Authors: Bernadette Bohan
The Choice (4 page)
Chapter Six
Â
Steroids: the Good â¦
I
t was 2am and I was cleaning the house.
The kitchen was pristine, the bathrooms were shining. I crept into Sarah's room while she was sleeping, and reached up to the cupboards above her bed. They need to be sorted out, I decided, and I need to do it now. I put Richard's felt pens back in their boxes in neat colour-coordinated rows. I glanced at his toy soldiers, piled on a shelf in the playroom where he had chucked them that evening. That wouldn't do. Moments later they were all poised in position.
When Ger got up at 6am to go to work his breakfast was ready and I was dusting the living room. âI feel so sorry for you,' he sympathized. âYou have been up all night.'
âDon't be sorry: I feel superb!' I countered. He laughed at me. âYou're my dream woman! I always wanted a wife who would keep the place spotless.'
âI don't know what's come over me,' I admitted. Normally I was a disaster in the house. I wasn't messy, but I wasn't particularly tidy either. I could exist with a certain amount of chaos around me â after all, that's what everyone's house is like if they have small children. I always felt it would drive me mad if I felt everything had to be perfect. But for some reason I had suddenly become filled with enormous energy and I had to channel it into something.
âPerhaps I'm going mad?' I suggested. I had never felt this compulsion to clean before. âLook at those shoes.' I pointed to the shoe rack, where at least ten pairs of shoes were arranged in a smart rank, so shiny so you could almost see your face in them. Ger raised his eyebrows.
âBernie â it's official. You're turning into your mother.'
My mother, Maria, was a tiny dynamo of a woman. She had grown up with her father and stepmother, who â as in the fairy tales â had two beloved children of her own. Mum was treated like a slave in her own home, and at the age of twelve she went into service like so many young girls in Ireland in the early 1920s. I remember hearing how she would have to get up at 4am to milk the cows, her fingers blue with cold, then she would go inside to lay the fires, break the ice on the wash stands, and work all day in the house without a break. When her tasks were finally over at around 11 at night, she would literally collapse into bed. She devoted her life to serving others, and when I and my four siblings were growing up in our small terraced house in Drogheda she would always be washing and scrubbing, cooking and cleaning â never resting until the place was spotless. We were poor, but we were always well turned out. And our shoes, set out for us the night before school, were polished until they gleamed.
âActually, I think it is the drugs.' I had been taking them for a few days and this huge burst of energy must be one of the side effects. The oncologist hadn't mentioned any side effects, so I dug out one of the packets and looked at the âpatient information leaflet'. Sure enough, there, in the midst of conditions I had never heard of like
promimal myopathy
,
Cushing's syndrome
and
negative nitrogen balance
, I found
euphoria
,
insomnia
and, more worryingly,
psychosis
.
âWell, perhaps I could take some to improve my golf swing,' Ger joked. âI could do with some help.'
Not only was I behaving as if I wanted to win Housewife of the Year 1988, I was talking nineteen to the dozen. âSlow down,' my garrulous friend Emma from down the road would say. âTalk about gift of the gab. I can't keep up with you.' Yet I had to talk quickly to keep up with the speed at which my mind was going â I would be in the middle of a sentence and find myself already forming the next one. Life was going at 90 miles per hour. My brain raced with plans and schemes. I sat up late into the night, existing on very little sleep, making list after list. I still have these tucked away in a drawer, and I hardly recognize my writing â it is larger and more flamboyant than my usual restrained style. There are names of countries I wanted to visit for holidays; outings to take the children on; plans for redesigning the garden; things I thought we needed for the house; people I had lost touch with; books I wanted to read but could not sit still long enough to get through the first chapters. And all the while I was cleaning, cleaning, cleaning.
I had never taken mind-altering drugs, but I supposed this was what it was like for people who take coke, speed or ecstasy. 60mg of prednisone daily and I was on an absolute high. It felt fantastic. Everything was beautiful to me, colours were brighter, people were more attractive. And my children! I thought they were the most gorgeous creatures ever to have walked the earth. Everything I saw, everything I heard, everything I sensed was loaded with a meaning at once overwhelmingly powerful, and at the same time impossible to convey to anybody else. I was in my own private kingdom. And perhaps above all, I was able to make a difference, to make whatever I wanted happen.
One weekend we went to visit Ger's brother Paul and his wife Sharon. I was very excited and full of energy and conversation. I spent the whole time telling them how beautiful they were, how lovely the house was, and how much I loved them.
