5. The Aftermath

When radiotherapy was over, although I was enormously relieved, I was still very ill.  My mouth was burnt and full of ulcers, my ears were damaged by radiation and were so full of fluid I was half deaf.  I was still throwing up daily and was taking so much medication my daily regime filled two sides of an index card.  I was discharged from hospital with a naso-gastric feeding tube still in place, and this was to be my constant companion for the next two weeks.  Twice a day I connected the tube to a bag of pre-mixed liquid food – it was like baby formula really – that hung from a frame, and for the next 6 hours, the contents of the bag slowly dripped through the tube, into my throat and down to my stomach.  The machine that regulated the drip made a soft clicking sound, and a regular high pitched beep, and for the two weeks I was connected to it, the whole contraption became sort of like a little pet, that I carted around from room to room.  At night, it sat by the bed keeping Andrew awake – with my newly deaf ears, it didn’t bother me too much. 

 

A community oncology nurse and dietician made regular home visits to make sure that I was coping ok with all the medicines and feeding well.  The array of medication was dizzying.  I had copious amounts of morphine, to cope with the pain, as well as a variety of medications to counter the side effects of taking so much morphine.  I had steroids, which let me tell you, when you’re extremely ill are a fabulous shot to the arm, so to speak.  They perked me up no end, but unfortunately they are hard to stop taking, so I was gradually reducing the amount I took each day. 

 

By the most unfortunate stroke of bad luck, three days after coming home I got a terrible stomach bug that made me throw up constantly for about 12 hours.  If you are squeamish you might want to skip the next bit.  An unfortunate side effect of my new immovable soft palate was that when I threw up, the opening between my nose and my throat didn’t close.  This meant that vomit travelled in equal measure through my mouth…and my nose.  Throwing up with a very bad tummy bug was a violent, messy affair.  So much so, that I actually vomited up my naso-gastric tube.  One end was coming out of my nose, and the other coming out of my mouth.  Yep, it was bad.  I stood for a moment regarding the situation in the bathroom mirror.  My face was deathly pale, but covered in a sheen of sweat and streaked in vomit, my hair was dishevelled as a bush and in parts plastered to my face. The feeding tube swung gently from my mouth and nose, and I could feel it rubbing against the back of my throat, which nearly made me throw up again.  Not for the first time, I wondered whether things could get any worse, and whether I might just give up one day and refuse to deal with this crap anymore.  Instead, I pulled the tube out and threw it in the bin, cleaned myself up, and the next day the community oncology nurse put in a new one. 

 

Financially, we were in an incredibly lucky position.  My employers had comprehensive income replacement insurance cover for all employees, which covered 100% of my salary for the first three months of illness, and 75% after that.  The end of August 2007 would mark three months off work, and that meant our nanny Judi had to be let go.  In another stroke of luck, Lulu was turning two that month and could start going to pre-school with Madeleine, which meant that for 6 hours a day I could sleep and recuperate, before picking the girls up at 3.30 each afternoon. 

 

The last day Judi worked for us was also Daffodil Day, the New Zealand Cancer Society’s annual appeal day.  Everywhere I went, people were wearing a yellow daffodil pinned to their lapel, and suddenly it felt like I was being assaulted by cancer on every front.  I had a sense of mounting panic at the thought of having to look after the girls, even only for a few hours a day.  Although by then I had managed to transition off the naso-gastric tube to pureed and soft food, I still felt like a wreck and, more upsetting, had totally lost confidence in my ability to be a mother.  I felt weak and hopeless, and completely pathetic for being so feeble. 

 

That afternoon was really my lowest point for many months.  I got into a stupid fight with Andrew over something meaningless and stormed off.  I can’t remember exactly why, but the garage was full of cardboard boxes that for some reason I decided simply had to go to the recycling depot that very minute, so I set about breaking them down into a stack of flat boxes, and shoving them into the boot of the car.  I spent an hour ripping off tape, stamping on boxes that wouldn’t flatten, hurling things around, and crying my eyes out.  Andrew was completely at a loss as to what was wrong with me, and I couldn’t express it myself, but looking back I can see that I had come as close as I ever came to breaking down completely.  Sometimes I thought it might be easier to curl up in a ball and rock slowly back and forth until I was carried off to the loony bin, just so I could surrender to the will of someone else – I wonder if we all think about doing this at some point in our lives.  But most of us don’t, and I didn’t, and eventually I calmed down and put the anger and grief to rest for another day.

