It was a year ago today I was called into the doctor’s for the results of some routine blood tests. Tests that were only ordered because I saw a new doctor (for a routine script repeat) and she thought it was a good idea to see if anything could be seen to do with iron levels, hormones etc. Peri-menopausal womens troubles. I didn’t even mention my fatigue, I was so convinced it was just being a working Mum getting through a difficult winter of lots of colds. I didn’t even mention my back pain. Which seems crazy now, but at the time I thought I just needed a holiday, which was happening the next day.
Well the results put a sudden end to that. “This is not a diagnosis, but the labs believe there is no other explanation for these blood results than leukaemia. We will refer you to the Peter Maccallum Cancer Centre for immediate testing and a diagnosis. Try not to worry, this is not a diagnosis.”
Holiday cancelled. Extended family plans all changed (we missed one party that was going to be worked into our driving the next day, but went to another one to leave our daughters there while we sought answers). Carl and I staying in cheap accommodation in Melbourne with the unknown hanging over us like a death sentence. Even in everything that’s followed this past year, those first few days of the complete unknown were the longest and worst.
Our plan was to be at the Peter Mac while the doctor sent the urgent referral through on the Monday. We figured if we were already there I could be seen, without the added delay of getting there from 2-3 hours drive away. Our local doctor was amazing. I called reception at the hospital and was told getting triaged would take a few days. The local doctor went direct to the haematology professors and somehow got me seen that afternoon. After an examination and review of the blood results I was booked in for a bone marrow biopsy the following morning, ordered to stay in the city and to call an ambulance if anything happened overnight. Errr, Ok. From that point we expected anything could suddenly happen.
That first doctor at the Peter Mac was matter of fact and reassuring. She told me it was likely either Chronic or Acute Myeloid Leukemia and that depending which, the treatment would either be as an outpatient or inpatient at the neighbouring Royal Melbourne hospital. She told me she would treat me as if I were her sister. And not to google! In the whirlwind of confusion over what was happening my brain felt like it was shutting down, but these words gave me a small sense of calm, and kept me off the internet!
The first bone marrow biopsy was scary but not as bad as they sound. Having a great big needle shoved into the back of your pelvis to suck marrow out from the centre of your bone doesn’t sound great, but there’s only a couple of seconds of intense pain that the local anaesthetic and green whistle don’t block out. And in the first of many small world moments, the doctor who performed it was a griend of a friend!
Within an hour I got a phone call with the news that they had a bed ready for me in 7B at the Royal Melbourne. OK, I guess that means it’s acute!
From that point the next few days were a blur. Telling people. Breaking the news to work and coming to terms with the fact that it would keep going on without me and my students would be fine. Trying to understand what was going on medically. Talking to the social worker and organising the financial side of things. Getting a Hickmann central line inserted into my chest for treatment and the daily blood tests. Working out how we would celebrate my youngest’s birthday.
The medical side was kept on a need to know basis, I think to avoid overwhelming us. As far as I knew, treatment was a month of IV chemotherapy then another bone marrow biopsy and we would see how I was and adjust the plan as needed after that. I was told the overall timeline was likely to be 3 months of treatment with 6 months off work. But at the same time, in the background, just in case it would be needed, they started the ball rolling on testing my brothers in case a bone marrow transplant were needed.
My consultant was the incredibly positive Dr Kate Burberry. She explained my disease was one that was curable (not all blood cancers are) and we were going for a cure. Not any sort of guarantee by a long shot, but enough to face each step positively and with hope.
I’m going to end this installment here and continue in further posts. It’s cathartic to get the story down, but it’s lengthy!
One year on and I’m still here and plan on being for a long time to come. I’m in remission, I’m home. I’m getting my strength back and doing things I love each day. I’m so grateful.
If you have any nagging niggly health symptoms, tell them to a doctor. Get blood tests. It may well be nothing, but then again it just might save your life. I have been incredibly lucky.
Wishing you love and health, Shell.