Put a wig on it

The urban turban. Great for pre-baldness shedding.

As soon as I started telling people I had Lymphoma (I was still feeling weird about saying ‘cancer’. I think in my head it was different if it was Lymphoma; it wasn’t really cancer), they would ask me if I was going to lose my hair during chemo, and then, often quite authoritatively, they would tell me to get a wig.

"You MUST get a wig", I was advised. "So that if you ever want to go out and at least LOOK normal, you at least have the option.'

Now, I had seen plenty of cancer patients at the RMH day oncology centre already by this point, and many of the women wore wigs, and I have to say, most of them did not look 'normal'. The beautiful, highly convincing, 'is it/isn't it' Beyonce-class wig was a rarity. More common was a humbler version - I mean, these things are expensive - that could be picked a mile away. Some looked pretty good, some looked sad and exhausted. Wigs have to be maintained, like real human hair. I've never been a big fan of hair grooming; I didn't necessarily trust myself to keep a wig in pristine condition.

I have had three aunts go through chemotherapy for breast cancer (I have a big family). They all lost their hair during treatment, and wore wigs and beanies to cover up their heads. I spoke to them about what to do, and they agreed that it was good to have a wig, even just for back up.  All three aunts were, incidentally, teachers - so being in front of a class of teenagers all day they were motivated to get organised and take care of their wigs. Some students never knew they were going through chemo.  My aunt Barb was particularly expert on her acrylic wig, and many people thought it was actually a particularly fetching new haircut. It was the right option for her, right up until she opened a hot oven with her wig on, and frizzled the fringe. Luckily this was well after treatment had finished, and her hair had pretty much grown back.

So to wig, or not to wig? That was the question I pondered as I wandered around my beloved suburb of Brunswick, where a sizeable proportion of the population could be considered cosmopolitan and/or flamboyantly dressed.  The local hipsters seem to dress from the op shops, $2 shops and the studios of their experimental fashion designer mates.  Around the time I was considering the wig option, I was in the local Safeway and saw a young man in a hand-knitted full-body balaclava and dyed pink hair.  There are already a lot of wigs in Brunswick too - there's one ancient, heavily made up lady I see regularly sitting in McDonalds nursing a single filter coffee.  She has fully teased her platinum blonde bob wig so it stands 30cm from her head.  It takes a lot to stop traffic in Brunswick. I wasn’t sure that going out on the street as a completely bald 36 year old woman would really cause much of a stir. And of course being a very multicultural suburb, a headscarf in Brunswick is not remarkable in the slightest.

The 'transition pixie cut' before my complete
buzz cut.

I had been terrified that Koen would find my baldness disturbing
but most of the time he thought it was funny. Such a relief.

My hair was quite long, augmented of course by the wonders of pregnancy.  To get the kids used to the idea of mummy changing her hair, before I had even started chemo, I had had my hair cut into a bob.  Never mind what is tolerated on the streets of Brunswick; I didn’t really want to suddenly appear at home looking like Sigourney Weaver in Alien 3 (side note: she was paid $4 million to shave her head for that role, apparently). 

A couple of weeks after that first, dreadful Friday starting chemo, my hair started to thin and fall out a bit.  I knew that I would have to shave it off soon or else go through an unpleasant, extended process of shedding, from which I was warned my bedding would not recover.  I wasn't quite ready to go completely bald, so I opted for a 'transition pixie cut' (my term) and to keep emotion out of it (I was really overthinking these decisions) I went to a different hairdresser to my usual.

About 5 days later, the rate of shedding really stepped up and it became seriously sad and manky. I went to my beloved usual hairdresser, Alison at Hoopla, and told her to shave it off. ‘It’s not a sad occasion, Alison,’ I said. ‘I just want it all off.’ By this point, I was desperate. I know hair is technically dead anyway but after the first round of chemo it really lost any ‘bounce’ or sheen and became a lank, greasy pelt with bald patches that were increasing in size and number.

I had a few headscarves, some given to me by a friend who lived in Singapore, and I started wearing these, or a beanie, and I really enjoyed mixing them up and playing around with power clashing and matching with my outfits.  It was a welcome distraction from the chemo and what I'll call the pall of grumpiness, which, now that the initial shock had passed, was starting to descend on Hunter and me as we realised what we were dealing with. My collection became quite sizeable (and is worthy of its own post).

