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Authors: Bernadette Bohan

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BOOK: The Choice
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I lay there waiting to be sick, as I had heard I would be. Nothing. Eventually I nodded off, and when I woke I saw Gerard coming towards me. Except it didn't look like him – it was a ten-foot high version of him. I was frightened and tried to sit up, but the bed seemed to be moving. I held onto the sides and cried out, feeling him put his hand on my shoulder to calm me. The steroids again – I hated feeling like this. I still showed no signs of sickness, and two days later I was told I could go home.
Before I left I was given a bone scan to ascertain whether the cancerous cells had reached my bone marrow. This I thought was fairly routine and I went through the procedure, drinking that horrible drink in something of a daze – until the radiographer dropped her bombshell.
‘Because of this scan you will be essentially radioactive for a day or so. Don't go too near any children or anyone pregnant for twenty-four hours.' I couldn't believe it. This was all I needed – how do you explain that to a five-year-old who has not seen her mother for two days?
As I left the nurse handed me some tablets. ‘These are for any sickness you might experience,' she explained. I looked at them and recognized the packet. I had taken them before for motion sickness (I have always been a bad traveller) and felt encouraged – perhaps I would not be feeling too bad after all. I could surprise Julie and be there for her tea. How wrong I was.
I stumbled through my front door and had to cling to the hall table – it seemed as if the coats were falling off their hooks on to me. Scared, and wanting these strange feelings to stop, I went to bed and tried to sleep. But that evening I started to vomit, and could not stop. I vomited and vomited, bent double over the loo. I vomited until I thought I could vomit no more, and still it went on. Each time I felt my stomach rising I could hear myself swearing. Was that me? I was coming out with foul words I hardly thought I knew. Sarah must have heard me, for she came into the bathroom at one point. ‘Mum! You look awful. What can I do?' She came over and held my hair back while I retched. She was so gentle, her love for me shining through when I desperately needed her most. Then Julie came up. ‘Are you sick, Mama?' I could see she was frightened.
‘Yes, a little,' I managed to stammer. ‘Don't you worry, I'll be better later. Go play in your room for a while and Sarah will be with you shortly.' I edged away from her, anxious not to zap her with my radioactive body. But she lingered, reluctant to leave me, and curious too. Being sick was something of an event in our family, and Julie was always eager to be involved. I knew she wanted a hug – she hated seeing me ill. Eventually I persuaded Sarah to take her away and occupy her. ‘I'll be fine up here by myself for a while. Hand me a cold flannel before you go. Oh, and give Dad a call, will you?'
When Ger came home he could not believe the state of me. He knelt beside me in the bathroom and stroked my hair. ‘God, Bernie, what have they done to you? How are you going to make it through another seven sessions of this?'
‘I'll do it because I have to. What else can I do?' I said through gritted teeth. He was called away to the phone, and for what seemed like hours I stayed bowed over the toilet bowl, still suffering from the strange effects of the steroids, not really knowing where I was or how long I had been there, unable to do anything other than vomit and wait for it to stop. My every instinct told me this could not be good for me.
That night Ger and Sarah put Julie to bed. She asked them to send me in to kiss her goodnight, but fortunately she was so tired that she didn't make a fuss when they told her I was busy. I continued throwing up non-stop all through the night and into the following morning.
It turned out that the telephone call Ger had taken that evening was from a woman I had met in the hospital a few weeks before. Her daughter had been through chemotherapy, and I had told her when I was due to start the treatment. With the unerring instinct for empathy that only those who have been through this particular mill display, she called because she knew there would be someone in our house who would need to talk to someone who knew. ‘I have never opened up to a stranger like that before,' admitted Ger to me the next day. ‘I told her everything – she really seemed to understand.' That was when I realized that Ger needed as much support as I did, although it was of a different kind. Like many men he did not find it easy to ask for help, but when it was offered he accepted it gratefully.
The following day I was still being sick. I had a raging thirst, but all I could keep down were sips of green tea. It was a Saturday, and I was so thankful to be able to rely on Sarah's help with Julie, who appeared in my room that morning looking anxious.
‘Are you better yet, Mama? Can we have a cuddle?' As she came close to the bed I cried out in alarm.
‘No, honey! Mama has had a special treatment that means it isn't safe for you to touch me for a while.' They had told me one day, but I thought I should leave it two, just to make certain.
‘Can I sit on your lap?'
‘Not until tomorrow. We'll have lots of cuddles then.' She turned away unhappily. Damn this bloody chemo, I muttered angrily to myself.
