A not so ordinary Wednesday

On an ordinary Wednesday afternoon in December last year, as I was getting ready to spend Christmas in Sweden like we always did, I had an appointment with a consultant at my local hospital.

The day had started out as normal. I woke up around eight and padded down to the kitchen to make coffee for my husband and I. Being December, it was chilly and gray, but the Christmas tree twinkled and glittered in the corner of the living room. To add to the atmosphere, I lit a candle, and it wasn’t long before the scent of spiced apple and mulled wine filled the air. It was cozy and warm inside, and I curled up on the couch with my husband. We had the news on the TV as we usually did, and despite having plenty to do over the next few days, I felt relaxed and content. The season had started, and I was looking forward to spending quality time with my family. I was also not looking forward to it.

My mom had passed away in July, so this would be the first Christmas without her. We were still knee-deep in grief, and I was worried how it would all turn out. She was the glue that held us together, and now she was gone. How do you celebrate a holiday without one of the most important people present? I had no idea. All I knew was that I had to get through it somehow. For my family.

My mom was the best person I knew. All her life, she’d tried to help others – especially young

people.

After qualifying in child care, she started out working at a local daycare center with children aged one and up until they went to school.She loved it, and children flocked to her.

A number of years later, she’d finished her undergrad and got a job as a youth therapy worker at a home for teenagers with social problems. Most of them had had tough upbringings, ended up with the wrong crowd, or lost their way with school and family. This was a place for them to reset, rethink, and reevaluate their lives with the help of staff members like my mom.

She spent most of my teenage years working there, and I got to know many of her coworkers. They were all lovely and many had been there for several years. Sadly, the home had to close due to various reasons, and my mom was transferred to a different one. However, since it was much farther away from home, she felt the commute was too long and applied to a kindergarten school nearby. This is where she stayed for many years to come. She’d come full circle and didn’t fully retire until she was seventy-six years old. She saw so many children come and go, and even had the children of the children she’d taught at the beginning of her career come through the doors. I can’t count the times she was stopped in the street or in the grocery store by pupils and former pupils who wanted to say hello or give her a hug. That was who she was. Loved by so many.

My brothers and I had a pretty idyllic childhood. Our parents were incredibly loving, caring, and supportive. They encouraged us to try new things, to find what we loved and to always do our best. Our school summer breaks were mostly spent outdoors in some fashion or other. We’d usually go out for a couple of weeks on our little motorboat in the Stockholm archipelago. Back then, we could moor at an island and more or less have it to ourselves for a day or two. Even when the weather was horrible we found things to do. We read a lot of books and played cards or the odd board game until it cleared up again. 

When our parents had to go back to work, we’d go visit our grandparents at our summer cottage a couple of hours south of where we lived. It was basic living. We had electricity but only an outdoor toilet. No running water indoors, but a pump outside in the yard. It was a simple life, and we had the best time. Only a few minutes walk away was a lake where we spent many hours having fun, and it was where both my brothers and I learned to swim. The lane we took to get there was bordered by wild raspberry bushes and alpine strawberries. We’d eat until our bellies were full and our fingers were red. Then we’d bring the rest home and grandma would bake a pie with our offerings. 

When my children were born, they were blessed with similar experiences. We’d spend most of their summer break at my parents’ house, with the woods right behind to explore and find blueberries, and a small beach a short walk away where they could learn to swim. We’d go out sailing for a few days or drive down to the summer cottage. It was a different cottage from the one I’d enjoyed as a child but just as picturesque and with a few more amenities.

My mom and I had one huge interest in common. We both loved horses. She’d taken lessons when she was younger, and at the age of four, she signed me up at the local pony club. In those days, you could hire one of their horses or ponies for a couple of hours or even a whole day on the weekend. My mom and I took advantage of that many times, and I have so many wonderful memories of us following a trail through the woods or pastures, stopping somewhere for a picnic lunch, before returning home tired and happy. Once my interest in horse riding had solidified, I never looked back, and my love for the animals only grew. When I turned thirteen, my parents bought me my own pony, and he became my best friend. I had him for fifteen years. 

My mom was my greatest supporter and my best friend but in that I’m-still-your-mom kind of way. She’d stand in the freezing cold waiting for me to finish at the stables, take me to see a ballet, go out for lunch just her and me, show me how to use a sewing machine, and cook using a recipe – or without one. She was my confidant, my guiding light, and together with my dad, the foundation on which I’d built my life.