 

Nevertheless, I did get a wig, but there was some compromise. I had been given an extraordinarily generous donation of cash by my mum’s extended family, which was intended for me to use to buy nice things during treatment so I wouldn’t go without.  To get things going, Hunter and I went to Laksa King for lunch, and then he came with me to the wig shop and I tried on a few different types before choosing a very lovely and stylish wig, which looked like one of my better haircuts.  With the special shampoo, wig stand and brush, the whole bill was $450.  I could have gone all out and got the real high-end, ‘Rolls Royce’ type of wig, made of human hair and almost completely impossible to pick as fake, which costs at least a couple of grand.  Or if you want to think of it another way, about 40 really nice meals with your husband at Laksa King. 

So now I could go out on the street and feel ‘normal’ if I wanted to.

The thing is, I didn't feel normal AT ALL.  There was this pall of grumpiness descending.  I guess it was a combination of sadness and fear, because whatever happened, things would never be the same for us again.  I was 36 and I had cancer. I was going out in a headscarf with a 3 year old and a baby in a pram, for God’s sake. People gave me 'kind eyes' - fleeting, slightly pitying looks, when I was out and about with the kids.  There was no way I was pretending that I was normal.  I would never feel normal again.  Really, I felt like a walking tragedy. 

$10 Halloween wig

And it was serious stage IV stuff too.  Even if I cleared this cancer in the rounds of chemo, Lymphoma would stalk me for the rest of my life.  I would be always wondering if the next check up was the one where I was told it was back.  

I had started seeing a hospital psychologist, a lovely gently-spoken lady who spent a lot of the session nodding and saying 'I hear you' which is very comforting, and she said that Hunter and I were in mourning for our old lives.  We could be as positive as we could manage, and believe me, we were not being 100% negative nellies, but we both knew our lives were changed irrevocably and we missed our old, ‘innocent’ existence.

And one day when the fuzz started
reappearing on my head I just went out bald. 

We did persist with our social lives - we would go to BBQs and see our friends and have coffees and play dates and so forth, and feel out of touch with what everyone else was doing.  I felt like I had no social skills anymore. While everyone was planning holidays and doing renovations and applying for promotions, we were now in a 3 weekly cycle of chemo, stuck in Melbourne with occasional trips to the beach house. Hunter had to defer his study. We talked a lot about cancer, and treatment.  We were very boring company.  We found ourselves rudely unsympathetic to the normal everyday difficulties of modern life. Topics of conversation such as long commute times, creche waiting lists, how tired you feel after an 8k run, the problems with the new iPhone upgrade, made us impatiently roll our eyes. "Don't you know what a real problem is?" I felt like saying sometimes. Of course, it was just straight up jealousy. I actually loved hearing about all these normal problems people were having. 

We were unable to see past the end of treatment. We didn’t even know when or what the end of treatment would be. The doctors had said that it was likely that I would need radiation therapy after chemo.  If that didn’t do the job, then salvage chemo (super strong chemo) and a stem cell transplant would follow.  That would be a really serious development, taking  us well into 2016; making BEACOPP chemo look like a walk in the park, and trashing the odds of my long term survival. For now, the odds were still in our favour (97% of Hodgkin Lymphoma patients in my age group survive) but there was no clear endpoint.  And as I said, even if treatment was a raging success, Lymphoma would stalk me for the rest of my life.  

So. I persisted with the scarves, and I never once wore the wig.  It’s personal for everyone. It's about how you project yourself. It's about cost and time and whether you can be bothered. And it's about whether you want to feel normal, or believe that you could feel normal, and believe that the wig is up to the job.  

A pretty bad Friday

On Friday, 31 July 2015, I commenced my chemotherapy for Hodgkin Lymphoma.  Koen made me breakfast (above).

I blow-dried my hair a bit, because I thought it might be my last chance for a while. I wore a nice Marimekko tunic to show the cancer I was not quite ready to give in and wear the Tracksuit Pants of Capitulation.

Feigned insouciance before my bone marrow

biopsy- really I had no idea why I was having it

and why it was important.

I arrived at the day oncology unit at Royal Melbourne Hospital at 9am and the day began with a bone marrow biopsy to check to see if there was any cancer in my bone marrow, which would have apparently been a big problem, like certain-death kind of stuff.  I kind of forgot this later on when the results came back, and couldn't understand why my parents were weeping with relief. For the biopsy, the doctors were worried about the state of my lungs, so while they certainly loaded me up with local anaesthetic, they didn’t sedate me, which is the usual practice. I was quite aware as the doctor ground a large hollow biopsy needle into my pelvic bone. It was kind of disturbing.