âBernie, you're acting weird,' whispered Ger, taking me to one side. âI know it seems normal to you, but remember these tablets you are on are making you behave a little differently.'
âOK, OK, I'll try not to say anything. But Ger,' I whispered back conspiratorially, âdon't you feel that things are getting better? I'm not going to die after all. I'm going to get better, and I have the loveliest family anyone could have. I'm so happy I could burst.'
He took me home early.
Friends and family flocked to our house. I invited them all, and they were keen to come. They had heard that I had been sick and could not believe how happy I was and how well I looked. I spent all day in the kitchen cooking for large numbers of people, serving up huge meals and wolfing mine down before anyone else. I would splash wine into people's glasses, not caring if it spilt. Even though I could not drink any myself while I was on medication I felt so high I might as well have been tipsy myself. It was the most wonderful feeling.
One day Emma brought a cake over. I gave it to the children after their tea and, as usual, most of it ended up on the floor. âNever mind!' I said brightly. âI'll clear it up.' Instead of fetching the dustpan and brush, though, I thought it was a perfectly good idea to crawl under the table on my hands and knees picking up each and every crumb. It took some time. âYou've gone stark raving mad,' said my friend, trying to stop me. âAre you feeling OK? I thought you were meant to be ill.'
âWhat are you talking about?' I asked. âI couldn't feel better.'
The next day I went to the garden centre with a very tall friend of mine, Helen. She bought two very heavy plants in large terracotta pots. I insisted on carrying them to the car. Again, she was horrified.
âListen Bernadette, I'll do that. Don't go making yourself sick again by lugging things like this around. At least let me take one.'
âDon't be silly, I'm fine. I need to carry on as normal, Helen. Don't fuss.' I grabbed the plants and staggered off. It must have looked comic, though, to anyone watching. Me, a diminutive five feet tall, dwarfed by these two huge plants, accompanied by Helen who towers above me by almost a foot.
Then one day I woke up and couldn't move my arms.
Â
Steroids: the Good â¦
It was 2am and I was cleaning the house.
The kitchen was pristine, the bathrooms were shining. I crept into Sarah's room while she was sleeping, and reached up to the cupboards above her bed. They need to be sorted out, I decided, and I need to do it now. I put Richard's felt pens back in their boxes in neat colour-coordinated rows. I glanced at his toy soldiers, piled on a shelf in the playroom where he had chucked them that evening. That wouldn't do. Moments later they were all poised in position.
When Ger got up at 6am to go to work his breakfast was ready and I was dusting the living room. âI feel so sorry for you,' he sympathized. âYou have been up all night.'
âDon't be sorry: I feel superb!' I countered. He laughed at me. âYou're my dream woman! I always wanted a wife who would keep the place spotless.'
âI don't know what's come over me,' I admitted. Normally I was a disaster in the house. I wasn't messy, but I wasn't particularly tidy either. I could exist with a certain amount of chaos around me â after all, that's what everyone's house is like if they have small children. I always felt it would drive me mad if I felt everything had to be perfect. But for some reason I had suddenly become filled with enormous energy and I had to channel it into something.
âPerhaps I'm going mad?' I suggested. I had never felt this compulsion to clean before. âLook at those shoes.' I pointed to the shoe rack, where at least ten pairs of shoes were arranged in a smart rank, so shiny so you could almost see your face in them. Ger raised his eyebrows.
âBernie â it's official. You're turning into your mother.'
My mother, Maria, was a tiny dynamo of a woman. She had grown up with her father and stepmother, who â as in the fairy tales â had two beloved children of her own. Mum was treated like a slave in her own home, and at the age of twelve she went into service like so many young girls in Ireland in the early 1920s. I remember hearing how she would have to get up at 4am to milk the cows, her fingers blue with cold, then she would go inside to lay the fires, break the ice on the wash stands, and work all day in the house without a break. When her tasks were finally over at around 11 at night, she would literally collapse into bed. She devoted her life to serving others, and when I and my four siblings were growing up in our small terraced house in Drogheda she would always be washing and scrubbing, cooking and cleaning â never resting until the place was spotless. We were poor, but we were always well turned out. And our shoes, set out for us the night before school, were polished until they gleamed.
