Love Byte

by David Atkinson

  We had been sent home with this small bundle of joy, exhausted and exhilarated. The birth had been a long one – twenty-six hours from start to finish – but Lindsay was proud she had managed a normal birth, and thankfully without any significant tears to her nether regions. The two midwives had been brilliant, a warm girl from the Home Counties and a solid Geordie girl with jet-black hair and a safety pin through her nose. I’d spent nearly twelve hours staring at that safety pin, postulating whether or not snot would leak out of her nostril when she had a cold. I never plucked up the courage to ask her.

  The alarming thing for me was that Amy came with no instructions. You can buy anything in the shops, from a washing machine to a flat-pack house, and with it comes a book of detailed plans, instructions, and usually a troubleshooting section. Years earlier I’d even adopted a cat from a rescue centre and received a huge list of dos and don’ts neatly typed on two A4 sheets.

  Yet here we were taking home a brand new human and we received absolutely nothing, except some instructions on how to fit a baby car seat and a vague leaflet about the dangers of female genital mutilation. (The only female genital mutilation I had ever witnessed was that inflicted on my poor wife by Amy.)

  When Helen, the health visitor, appeared, the morning following Lindsay’s release from the maternity ward, we must have presented a familiar story for her: two bewildered adults trying to get to grips with parenthood. There were no university courses in parenthood, not even a City and Guilds or an NVQ. You can do an NVQ in hairdressing, glass blowing, cloud watching and even train-spotting but not in parenthood. The art of being a parent was something you had to learn on the job, gleaning the basics from instructions on the back of various nappy boxes and baby milk.

  Helen was exceptionally gifted in platitudes and re-assurances but not much help with our dilemma. Mainly because the minute Helen walked in the front door Amy was happiness and light, no howling, no screaming and no bawling. Even when Helen viciously stuck a pin in her foot to test her reactions Amy only protested mildly.

  ‘What a lovely child, you are so lucky, most babies scream blue murder when I do that.’

  Our description and protests of the previous seventeen hours were greeted with doubt and scepticism and Helen left with the firm impression, I believe, that we were serial complainers. Of course the minute Helen closed the front door Amy started up again for the next seventeen hours.

  Eventually we discovered that Lindsay wasn’t expressing enough milk and Amy was just hungry. It took nearly a week before a locum community midwife diagnosed the problem. She suggested Lindsay supplement the breast feeds with some formula milk. The first time Amy ingested a bottle of milk, a look of pure contentment spread across her features and for the first time with a full belly, she slipped into a long and peaceful sleep, as did her grateful parents.

  As well as instructions on how to deal with a newborn baby, Lindsay and I had come up with a list of things that it would be useful for prospective parents to know before setting out on the journey of parenthood. We’d based this on our own experience and also from what we’d gleaned from friends with older kids.

  Travelling by car: In order to simulate the aromas of carting a toddler around in a car seat for a prolonged period of time, take a fresh fish (maybe a herring) and place it somewhere unobtrusive. Under the passenger seat would be ideal. Then leave it in place for around six months to a year.

  DVD Players: If you still have a DVD player then you have to squish a soft biscuit into the slot or drawer where the DVD fits, preferably one with jam in the middle to ensure the mechanism completely seizes up.

  Televisions: If you own an LCD or plasma TV, take some time to continually bash the bottom right hand corner of the screen until a number of pixels stop working to thus impede your viewing pleasure. (This might not be such a disaster because in order to fully simulate life with toddlers for a period of approximately five years, you would only be allowed to watch: In the Night Garden, Justin’s House and Nina and the Neurons.)

  Artwork: Take several sheets of paper and thickly smear a variety of coloured paints over each one until you get something resembling congealed vomit. Then allow the artwork to dry, attach some Blu-Tack to the back of each masterpiece and proudly display them on your fridge door for eighteen months.

  Tidying Up: Every evening when you get home from work, immediately go into your living room or kitchen and empty a sack of toys all over the floor. Spend the remainder of the evening distributing them randomly around the rest of your house/flat. It is vital to ensure a number of sharp edged toys (Lego bricks are ideal) are placed beside your bed where you are certain to stand on them with your bare feet in the morning, or if you need to get up during the night.

  In the end we decided not to publish our list anywhere in case it had a detrimental effect on the UK birth rate.

  As our own darling daughter grew, so did our confidence. Eventually we established a routine of sorts, where we would put Amy in her Moses basket beside our bed around 8 p.m. and when she woke up during the night for her first feed, Lindsay would take her into bed and I would stagger bleary-eyed into the spare room and sleep there until morning. Eventually, Amy started to sleep for longer periods and I could snuggle in beside Lindsay for most of the night.

  Amy put on weight quickly and became a robust and rotund cherub, with rosy cheeks and a snub nose.

  Her first birthday was more of an adult than a baby celebration, with a house and garden bursting with friends and relatives quaffing large amounts of wine and champagne. Lindsay got very drunk for the first time since the birth and had to go to bed early, even before Amy.