Then I had to wait my turn for a CT scan.  I was prepared for the scan by being made to fast and drinking a large quantity of aniseed-vomit-flavoured drink which 'gives better pictures' or something.  I’ve had to drink this drink a few times over the course of my treatments and for some reason it’s my Waterloo, my Achilles Heel that brings me to tears, reduces me to a sooky, resentful mess.  One day I was in the waiting room suffering through one of these Godforsaken drinks and I watched in disbelief as another patient, an elderly Greek lady, slammed down the evil drink like it was the most delicious milkshake.  But for me, the drink took over an hour; I was perched in a hospital bed in the oncology day centre as the lymphoma coordinator, social worker and various other health professionals dropped in to make their introductions and I progressively felt more revolting, and hungry as I was loaded up with pamphlets, business cards and handshakes.

 

Drinking the evil drink and being really
stoic about it.

When it was my turn, I was wheelchaired (once you get into the hospital matrix, at a minimum you are pushed around in a wheelchair, and often conveyed in a bed even if you walked in to the ward 5 minutes earlier) down to the bowels of the radiology department at RMH, for the CT scan, which is a science fiction-like procedure. You lie down on a trolley and are injected by a little robot operated by the radiologist in a booth, with the radioactive fluid, which lights up any cancer areas.  After this Tron-in-your-veins operation, I was sent up to the ward. It was my first time in a public ward in an old part of the hospital, and to boot it was a mixed room with minimal privacy. I threw a bit of a (silent) princess fit.  Really I was anxious about having no privacy in what was going to be potentially a horrible experience.  This unwelcome development just all added to the layers of horribleness the day was taking on. (Although anyone else who has experienced the old parts of the hospital may see my point - it has a strong Soviet-era feel with lots of old metal furniture, grey curtains and dreary green lino). But vanity should be left at the door when you enter a public health oncology ward. Also, I discovered, you should abandon hope of good food, or a real mug for your tea (bring your own, and your own tea bags too if you have special tea needs).

I was starting to feel pretty seedy by this point. Whoozy. I hadn't eaten, and my mouth was so dry. Then the day went nuclear.  Ms R (the specialist Lymphoma support nurse) turned up and Hunter asked her some questions about staging (Hunter was concerned because we hadn't been told what stage my Lymphoma was).  Ms R casually and bluntly dropped that it was Stage IV but that with Hodgkin Lymphoma, 'stage is not indicative of prognosis'.

I don't know if you know much about cancer staging but there are 4 basic stages - no stage 5. You want stage 1 or 2 (or as I pointed out to Dr M, Stage 0). Even if Hodgkin Lymphoma is one of the few weird cancers where Stage 4 is not a death sentence, you don't want that. Putting the stage together with that comment from my surgeon - 'it's the size of a small canteloupe' - we realised at this point that I was in some serious shit.  The room spun for a few seconds. And then before we could regroup and get Ms R to expand on this information, another nurse appeared and said its time to go to surgery to have my PICC line put in. 

I was then whisked off to a surgery area SOMEWHERE in the hospital (the lack of external light in some areas was starting to make me very confused about time and space) and tended to by a pair of nurses who specialise in PICC lines. A PICC line is like a semi-permanent cannula - the tiny but sturdy tubes are pushed into the upper arm, into a vein and towards the heart.  They save the veins and arteries from damage wrought by the toxic chemo drugs and many other IV treatments you have during chemo, such as blood transfusions and fluids. Because I was so dehydrated, the nurses struggled to find a vein. There are still two puncture marks on my left arm to remind me of their efforts. They gave up on this arm and tried my right one. One of the nurses had recently returned from a work trip to Africa. She was a highly trained and skilled surgical nurse and assisted some surgeons who were training local specialists in Africa for an NGO.

When it was mentioned that I have barely eaten all day, cake appeared - apparently the junior doctors were all rotating into new departments at the end of that week and there was cake to bid them farewell. Finally a viable vein was found in my right arm, the PICC line was inserted and I could rest a little until my return to the ward. I really needed to go to the toilet. I was feeling dizzy and uncomfortable. One of the nurses accompanied me down the hallway to the nearest loo... the walls started to move, the ceiling was spinning... the next moment a 'MET CALL' was declared which is an announcement throughout the hospital PA system ("MET call 5th floor, oncology day centre" for example). It brings nurses and doctors rushing in from all over the place, and you're surrounded on a trolley as they wire you up to a beepy heart machine and take your temperature, blood pressure, oxygen saturation levels and a million other things.  All because I had nearly fainted.