Richard, meanwhile, was away on holiday with his friends in Greece. When he had realized that it would coincide with my starting the chemo he immediately offered to stay home, but I would not hear of it. I felt sure it was important for him to carry on as normal and insisted he went off as planned. I should have guessed that he would call, but when the phone rang as I sat in bed that morning with a sick bowl on my knees I reached over automatically to answer it.
‘Mum, it's Rich. Are you OK?' Oh no! How can I hold it together to talk to him now? Sarah suddenly appeared at the door, mouthing
Give me the phone!
‘Well, I'm all right,' I said, trying to talk in a normal voice, willing myself not to vomit.
‘What about the chemo? Are you sick with it? How has it made you feel?'
‘A little queasy on and off, a little bit sick you know, but I'm grand. Anyway, that's one down, only seven to go.' I wondered if he knew I was lying.
Don't you dare throw up all over the bed! I'm not clearing it up!
Sarah was furiously miming her distress. I knew I had to finish the call. I also knew she would clear up anything, no questions asked.
‘Are you having a good time?' I asked, determined to have a normal conversation. Richard chatted on about his holiday while I sat, head bowed over the bowl, and eventually I managed to say goodbye.
‘You can't carry on like this,' said Sarah the next day, all bossy. ‘Phone the hospital and tell them what's happening.' So I did, and I told the nurse on duty that I just couldn't keep up the vomiting. ‘Oh!' she said, sounding surprised. ‘What are you taking for it?' I named the drug. ‘That works for some people, but really I'm afraid vomiting is a very common side effect of chemotherapy. We normally start people off on the lowest dose to see how well they tolerate it. I expect you'll find that after four days or so the sickness will wear off.' Wear off? I thought angrily, it will wear me out.
Exhausted from the vomiting, still at sixes and sevens from the steroids, and desperate to feel clean again, I ran myself a bath. As I got in, Julie's little face appeared around the bathroom door. ‘Can I get in with you?' she begged.
‘Of course you can, hop in.' We splashed around for fifteen minutes or so when suddenly I remembered. The bone scan. I went cold – the water would be full of radiation. Sweet Jesus, how could I have been so stupid?
‘Julie, get out. Come on, quick smart – let's get out.'
‘Why, Mama? What's wrong?'
‘Just move!' I almost screamed. I plonked her on the bathmat and threw a towel at her. ‘Sarah?' I yelled. ‘Can you take Julie a minute?' Still wet, I rang the hospital in a panic. They reassured me that it would be fine, but I could not believe them, questioning them again and again. ‘Are you sure, are you absolutely positively sure? I'm up to ninety over this!'
Feeling relieved, but not entirely reassured, I got dressed and went to see to Julie. Sarah said she had shut herself in her bedroom and would not let her in. That is where I found her, tidying her room. This was not typical – she was very much a normal five-year-old, and tidying up did not come naturally to her. Yet there she was, Lego miraculously back in its box, books on the shelf and all her soft toys on the bed in a neat row. As I went in she was picking up beads and replacing them in a basket. If I was a psychologist I might have thought that she was perhaps hoping that by imposing order on her own small world she would be able to make the chaos around her disappear. Or that by being ‘good' she would be rewarded with a mummy who was well and happy again. For some reason I suddenly remembered an imaginary friend I had invented as a child – I would often be found at the end of the road, my little suitcase packed, running away to stay with ‘Catriona'. What a complex life of the mind little children lead.
‘What's wrong, love?' I asked. She said nothing, and just shook her head.
‘Come on, you can tell me. What is it?'
‘I don't know,' came a very small voice.
‘You don't like Mama being so sick, is that it?'
At that, she burst into tears, made as if to rush towards me, then stepped back and threw herself on her pillows. I sat on her bed and tried to gather her into my arms.
‘Don't, Mama! You said you were not allowed to touch me!' Of course, I suddenly copped on. The poor little mite – as if her world hadn't been shaken enough with me going into hospital, the strange atmosphere in the house, her mother throwing up not just once but constantly, when all she wanted was to be cuddled and comforted and to be told everything was going to be all right. The very thing I had been forbidden to give her was what she needed more than anything else. It had been two days – surely that was enough now.
‘Julie, pet, that time is over now. I know it has been hard – I need a cuddle from you too. Listen, sit up on my knee and tell me all about it. There's nothing like a good cry in your Mama's arms.'