On July thirteen last year, around nine in the evening, my dad called me and said my mom had collapsed. He’d called the emergency services and was waiting for the air ambulance. They lived on an island with a car ferry at either end, so a helicopter was the fastest way to the hospital. A hole opened up in my chest. She hadn’t been very well for some time, but had refused to see a doctor. We believed she’d had a small stroke six months previously since her left arm and leg were weak and uncooperative. She finally saw a doctor in the spring, and after CT scans and an MRI, she came home and said they’d found no evidence of a stroke. I was confused and had asked her to have more investigations done, and she’d promised she’d see a neurologist. She never did.

I wasn’t sure what to do after the short conversation with my dad, but I started looking at flights to Sweden. After a little while, my older brother called to say he and my sister-in-law were on the way to meet our dad at the hospital, saying he’d keep me updated. He called again an hour later with devastating news. Mom was in a coma and not expected to survive the night.

I booked the first available flight the next day.

That flight was the worst I’ve ever been on. I tried to hide the tears brimming in my eyes from the cabin crew and other passengers, but I’m not sure I did a very good job. Not that it mattered.

It’s only a two hours, twenty minute hop, but it was the longest flight of my life. My oldest brother picked me up and said mom was still alive as far as he knew, and we went straight to the hospital. I held my breath and said a prayer she’d still be alive when I got there

I sat with my mom all night, wiping her face with a damp cloth, listening to her rattling breaths, recalling memories from my childhood, and telling her all the things I needed her to know.

Around ten the following morning, she finally fell asleep, never to wake up again. I’d lost her. My soul cracked, and a piece of my heart went with her.

It turned out not to be an ordinary Wednesday. My husband drove us to the hospital. I wasn’t too worried about it, but of course, there’s always that niggling little worry that something is going to be seriously wrong. But I felt good, my issues were annoying more than anything, and I was sure everything was going to be just fine. We found a parking space without too much trouble, so we joked and said it was a good sign. 

We didn’t have to wait long before a nurse came and brought us into the consulting room. We’d met the doctor before and had found him comforting, knowledgeable, and easy to talk to. 

He looked at me, looked down at some papers in a brown manila folder, and then looked up at us again.”I’m sorry,” he said. “After the procedure you had the other day, we found something. You have endometrial cancer.” 

I felt numb. My soul cracked open a little wider, and another sliver of my heart fell away. I couldn’t speak. My throat closed up, and something heavy slammed into my chest. Beside me, my husband inhaled sharply. Silence fell over the room. To say it came as a shock is putting it mildly, maybe more so because I was still grieving and trying to adjust to losing my mom.

The nurse passed out a box of tissues. I hadn’t even realized that tears were streaming down my cheeks, and my husband’s eyes were brimming with them as well.

As we were only in the very initial stages of diagnosis and finding out the extent of my cancer, I got no more information than that at the time. It was cancer. The oncologist couldn’t tell me what stage it was, how advanced it was, if it had spread, or what my prognosis was. He could only say it was treatable and curable.

While I was given what little information was available, my daughter was literally on a flight home to join us for Christmas. I couldn’t tell her. She’s a scientist and would have asked all the questions that I had no answer to and then have even more questions. Sciency ones. My son was in America, unable to fly home, and would have had the same questions. I couldn’t tell him either. My dad had suddenly been left on his own after sixty-five years with my mom. He was bewildered, confused, in shock, and utterly devastated. How could I put my cancer as yet another burden on him? 

All I could say was that I would have surgery in January. That had been on the cards anyway ever since my health issues began, so it wasn’t a total surprise. 

I used that as an excuse to explain why I needed to go for a CT scan on a Friday evening and an MRI on the Sunday. In reality, the oncologist wanted to get the scans done as quickly as possible and because we were flying out on the Monday for the holidays, he fitted me in as an urgent case.

I’ve always loved the holiday, but this year, I had to take on all the decorating, the cooking, and the prepping for three days of celebrations. 

In Sweden, traditions are tightly held by most people, and it certainly was that way for us. My mom would start in November baking many of the goodies such as a christmas cake, a spiced yule log, and several different types of cookies. She’d leave the gingerbreads, saffron bread, and the gingerbread house for us to bake and decorate when we arrived. The children always loved being involved and feeling as if they were making a difference by helping. 

Our main Christmas meal is buffet-style with hot and cold dishes such as salmon paté, meatballs, potatoes, marinated herring, reindeer, moose, and wild boar salamis, bread and cheese, and of course, the star of the show;  a cooked and cured ham that we can only get at Christmas. Most of the dishes are cooked, or at least prepared, from scratch, and my mom always took pride in what she created. She was an amazing cook, and we all looked forward to Christmas lunch.

