Living With the Cantaloupe

Grab yourself a cuppa, maybe a couple of chocolate wheatens (chocolate treat with a touch of the digestible) and read my tale of having Hodgkin Lymphoma as a thirty-something mother of 2 in Melbourne.

Why a cantaloupe? And what does it have to do with Hodgkin Lymphoma?

The surgeon who did my biopsy told me that the tumour in my chest was "the size of a small cantaloupe". Why he didn't just say a grapefruit is beyond me. But there you go. Next time you go to the fruit shop, pick up any fruit you can see that is about 15cm in diameter and put it in front of your mid-ribcage area. Imagine it’s inside your ribcage, pushing your heart and lungs around, making you tired and wheezy, giving you weird side effects like random rashes and night sweats that require you to sleep in a bath towel sandwich, and you have no idea what’s going on.

Here's a lady from the internet, holding a smallish cantaloupe near her chest. The exact spot where my cantaloupe was is called the mediastinum. That's smack bang in the middle of the chest.

Since its existence was determined, I've spent most of my time and energy dealing with the Cantaloupe.

I've been through a host of tests and treatment, at all sorts of intensities and phases and as it turns out, this Cantaloupe and I are still STUCK together.  The Cantaloupe will, barring some sort of Jesus-level miracle, take me to an early grave.  Since I now know I'll never be rid of the Cantaloupe, I think it's time I documented what it feels to have be 36 years old, a 3 month old baby in your arms, and told you have a lymphoma tumour in your chest which is the size of a melon you have never particularly liked.

But what counts as the start of this saga?  “How long has it been in there?” I ask one haematologist. “Who knows?” he shrugs. “Months. Maybe even years.”

How on earth hadn't I noticed before? There were moments, signs, the odd alarm bell, but nothing that would indicate an aggressive tumour forming in my chest cavity. For a long time after diagnosis, I felt like my body had let me down. Or I had ignored it in a big way, like those people you read about in the paper who don't realise they're pregnant until their waters break when they're in a meeting or something. "I just thought I was bloated because I was drinking beer a lot".

My GP had noted something weird going on in my blood test when I had an unexpected allergic reaction to an Aldi cup cake mix. But it was a once-off.

Then I had a cough I couldn’t kick. The Cough.

The first and second trimesters of my second pregnancy, which brought us Saskia, also brought the Cough which plagued all our lives. It was nasty and endless, a dry, unproductive hacking and spluttering which I’m sure Saskia was conditioned in the womb to sleep through.  Koen, too, got used to hearing my Cough and continued to sleep his flawless sleep-school-trained sleep.  Unfortunately at times I did have to I sleep in the loungeroom so Hunter could get a good block of Cough-free sleep. Mum loaned us her humidifier, which burbled alarmingly in the corner of the room. I tried various cough medicines and antibiotics. Nothing helped. And then eventually the weather warmed up, the Cough cleared and I carried on.

The pregnancy progressed through the summer, but despite general expectations that I would balloon, as I had with Koen, like a normal pregnant lady, my weight barely moved.  The bump grew, modestly.  The skin stretched firmly across it.  In this photo, I'm 5 days from giving birth and to me I look about 30 weeks.  The obstetrician was concerned enough to give Saskia additional scans at 28 weeks to check she was growing properly. Which she was, apart from a few little holes in the heart (which closed spontaneously when she was born, the "non-starter health issue of 2015", I called it).

And let’s face it, vanity played a part in why I didn't get worried earlier. I loved being skinny and pregnant.  I was too busy being smug.  I revelled in it. I was like those hot French mums in 'French Children Don't Throw Food'. My hair had that pregnancy sheen, my boobs still puffed up a bit, but the rest of me had taken a time machine back to 1998 (although I didn’t start wearing velvet chokers and Esprit hoodies). The lack of weight gain would have rang alarm bells but besides being vain and deluded, I was very busy and tired, and my very experienced obstetrician said that although it was unusual, static weight in pregnancy wasn’t so rare an occurrence that he would be too concerned.  I imagine he’s made a few changes in his personal notebook about that topic now.