âActually, I think it is the drugs.' I had been taking them for a few days and this huge burst of energy must be one of the side effects. The oncologist hadn't mentioned any side effects, so I dug out one of the packets and looked at the âpatient information leaflet'. Sure enough, there, in the midst of conditions I had never heard of like
promimal myopathy
,
Cushing's syndrome
and
negative nitrogen balance
, I found
euphoria
,
insomnia
and, more worryingly,
psychosis
.
âWell, perhaps I could take some to improve my golf swing,' Ger joked. âI could do with some help.'
Not only was I behaving as if I wanted to win Housewife of the Year 1988, I was talking nineteen to the dozen. âSlow down,' my garrulous friend Emma from down the road would say. âTalk about gift of the gab. I can't keep up with you.' Yet I had to talk quickly to keep up with the speed at which my mind was going â I would be in the middle of a sentence and find myself already forming the next one. Life was going at 90 miles per hour. My brain raced with plans and schemes. I sat up late into the night, existing on very little sleep, making list after list. I still have these tucked away in a drawer, and I hardly recognize my writing â it is larger and more flamboyant than my usual restrained style. There are names of countries I wanted to visit for holidays; outings to take the children on; plans for redesigning the garden; things I thought we needed for the house; people I had lost touch with; books I wanted to read but could not sit still long enough to get through the first chapters. And all the while I was cleaning, cleaning, cleaning.
I had never taken mind-altering drugs, but I supposed this was what it was like for people who take coke, speed or ecstasy. 60mg of prednisone daily and I was on an absolute high. It felt fantastic. Everything was beautiful to me, colours were brighter, people were more attractive. And my children! I thought they were the most gorgeous creatures ever to have walked the earth. Everything I saw, everything I heard, everything I sensed was loaded with a meaning at once overwhelmingly powerful, and at the same time impossible to convey to anybody else. I was in my own private kingdom. And perhaps above all, I was able to make a difference, to make whatever I wanted happen.
One weekend we went to visit Ger's brother Paul and his wife Sharon. I was very excited and full of energy and conversation. I spent the whole time telling them how beautiful they were, how lovely the house was, and how much I loved them.
âBernie, you're acting weird,' whispered Ger, taking me to one side. âI know it seems normal to you, but remember these tablets you are on are making you behave a little differently.'
âOK, OK, I'll try not to say anything. But Ger,' I whispered back conspiratorially, âdon't you feel that things are getting better? I'm not going to die after all. I'm going to get better, and I have the loveliest family anyone could have. I'm so happy I could burst.'
He took me home early.
Friends and family flocked to our house. I invited them all, and they were keen to come. They had heard that I had been sick and could not believe how happy I was and how well I looked. I spent all day in the kitchen cooking for large numbers of people, serving up huge meals and wolfing mine down before anyone else. I would splash wine into people's glasses, not caring if it spilt. Even though I could not drink any myself while I was on medication I felt so high I might as well have been tipsy myself. It was the most wonderful feeling.
One day Emma brought a cake over. I gave it to the children after their tea and, as usual, most of it ended up on the floor. âNever mind!' I said brightly. âI'll clear it up.' Instead of fetching the dustpan and brush, though, I thought it was a perfectly good idea to crawl under the table on my hands and knees picking up each and every crumb. It took some time. âYou've gone stark raving mad,' said my friend, trying to stop me. âAre you feeling OK? I thought you were meant to be ill.'
âWhat are you talking about?' I asked. âI couldn't feel better.'
The next day I went to the garden centre with a very tall friend of mine, Helen. She bought two very heavy plants in large terracotta pots. I insisted on carrying them to the car. Again, she was horrified.
âListen Bernadette, I'll do that. Don't go making yourself sick again by lugging things like this around. At least let me take one.'
âDon't be silly, I'm fine. I need to carry on as normal, Helen. Don't fuss.' I grabbed the plants and staggered off. It must have looked comic, though, to anyone watching. Me, a diminutive five feet tall, dwarfed by these two huge plants, accompanied by Helen who towers above me by almost a foot.
Then one day I woke up and couldn't move my arms.
Chapter Seven
Â
⦠the Bad â¦
I
couldn't understand it â the previous day I had been fine. Now I simply couldn't raise my arms. My elbows were stiff and unbending, agony when I tried to move them. Was I paralysed? No, I could move the rest of my body, although my legs hurt. Why had I suddenly seized up? Was this the lymphoma or was this another side effect of the steroids? No one had warned me of this. Ger had already left the house for work, and I could hear the children stirring in their rooms. They would be getting themselves dressed and needing breakfast in a few minutes. What was I to do? Come on Bernie, I said to myself, you can work out a way to get out of bed without your arms. I couldn't sit up, and I found my knees were painful to bend too so I couldn't use them to propel myself. Eventually I managed to roll onto my side and slide out of bed, but when I put pressure on my knees I collapsed. They were like jelly.
