WORK WORK WORK

Power clashing at the market, #chemochic

That last post makes it sound as though during those first crazy and intensive months, Hunter and I were in a constant state of misery.  We weren't, but it’s true that there were plenty of low points as we came to understand the new reality. I was bewildered, anxious, frightened, overwhelmed. Angry, exhausted, what else can I put in my Sad Cancer Wordfind?

We tried to keep it balanced but there was no chance of us falling into Pollyanna Land. Unfailing positivity is very popular in the cancer world. You see it all over social media. People are no longer cancer patients, or even survivors, but cancer THRIVERS.

“You got this!”

 “We are going to KICK CANCER’S BUTT!!!”

“I just have a really good feeling about this. I think we are going to beat it”

 “You’ve gotta stay positive, all the time. Thinking and acting negatively is what causes cancer in the first place”. 

There are cancer survivors who feel so positively about their cancer ‘experience’ that they feel it’s enriched and improved their lives, to the point where they’re glad it happened. They see themselves as warriors in an epic battle with cancer.  I can certainly see the logic in it, especially the battle metaphor when they’ve ‘won’ or achieved a remission.

We might have almost felt like winners from the start. The statistical likelihood for patients in my age group surviving Hodgkin Lymphoma (HL) 5 years out from diagnosis is 97%. You can’t get much better odds. But we could not bring ourselves to utter those words ourselves. Recent experiences watching some of our close loved ones come out the loser despite favourable odds, and Hunter’s experience with some patients at his work had made us very cautious. We did not want to assume the win yet. Besides, the cantaloupe. You can’t feel super-positive about the future when a 15cm cantaloupe of malignant tissue grew in your chest cavity without you knowing. I would need a bit of reassuring because I went back to feeling secure about my future.

Dad visiting me and doing the crossword when I was in isolation
with suspected influenza (later cleared)

Amidst the worry, and my chemo side effects, and suddenly living a life that revolved around Royal Melbourne Hospital, there were nice things too.  After a hectic few years where we’d both been pushing ahead with careers (Hunter had started his Clinical Psychology Masters, some nights driving an hour in peak hour traffic from Epping to Hawthorn for classes. Meanwhile I was working 3 days as a legal PA and cramming in art projects for corporate clients. And OH, we’d just had another kid), the wheels of life now slowed right down.  I spent a lot of time having cuppas with my parents, watching Saskia kick around on the floor.  Dad would sit with me in hospital waiting rooms, or during chemo, or if I got an infection and was admitted to the oncology ward, for hours.  We would talk a bit, do the crossword and then maybe both of us would fall asleep.  I was rediscovering, after years of frenetic restlessness and activity, the art of companionable silence.

Beautiful, thoughtful care package from friend and colleague Michelle Mackintosh

The overwhelming generosity of friends, colleagues and relatives deserves its own post, no, its own BLOG. People would drop off cakes and Bolognese sauce and fabulous bunches of flowers.  Friends living overseas would send care packages of beautiful body lotions, scarves lovingly searched for in London flea markets and treasured books.  Hunter went back to work some time in round 1 of chemo after a month of carer’s leave, and was working hard to keep it together, ably assisted by our parents, so the kids would have a happy, stable homelife.  On weekends, he would drop over to friends’ places with the kids, and whilst all the kids would play in the backyard he flopped on one of the spare beds for an uninterrupted, desperately needed nap.  He was thereafter fed.  We almost never had to cook because my friends set up an online meals roster, which we could start up and put on hold as needed. Beautifully cooked homemade meals, which covered all our nutritional needs and the vagaries of 2 children under 5, were regularly delivered to our doorstep. When I was well I would go to my local cafe, La Paloma and see my Brunswick buddies. We would do the crossword and the quiz from the Age and talk about Brunswick, the world and life in general. I’d been going there since we moved to Brunswick, through both pregnancies and babyhoods, and I kept trying to go as much as possible throughout chemo.