After Saskia was born (3 weeks early but not a moment too soon - I felt like an overstretched balloon the entire time), I breastfed and did all of that so assumed that tiredness was due to normal new parent issues. Saskia was a terrible sleeper (it seems obvious now she was not getting enough milk). I was still really skinny. I was back in my pre-maternity jeans within a week and a half post birth.  But no-one called it - 'HEY NICE JEANS BUT MAYBE YOU HAVE CANCER'.  I just thought I was finally becoming Rebecca Twigley. And I started getting night sweats, which I had also had for a time when breastfeeding Koen. This time, though, they were were really dreadful; I would routinely go though 2 or 3 pyjama tops in a night. I had to get creative with my definition of pyjamas - any long sleeve top could be pressed into service.

It was only when I got a cold, then another Cough that became wheezy, that I went to the doctor and got sent to have a chest x-ray. I thought a wheezy cough probably just meant I was worn down; I was told it was probably, worst-case, pneumonia. When the x-ray technician called me to say I needed to take the films to a doctor or hospital straight away and have a CT scan, I got a nasty shock.  The phone call from my respiratory physician with the result of that scan is seared into my brain forever.

It was just before 5pm on a wintry Friday afternoon in July 2015, so it was already pretty grey outside. I had Saskia in my arms. She was about 3 1/2 months old and due for a feed.  She was on bottles now because my respiratory physician had told me I most likely had pneumonia that would need some serious antibiotics that wouldn’t work with breastfeeding. Besides, I was exhausted and was DELIGHTED to be cracking out the Bellamy's. Breastfeeding when you have cancer is a draining business.  It had become progressively more exhausting and unrewarding – Saskia was even dipping a little on the all-important growth charts. Within days she had transformed into a jolly little munchkin with a penchant for formula. I stood at the window as Dr R told me what the CT scan had shown. Hunter wasn't home yet and Koen was with my mum.

So this is how you can find out you have cancer.  You miss a call from the doctor on a Friday afternoon and call back just before 5pm when Saskia is due for a feed.

“I’m very sorry,” he says, and he sounds like he means it. “You have a Lymphoma.”

"A lymphoma?" Cogs turned. "You mean, like a cancer."

Yes. A cancer.

Sometimes when I tell this story, people react with indignation that he didn't call me in for a face-to-face meeting to tell me the bad news. But this news couldn't sit over the weekend. He was telling me on the phone on a Friday afternoon because radiology was going to call me to organise a biopsy probably for Monday. I needed a biopsy to know which kind of lymphoma it was. Hodgkin's or non-Hodgkin's. There are heaps of different types, many different potential outcomes. Prognosis and treatment also depended on the exact diagnosis. Care had to be taken. And it was all kind of urgent because what they saw on that CT scan was alarmingly massive.

There were more details. Logistic-type information.  He organised a prescription for codeine linctus for the Cough.  The doctor was moving mountains to get things happening. Then I had to tell Hunter. I called his phone as he was driving home from his job as a psychologist in the oncology department of a large suburban hospital. "This isn't a joke is it?" he asked. But we both knew I would never joke about this, not after seeing that shadow on the x-ray. People actually don't really make jokes about cancer much. I still don’t know how he did the drive from Epping to home.

Hunter arrived. There were my parents, my friend Julie, my father-in-law Mal. We had actually planned to go to Mal’s for dinner that night and he had cooked a big lamb roast. He wrapped it all up and brought it over. We all ate together, in shock. Koen seemed ok, I think Hunter was working hard to protect him. We continued all the bottle, bath, book, bed routines. You can't stop those and it gave us all something to do. Saskia was enjoying the new bottle regime. She was in an adorable phase which was was a helpful distraction.  My parents were calm and quiet, but even now I try not to think about what it must have been like for them when they went home.

I didn't get a lot of sleep that night. The next day I called Dr R and asked for a script for Temazepam as I knew I wouldn't be able to function if I became sleep-deprived and he immediately organised one to be faxed to my pharmacy.  When you have cancer and are dealing in the conventional medical world, there is no umming and aahing about whether to give you a drug, what about dependency, should we try herbal tea and mindfulness first? etc. None of that. It is just given to you.  I still couldn't process 'cancer'. It was 'lymphoma'. I had no idea what was ahead, some tests, some biopsies... perhaps finding out what the lymph system did? In the meantime, Saskia had to be fed and looked after, Koen had to be amused and the weekend had to grind on.