I sat on the floor by the bed. This was bad. The children were arguing about something and I heard a door being slammed. I had three things to do: 1: Stand up; 2: make breakfast; 3: take them to school. At that moment these three things seemed like the hardest tasks anyone could ask of me. I couldn't imagine how I was going to get through the first half hour of today, let alone the rest of it.
I half stood up, gritting my teeth against the pain. The phone was on the bedside table, and I managed to lean my body over to pick it up. I called Gerard.
âI can't move,' I whispered, âAll my joints have seized up. I don't know what to do.' I explained how long it had taken me to get up and how worried I was.
âWill I come home?' he offered. âOr will I call Pauline for you?'
Pauline was a neighbour, and had a lad at the same junior school as Richard and Sarah. Over the course of the next few months I would have cause to thank God for Pauline many times.
âI'll try her. Don't you worry for now. I might be feeling better later; I'll see how it goes.' I needed to hear Ger's voice, but I didn't want to worry him too much. I already felt better for talking to him.
âOK, but will you call me to let me know? Oh, and try the hospital too â they might be able to help.'
âYes I will. See if you can come home a little early though. Bye.'
Then I remembered the information leaflet in the prednisone box by my bed. I shook it out of the box and read it. Sure enough, there was an extensive list of side effects, including something they described as
muscle weakness
or
joint pain
. Was that it? It made no mention of excruciating agony â how odd. How typical.
With great effort I got myself downstairs, calling the children on my way. I persuaded them that it would be fun for them to get out the breakfast things and pour out their own milk and orange juice this morning. While it saved me from reaching into cupboards it did not make for an entirely mess-free kitchen, and when I looked in on them after calling Pauline to ask her to take them to school my heart sank to see the spilt cereal and puddles of milk dripping onto the floor. They were both giggling. I knew then that I would have to stay cheerful for their sakes.
âNever mind,' I said to them. Some of my standards were just going to have to slip.
After I had gratefully sent them both off with Pauline I collapsed onto the sofa. The pressure on my knees from having been up for three quarters of an hour had left them aching more than before and I needed to raise them up. I called the hospital as soon as I thought there would be someone there to answer.
âOh, don't worry, Mrs Bohan,' said the nurse in a reassuring voice. âThat is just one of the side effects of this drug â there are various different ones and everyone reacts differently. The cortisone does reach the joints and can cause some discomfort.'
Discomfort? I managed a rueful smile. I still had the leaflet tucked in my pocket and my hand shook as I scanned the list for other symptoms.
Abdominal pain, acne, allergic reactions⦠increased appetite, hair growth, nausea, fluid retention, osteoporosis, indigestion, depression, headaches, hallucinations, insomnia
⦠I stopped reading. I knew if I continued I would start imagining I had all these side effects. Tackle one thing at a time, I decided.
Over the next few days the cortisone seeped through to every joint in my body, right through to my fingers and toes. I learnt that the only way to lead anything approaching a normal life would be to pace myself carefully. I was in unbelievable pain when I woke up each morning, my joints stiff and immovable. Richard and Sarah were always taken to school by my neighbour â I would be literally hunched over like an old crone, and in no state to go anywhere at that time of day. I would gradually loosen up until I could almost stand upright, which would be around midday. I was never able to stand completely straight, and this in itself put a huge strain on my back. At half past one I had pulled myself together sufficiently to be ready to leave the house to collect the children, but I would shuffle up the road at no more than a snail's pace. For everyone else it took just six minutes; for me it took over half an hour. Then we would potter back home, the children skipping back and forth along the pavement like puppies, covering three times the distance I travelled in half the time.
Household tasks â as few as I could reduce them to â I would spread throughout the day, and I did as many as I could sitting down, so as not to strain my knees too much. Anything extra, anything enjoyable â like gardening, or sewing â was out of the question. This was so strange for me: even before my recent period of hypomanic behaviour, I was not a person for sitting around. I like to be up and about, busy and active. I have no patience for lounging about and I hardly ever watch television. What a punishment this was for me! It drove me mad not to be able to do things, particularly when I knew how much there was to get done. Perhaps this was God's way of telling me to slow down â I often think that He finds ways of teaching us the lessons we most need to learn.