I've never fainted before. I'd never been treated in a public hospital before. It must have sounded so pathetic when I exclaimed "but it wasn't like this when I had the babies at St Vincents!" The St Vincents Private maternity section is like a fancy hotel, but with lactation consultants and a night nursery where a nurse settles your newborn so you can have some sleep in your single room which features a bar fridge. So there was some adjusting for Madame. And I still had my chemo to begin. It was late in the afternoon, going into evening, when I was returned to the ward. Then I had an attack of uncontrollable trembling; it's called a 'rigor' (pronounced ‘rye-gore’) and it's one of the symptoms of advanced Hodgkins Lymphoma. I became incredibly cold and required heaps of blankets; Hunter and 2 nurses held me and comforted me as my overwrought, exhausted body wracked and shook for 45 minutes. It eventually passed; I was getting tired; I had a sandwich.  There was a temperature spike as well. 'She's on the way up' I remember them saying.  Straight away I was hooked up to IV fluids and antibiotics as they were concerned that I seemed to be becoming unwell and they were still desperate to get this chemo started.

When I think back to it, it must have been so urgent for my chemo to be started because despite all that had happened, the nurses now mentioned they wanted to start the chemo. I decided that considering everything else that had happened, I didn't feel TOO bad, and I might as well get it done instead of waiting for tomorrow. Hunter had to get home to the kids. At around 8pm, the nurses started to get things ready to start the process of administering the first day's medicines for my chemo regimen, which was called BEACOPP.  It was all hooked up to the IV and ran through the tubes into my PICC line and then my veins.  I felt fine and tolerated the drugs.  Hunter went home.  Afterwards, obviously, I fell deeply and heavily asleep.

Hunter and the kids came to visit the next day and considering the ordeal I’d been through the previous day, I didn't feel too bad. It was wonderful to see Hunter, who looked tired and worried, and a delight to see the kids.  Saskia was still so little she fell asleep on my chest! Adorable. I read Koen some books and we had special 'sometimes food' snacks. Koen seemed fairly unperturbed by mummy being in hospital with a funny thing on her arm and enjoyed the novelty factor, especially the machines and personal tv.

The rest of the chemo proceeded as planned and was uneventful. The learning curve from here on was about sharing a ward with other people. Funnily enough, in subsequent stays if I had to share a room, I was always furious initially, with much made of sweeping the curtains across dramatically.  Inevitably I ended up fascinated and engrossed by the other patients, and even keep in contact with one of them. I think not being alone makes the time go faster. For this stay, there was a bloke in his 40s from Wangaratta who could sleep through his IV machine beeping (which it did frequently) but was otherwise friendly and low-key, although he had many views on football.

The other patient in my room was a long-termer named Julie, who was very posh.  She had daughters in their late teens, one of whom was in an elite rowing squad. She had a type of Leukaemia and whatever treatment she had received so far hadn't worked.  She was getting to the desperate stage but carried herself with the utmost dignity and grace, like a retired ballet dancer, in her pyjamas and beanie, which covered her sparsely-haired head. She had been at RMH often and long enough to know that you should bring your own mug unless you want to drink from polystyrene.  A week or so after I left the ward, I bumped into her in the day centre and she was obviously back in the civilian world too - looking amazing in a jaunty beret, cropped jacket, fitted pants and incredible Italian tanned leather knee high boots. Knowing how ill she was, and how precarious her situation was, I was impressed with her boldness - no sad trackie pants and baggie t-shirt for Julie. Oh no! And of course the handbag must match.

By Monday I had done the all-important first three days of chemo with nothing remarkable to report so this being public health, I was sent home. I was so happy to be out, I was kind of on a high. The tiredness and general malaise that chemo gives you hadn't kicked in yet and luckily I didn't get the nausea, which could be so crippling for chemo patients. These days, the medication for nausea is incredibly good.

The first round played out ok and the doctors were happy.  They said that they expected that most of the tumour would be taken out by the first round of chemo and later rounds of chemo would be ‘just to be sure’.  Dr M sent me for a scan to see if the tumour had been reduced and she seemed happy enough.

About 2 weeks into the round, an ingrown hair on my leg which I’d forgotten about, became an abscess and I had to spend a night in hospital having it checked out and taking IV antibiotics. As explained earlier, the chemo knocks out your immune system, and you spend a number of days of your chemo cycle (for me it was days 8-14 of the 21 day cycle) being incredibly immune compromised and prone to infection while waiting for your bone marrow to regroup and send out new white blood cells.  Then, like magic, white blood cells reappear in your bloodstream, get back into action and you immediately feel better.  

Little darling slept through the whole thing.

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.

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.