I can quite confidently say that the month after my diagnosis was the worst time of my life. Blessedly it is now largely a blur. There are some very clear memories- things which seemed like they happened yesterday- but most of it is missing from my memory. Mostly I remember the feelings from that time – terror and grief punctuated with disbelief. I sort of felt like I was tiptoeing around the edges of my life – I couldn’t participate or engage properly and I just felt so frightened.
Getting a diagnosis is a bit like starting a new job. A new job you didn’t want, that you’re under-qualified for and from which you cannot go home. There is so much to learn at a point where you feel least able to pick up and run with new information. There are big decisions to make and often you are making them pretty blind.
Looking back I’m reasonably happy with how we navigated my diagnosis. So here is my best advice…
From the word go I was very clear that I didn’t want to be given a timeframe. I asked my father to bring this up early in our first meeting with the Peter Mac team and they were very respectful of this – every one of them. Their approach was to set a treatment protocol and to see how I responded. I truly believe that being told I would die within months (as was likely) would have impacted me terribly – something I have seen happen to others many times since.
While it was gut instinct that drove this approach, I’ve since found out that it is a pretty sensible way to go. Statistics on cancer survival are generally based on data that is five or more years old. Given the current pace of cancer research the current figures generally don’t reflect new treatments. They also capture everyone diagnosed with the same condition- the very old and infirm, those with other health issues and those who choose not to have treatment or to stop treatment.
I was 34, healthy (apart from that pesky stage IV cancer), had access to high quality care, and money to pay for treatments not publicly funded. These statistics were not for me.
This is the worst it’s going to get
The first month or so after the diagnosis was a special type of hell that I would never want to go through again. The level of emotional pain was so extreme that I couldn’t fathom how I was meant to keep bearing it. I couldn’t really cry – as someone who was a frequent crier pre-cancer this was very strange. I was so afraid. Not of physical pain but of dying and leaving my people, particularly my tiny tiny baby.
About a month into my diagnosis my mother arranged for me to speak with an oncology social worker Dr Carrie Lethborg. I don’t really have the right words to describe Carrie. She is a bit like an angel but a very clever, slightly irreverent angel. I’m sure that much of what Carrie said to me in that conversation was helpful. However the one thing I remember is her statement that in her experience it doesn’t get much worse than that initial diagnosis period. The level of shock associated with a terminal diagnosis as a young person is mammoth. Yes, there will also certainly be more bad news down the track but it will not be coming out of the blue the way the diagnosis did.
This perspective allowed me to leave some of the fear behind and to realise that I was coping and that the body blows to come down the line were probably not going to be worse than that initial one. So far that has proven true.
Bring people in
Without a doubt every step of this experience, including those early days, would have been much much worse without other people. There is a lot of comfort in realising that I am very loved. It was also very life affirming to make new connections, often over social media, with people I’d never met but who took my story to heart and cared for me and prayed for me. I know that some people are more private than I am and sharing might not come as easily but I think it is a must do. Apart from anything else, what really is life about if not relationship?
Get a port
On a completely practical level if you need chemotherapy get a port. One of the first decisions I was asked to make was whether to get a port or a PICC for treatment. I am very grateful that the wonderful Claire, my specialist nurse practitioner, told me to get a port. I ended up having a PICC for a short time and having had both I can tell you a port is definitely superior. So if you are having to make this decision I am telling you – get a port.