I was taking sixteen prednisone tablets each day, plus one Tagamet to prevent stomach ulcers. I took the first dose early in the morning, and then at four hour intervals throughout the day. About half an hour after I'd taken the tablets I would feel an easing of the pain, and I would be relatively fine for the next two hours, after which the pain would return and I would find myself counting the minutes until the allotted time for the next dose. The periods of lesser pain were when I would schedule any tasks I had to do â I paced my own activities to match the rhythms of the drugs. I also knew I couldn't be on my feet too much or for too long, or I'd pay for it with excruciating pain later.
One afternoon I was up at the school waiting for the children. I put on a bright smile to greet the other mothers who clustered around the school gates. I noticed the mother of one of Richard's friends looking at me curiously. Marian knew I had been ill, and asked me how I was doing.
âNot so good, if I'm honest,' I replied. This wasn't like me. I hardly ever talked to anyone about how I was feeling, apart from Ger, but I knew she would understand the situation because she was a nurse. She might even have some ideas on how I could help myself. âThese steroids are giving me pain in my joints like I've never known, and I'm wondering what I can do to ease the pain. Do you think maybe I should bring forward the times at which I take them, like take them every three hours instead of every four?'
âNo, definitely not, don't be tempted to do that,' she warned. âIf you did that you would effectively be increasing your dose. Take paracetamol in between doses to keep the pain down â and take the maximum dose it allows on the packet. You might also try bandaging your joints tightly â that should help.'
I followed her advice gratefully. I learnt to take the paracetamol around half an hour before the time I estimated the pain would be at its peak, so I was able to cope until the next dose of prednisone. The nights were the worst. My mind was still racing as it had during the first three crazy weeks, but my body was shutting down. I craved sleep because it was the only time I was pain-free, yet I would rarely drift off for longer than an hour or so at a time, so I was dropping with weariness during the day. Ger used to bandage my knees tightly before we went to bed, and I found the pressure did relieve the pain a little.
âWhy don't you think about taking something to help you to sleep?' Ger urged me.
âNo, I'm taking so many tablets already. I hate all these drugs â if there is something I can do without I think I should try, don't you?' Of course he agreed. Ger was incredibly supportive and would have done anything to try to help ease my suffering, yet he knew how strongly I always had felt about taking medication. He felt guilty for waking me in the night, for even if I did manage to drop off I would wake instantly if he turned over, coughed or snored. Eventually we had to sleep in separate rooms. This was sad for both of us â it was the only time in our lives when we have slept apart. Yet it meant that I was able to snatch perhaps one hour's extra sleep.
âGoodnight, sleep well,' we would whisper to each other on the landing outside the children's bedrooms. We would stand for a while with our arms round each other, Ger holding me so gently in order not to bruise me. I had never needed comfort and closeness more, yet I had never felt so cut off from normal human contact. I was full of bitterness. Only a few months ago I had been so happy and carefree. Now I could not imagine feeling worse.
âGod, how I hate this. I hate the drugs, I hate the pain, I hate not being able to lead a normal life. I hate moping around the house feeling useless.'
âJust remember that these drugs are helping you,' he would keep saying. âThis won't last for ever.'
âThat's what the oncologist says,' I responded grumpily. I was seeing him every month, and each time he would check the size of the lump, as well as checking my neck, my stomach and under my arms, for there was the constant fear that the cancer would surface elsewhere. While he did this I would fire question after question at him, desperate to understand the disease and find ways of helping myself. On one visit when I was chatting to (Gerard would say interrogating) one of the nurses she shook her head at me. âBooks? You don't want to go there â you will only end up frightening yourself.' I realized years later that that was the worst piece of advice anyone ever gave me. Now, when I teach people about health I always tell them that knowledge is power â get informed, educate yourself, get some control.
The oncologist could not recommend any books either. He always said I was responding well to the treatment â the lump was shrinking â but sometimes I suspected he was just trying to make me feel better. I was to be on the drugs for several months. If I thought things couldn't get worse, I was wrong.