  It was a week after Amy’s birthday celebrations when Lindsay first started to feel unwell. She was chuffed at how quickly she had shed her baby weight, and now weighed less than she had before the pregnancy. She had noticed over the previous few weeks though, a complete loss of appetite and her tummy felt bloated. At first she simply thought it was down to the high fibre diet she had been on to try and lose the weight, but then decided that she was feeling unwell enough to go to the GP. He checked her over and decided it was likely to be a virus: the stock GP diagnosis when they can’t think of anything else. He recommended she try to rest, drink plenty of fluids and stop any breastfeeding as it might be contributing to a hormone imbalance. He told her to come back if she didn’t feel better in a week or so.

  A month went by and Lindsay was still feeling tired and sick. We had even considered the possibility that she might be pregnant – unlikely but not impossible. A pregnancy test proved negative and so she returned to the doctor. He took some blood and urine samples to send away for testing and promised to phone in a day or so with the results. He was still confident it was something minor given Lindsay’s age and general good health.

  He phoned on the Saturday morning after he’d finished an emergency surgery. He’d noticed her results on his computer system and was surprised to find us at home, expecting to leave a message on an answering machine. The blood test had detected raised levels of a chemical in the blood called alpha-fetoprotein (AFP), which could indicate what he referred to as ‘minor liver functionality anomalies’. He still sounded fairly relaxed but the fact that he had phoned on a Saturday and referred us to a specialist the following week meant we were worried.

  Lindsay’s mum looked after Amy while we drove to the hospital on Friday August the fifteenth, a week after our second wedding anniversary.

  The first thing they did was an ultrasound. Lindsay had been told not to eat for twenty-four hours before the appointment, which wasn’t a hardship as she didn’t feel like eating anyway. It was weird because the last time we had seen the result of an ultrasound, it was a picture of Amy in the womb. We didn’t get to see the pictures this time and after it was over we were sent home none the wiser. We got a phone call five days later, with the devastating news that it was possible Lindsay had liver cancer and nee
ded to come back in for a biopsy to confirm the diagnosis. What we didn’t know at the time was that if they suspected the cancer was confined to the liver, they normally wouldn’t perform a biopsy.

  We had some sleepless nights waiting for the call to go into the hospital. Eventually, after a week, we were sent a timetable of what Lindsay could expect. It was effectively a full two days of tests and Lindsay would need to stay in overnight. At the end of the second day we were asked to sit in a large room along the corridor from the cancer unit.

  The room was unusual for a hospital in that it was decorated tastefully with neutral colours with what looked like original oil paintings dotted around the walls. There were two long cream leather couches and four matching chairs. On the coffee table in the middle of the room were a number of books and magazines. A complimentary coffee machine gurgled in the corner and the coffee aroma partly masked the clinical hospital smell. It was a room made for delivering bad news.

  Eventually the oncologist, a sympathetic and kind man called Alan Blythe, came and sat beside us to explain quietly what they had discovered. His face was serious and his lack of a smile told us all we needed to know, but he tried his best to be positive. He spoke almost exclusively to Lindsay. I felt like a bystander as he explained the situation.

  ‘What seems to have happened is that the symptoms you have been having – loss of appetite, tiredness, bloating and nausea – are down to a large growth on your liver. This is inhibiting the organ’s normal function and is mainly responsible for all your discomfort.’ He paused for a moment and consulted his notes. ‘We can treat the tumour in situ, which means we can apply some aggressive therapy which will reduce the size of the growth and that will make you feel a lot better.’

  I noted he said ‘reduce the size’, not ‘get rid of’.

  He then looked straight into Lindsay’s eyes and said, ‘The main problem is that the liver tumour is actually a secondary cancer that has metastasized. In other words, it did not form in the liver but has spread from another site in your body. In your case it appears that it began in your pancreas which would also have contributed to your lack of appetite.’

  He went on to spell out the options, which were depressingly few. He outlined supportive care options (which meant pain control) and chemotherapy to extend what he referred to as ‘lifespan’. By this time Lindsay had completely shut down and wasn’t taking anything in. How can you cope with that kind of news when you are twenty-seven years old and have a baby waiting for you at home?

  CHAPTER FOUR

  A week after the diagnosis and many tearful days and nights, Lindsay started on a course of chemo and what the medical staff insisted on calling ‘supportive care’. The chemo made her very sick and after ten days she called a halt to it, deciding that if she had to die, she damn well wasn’t going to do it feeling nauseous for the whole of the time she had left. Even the smell of food made her vomit.

  It was almost impossible to get a feel for how long we had left. The doctors were non-committal but positive, saying she was a young, healthy woman (apart from dying of cancer of course) and was strong.

  We managed eventually to estimate a figure of around six months, tops. What do you do with six months, when in reality we knew that Lindsay would only be well enough for maybe three or four of those months to do anything meaningful?

  We discussed travelling, and between us we wrote down a list of places.

  My first choice was Australia.

  ‘We could spend a few weeks touring around,’ I suggested enthusiastically.

  Lindsay sighed. ‘No it’s too far away and I wouldn’t want to be on a plane that long with Amy. It’d be too much for her.’

  Top of Lindsay’s list was Egypt. ‘I’ve always wanted to see the pyramids,’ she said wistfully, ‘but thinking about it, Egypt is very dirty and busy and I think Amy is too young for us to put her through all that. Also the medical system probably isn’t very good. What if Amy got ill or I needed something?’

