A SURVIVAL KIT

FOR VICTIMS OF CHEMOTHERAPY

Jutta Sund

This book is dedicated to:

Eliot, who shared every moment of the mad ride and never stopped

pedalling;

Max and Tom, who kept the cancer patient firmly attached to everyday

life and occasionally made her forget her place and play soccer with

them;

All other loved ones, friends and acquaintances, who supported us

from both sides of the world, each in their own wonderful way.

Foreword To be told that you have cancer is not something you would wish upon your worst enemy. A cold fear of death immediately blows in from nowhere, and no matter how you try to shut it out, it howls outside the windows like an ill wind. It is fairly challenging to face death bravely when it’s already inside of you gradually eating you alive, and you have no idea whether you’re going to get it in time. And the panic level rises exponentially the moment you think about your kids. In the beginning two things kept me going: pitch black humour (among other things, I promised a fellow Atheist to send her a sign from the other side, if it turned out we had both been wrong) and conscious and unwavering optimism (there was no other way to talk to the kids about cancer). The whole family held on with both hands to the knowledge that my breast cancer could not have been found much earlier. And as time passed, I had to reassess and update my life-long image of myself: somewhat unbelievably, I am a cup half full –person after all! That realisation will end up at the very top in the final balance sheet. My early diagnosis was the result of an incredibly lucky series of events, and it leaves me forever grateful to Fate and a group of brilliant, thorough and dedicated

doctors. Once the cancer had been removed from my breast and sentinel nodes declared clean, I was already fairly certain that Mr G Reaper had only stopped for a little chat this time.

But given my cancer cells were found to be aggressive, it was recommended to me that I continue with the works: chemotherapy, radiation therapy and, to top it all off, five years of anti-oestrogen medication. I did not hesitate a moment: there was no way I was going to give this bastard of a disease any chance of rising from the dead. Nevertheless, after my first lot of chemo I despised not only death but life itself: I found myself stuck in some ludicrous parallel universe where my poor body was subjected to such punishment I didn’t know whether to laugh or cry. Once I stopped feeling nauseous, I decided that if I don’t laugh, I and my whole family will go under. So we laughed. This survival kit was born out of those laughs. It is my testimony to the fact that despite all signs to the contrary, one does get through chemotherapy. They tell me some lucky people even stay sane.

Jutta Sund Patient

The cold facts

Chemotherapy involves using so called cytotoxic drugs to kill cancer cells. Cytotoxics travel all over the body in blood circulation, and can in this way find and kill small tumours or cells outside the main tumour, which may not even have been detected in examinations. The treatment is effective but usually has some side effects, for two main reasons:

Chemotherapy damages any cells that divide rapidly, and is not able to distinguish between ‘good’ and ‘bad’ cells. Therefore it also attacks many perfectly well-behaved fast dividing cells such as those that make up hair, bone marrow and mucous membranes.

Cytotoxics also mess up the human immune system fairly efficiently. They can damage white and red blood cell as well as platelet production, and thereby cause exhaustion and susceptibility to infection.

Chemotherapy is no party. But feeling rotten for a while is still better than the alternative – most days.

Possible and impossible side effects Everyone has an image of cancer patients as pale grey, hairless stick figures, but we come in all shapes and sizes. I personally began to feel dizzy a week before my first treatment when I got around to reading all about the possible side-effects. Doctors and books assure you that nobody gets all of them, and that you may be one of the lucky ones who get none. On the other hand, let me tell you, you may come face to face with your own uniqueness as you start to tick possible side effects off the list one by one, or - even better - noticing things that were not even on the list! Luckily almost any side effect can now be treated (for a few months I, too, became the best customer of my local chemist), and today's chemotherapy focuses strongly on the prevention of nausea. Nevertheless it has to be said that chemotherapy is a tough experience, and those individuals who hardly slow down during their treatment are probably either mutants or aliens. The facts of chemotherapy being what they are, coping with the side effects is to a great extent a matter of mind over body. Over the weeks, I developed a bit of an 8-point battle strategy which I revisited anytime it was all really getting to me. For the most part it did help, and this is roughly how it went:

Stay positive They say that all feelings are allowed for a cancer patient. Maybe, but if you give panic any space, it will pull the rug out from under you. As soon as I had dug myself out of the hole blasted by the shock news, I took great care not to go anywhere near it again. I had a husband, two kids, a cat, three hens, family in Finland and family in Australia - I was simply too busy to die. Nor could I afford to get depressed, with everybody else getting their strength and belief in the future from how I was going. And then reflecting it all back to me. By the time chemotherapy began, I had come to believe blindly in the power of positive thinking. I also never really felt angry about the unfairness of life. Why me? Well, why not? Fate has no favourites. I did not choose any of this, but I can choose what I do with it. And in any case, I didn't have it in me to be angry through all the treatment, I was feeling rotten enough as it was... Of course it gets you down every now and then. You feel like your whole life is on pause, you can't even plan the next day, let alone the next year. I hit rock bottom after my third and second last infusion. I felt nauseous, feverish

and cold, and all my bones were aching mercilessly - and the whole time I knew I'd still have to go through this once more. Then again, when the last infusion came around, and even though I felt just as crappy, I couldn't have cared less: it was all over!

Keep the perspective If you end up doing chemotherapy the tough way, it is difficult not to get down every now and then. And it's not necessarily that easy otherwise either. Some days you simply feel like you've had enough and you wonder whether it's all really worth it. The answer, of course, is crystal clear: yes. Your oncologists would not even have recommended this circus to you if they did not think it was worth it. In my lowest moments, a few questions usually helped me to shift my focus back to the main game:

Why are we doing this?

What would be the alternative?

How long will this take and how big

a chunk of my life is that?

In other words, the moment you put your doubts on one side of the scales and death on the other, your mind tends to clear up without too much trouble. Sometimes the magic word could also be "temporary". No matter how you feel in the throes of the treatment, they will one day be over. And not only that, but you will recover from them, too, and your life will continue.

Take one day at a time Particularly during the first week after infusion, it doesn't hurt to remember that tomorrow is a new day. Side effects come and go, but they are normally over in a couple of days. By which time you might already have moved onto another one or two... The fact that the side effects may not be the same or the same intensity after every infusion also keeps it interesting. Hence, after the Thursday when vultures already began circling our house, came the Friday that saw the patient enthusiastically vacuum clean the whole abode. On the other hand, a bad day was sometimes followed by an even worse day. I quickly realised that it was best not to plan too much but take my daily marching orders from my own body. And remember that each treatment cycle has not only bad days but some really good ones too, particularly after the first post-infusion week. So I tried to get up every morning at the same time and see how I feel. Only then did I decide what the next step would be. A couple of times it lead me back to bed. But often also out for a walk. .

Forget about achieving anything! The fourth day after infusion was my worst day every time. I only had one wish for that day: that it be over quickly. Often I couldn't even read, let alone exercise, and I ended up lying on the sofa staring out of the window and trying to focus on the thought that tomorrow would be a better day... And it was.

The only reasonable objective for the first post-infusion week is to somehow survive: eat something every day, rest as much as possible, get out and go for a walk if possible. Everything else is a bonus.

The reactions and limitations of my own body became evident to me fairly soon after my first treatment session. There was no point comparing myself to others: while some people may be retain the energy to home school their three children throughout half a year of chemotherapy, the rest of us mere mortals feel sufficiently weak not to even want to drive the car. Still, a chat with fellow sufferers was sometimes quite liberating: you realise that you are not alone in this. And that you will all come out of it too.

My life followed a particular routine during chemotherapy: I got up in the morning at the same time as my family, did a little walk, pottered about till lunch, had an afternoon nap. Sometimes I even had energy for more. I was desperately trying to be kind to myself: if I ended up back in bed instead of a morning

walk, that was probably more important for my recovery than the walk.

And that is what the weeks in between treatment sessions are all about: recovery. For the purposes of beating cancer, no other objectives matter in the least bit, as the next infusion cannot take place until you have recovered from the previous one. And until all treatment is completed, those pesky cancer cells may still be floating about in your system.

Accept help

This was absolutely one of those times in life when one had to ask and accept help in running everyday life. For an over-achiever like me asking for anything does not come naturally, but luckily my family, friends and community couldn't have cared less about my stupid pride: they took over, cooked food, drove my kids to their after school activities or me to my treatment.

But what really kept my head above the water was all the mental support I got from family, friends and even people I hardly new. People called me, emailed me, brought me flowers and chocolate, checked on me. They say you find out who your true friends are in bad times. I had never realised I had that many! People’s desire to help me was one of the best aspects of an otherwise unpleasant experience. Talking to people also made me realise how common breast cancer is. Everyone knows someone who has had it, and every woman is acutely aware that they could be next. Maybe for this reason the diagnosis and treatment of one touch

everyone around her too. Perhaps for the first time in my life I humbly and gratefully accepted help. I can’t guarantee it’ll be any easier for me to do that in the future, but I am 100% sure I will give all my support to the next friend who gets the bad news.