We also decorate the house with things we gather in the woods right behind the house. A wreath made from pine twigs hangs on the door, a real tree stands in the corner, spruce twigs lie outside the front door like a welcome mat, and various types of moss, pine cones, and lingonberry sprigs are used to decorate around candle arrangements and in bowls or vases on tables. The scents of everything from the outside mixes with those of cooking and baking. It’s amazing. 

I spent Christmas holding my breath, not daring to think beyond the next hour, the next day. 

I felt responsible for getting everything ready. For doing what we always did. For making the holiday as special as it always was. It was a heavy weight on my shoulders, mostly placed there by me, a deep seated need to make this Christmas as close to all our others as I could possibly make it. Of course, I’d spent the past many Christmases helping my mom with all the work, but the responsibility had never been mine. It wasn’t really all mine this time either, but I wanted to make it wonderful for my dad, my brothers, my husband, and my daughter. Special in the same way it always used to be.

I survived. Anyone who noticed my tension and the tears that stubbornly wouldn’t stay away assumed it was due to my mom’s passing and her absence in our lives. I didn’t tell them anything different.

Once Christmas and the New Year were over, and we’d returned home, all I had to do was keep holding that breath and try to enjoy my time with my daughter before she returned to Australia to continue her work on her PhD. In some ways, I wished her departure would come quicker so I could take off the happy mask and break down. I hated myself for thinking that way. My time with family is so precious, and I appreciate every second I have with them. 

The surgery went as well as it could possibly have gone. It was a keyhole procedure, performed by a robot — directed and controlled by the surgeon, of course — and I woke up a number of hours later with five holes in my stomach. The next morning, one of the surgeons on the team who’d assisted, came by for a chat. He told me that from what they could see, it hadn’t spread, and they’d been able to remove everything. A slight sense of relief whispered through me. It wasn’t quite the end of it, though, as they’d taken some lymph nodes for testing and would also check the tumor itself, of course.

Three weeks later, I was recovering well from the surgery and was feeling great. I went back to the hospital for a checkup with my surgeon who was pleased with my progress. Then came the next blow. My cancer was of an aggressive form and had progressed through more than half of the endometrial wall, and they’d found a tumor cell in a lymph node — not a cancer cell, but a tumor one, which was the better of the two — and she recommended preventative treatment. It was my choice if I wanted it, but to me, there was no choice. I had to do everything I could to ensure I was around for many years to come. I need to be here for my husband and my children for as long as I possibly can.

The oncologist explained that I’d be given four rounds of chemotherapy, followed by twenty-five sessions of radiation, and finally, two rounds of brachytherapy. I went numb. My eyes burned, but the tears wouldn’t fall. This is preventative, I told myself. I don’t have cancer. I’m clear. I just need to make sure it doesn’t come back. 

After a lot of explanations, questions asked and answered, procedures detailed, and plenty of reassurances, my husband and I were passed over to a specialist nurse who would talk us through the rest of what was about to happen. She was lovely. Very kind, comforting, and understanding. I only asked one question. Would I lose my hair? The answer was an emphatic yes. Tears flooded my eyes, a box of tissues was pressed in my hand, I couldn’t breathe. Again. Or maybe I hadn’t taken a breath yet since it all began. In any case, I felt the anvil sitting on my chest, compressing my lungs.

As a child, I was bullied. By my classmates, their brothers and sisters, their friends, and friends of the friends. It was systematic, and no matter what my parents did, or how many times they spoke to the school, nothing changed until I started high school. It didn’t stop, but it got somewhat better. 

I was always told I was ugly, no one wanted to be with me, I wore the wrong clothes, and if I wore the same pair of jeans as one of the popular girls, then the bullies would find something on them that was different, something made up, invented, but when spoken out loud, everyone agreed and said it was there. I couldn’t win. 

The only thing I ever liked about myself, especially going into my teens, was my hair. The bullies couldn’t take that away from me. When I saw myself in the mirror and despaired, I would switch my focus to my hair and take comfort in its color, its length, and its slight wave. It became my security blanket. That has stayed with me long into my adulthood and even now, being middle aged, I love my hair. Whenever anyone mentioned my hair and the Scandinavian blonde color, I felt a small amount of ridiculous pride over never having dyed it. It was ridiculous because who really cares if it’s a bottle blonde or not? I guess I did. Now, I was suddenly faced with the reality that I would lose it all. It’s only hair, I hear someone mutter, but it’s not when it’s your hair, your  pride and joy, your security blanket, your identity that is about to fall out, strand by strand, chunk by chunk.

I chose to have a cold cap during my chemotherapy sessions, it’s akin to putting a refrigerator on your head, which would at the very least help protect my scalp and hopefully allow my hair to grow back a little quicker.