She lay on me then, and cried and cried. I held her while her small body was wracked with sobs, her tears soaking into my shirt. ‘It's OK, everything will be fine, don't you worry,' I murmured repeatedly, kissing her head, smoothing her tears away with my fingertips. ‘Mama's sick at the moment, but I will get better. I need to go to hospital a few more times, and the medicine that makes me better also makes me feel sick.' I tried hard to put it as simply as I could, and gradually her sobs subsided. I wondered then if I should have sent her to stay with her grandmother Anne for those early chemo days. My little pet, still only a baby, having to deal with all this: no matter how hard we tried to protect her, we could not keep all of it away from her. Now when I think about it I think we did the right thing. Yes, she was frightened, and yes – she saw me sicker than I have ever been. She dealt with her fear, and came through to the other side. She saw me at my worst, and she saw me gradually get better. I feel proud that we stayed together as a family through those awful dark days, and I was so heartened to see how Julie gained strength and character over that difficult year.
Still I continued to read and read, determined to find answers. Surely it was more than a coincidence that so many of these books mentioned juicing as the best way to give your body massive amounts of the anti-oxidant vitamins, as well as the vital minerals it needed for recovery? I had to sit up and take notice. I found an old juicing machine I had bought years before when Leslie Kenton had made raw juice fashionable. It didn't work very well, and was difficult to clean, but it was a start. (‘Not that again,' groaned Ger). I was starting to suspect that traditional medicine might not hold all of the answers. Next I heard about some digestive enzymes that were widely available in health-food stores – they would enable me to digest more effectively the little amounts of food I was able to keep down. I tried them immediately. Chemotherapy weakens the whole digestive system, and until then anything I ate sat in my stomach like a block of cement; with the enzymes I felt a dramatic difference and I was able to eat without a problem.
I had only just embarked on my course of eight chemotherapy sessions – a treatment that felt utterly barbaric – but simultaneously I was already starting to discover ways of treating myself, because I had to. Slowly but surely, a new dawn seemed to break. It seemed that there might be simple things I could do that would not only ease my way through the chemotherapy, but
also
help me recover from the cancer itself. Bolstered by these new thoughts, I became determined to save my own life, and I felt sure I could see the way forward. This was my chance: probably my one and only chance. It was going to be a rocky road, but one that I did not flinch from following from this point on. As I saw it, I had a choice. To do as I was told and wait and see whether I lived or died. Or to do as I was told and also find out everything I could about how to save my life. And – most of all – carry it through.
Chapter Sixteen
 
Changing Over
‘O
ne down, seven to go,' my friend Patricia said to me after that first session.
Such a simple phrase, but to me it was as if I was being asked to go mountain climbing without oxygen, ice picks or cold-weather gear. Each one, I felt, was going to be a separate peak to scale, each with different problems, different reactions, and I knew that my immune system would steadily become weaker as each blast of chemo took its toll. The very first session had been shocking in its newness, although in a sense there was something to be said for not knowing what to expect.
‘Patricia, it's only August. I won't be through this until next February or March. I just don't want to think about those seven sessions, let alone the twenty-five radiations – whenever they start.' It was best for me not to try to imagine the unimaginable. What I was focussing on was life after chemotherapy. I held this Promised Land in my mind throughout the following months, planning what I was going to do afterwards. ‘When all this is behind me', I kept saying. ‘When life returns to normal.' The thought that I might be dying I kept to the darkest recesses of my mind, willing myself to focus on my belief that – horrendous as it was – the chemo was killing the cancer cells.
When I went into the hospital for my second chemotherapy session three weeks to the day after the first one, I was afraid, but I was forewarned. I had a brief appointment with the oncologist before going through for the chemo: he wanted to discuss my blood count and find out how I'd been. I wondered if I had reacted worse than most people did, whether I vomited more or less, whether other people were freaked out by the steroids. I didn't want him to think I was a baby, not able to cope.
‘How have you been, Bernadette?' he asked kindly. ‘I see from my notes that you were very sick after leaving the hospital last time.'
‘I was,' I admitted, reluctant to complain about this too much – after all, everyone knew chemo was no picnic, and I was so grateful that I was being treated. ‘But what was worse was those steroids you gave me. Do I absolutely have to have them along with the chemo? I don't think I can deal with what they do to my mind. It was scary.' I described the mind-warping hallucinations I had experienced.
‘I can take you off them, to be sure,' he replied, ‘but you'll certainly be sicker.'
‘I'll take the sickness.' So it was agreed – no more steroids.