Eat - even if you have to force yourself to

My previously close and highly rewarding relationship with food changed completely during my chemo treatment. Not that nausea stopped me from eating. Nor was I not hungry, although this sometimes happened for a day or two after infusion when my whole body had been pumped full of fluids. While swallowing was a challenge with a sore mouth, throat and oesophagus, that, too, was only temporary. The main problem was that my taste buds changed. Some of my favourite food started to taste bitter, and just about everything else tasted like cardboard. Nice wines were wasted on me, and for the first time in my adult life, I had a completely dry three months! After the first two treatment sessions my sense of taste recovered for a glorious weekend before the next infusion, but then that stopped too.

Hence eating became a purely scientific venture: a certain amount of certain nutrients needed to pass my lips every day regardless of what they tasted like. I actually managed to do pretty well: I did not lose a single kilogram during the 12 weeks of chemo.

Don't lose your sense of humour

Humour turned out to be one of those renewable sources of energy that got us through some difficult situations. I noticed I was resorting to it particularly in relation to changes in my body and looks: it helped me keep my period of sickness separate from the otherwise healthy and perfect me...

Losing my hair gave the whole family some laughs. My eldest son had already prepared for the occasion by researching how to turn me into the bald, slimy, yet somehow attractive Borg queen from Star Trek - later he tried to get me to go to the shops wearing Borg implants, but even my sense of humour has its limits! As my hair started falling off I gave the boys free hands to give me a crew cut – they were very happy with their handiwork. When the younger one later helped me wash my wig, we both cracked up at the realisation that a wet wig is almost indistinguishable from a wet rat... The pains and aches caused by cytotoxic and other drugs were more challenging to deal with. Some days it was questionable whether I was really 46 years old, or already pushing 86. And that was on the good days! It required super-human effort to come across as young, fit and fast during my daily walks, with my knee joints aching with every step as if I had arthritis. But bloody hell if I wasn't going to try! I did lose my sense of humour briefly on the morning I woke up shaky and feverish, and ended up at the local hospital's emergency department. Blood tests confirmed that my white blood cell count was non-existent, and my own bacteria were having a party. Intravenous antibiotics put a stop to that celebration, and even my sense of humour returned from its walk about. It would be a miracle if chemo didn't get the cancer, given it was busy killing every other cell in my body!

Try not to forget who you really are

Even though chemotherapy can make it hard to recognise yourself from the nauseous, unfit, cranky and/or depressed character who has moved in and settled on your sofa, it is still you inside that wreck of a body. And you will still be there when the whole cancer business is over. Even though everyone is focused on your illness right now, there will soon be time when cancer is just one milestone in your personal history. Having said that, I, for one, was not prepared for the fact that not all effects of chemotherapy disappear as soon as treatment is over. If there was anything I was indignant about, it was what cytotoxics did to my identity! Before chemotherapy I was a fit, healthy, young, Scandinavian blond. Once treatment started I lost health and fitness first, then the long blond hair. As a parting gift, chemotherapy plunged me into menopause. And when my hair finally grew back, it came back dark and curly... So in half a year I had transformed from a young, athletic Scandinavian to a sickly, old, Eastern-European babushka. Or that's how I felt. And that got on my nerves even more than the temporary inconvenience of side effects – it was not fair, and it certainly wasn’t on! I had to work for half a year to get my fitness back, and my hair went completely wild, but mentally I held on to my inner me with both hands. Once again, an attitude check and encouraging words by family and friends ("It’s definitely an improvement from no hair at all…") did the trick. As did a sense of humour: Many little practical jokes life plays on you will shrink into nothing if you can just laugh at them. And when everything else fails, there’s still make-up!

Before During (with wig) After

It was not all bad, either. The best thing cancer ever did to me was to shape my attitude to life. If I'm really lucky, I'll never stress about trivial little things anymore. It is just so fanmazing to be healthy again!

Final words

As I am writing this, I have just been to my first post-treatment mammogram and ultrasound. The cancer was nowhere to be seen.

It would appear, then, that life goes on for now - and is finally getting the appreciation it deserves too.

I'm back!

30 August 2011