
I had excited jitters in my tummy on my wedding day. My stomach churned for our IVF results. I chewed my nails waiting to adopt my children. I had panic attacks putting my mother in a nursing home. I cried when our parents passed away. All these emotions were rolled into one at the thought of telling our friends and family I had Cancer. We didn’t know what Myeloma was. We didn’t know what this meant short or long term. I didn’t know if I was going to die in a month, a year or 10 years. How on earth was I going to tell everyone I had the one thing that we rarely talk about except when someone had been diagnosed, a big black void in between and then they were in remission or died from it. What did this all mean? Did I not pay attention to my predecessors or did we simply not talk about the BIG C?
When is the right time?
Danny and I were challenged as to when the right time was to begin to tell people. The plan was we would wait till the Saturday after my father in laws funeral on the Thursday followed by my hematologist appointment on the Friday. Let’s not cause more stress on the day of the funeral and let’s find out more about this cancer thing on Friday.
Who do we tell?
Let’s make a list of who to tell with the kids at the top of this list, my brother and Danny’s sister next, followed by their families then close friends then the wider community in groups and networks then we’ll go public. Oh let’s not forget our overseas relatives. Anyone else? Is this the same process as someone dying or has passed away – you don’t want to miss or offend anyone? What’s the protocol? Shit!!! This is hard!
Why Would We Plan To Tell People?
Never once did it occur to us that we would go private with this. I lived with my mum’s epilepsy as a taboo subject (because that was how the older generation treated disease). My parents’ withdrawing from being open about the disease prevented my mum from finding a cure beyond daily medication prescribed by a GP. Her lifetime illness was later conquered when I was 18 years old where I could drive her around hospitals for research and medical intervention. I promised myself I was never going to do the same should I ever have to live with a disease. I didn’t with endometriosis, IVF or adoption. In fact, I joined awareness programs, spoke at events and was an advocate that it was OK to talk and educate. I didn’t have a disease to be ashamed of. Of course, at this time, I certainly had no idea that the Myeloma treatment was going to have a few tell tales so there was no way this was going to be kept a secret!
The Plan & Lists- what can possibly go wrong?
Plans in place, lists are flowing. Now you would think with backgrounds in Project Management and Consulting we would have thought about a risk analysis. What if things don’t go to plan? What if we tell third on the list before first and second? What if we fall apart at the funeral or someone close to us can tell something was wrong?
Fail Proof Plan
Well, we didn’t have a back up plan and this is exactly what happened. It was an avalanche of reverse planning with what started with my very close friend Tania, grabbing my arm at the Wake and asking what was wrong . “Nothing. Very sad my father in law passed away”. Who was I kidding? I have known this woman for 18 years – we have wined and dined together, travelled together and adopted in the same years, raising our children together. She knew me like the back of her hand. “No, something else is wrong. Danny was a mess during the eulogy – more than grieving – and you are avoiding everyone at this Wake. What’s going on?“
Deep breathes. What do I do? I can’t go to Danny – he will stress and explode. I’m shaking in my heels. We haven’t had time to plan as to what to say:
“Hi. I have cancer”
“I have something to tell you….I have Myeloma”
“Guess what I have?”
“Any plans this year, mine’s going to be a bit crazy”.
WTF do you say?
I took Tania outside with ”I don’t know where to start”.
“Tell me. It’s OK”, she said, as I started to welt up.
“I have a blood cancer. Myeloma”.
“Shit, I thought you and Danny were breaking up!”
What, no! We chuckled. Stopped. Tears streaming from both of us. “We’ll get through this“, she said as she hugged me. I continued to advise we didn’t really know much else as we were going to the Hematologist the following day. We hugged each other again. “I will be with you all the way. You won’t be alone on this”.
I’ll be with you all the way
My heart was still beating. Now what? I had to tell my brother. How was I going to face him back in the room? The seal had been broken. I walked back in and my sister in law (brother’s wife saw me). “Are you ok?” she asked. “No”. I replied. “Can I speak to you and Tony.”
Outside we went and here I started again. “I have a blood cancer. Myeloma”. Now for anyone who knows my brother, a reaction like, “What the fuck; oh well, get on with it; do what you have to do; What are we going to do about it? You’ll be fine”, is what you would have expected. Instead, I thought he was going to faint. Hands on his head and a big “Fuck” belted out of his mouth was all he could manage with tears rolling out. Mary and I just looked stunned. Hugging each other, all I could manage was, “I’ll be OK. Treatment starts Monday”.