Being a patient became my job. It was my new career. Other people looked after my children regularly.  Saskia was too young to join Koen at his crèche (which was now fee-free as I was unable to work, thank you Australian tax-payers).  Luckily, Mum and Saskia loved each other and had a whale of a time exploring Brunswick cafes and fabric shops.  Further proof I had a new career: I was dealing with paperwork and managing a diary, along with waiting for and attending appointments. Everyone knows that is what jobs are about. I was exhausted when I got home.

Mum in 'Janny' mode - simply the Master Grandmother, no
common term covers her skills, so a unique one had to be invented.

Koen at kindergarten on Footy Day.

Funnily enough, I started to take extra care with my appearance for appointments. There was no one to impress but I was dressing like I was gunning for promotion – what is it they say about dressing for the job you want, not the job you have? The job I had called for comfy tracksuit pants, PICC-line-access-friendly tops and beanies. I seemed to be dressing for the job of textiles curator for a private craft museum, which would be a pretty awesome job, come to think of it. 

Showing off a handsewn, PICC line-friendly dress (bandage still visible).

If I was gunning for a promotion, it was to be the best patient I could be. I was perky, polite and obedient. I kept saying to staff ‘don’t feel like you have to manage me, just tell me what you need me to do’.

I think, at bottom, it was two things. Firstly: that old psychology chestnut, control. In a situation where I was wildly, terrifyingly out of control, I could iron a frock and powerclash my headscarf and swan into the day oncology unit like Audrey Hepburn in any of her films before the 50s ended and she realised she couldn’t act. I could do that!

Secondly, and more interestingly: I was terrified of doing something wrong and not giving myself the best chance. I didn’t want to be forgotten, or thought to be difficult, or reluctant to do treatment. I was like the nerdiest kid in class who not only aims for straight A plusses, but also has the neatest collar and sharpest, freshly ironed pleats. If the RMH day oncology unit had had a library monitor, I would have put my hand up for sure. Well, you never know what might help. But I was going to be DELIGHTFUL and DILIGENT, the kind of patient you’re almost sad to see cured and off the ward.

Being on a 3 week/21 day chemo cycle, a pattern began to emerge, driven by my capricious and mysterious white blood cell counts.  White blood cells are the infection fighters, and a count told me how safe I was from infection, so it dictated activity, who I saw, what I ate. They would dip and dive and leap, sometimes infuriating in their sluggishness, sometimes making terrifying leaps overnight. Days 8-14 were the ‘danger days’ when I would have no protection from infection and often ended up in hospital with a fever and infection.

For example, on one round of chemo, it was about day 12 and I was starting to feel like I had dodged the white blood cell bullet, so I happily spent the weekend at the beach house with my family and caught up with some friends for coffee and lunch in Barwon Heads.  As we were driving home to Melbourne on Sunday afternoon, I felt a bit achey in the forearms, which I put down to pushing Saskia’s pram along the beach. By the next morning, I had a fever of 38.3° and was lethargic and queasy.

Hospital, a still life.

This is about the third time something like this had happened, so we knew the drill.   As soon as I got a temperature above 38°, I had to go to the Emergency Department at Royal Melbourne Hospital and they would start me on a course of rehydration fluids and broad spectrum antibiotics.  They would take samples of my blood to check if there was a virus and to see what else was going on.  You can basically tell someone’s life story from examining their blood, apparently.  What their organs are doing, how effectively they’re converting the air they’re breathing to oxygen in the bloodstream, whether they’re eating enough bananas.  I would hang out in emergency until a bed was found for me in the ageing, cramped oncology ward on level 5.

