D-day

Nothing ever prepares you to the clogged shower drains or the strands of hair in your food.

It’s another side-effect of cancer that I have no control over, whatsoever.

Quite simply, losing my hair is heart-breaking.

I want to punch everyone who says it will grow back.

 

The day came. It felt right.

I wasn’t exactly ready, but if I hadn’t have done it that Sunday night, Sunday the 8th of November, I’m not sure I would ever have done it.

All the thinking about it made it 10 times worse. I had severe anxiety at the thought of shaving off my hair from the beginning of treatment, and I kept putting it off. But, that night I stood up to myself, and I was brave.

My mindset was that if I made the decision when to shave, I was in control. To me, shaving my hair meant that I was getting rid of one of the last bits of lymphoma on and in my body. Then, new hair would grow. It would be a new start: nothing would be stopping me now.

We had just finished a Sunday roast cooked by my mum, all the dishes were in the dishwasher and I felt completely and utterly on eggshells. I’ve been putting myself under so much pressure to shave my hair, but haven’t been able to do it. Losing my hair is something I have dealt with… to a certain extent, but being completely bald scared me SHITLESS.

I knew from the beginning that hair loss was inevitable, but like everything else I kept pushing it to the back of my mind. Losing my hair was what scared me the most, which seems stupid when you think about the fact that I have this terrible, life-threatening illness.

It seems completely ridiculous but hair really does define a person. Humans are much the same in terms of having eyes, a nose, lips, ears, two arms, two legs; hair differentiates us. Everybody’s hair colour, style or texture is ever-so-slightly different. My thick curls, uneven fringe and my knotty knots made me, me. I never brushed it, I just let it sit in a bun on the top of my head but for special occasions I would let it down.

Thinking about losing my hair made me anxious, especially to go out in public without hair at all because one day I would be bald. What would people think? What will they say? I won’t be able to go out without people talking, pointing and pitying. People like to pity bald people. And people with cancer. As long as I have hair, only people closest to me can know I’m ill. Hair loss makes the cancer obvious to everyone.

I used to dread the whispers. That girl has no hair. That girl must be ill.  That girl has cancer.

Right at the beginning of my treatment, I got talking to one of my closest friend’s friend, who has alopecia so he’s lost most of his hair and is one of the loveliest guys ever. We got talking about my illness and losing hair and he just said, “don’t think about anybody else, be confident in your own skin and it won’t matter that you have hair or not.”

I don’t think he will ever know how much his advice helped me to see things in a different light.

And it’s true. If you are confident in yourself, other people shouldn’t care if you’re bald or have a lion’s mane.

Even more than that though, I have the confidence to fight cancer and my baldness is a sign of my strength and that I am a fighter. If people want to talk, let them – why should I let them bring me down?

So I with this in mind, I became in control.

I went to get the shaver, my wig and towels from upstairs. I sobbed, and I talk myself out of it but I didn’t.

“Don’t do it if you’re not ready”

“You don’t have to do this.”

“You can carry on as you are, let it fall out.”

I was doing it – right then and there. That was my mindset. I forced myself to go through with it.

I sat in the middle of the kitchen sobbing my eyes out whilst my boyfriend shaved my hair with the razor and my mother used the scissors to cut my hair because it was too thick to go through the razor at the beginning. Both of them were trying to comfort me, but there was nothing that could ease the pain.

You would never have thought it, but it was painful. Obviously it was not a physical pain, but a pain that hits you straight in the heart. I sat in the chair for a good half an hour. I can’t really remember what I thought about. I just cried and it was completely unapologetic. I needed to cry. I needed to let it all out.

I looked at my hair on the floor. I was distraught, but like I said, it was dead hair. It was no longer my hair when I looked in the mirror or reached up to it, it was just tufts that were more and more of a burden.

Shaving my hair off was another step forward, a step into a cancer-free life.

My mother took my photo. I didn’t look at it, but when I was ready I was going to look at it. I wanted the photo to look back. To look back at how strong I was when I’ve conquered this and have a head full of curls once again.

“You’re still beautiful.”

I seriously saw another side to my boyfriend that night. An emotional side. A non-jokey, considerate side. He took hold of me in his arms and said that everything was going to be ok, it was only hair and it was going to grow back. For once he talked sense and I believed him.

That was all I needed.  It made everything ok again. It was only hair. And it will grow back.

I went to the shower, poured way too much shampoo for my stubble and washed my tears away. I basically have a head full of what resembles pubic hair, but I have an amazingly stunning wig to wear, so who cares?

I put on my wig, went down stairs. I had hair. I felt good. I even felt confident.

I am in control.

 

collage

More egg-cellent news…

After being diagnosed, which was in itself an overwhelmingly stressful period, came another overwhelmingly stressful possibility about my future: children – or the fact that treatment would mean it was likely that I would become infertile, which is an overwhelming thought for an 18 year old.

It was my parents who brought it up with my consultant, in one of the very first appointments. I was there in person, but my mind was completely AWOL, stuck in a parallel universe where I didn’t have cancer and I was healthy and my life was completely normal. I think I managed to hold myself together for all of ten seconds, then I began to sob uncontrollably. I’d always thought that one day I’d probably have children of my own so the thought of not even having the option to have children was just as devastating as finding out about the cancer in the first place.

Would I be a crazy cat lady, surrounded by cats and empty bottles of wine? A spinster for the rest of my days on earth?

The consultant was totally honest with me from the offset.

