Cancer? Chemo? Hodgkins? Non-Hodgkins? What is going on???

Until I started my chemotherapy, I didn't really know what it was.  I didn’t even really know what cancer was.  I am ashamed to admit that I have had 4 aunts go through it and I had no idea.  My aunts had all lived in different towns and their cancer treatment had happened off-stage for me, usually to be updated by mum and at family functions. I was concerned about them and worried about what would happen, but I was also a pretty self-absorbed person and wasn’t very curious about the finer points of medical treatment for diseases I was never going to get because I was going to live forever (I was in my 20s).

I didn’t know anything about cancer. Chemo. Lymphoma. The lymph system.

So I pretty much knew NOTHING, and I held off finding out more until I had a proper diagnosis, because I had been told by the doctors that the difference in Lymphomas was huge and if I started looking into it I would freak myself out.

But for our purposes, a quick primer is necessary: First off, cancer is “a disease in which abnormal cells divide uncontrollably and destroy body tissue” (thanks, Google search).  It can happen anywhere in the body.  Chemotherapy (chemo) is basically giving medicines – orally, by injection or intravenously (IV) – which go into your body and kill the cancer cells.  Actually the Victorian Cancer Council website explains it best: “Chemotherapy (sometimes just called ‘chemo’) is the use of drugs to kill or slow the growth of cancer cells. The drugs are called cytotoxics, which means toxic to cells (cyto).”

Then the Victorian Cancer Council website explains: “Chemotherapy drugs damage cells as they divide. This makes the drugs effective against cancer cells, which divide much more rapidly than most normal cells do. However, some normal cells – such as hair follicles, bloods cells, and cells inside the mouth or bowel – also divide rapidly.”   This is why people lose their hair, and look like and feel like hell. Other side effects include vomiting, weight loss (or gain), ulcers in your mouth, haemorrhoids, fatigue and loss of appetite. There are heaps of variations and some people get everything under the sun and some people just cruise through almost like they’re on holiday.

The biggest danger is that healthy cells include white blood cells so those little infection fighters are knocked out and until they regroup, you are basically a sitting duck for any random infection. And I mean ANY; I had a hangnail turn purple and fill with pus during my first round of chemo.  I heard another story of a chemo patient who almost died from an infection caused by a cheap pedicure. Whatever your feelings about antibiotics and their potential overuse in medicine today, it’s a different story when you’re on chemo. They are your lifeline. In fact, I have been on continuous antibiotics since I was diagnosed in July 2015.

But what happens in cancer treatment isn't just going to chemo appointments and being hooked up to an IV; you are swept into the medical world that supports the chemo. You become a pliant, polite pin cushion in order to meet the needs of the health system that is going to save you - you eat when they want you to, which is always not when you're hungry, you ask for a glass of water, you offer your veins for cannulas.  You have to learn to sometimes ask for things you might assume come standard, such as blankets or panadol, and then other times the nurse will pile you up with blankets fresh from the blanket warmer and make you a cup of tea just how you like it.  And at some point you will give in and procure a Webster pack at the tender age of 36, because your medication regime is just too complicated and you can’t handle this anymore.

My chemo started in a big urgent rush, on a Friday. Friday, 31 July 2015 in fact. A couple of weeks prior, the kindly Dr R, the respiratory physician, referred me to have a biopsy, an unpleasant procedures involving needles into my ribcage to get a sample of the tumour.  All I remember is the surgeon was quite a lot younger than me and wore Salvatore Ferragamo shoes.  The first biopsy didn’t get enough of the right kind of tissue or something, and it had to be very exact because blood cancers are so complicated, so I had to have a full-on surgery with general anaesthetic and the works so they could really get in there. 

With Saskia on the day of my surgical biopsy.

Post-surgery, I was in hospital for 3 nights, kind of affronted that two little knicks in the side of my ribs could make me feel so disgusting.  The world of surgery is pretty crazy to the layperson.  I met my surgeon, Mr B, in the public consulting rooms at the Austin in Heidelberg in the morning on the day of my surgery.  In the private hospital where my surgery took place, Mr B had a list that he started at 6pm after his afternoon public surgery list was finished. He did not stop working until that list was finished. I was second last on the list and I went in at 11.15pm (yes, I had to fast all day waiting for my surgery and was crazy with hunger).

It was Mr B who described the size of my lymphoma as similar to a small cantaloupe when he swept in with his minions to check on me at 8.20am the next morning, bright eyed and fresh as a daisy.  WHERE DID HE SLEEP? Did he sleep? How is it that his tie is so neat? Is it fresh out of the box? Those were the questions I asked myself as he discussed my biopsy.

The biopsy results were then given to my haematologist, Dr M. I met Dr M on Wednesday, 29 July 2015. She was pleasant and friendly, a bit older than me.  I had googled her of course. She was highly regarded and had even won some important awards.  Though her research interest was leukaemia, she treated lymphoma and other blood cancers as well.  She told me I had Hodgkin Lymphoma and would start chemo next week, most likely. I just needed to have a couple of tests done the next day to get things in order. I'd already had some scans, x-rays, blood tests, stuff had been happening.

On the next day, a Thursday, I had a lung function test for the first time. This is a confusing test for the beginner.  A genial and unassuming middle-aged man in a short sleeved shirt, who we will call George, calmly talked me through how to breath through the test, look at the computer screen and what cues to watch and listen for. Then, in the middle of the test itself, George became a deranged drill sergeant and started screaming at me to breathe INNNNNNN or HOOOOOOOOOLD that breath and I was so confused about what was going on and I was terrified that I was doing everything wrong. I don't think I gave it my best shot.  Apparently the results of my test demonstrated I had lung function of 40%. I did many more of those tests over the course of treatment and got much better scores (for any fellow ex-McRob students, you can imagine that was a relief).

As a result of this poor score and the scans and biopsies showing that the Cantaloupe was a ‘bulky mass’, I think a few panic buttons were pushed and I was told that my chemotherapy would start the very next day. Pack your bags for a few days’ stay, I was told. My chemo odyssey was about to begin.