Hopefully I would have my own room in the cancer ward, but there were no guarantees. Sometimes, when the oncology ward was too full, they would put me in the infectious diseases ward on level 9. The ward is 20 years old but feels even older.  It has the feel of Soviet-era Eastern Europe, maybe from a documentary I saw once about childbirth in Kiev in the 80s.  Maybe it’s the Spartan furnishings in stainless steel, the liberal use of Hospital Green paint, the faded prints of vases of flowers on the wall. However, the nurses up there are DELIGHTFUL, friendly and funny.  They offer to make you a cup of tea. They have time for a chat. Apparently, if Ebola comes to town, the infectious diseases ward on level 9 is where patients will be treated, so I was always very nice to the nurses there. They didn’t necessarily know what to do with my PICC line though, and cancer is not their speciality, so it was still best if I ended up on level 5 where the cancer specialists roamed and you are less likely to be passed over for an urgent case closer to home.

How you will respond to chemo varies widely.  Over the 6 rounds of chemo I had in 2015, I was hospitalised 4 times for infections.  The first time was for a surprise hair follicle infection; I was out after 24 hours on oral antibiotics, and it cleared quickly.  The other 3 times were all episodes of ‘febrile neutropenia’ – where you are neutropenic (low white blood cell count) and you get a fever (febrile). I was in for a few days each time – given IV antibiotics and fluids, and when the infection was under control (no fevers anymore, generally on the improve) I’d be sent home with oral antibiotics. 

PICC line on show, with bonus sleeping baby.

Because I was inexperienced in hospital matters and had a pretty low anxiety threshold, each hospitalisation seemed like a crisis at the time, although they were in fact all low-grade fevers.  I would lie in my emergency trolley bed, recalling scenes from Victorian era novels of sweaty heroines dying in their beds by candlelight, all because they WOULD walk in the rain. Surely that would be my fate now? No, a registrar would flatly contradict me on his ward round.  On a scale from 1 (minor) to 10 (fatal), my infections were about a 3.  Still, the fever, the vomiting, lethargy etc made me feel pretty close to death, or at least, really pretty bloody rotten.  Those serious fevers I’d heard about would put you in the ICU and take you very close to death. People survived them at a great price – organ damage, weeks in hospital, long delays in treatment.  I was eternally grateful that I avoided that outcome.

Otherwise, generally, I had plenty of fatigue (although with a 3 year old and a baby, who wouldn’t?), but almost no nausea.  Another patient on the same chemo regime as me was only admitted once for an infection but was essentially crippled with nausea the whole time she was on chemo.  It didn’t matter what amazingly advanced anti-nausea drugs she took, she was intensely pale and on the edge of vomiting the whole time.

Advances in anti-nausea drugs (or more correctly termed, antiemetics) in recent years have transformed chemotherapy. In fact, at a Leukaemia Foundation conference in 2015, I heard that a leading medical journal had listed the improvement of antiemetics as one of the top 10 advances in cancer treatment in the past several decades.   Once upon a time, the nausea could be so bad that treatment would have to stop altogether. It would be literally impossible for the patient to keep anything down. They would lose huge amounts of weight, weakening to the point where it was dangerous to continue treatment.  Strong antiemetics such as Ondansetron now keep all that at bay and make many more patients treatable. Indeed, plenty of patients are able to go to work and maintain an exercise regimen, unimaginable possibilities before these new generation antiemetics.

 There are two chemo options for Hodgkins Lymphoma - ABVD and BEACOPP. Most people are put on ABVD, but in order to really ‘blow it to the scheissen hausen’ as the Lymphoma coordinator would say (I don’t know why she thought it was so funny to mangle German swear words like that), I was put on Escalated BEACOPP. The acronym BEACOPP stands for the drugs they administer: Bleomycin Etoposide Adriamycin (doxorubicin) Cyclophosphamide Oncovin (Vincristine) Procarbazine Prednisone.

On day one, usually a Monday, you get Etoposide, Adriamycin and Cyclophosphamide through an IV.  The actual drip takes about an hour. You start taking Prednisone (steroids – 60mg a day for 2 weeks) and Procarbazine (for a week), both as tablets. On day 2 and 3, you just have the Etoposide via an IV for about 30 minutes.  You also start taking Fluconazole and Valaciclovir, two drugs that stop you from getting various infections and viruses, and regular antibiotics called Resprim Forte – every Monday and Thursday.