I had only read a few books at this point, but I had started to learn about a whole new way of dealing with cancer that no medical person had ever mentioned. I wondered whether to broach any of these alternatives with him.
‘Is there anything I should be doing to help my body fight the cancer?' I asked, tentatively.
‘Plenty of fresh fruit and vegetables,' he answered briskly. I nodded, but I didn't mention that I was juicing like mad already – he could have no idea just how many portions of fruit and vegetables I was consuming daily.
‘I've heard that it's helpful to have a positive mental attitude.' I tried another tack.
‘That's right. Chin up, you'll be fine. Right then, see you next time, Bernadette.' Clearly he wasn't going to be drawn on this point. I left hurriedly, conscious of the queue of people waiting to see him. I always felt guilty for taking up too much of his time.
Back home, the vomiting started again, and I realized that, despite my display of confidence in the oncologist's surgery, I couldn't take the sickness much longer. Now, after all, the time had come to find out more about chemotherapy, and I grabbed Jane Plant's book
Your Life in Your Hands
. It was the book that Jessica's mother had given me back when I had first been diagnosed. In it I read about a drug called Zofren which blocks the receptors in your brain which control the vomiting impulse. It wouldn't stop me feeling nauseous but it would stop the vomiting. Why hadn't I been given this? I called the chemotherapy ward and they managed to get a prescription phoned through to my local pharmacy.
That afternoon Sarah, Julie and I made our way to the chemist's. I was shaky with lack of food – again I had only managed to keep green tea down – but I was determined to get there. The pharmacist came out from behind the counter with the tablets. I knew her quite well: her mother had been Richard's head teacher.
‘Mrs Bohan?' I could see from her expression that she knew exactly why I needed this drug. ‘Take these every four hours on the days you feel you need to. You'll find if you purée food you may be able to keep it down.' Ugh. The idea of food made me feel ill again, but I appreciated her advice. I took the first tablet as soon as we got home. It worked, and although I could feel my body rebelling against the foreign chemicals that had been injected into it, I was no longer wracked with days of vomiting. But I didn't like the idea of taking too many drugs, particularly on top of the chemo, and I managed to reduce the Zofren to one and a half days. What more would I discover in these books? Like a contestant on
Mastermind
, cancer was my special subject and I was fast becoming something of an expert.
My weeks and months started to take on a certain shape. I would go in for chemo on a Thursday, after which I would be feeling so rotten I would need to go to bed until the Sunday. Gerard would take the Thursday and Friday off; on Saturday Sarah would be at home to help; then the whole family would be around on the Sunday. For those first four days I would be unable to do anything at all, feeling nauseous, weak and isolated, but I would be determined to be up again on the Monday so as to be able to look after Julie and take her to school during the week. I would then have nearly three weeks to get my strength back, before going for the next chemo session on the next allotted Thursday – although my feeling of dread would increase as the day approached. During those precious days when I felt a little stronger, I read and I went to all the lectures and talks I could find on health generally, and on cancer specifically. One day I'd be sitting in a draughty church hall, on another in a smart hotel or a busy health-food shop, and perhaps the following week in an adult education institute. I wasn't fussy, just hungry for information, desperate to figure it all out. And all the while I was mindful of keeping my strength up, of not pushing my body too hard when my white blood cell count was low, of avoiding crowds just after the chemo sessions. The last thing I wanted was to be laid low on any of my ‘well' days, although it did happen once and I had to go back to bed with a stomach bug. I was furious that I had been robbed of a few good days.
‘Ger,' I began, soon after the chemo had started that August, ‘I am going to have to make some changes to my diet.'
‘Oh yes? Like what?' He was reading the paper and wasn't really concentrating.
‘Well, I'm going to have to cut out dairy foods for a start. I've read in loads of places about what's in cow's milk, like hormones, antibiotics, pesticides and chemicals. It's quite hard for our bodies to digest, apparently. This book here is by a scientist who got breast cancer, and she points out that the incidence of breast cancer is almost non-existent in Japan where cow's milk just isn't part of their diet. She cut it out and recovered.'
‘That doesn't prove it to me. Let me have a look.' He flicked through the book for a while. ‘OK, well it's up to you. What about cheese – I thought you loved that?'
‘I do, but I'm realizing that some of the things I have been eating might be making me sicker. I'm also worried about what milk might be doing to Julie. I know Richard and Sarah don't really drink much of it these days, but I always thought it was a healthy drink for kids and she drinks loads.'