  I put our lists to one side. ‘What about going back to America? They’re reasonably civilized and clean as long as we avoid Detroit.’

  Lindsay laughed and knew I was referring to a business trip she’d been on a few years ago to the city; Lindsay had hated the place. She shook her head. ‘I’m sick, Andy, and if I was to need some kind of medical care when we were there it’d bankrupt us and I’m probably uninsurable now.’

  Lindsay picked up our bits of paper and scrunched them up into a ball. She smiled brightly having reached a decision. ‘I reckon the best thing for us to do is just stay home, we live in one of the nicest cities in the world, why bother travelling away and getting everyone stressed and upset when we can just potter about here. I’d be much happier with that. What I really want to do is to spend time with you and Amy – and my mum of course. My days are numbered and I want to make the most of them.’ We sat and formulated a plan and we had tears in our eyes as we worked out how we would spend Lindsay’s last days on Earth.

  Initially I was to carry on working and we would try to have as normal a life as possible. It helped that Lindsay’s mother had retired and was there to help, but it was an intense and emotionally charged time, with Lindsay the most composed and bravest of us all.

  We had a family portrait taken, spending a wonderful afternoon in a photographic studio with wind machines and exotic backdrops. Lindsay bought a fabulous strapless dress and had her make-up and hair professionally done. My hair was its usual unruly mane with a floppy fringe and Amy only sported a dark fuzz at that stage. After that day Lindsay refused to allow any more photographs to be taken of her. Even at her best friend Ellie’s wedding in late September she refused to pose for pictures. She had also refused to be Ellie’s bridesmaid due to her declining health, and on the day of the wedding we went home just after the meal due to her fatigue.

  Towards the end of that month Lindsay had her first really bad day. She awoke with a blinding migraine, her first ever, and couldn’t get out of bed. We called the doctor who upped her medication, and said she should stay in a dark room until the pain subsided. Bad days began to become more frequent, sometimes it was a migraine, agonizing stomach cramps or occasionally debilitating back pain that left her curled up in agony. The doctors could only administer their ‘supportive care’. I cried for her pain, but had to be brave for Amy who couldn’t understand why whole days drifted by without seeing her mummy.

  Sometimes her skin was so sensitive she couldn’t stand being touched and cowered away when either I or Amy went near her. This was particularly hard on Amy who, again, couldn’t understand why her mummy wouldn’t cuddle her.

  Thankfully there were also what Lindsay termed ‘remission’ days: times when her pain was bearable and we could do normal things like walk in the park or Christmas shop. We started in October, unsure if Lindsay would be around for Christmas, though her goal was to make that landmark.

  Given the pain she was suffering her fortitude was amazing. She would try and smile as much as she could, and once – at Lindsay’s behest – we even went on a pub crawl along George Street, making sure we went into the most expensive bars we could find, ordering champagne every time. We even ended up in a nightclub, ridiculously drunk.

  I gave up work completely on 5 November, having agreed an extended leave of absence. The day was a particularly memorable one as it was Lindsay’s last ‘remission’ day.

  We took Amy halfway up Arthur’s seat and watched the fireworks at the castle. We then went to a nearby restaurant and Lindsay watched me and Amy eat. By this time she couldn’t face any food at all but between us we managed to drink two bottles of wine. We went home afterwards and after Amy was asleep, made love for what would be the last time.

  Her clothes were hanging off her by this time and on the rare occasion I saw her naked or near naked, she was nothing but a series of angles, held together by sinews and ligaments.

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bsp; One morning, later that week, I was with her when she stood naked in front of the mirror, staring at herself. ‘God, even my tits have all but vanished,’ she said incredulously.

  I put my arms around her and she leaned back into me. I kissed her neck which made her turn her head and smile, then she placed her hands under her breasts and pushed them up slightly. ‘I tell you what though,’ she laughed. ‘At least they’re the same size now.’

  I loved the fact that she could still make a joke in the face of such adversity. It was her spirit that kept us all going.

  A week after watching the fireworks Lindsay decided she needed to move into a hospice. We had talked about this and planned for it, but it was still a wrench as we knew it spelled the beginning of the end. She was no longer able to manage her own medications and needed more care than I or Pauline could give her. Also as heart-breaking as it was, Amy now cried every time she saw her mummy. She was merely expressing how we all felt.

  The first week in the hospice was difficult. We’d go to see Lindsay in the afternoon and early evening before Amy’s bedtime, but soon this was restricted only to afternoons as Lindsay was usually asleep due to the effect of her medications by 5 p.m.

  At least Lindsay achieved her goal of seeing Christmas. She was transported home on Christmas Eve and spent her last ever night there with us. On Christmas morning she watched from a wheelchair as Amy opened presents and shrieked with delight. We had scented candles burning and the lights twinkled on the last Christmas tree Lindsay would ever see. The excitement unfortunately took its toll and she had to go back before we had lunch. It was the last time Lindsay left the hospice. She died at 11 p.m. on 7 January, holding my hand while Amy slept peacefully on my lap.