The following Monday/day 8, you have Bleomycin and Vincristine. These are the ‘nasty’ drugs. A lot of people skip Bleomycin because it can be rather hard on the lungs. In fact I only ever had it for round 3 or 4 and sure enough I got a lung infection. There is some talk of taking Bleomycin out of BEACOPP altogether.

The trail-blazing Hodgkins Study Group in Germany came up with the predecessor regime MOPP in the 60’s and found they were saving up to 70% of patients with advanced disease. ABVD and BEACOPP are ‘tweaks’ of MOPP and are the most commonly used treatments for HL.  Basically HL treatments are so successful now, with 90-95% of all patients surviving beyond the all-important 5 year mark, that improving treatment means asking what they can take out and how they can lower the impact of the treatments, rather than how can they make more of an impact.

Dripping water in IV machine.

It’s not just the drugs targeting the disease, these regimes also include anti-nausea drugs, blood transfusions, drugs to stop side-effects you couldn’t dream up (such as “tumour lysis syndrome” which is what happens when you kill off a heap of cancer cells really quickly and they’re released into the bloodstream) and so on. I would add, time taken up attending the appointments for the actual chemo is a small fraction of all the time spent on the other things you get involved in.  A large portion of the chemo pie chart is obviously time spent in waiting rooms due to the always-parlous state of public health funding, even in these relatively enlightened times.

It’s not a surprise that chemo wears you down, and that people often talk about the irony of fighting disease with treatments that could and should (and sometimes do) kill you. So some of the associated treatments have the sole purpose of cancelling out the threat created by chemo to your body. There is, for example, G-CSF therapy, whereby on about day 8 you inject yourself with a drug called filgrastim. This stimulates your bone marrow, where blood cells are produced, to resurrect after being punch-drunk from all the chemo and to produce white blood cells, which are pushed out into the blood stream. You can actually feel it happen because your larger bones, such as the hip, thigh and upper arms, often feel achey at this time as the cells leave the bone marrow.  Bone marrow in its stunned-mullet state can take ages to get back online unassisted, especially after a few rounds of chemo. This would leave your body exposed to infection for too long a period to be safe, so by using G-CSF therapy,  chemotherapy can continue uninterrupted. 

This amazing therapy was developed off the back of discoveries and research made at the Walter and Eliza Hall Institute in Melbourne in the late 70s – early 80s, and it’s since been used in the treatment of more than 20 million cancer patients world-wide.  It’s one of the discoveries that has made chemo more effective and less traumatic, and no doubt saved millions of lives so it probably deserves far more than the 40-odd words I’ve given it here. But along with the human body, it’s not perfect. So my very battle-weary immune system, still waiting for my exhausted bone marrow to lurch back into action after 3 hits of filgrastim, would succumb to an infection, my temperature would spike and into the emergency department I would go. In fact, despite my relative youth and health, chemo rounds 4 and 5 were both delayed by a week because I just couldn’t get my white blood cell counts up high enough in time. 

Another thing I had not expected was that I would be fitted with a PICC line. I had no idea they existed before my but a PICC line is a thin, soft, long tube inserted into a vein in your arm and the end of the tube sits in a vein that takes blood to the heart. It’s a really effective way of getting medicines into a patient without damaging veins and for getting blood out for tests.  It’s very useful because it gives the nurses access to your veins (“access to your veins” is shortened to “access” in hospital jargon) quickly and cleanly. It’s also a pest because you have to keep your dressing clean and dry, and you have these tubes dangling off your arm with large “lumens” (protective covers for the tube ends) flicking around. When they are not in use you need to keep them taped up and tidy.  A stretchy bandage covers the whole area.  This is all fine and great except that I live in the world.  I now had a wardrobe problem – I needed clothes with comfortable, long, loose sleeves to cover the bandage area, especially when the weather warmed up.  Luckily I managed to find a solution involving the hours in the waiting room, my love of hand-sewing, and a large stockpile of fabrics.