‘Fine,' he said, doing his best to be supportive. ‘I think you should give it a go – what can you both have instead?' I told him about soya milk, which I had seen in health-food shops, but a few months later I switched to rice or oat milk, which is easier to digest. Like the juicing, this did not seem to be a radical change, once I got used to the taste of the new kind of milk. I missed cheese at first, but I quickly found foods to replace it with.
At the same time I had given up caffeine and alcohol, and I was starting to cut down on meat and fish. Again, they are hard for us humans to digest. I did it by putting smaller and smaller portions on my plate until it got to the point, after about six months, that I was having just a tiny square of what I by then thought of as ‘cooked flesh' on my plate. I realized that it was so small it simply wasn't worth it, and I was more than happy to fill the space left by meat with more salads and raw vegetables. Of course I still cooked meat for the family, and the smell of good sausages on the barbecue would never fail to make my mouth water, just as the smell of freshly brewed coffee would make me long for a cup. Nowadays, I find the smells are enough – if I am foolish enough to try a taste, it makes me retch. I tried to get the family to make some changes along with me, but I found that was not so easy – it caused more arguments than I could handle. I didn't want them to feel I was criticizing them, nor did I want to force my new diet on them. The only thing I could do at that point was to lead by example, and like all mothers – who after all only want the best for their children – I tried to sneak in some changes without their noticing.
Making foods easier to digest was part of the secret, I was discovering, as it would free up my immune system to concentrate on getting rid of the cancer. Not only that, the mega doses of enzymes, vitamins and minerals – particularly the cancer-fighting anti-oxidants – were giving me a huge boost, and I was discovering all sorts of delicious juicing combinations now that I had invested in a new, more efficient juicer. Even Gerard and the kids were enthusiastic about the drinks I made them.
Sleeping was a problem, and I used the relaxation techniques I had learnt years before in my yoga classes – although in yoga you are supposed to stay awake, relaxed and ‘mindful'. Me? I just wanted to sink into the oblivion of sleep. As soon as I got into bed I would go through the routine, and as I got better at it, so my sleep improved. Gradually I would tense and relax every single part of my body, starting with my toes and working my way up to the top of my head.
I think I became one of those irritating patients who like to think they know more than the health professionals treating them – and that was before the internet really revolutionized the lives of patients. People I see these days at my talks are incredibly well-informed and up-to-date on the latest research. One thing I used to do, for example, each time I was given the chemo, was to ask the nurse to check that she was giving me exactly the right dose. After all, I had three separate injections, and I knew all the nurses were rushed off their feet. I had also read about someone being given the wrong chemo, with disastrous results. Once, this interfering stance did pay off.
‘What's that you're putting into me now?' I asked at one session that autumn.
‘Hold on,' the nurse sighed, ‘I'll check it for you.' I bit my lip, knowing she was annoyed. ‘It's just the steroids,' she said. ‘Don't worry.'
‘Steroids?' I gasped. ‘I'm not supposed to have them.' The nurse was incredibly apologetic. ‘I'm terribly sorry, so I am. I see now it is in your notes. Most people do have the steroids as a matter of course, and I should have checked properly.'
My menopausal symptoms had started to appear – with a vengeance. I was over at my friend Lorna's house one night with a group of girlfriends, and suddenly became totally overwhelmed with heat. ‘Bernie, you're flushing up,' said Mel and Helen. ‘I know, and I've got palpitations too. It's this damn chemo.' I stripped my top off and soon I was sitting there in my bra. Everyone laughed at me, but for me this was the best way to cool down, and – frankly – losing my composure in front of a few good friends was the least of my problems, and these particular women were among the best of their kind. Lorna handed me a large glass of iced tap water, and I drank it gratefully. Then I remembered a leaflet I had picked up a few days earlier on the water supply – it was still in my bag and I dug it out. ‘Listen to this,' I said to them, reading it out.
‘Irish tap-water is fluoridated with untreated agri-fertilizer waste. Dispensed by 450 Irish water schemes to over 2.7 million consumers, it is contaminated with lead, arsenic, mercury and chromium.'
I read on, and then passed the leaflet around. It made very uncomfortable reading, yet none of us could really believe that honest-to-goodness Irish tap water could be poisoning us and our children as this leaflet seemed to suggest. There was a website and a phone number. I'd have to look into this further when I had the energy, and meanwhile I'd start buying bottled water. (I later found out that this was not a good move either.)
BOOK: The Choice
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