I arrived at eight one morning in March for my first chemo session. The cancer center has only been open a year and was bright, airy, and welcoming. I was shown to a comfortable armchair where I’d spend the next few hours literally being poisoned. I was ready for it all to get going. 

The nurse watched me carefully as the fluid started pumping into my system. She kept asking if I was okay. I was fine, I thought. Until I felt a light pressure on my chest and some slight nausea. It was enough for her to hit the alarm button and stop the IV drip. 

I suddenly found myself surrounded by ten medical staff, all gazing at

me with great concern. It turned out that I was allergic to that particular chemo. Who knew? I sure didn’t. After nearly an hour of waiting for the symptoms to settle, taking anti allergy pills and others for the nausea, the nurse started the fluids again. This time, it flowed without a hitch. That first session took nearly ten hours, and I was exhausted when I was finally allowed to go home with too many packs of pills to count. I had some I had to take that evening and even more over the next few days. I also had several different ones I had to make sure I took before, during, and after the next session, and of course, there were some anti nausea pills as well, since it’s so common with chemotherapy. Fortunately, I didn’t need many of those. I did count how many pills I had to take those first few days. Fourteen pills. Every day for three days. I felt like a walking pharmacy.

Chemotherapy is brutal. There’s no point in trying to put it any other way. The effects on the body are horrible, terrifying, and exhausting beyond anything you could ever imagine. I only had four of them, and I’m incredibly grateful that was all I needed. After the second one, the team doctor wondered, mostly to himself, if I needed six sessions rather than just four. He left us to check with the lead oncologist. I held my breath. Or was that still held my breath? He returned after a few minutes and said that four were enough in my case. My shoulders sagged.

My hair was still on my head. I was losing a little more than I normally would, but it was still there, still thick, still blonde. Maybe the cold cap was actually working?

On the way home from seeing the consultant, I had a phone call asking if I wanted to be referred to the wig specialist. I said yes, even though my hair hadn’t fallen out. I figured that just in case it all suddenly fell in one go, I’d have the wig as a backup. 

It took three weeks after my initial appointment for the wig to arrive. By then, ninety-five percent of my hair had come out. Huge handfuls fell if I even as much as touched it. I cried. In silence and alone, I cried until my throat hurt and my eyes were swollen. My husband knew, of course. He did his best to comfort me, but in this, I was alone. It was my identity being stripped away, and there was nothing he could do about it. I saw the pain and sorrow in his eyes, but most of all, I saw the love he held for me and the never ending support I could always lean on.

Chemotherapy ended quietly but emphatically. The nurses who’d looked after me for three months gave me hugs and wished me luck for the rest of my treatment. 

A month later, I was back at the hospital, this time in another part of the building for my

radiotherapy. Five days a week for five weeks. Compared to the chemo, this was child’s play. Yes, there were side effects, but they were negligible and easily dealt with. I could almost pretend that life was back to normal. 

When I was first told it would be every day for so many weeks, it seemed like a huge undertaking, but the days passed quite quickly, and before I knew it, I came out from my very last radiation. My husband told me to celebrate a little, but I still had two sessions of brachytherapy left. I wasn’t looking forward to it as it’s much more invasive, but I knew I could deal with it. Fortunately, I had the sessions back to back, the week after the radiotherapy had finished, so there was no waiting around.

The final one was last week. When my husband and I left the hospital, I told him I wanted to go for a drink before we went home. We found a bar nearby. Sitting outside, with cars and buses going past, and people walking by, I had two large glasses of cold, white wine. The anvil that had been pressing on my chest for seven months disappeared, and I let out the breath I seemed to have held onto for so long. I breathed in. Deeply. I let it go.

It’s taken me a while to process, but I finally feel as if I’m part of the human race, the ebb and flow of life, instead of standing still and watching it all go by, an imaginary glass wall preventing me from moving forward.

I’ve rejoined the world as a different person, battered, bruised, and with scars and experiences I will always carry with me. I don’t quite know yet how I’m different, but it’s there. I can feel it. My world tilted that day in December, the angle many times sharper after it had already come off its axis the previous July, and I’m not sure it will ever be quite straight again. Maybe I just have to get used to a new balance, a different perspective. One thing I’m sure of is that I look at my future with a different set of eyes, or vision. What I took for granted before is no longer quite as certain. 

I’m still here, still alive, and I have a future. It’s a future I will fill with love, gratitude, and hope. My husband is by my side as he always has been, and my children can fulfill their dreams knowing that I’ve done everything I can to share those dreams with them. I’m their mom. They need me no matter how old they are. I need my mom. She may not be with me in life, but she will always be with me in spirit. Her wisdom, patience, kindness, and most of all her love is something I will forever carry in my heart.