#chemochic birthday!

#chemochic at the beach, with bonus baby.

So there’s all that to chemo and then there’s the time commitment I’ve mentioned. And the little medical details, the equipment, the jargon. Of course chemo is really about the hard line stuff, the huge discoveries, the amazing reality that diseases that were a guaranteed death sentence only a few decades ago can now be contained or are even on the way to being cured. When you’re in it, chemo can feel like a really involved programme of sitting in horrible vinyl armchairs in waiting rooms, drinking more tea out of Styrofoam cups than is good for you, the environment and your dignity, while becoming addicted to Survivor reruns against your will. I watched countless needles go into my PICC line. I watched the nurses, hypnotised, as they hooked up different drugs, blood transfusions or even just bags of saline, which are used to flush the line clear.  I admired their rapid button pressing ability, the assured way they had of looping up and clamping tubes that drugs would flow through, the little trick they had of flicking air bubbles out of the tube.  The particular way that each nurse would lay out her workstation with opened vials of saline for flushes and various sets of latex gloves and little bottles of different solutions open and ready. The way you knew particular nurses were new because they didn’t do this and then a simple dressing change on your PICC line would take three times as long as usual. The quiet chit-chat, the hum of your neighbour’s tv. The slightly embarrassed, self-conscious presence of the accordion player who would take up residence in the day centre on Mondays. The lovely tea lady bringing around fresh cake, tea, coffee, and fresh fruit for patients only (returning Hunter’s hopeful smile with a blank look, crushing his hopes for a slice of the cake of the day).  

A quiet, almost cruisy life flicking between BEACOPP chemo appointments, coffee dates and playing with the kids. That’s how I spent the second half of 2015. The chemo wrapped up late November and my PICC line was removed a few days later. I didn’t anticipate more chemo after these 6 rounds. I had been told by medical specialists that the likely outcome for 2016 would be that I would certainly have to have radiation therapy and, quite likely, a stem cell transplant. BEACOPP chemo finished up in late November after a couple of delays and hiccups. My bone marrow was exhausted.  My hair did not burst back into life like a pot of aggressive alfalfa sprouts.  

Koen explaining how Santa was going to get in.

Beach life, bonus sleeping baby.

Koen teaching Saskia. Not killing each other! Wonderful times.

At Christmas time, life was pretty lovely.  I had worked quite hard in September-November and produced a round of papercut Christmas wreaths, which I sold to friends and family. The response was surprisingly huge (well, relatively so – cutting and mounting them by hand of course slowed everything down) and it was so great to have a bit of cash to go crazy on the kids.  Hunter and I struggled to buy each other a present though. We often buy each other ‘significant’ gifts and couldn’t think of one that encompassed all that we’d been through in the past 6 months, so settled on a Country Road doona cover and pillow cases instead. We welcomed the new year 2016 at the beach house quietly, hoping that my CT scan on 4 January would show results which would promise a course of radiation and some recuperating before a return to something like a normal life. But sure enough, the cantaloupe had other plans.

Christmas Wreath, 2015

A flash in the pan! And quilts

Well, as Ron Burgundy said, that escalated quickly... I pumped out some epic blog posts, got really involved in it, and then dropped it like a hot potato that took 3 months to cool down to an acceptable temperature by which point it could be picked up again.

There's been a few things happening. But I guess when you have active stage IV cancer, there are always things happening.

In late April, my friend Britta and I went to Quiltcon. Britta is a quilter par excellence and has crafted many beautiful gifts over the last couple of years. I don't know what I did to deserve such beautiful and thoughtful gifts, but one of my most treasured possessions is a garland of photographs of special moments and people from my life.  She made it for me last year before the transplant and it has pride of place hanging on my bedside dressing table now. Anyway, we had a fabulous time at the quilting convention, and because I think very deeply about time management and planning and so forth, I bought a pile of 'fat quarters' and then plunged headlong into the painstaking, time-sucking vortex activity of making quilts for the kids.