Â
⦠the Bad â¦
Icouldn't understand it â the previous day I had been fine. Now I simply couldn't raise my arms. My elbows were stiff and unbending, agony when I tried to move them. Was I paralysed? No, I could move the rest of my body, although my legs hurt. Why had I suddenly seized up? Was this the lymphoma or was this another side effect of the steroids? No one had warned me of this. Ger had already left the house for work, and I could hear the children stirring in their rooms. They would be getting themselves dressed and needing breakfast in a few minutes. What was I to do? Come on Bernie, I said to myself, you can work out a way to get out of bed without your arms. I couldn't sit up, and I found my knees were painful to bend too so I couldn't use them to propel myself. Eventually I managed to roll onto my side and slide out of bed, but when I put pressure on my knees I collapsed. They were like jelly.
I sat on the floor by the bed. This was bad. The children were arguing about something and I heard a door being slammed. I had three things to do: 1: Stand up; 2: make breakfast; 3: take them to school. At that moment these three things seemed like the hardest tasks anyone could ask of me. I couldn't imagine how I was going to get through the first half hour of today, let alone the rest of it.
I half stood up, gritting my teeth against the pain. The phone was on the bedside table, and I managed to lean my body over to pick it up. I called Gerard.
âI can't move,' I whispered, âAll my joints have seized up. I don't know what to do.' I explained how long it had taken me to get up and how worried I was.
âWill I come home?' he offered. âOr will I call Pauline for you?'
Pauline was a neighbour, and had a lad at the same junior school as Richard and Sarah. Over the course of the next few months I would have cause to thank God for Pauline many times.
âI'll try her. Don't you worry for now. I might be feeling better later; I'll see how it goes.' I needed to hear Ger's voice, but I didn't want to worry him too much. I already felt better for talking to him.
âOK, but will you call me to let me know? Oh, and try the hospital too â they might be able to help.'
âYes I will. See if you can come home a little early though. Bye.'
Then I remembered the information leaflet in the prednisone box by my bed. I shook it out of the box and read it. Sure enough, there was an extensive list of side effects, including something they described as
muscle weakness
or
joint pain
. Was that it? It made no mention of excruciating agony â how odd. How typical.
With great effort I got myself downstairs, calling the children on my way. I persuaded them that it would be fun for them to get out the breakfast things and pour out their own milk and orange juice this morning. While it saved me from reaching into cupboards it did not make for an entirely mess-free kitchen, and when I looked in on them after calling Pauline to ask her to take them to school my heart sank to see the spilt cereal and puddles of milk dripping onto the floor. They were both giggling. I knew then that I would have to stay cheerful for their sakes.
âNever mind,' I said to them. Some of my standards were just going to have to slip.
After I had gratefully sent them both off with Pauline I collapsed onto the sofa. The pressure on my knees from having been up for three quarters of an hour had left them aching more than before and I needed to raise them up. I called the hospital as soon as I thought there would be someone there to answer.
âOh, don't worry, Mrs Bohan,' said the nurse in a reassuring voice. âThat is just one of the side effects of this drug â there are various different ones and everyone reacts differently. The cortisone does reach the joints and can cause some discomfort.'
Discomfort? I managed a rueful smile. I still had the leaflet tucked in my pocket and my hand shook as I scanned the list for other symptoms.
Abdominal pain, acne, allergic reactions⦠increased appetite, hair growth, nausea, fluid retention, osteoporosis, indigestion, depression, headaches, hallucinations, insomnia
⦠I stopped reading. I knew if I continued I would start imagining I had all these side effects. Tackle one thing at a time, I decided.
Over the next few days the cortisone seeped through to every joint in my body, right through to my fingers and toes. I learnt that the only way to lead anything approaching a normal life would be to pace myself carefully. I was in unbelievable pain when I woke up each morning, my joints stiff and immovable. Richard and Sarah were always taken to school by my neighbour â I would be literally hunched over like an old crone, and in no state to go anywhere at that time of day. I would gradually loosen up until I could almost stand upright, which would be around midday. I was never able to stand completely straight, and this in itself put a huge strain on my back. At half past one I had pulled myself together sufficiently to be ready to leave the house to collect the children, but I would shuffle up the road at no more than a snail's pace. For everyone else it took just six minutes; for me it took over half an hour. Then we would potter back home, the children skipping back and forth along the pavement like puppies, covering three times the distance I travelled in half the time.