 

Around this time, I decided to take the advice of my oncologist and try going to a support group at the Cancer Society.  I had blanched at his suggestion at first, because to me the words “support group” conjured up an image of a group of earnest yet miserable do-gooders with trivial complaints, sitting about dunking ginger nuts in lukewarm cups of tea to whinge and mutually reinforce their misfortune.  Actually, it was the complete opposite.  I went along to Can-X, a group of thirty-something year olds who felt as out of place among the septuagenarians at the Cancer Society as I did.  They were all just like me, with families and careers, leading busy and fulfilling lives that had just slammed to a halt with the diagnosis of cancer.  They were all scared and pissed off, grieving for the life they thought they were going to live, and all struggling with how to live with the looming threat of recurrence of their cancer.  Some were not even that lucky, and were already in palliative care.

 

We had all heard well meaning yet misguided advice intended to comfort along the lines of “well, I could be hit by a bus tomorrow!”, as if that extremely remote and avoidable threat were anything like the prospect of cancer returning.  We had all contemplated pushing people who said this under the next available bus.  We had all felt guilty when we had ducked out of planned events, catch ups with friends, playing with our children, staying at the office when everyone else was busy and really needed a hand, because we were just to ill and exhausted to be there. 

 

A lot of our group were planning or had recently been on a dream overseas holiday - without saying it out loud, we were ticking things off our “must do before I die” list.  Some were desperately dealing with the physical after effects of cancer treatment – infertility, chronic pain, ongoing nausea – while others were battling financially, single parents barely able to stay afloat.  I gained enormous comfort from the group, and miss them a lot now I’m not in Wellington anymore.

 

I was slowly returning to good health.  My mouth healed enough to get back to normal-ish food after a month or so and I finally weaned myself off morphine.  This was a huge relief, as morphine elevated my already vivid dreams into complete madness.  I had horrific nightmares almost every night, Andrew had to wake me up regularly to stop me tossing and turning and crying out. 

 

I now have a permanently dry mouth as radiotherapy damaged my parotid salivary gland to such an extent that it no longer really works.  This is the largest salivary gland, and you’d be amazed how difficult it is to eat normal things like bread and cakes, biscuits, meat, apples, spicy and sour food without the body’s natural method of breaking down food and diluting strong flavours. 

 

In May 2008 Andrew and I had the most wonderful holiday of our lives - two weeks in Italy, which you can read all about on this blog.  I felt like I was in heaven, seeing things I had dreamt of seeing for over half my life.  I returned full of life and determination and started work again.  The deafness in my left ear seemed to be permanent and I cried when I was fitted with a hearing aid.  I couldn’t work out why I was so upset, but ultimately I think it felt like a sign of old age and impending death, so once I realised that and gave myself a good kick up the bum I made friends with my hearing aid and became grateful for the fact that when I’m in the car and the girls are making a racket in the back, I can just turn it off and instantly hear 50% less of the shambles unfolding behind me. 

 

The untold part of this story is my ongoing battle with the mental scars of a cancer diagnosis at the age of 32.  Attending the funeral of a school friend and then being diagnosed with the exact same cancer one month later is a blow that I still haven’t recovered from.  And the presence in my life of the two most wonderful, gorgeous, loveable and delightful people in the world, my two young daughters, is both the source and the comfort for my greatest mental struggle.  There is nothing more important than being here for them, nothing more terrifying than the prospect that I won’t be. 

 

Every time I have a check up with my ENT or oncologist I feel afraid, and I’m not sure that will ever go away.  I don’t imagine a life-span stretching into old age, and I am completely unable to take seriously things that I might once have found interesting or worthwhile – the reform of local government, the brain drain, tragic French movies, earnest debut novels, poetry.  I don’t even really share the sense of urgency and commitment of my legal colleagues when pressing work matters loom and must be dealt with immediately.  I do my best work as quickly as I can, but I just don’t think any of it is worth stressing about, when no-one will die because of anything I do or don’t do.

 

This might sound good, and I think most of it is.  But the monkey is still on my back, and the elephant is still in the room. Still, as we lawyers (and other people I’m sure) like to say, how do you eat an elephant?  One bite at a time.  And as Sir Winton Churchill said: “When you’re going through hell, keep going.”  My brother send me a card when I was in hospital with that inscription, and although I’m not going through hell anymore, or anything like it, I’m definitely still going.