'Um, sweetie, don't they have quilts already?' Hunter very diplomatically queried as I madly snipped out literally hundreds of identically shaped diamonds. To which I replied that yes they had quilts, but they didn't have MATCHING quilts, the quilt that my friend Rowan had made for Koen when he was born was really more for us (it sits on our bed, not Koen's) and really, you can't have too many quilts. I also made a quilt for the family before the transplant last year, when I was in quarantine down at the beach house (more on that later). It's a simple patchwork job which mainly consists of patches from scraps of sewing projects I've completed over the years. My wardrobe in a quilt, basically.

Fat quarters of wondrousness. You can see glimpses of these
fabrics in the new quilts I made.

Last year's 'family quilt'

So this year, for no apparent reason, I embarked on an even bigger quilt project - more than twice the work really, and much less energy and dexterity. Yesterday I finally hung up Saskia's quilt on the clothesline after a final rinse out when I realised that one of the diamonds had a big texta mark on it.

Saskia's 'harlequin' quilt

The yellow diamonds are turmeric-dyed and the final wash rinsed out its 'zestiness' but I kind of like how it now looks 'antique'. It's so far from perfect - the corners don't match up most of the time, there are some seams which are pouchy or crumpled, but I actually kind of like that about it too. 

Koen's quilt is very close to being finished - I just have to finish off the navy edging - it's got a more classic diamond-star pattern which was painstaking but fun to work out. Because I am not following instructions (why make it easier for myself??) I worked things out the hard way. I started by piecing random diamonds together and it took some time to work out that I needed to make star formations, and how to do this. 

Anyway, I am nearly ready with my next instalment of the blog 'story' but this is just a quick catch-up of the last few months.

The kids had their 5th and 2nd birthdays! We had a lovely party at home. Here we are singing a song about how wonderful it is to have paid for catering from 'The French Lettuce' rather than slaved over sandwiches since dawn.

STEROID-WATCH. My head continued to expand as my steroid dose pushed to the max to take the fight to a new tumour pushing on my trachea.  The dose went all the way up to 75mg and I became very self-conscious about my puffiness. So what do you do in that scenario? Why, dye your hair pink, of course.

Activewear. Activewear. Going to radiation therapy in my activewear.
Paying homage to the ACTIVEWEAR trend, I donned my retro floral Bonds tracksuit for the radiation therapy which laid waste to that nasty throat tumour (and one or two more).  The activewear was also a shout-out to Ruby Cruz, a friend of a friend who was undergoing Total Body Irradiation in preparation for her stem cell transplant in London. She has now had the transplant after an extraordinarily protracted international search for a donor.  A reminder that we don't all find matches that easily and plenty of people never find one. It's a particular problem if you are from an 'ethnic minority' - the wealthy western countries that have comprehensive donor registries are bursting with donors with Anglo-Saxon-Celtic genes, but are a lot more scanty by way of say, Polynesian ancestry. Ruby, being of Salvadoran ancestry, had a long, anxious and involved search.  Her friends rallied their resources, and metro stations, billboards and the internet were bombarded with posters asking for potential matches to come forward. It was amazing. Donor drives took place across England, the States and Canada. Eventually a donor was found with Brazilian heritage and the transplant could go ahead.

My hilarious little nugget Saskia continues to keep us laughing and sane.

Koen continues to amaze with his styling of beanies and detailed interest in Nexo Knights Lego.

My work was included in the Art Gallery of Ballarat's beautiful publication 'Stories from the Collection'. 

My wonderful husband Hunter started up his own podcast 'Two Shrinks' with colleague and friend Amy Donaldson. He he is having a babychino with Koen at A1. The photo and the news are unrelated. But he has nice eyes in this photo.

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.