“Of course you will be“. Two time cancer warrior Mary advises me. “You’re not alone. We’re with you all the way”. I still didn’t understand what this meant but I kept hearing it and it was comforting.
By now, Danny had noticed me outside. As I walked in, he grinned and said, “You told your brother”. To which I explained the situation. We agreed we could not tell his sister at the Wake and with this we were going to invite Sonia and my brother in law back to our house. This news could no longer be contained. Danny said he was not coping. All good but now I had one more friend I had to tell who was leaving for Perth and I wouldn’t see her for three weeks. I could not let word get out and not tell her personally. “I have your back darling. As soon as I get back, I’m with you”. She said.
Telling Sonia was going to be difficult. She had just lost her dad and only three years prior we had lost her mum to cancer within six weeks of diagnosis. I had no other detail to tell her other than I had cancer. So back at home that evening, we continued to drink Prosecco and eat Pizza. Danny and I just looked at each other. You go. No, you go. You. No, you. “Um, are you two right?”. Sonia asked.
Here goes. The word “Cancer” was mentioned and “Here we go again”, was all that Sonia could manage. She remained in shock beyond that day for a very long time. Again, the comfort of “we’re here, you’re not alone”, flowed.
Friday, 21 December, 2018: One Day At A Time
We decided to tell our children after we spoke to the Hematologist. With our usual Friday night takeaway, we were nervous but this had to be done. Danny and I had decided that they were to know everything everyone else knew (which wasn’t much really), however, Cancer we realised, had a big impact on many. It was immediately associated to suffering and ultimately, death. It was the grim reaper of any other disease. We needed to tread carefully. Danny and I would look at each other and catch our breathe.
As we finished our meal, we asked the children to remain at the table as we had some news to tell them. We explained that I had a particular cancer in my blood and that our friend, Dr CP, had already set up the treatment to start on Monday. “Will you die?” was the obvious question to be asked. “One day I will. We all will but at this stage, we don’t know how serious I am so we are going to take all the treatment offered and the Dr today said I am young and fit and I have a very good chance of fighting this but you know kids, one day at a time. No one knows where they will be tomorrow.”
“Someone can get hit by a bus!”, was what came out of the babe’s mouth. “Well yes, “anyone” can at any time”. We chuckled.
We advised the kids that we would organise someone from their school to talk to them and I must say, to this day, the schools have not let them down ensuring a counseller is available.
We also had to tell them that New York was off. Their reaction was still getting over the Cancer news but they also agreed that if this was the best thing for me, not to travel, then we can go to New York another time. God Bless them!
“Well the good news in this kids is that Dad has finished his job and will stay home for a while to look after us all”. Danny had another blow with a redundancy of his job that same week his dad passed away and I was diagnosed. The redundancy was planned twelve months ago as he was working on a secondment, however, the plans after taking the redundancy were to renovate, travel, play some golf, chill and then find another job. At this stage, looking after me and the kids was all that we could think about – and as you will find out further into the blogging, this was the biggest and best decision made for all our sake – and sanity.
From Saturday, 22 December, 2018: Telling the rest of the clan
Telling people was not getting easier. Each person dealt with the news in their own way. Shocked, tearful, courageously and some just could not handle what the future held and walked away. I learnt a lot from this journey. I learnt that humans deal with grief in different ways and this taught me not to judge with acceptance and understanding.
Many a time, I felt like I needed to support and reassure the recipient of the news. I confidently would tell the person in front of me that I will be Ok. I would get through this. I had not one negative thought that was challenging me. I had no choice. I was going to take the treatment although I was challenged on shopping the treatment around, i.e., natural vs modern medicine. I didn’t have the head space nor the time. I needed to move as the Myeloma was not good. I needed to destroy this thing called Cancer.
So we continued to either move around and visit people or invite them over to our home to tell them. I text where we couldn’t reach some dear friends but most of all, we needed to move quick because there was going to be a bit of confusion when we were down the coffee shop or tagged on Facebook instead of being in New York!!
Things were moving fast because by now, the phone was running hot with those we told earlier calling to find out what the hematologist advised…….