Household tasks â as few as I could reduce them to â I would spread throughout the day, and I did as many as I could sitting down, so as not to strain my knees too much. Anything extra, anything enjoyable â like gardening, or sewing â was out of the question. This was so strange for me: even before my recent period of hypomanic behaviour, I was not a person for sitting around. I like to be up and about, busy and active. I have no patience for lounging about and I hardly ever watch television. What a punishment this was for me! It drove me mad not to be able to do things, particularly when I knew how much there was to get done. Perhaps this was God's way of telling me to slow down â I often think that He finds ways of teaching us the lessons we most need to learn.
I was taking sixteen prednisone tablets each day, plus one Tagamet to prevent stomach ulcers. I took the first dose early in the morning, and then at four hour intervals throughout the day. About half an hour after I'd taken the tablets I would feel an easing of the pain, and I would be relatively fine for the next two hours, after which the pain would return and I would find myself counting the minutes until the allotted time for the next dose. The periods of lesser pain were when I would schedule any tasks I had to do â I paced my own activities to match the rhythms of the drugs. I also knew I couldn't be on my feet too much or for too long, or I'd pay for it with excruciating pain later.
One afternoon I was up at the school waiting for the children. I put on a bright smile to greet the other mothers who clustered around the school gates. I noticed the mother of one of Richard's friends looking at me curiously. Marian knew I had been ill, and asked me how I was doing.
âNot so good, if I'm honest,' I replied. This wasn't like me. I hardly ever talked to anyone about how I was feeling, apart from Ger, but I knew she would understand the situation because she was a nurse. She might even have some ideas on how I could help myself. âThese steroids are giving me pain in my joints like I've never known, and I'm wondering what I can do to ease the pain. Do you think maybe I should bring forward the times at which I take them, like take them every three hours instead of every four?'
âNo, definitely not, don't be tempted to do that,' she warned. âIf you did that you would effectively be increasing your dose. Take paracetamol in between doses to keep the pain down â and take the maximum dose it allows on the packet. You might also try bandaging your joints tightly â that should help.'
I followed her advice gratefully. I learnt to take the paracetamol around half an hour before the time I estimated the pain would be at its peak, so I was able to cope until the next dose of prednisone. The nights were the worst. My mind was still racing as it had during the first three crazy weeks, but my body was shutting down. I craved sleep because it was the only time I was pain-free, yet I would rarely drift off for longer than an hour or so at a time, so I was dropping with weariness during the day. Ger used to bandage my knees tightly before we went to bed, and I found the pressure did relieve the pain a little.
âWhy don't you think about taking something to help you to sleep?' Ger urged me.
âNo, I'm taking so many tablets already. I hate all these drugs â if there is something I can do without I think I should try, don't you?' Of course he agreed. Ger was incredibly supportive and would have done anything to try to help ease my suffering, yet he knew how strongly I always had felt about taking medication. He felt guilty for waking me in the night, for even if I did manage to drop off I would wake instantly if he turned over, coughed or snored. Eventually we had to sleep in separate rooms. This was sad for both of us â it was the only time in our lives when we have slept apart. Yet it meant that I was able to snatch perhaps one hour's extra sleep.
âGoodnight, sleep well,' we would whisper to each other on the landing outside the children's bedrooms. We would stand for a while with our arms round each other, Ger holding me so gently in order not to bruise me. I had never needed comfort and closeness more, yet I had never felt so cut off from normal human contact. I was full of bitterness. Only a few months ago I had been so happy and carefree. Now I could not imagine feeling worse.
âGod, how I hate this. I hate the drugs, I hate the pain, I hate not being able to lead a normal life. I hate moping around the house feeling useless.'
âJust remember that these drugs are helping you,' he would keep saying. âThis won't last for ever.'
âThat's what the oncologist says,' I responded grumpily. I was seeing him every month, and each time he would check the size of the lump, as well as checking my neck, my stomach and under my arms, for there was the constant fear that the cancer would surface elsewhere. While he did this I would fire question after question at him, desperate to understand the disease and find ways of helping myself. On one visit when I was chatting to (Gerard would say interrogating) one of the nurses she shook her head at me. âBooks? You don't want to go there â you will only end up frightening yourself.' I realized years later that that was the worst piece of advice anyone ever gave me. Now, when I teach people about health I always tell them that knowledge is power â get informed, educate yourself, get some control.
The oncologist could not recommend any books either. He always said I was responding well to the treatment â the lump was shrinking â but sometimes I suspected he was just trying to make me feel better. I was to be on the drugs for several months. If I thought things couldn't get worse, I was wrong.
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