Chemotherapy affects everybody in different ways, but it may affect a woman’s ability to have children as the ovaries, therefore the eggs, are damaged during treatment.

During the appointment we broached the possibility of going through IVF/egg freezing and I was definitely keen. Within a few days I had an appointment at St. Mary’s Hospital in Manchester to discuss the matter with an IVF doctor.

The process of egg freezing took two weeks but we were really working against the clock because the cancer was worsening and I was deteriorating. The IVF would mean that chemotherapy would be postponed and I needed to start my treatment as soon as possible.

After a few phone calls between hospitals, the doctors decided that I could go through with the IVF providing that I started it that day. They could tell how important to me it was that I at least had the option of children in the future, so they were willing to halt chemotherapy for the time being. That meant I would be starting chemotherapy a week after finishing my IVF treatment: August the 7th. So technically, I had two weeks of ‘freedom’ and could enjoy my boyfriends 21st and could potentially go to the Royal Welsh Show – excellent.

The first appointment at St. Mary’s was emotional and really, really scary.

The doctor talked my parents and I through the whole treatment process but I could barely look the doctor in the eyes and I was crying. Admittedly, I was difficult and petulant and huffy and I’m sorry about that now but at the time it was incredibly hard: I was 18 years old and had to decide whether I was willing to inject hormones into my body daily for two weeks and for an outcome that may not affect me anyway. It was hard to see the bigger picture and find perspective at the time, but I went ahead with it.

I signed what felt like a thousand consent forms though I didn’t even read them. I knew what was going to happen. It was just another hurdle for me to jump over, another hoop to jump through. As we had travelled so far for our appointment, they squeezed everything into that day so we didn’t have to come back the next day. I was sent for blood tests, scans, x-rays and had to sign more consent forms and meet the nurse who explain the injections. IVF is very complicated and to be honest, I still don’t understand how it works but I had to inject myself twice a day between 4-7pm for two weeks, and go to the hospital in Manchester every other day for two weeks in order to have scans and to take blood samples. My ovaries were monitored in order for the doctors to know when the eggs were the perfect size to be removed. Travelling to Manchester every other day was a huge pain in the arse and I only had two weeks until I started my chemo so time was running out. This fortnight was the perfect time to go out and have fun with my friends, especially as they were about to head off to university and I was destined to be bedbound and bald for the next six months, but it was back-to-back appointments and travelling for me.  I was upset that the ‘best summer of my life’ was not turning out as planned and although my health had to come first, it was really frustrating that I was missing out on everything.

So, we managed to convince the hospital (and my amazing nurse at the time) to let me go to the Royal Welsh Show for two nights, and miss one of my appointments. My eggs were growing to the size they needed to be, so they were happy…ish for me to go providing I kept up my injections.

They also warned me not to drink…too much. Apparently alcohol and IVF do not mix.

I found that out the hard way.

 

I injected myself at 4pm on the dot and by 4:15 I was ordering my first drink of many, many, many.

Although there were some excellent side effects to the IVF, like the fact that my breasts were massive for the first time EVER, there were also negative side effects: I was a complete emotional wreck. And let’s face it, alcohol and sky-high emotions don’t mix. I was carried back to the caravan at 10pm, a drunken, messy mess. It may not sound like the cleverest thing I’ve ever done, but it was a chance to let my hair down (while I still had it), before treatment.

I am immensely glad that I was allowed to go to the show because I was allowed to spend time with my friends, but everybody else had now started to find out about my illness, and they didn’t know how to talk to me, approach me and were shocked to see me out and about; at the time I didn’t know how to handle them either, so there were many awkward exchanges.  By now, I don’t care what people think, and I think of leaving the house as a big achievement.

 

Two weeks flew by and I was removing my eggs in no time. It is usually a small procedure, under sedation but things were going to be complicated for me.

It wasn’t as simple as just putting me under anaesthetic for two reasons: First of all, the mass in my lung cavity was pressing against my wind pipe so I would probably have trouble breathing under sedation. Secondly, my mother has a genetic condition in which she reacts badly to anaesthetic so I, too, was at risk. Anaesthetic, therefore, was completely out of the question.

The only possible option then was to have an epidural.

It was not pleasant, nor was it enjoyable. At all.

I was awake for the procedure so I had to walk into the operating theatre.

The inside of a theatre is scary – all the machines, and equipment, beds that look like long metal trays. I had to sit on the side of the bed in order for the anaesthetist to inject the epidural with this long needle.

“Lucky you’re nice and slim, it’s much easier to insert.” At this stage, I wish I had my old puppy fat to protect me. But after a few minutes, I was numb anyway.

Unfortunately, the next part of the procedure was less like an episode of Casualty and more Fifty Shades of Grey.

My legs wide open hoisted in the air and strapped to something or other.

As if that wasn’t mortifying enough, the doctor sat in front of me but it felt like she was on top of me and I was just praying she wasn’t going to turn all Christian Grey on me. Luckily, she didn’t and instead I could just feel her wriggling this huge phallic shaped giant camera inside of me.

The fact that I was awake made everything seem so much worse – I just wanted to forget about the bloody eggs and run away somewhere, anywhere. But I couldn’t feel my legs so I just had to wait it out.

Even though the nurses tried to make me feel more at ease by asking questions about my life and played with my hair, I really just wanted to just get on with it, silently. I looked at the little screen and watched this camera move around inside me. I could see eggs in the ovaries. The procedure felt like it had taken hours but it was finally over and they sent my eggs to the lab to count and check if they were suitable for freezing.

They pulled 14 eggs that day. They are sitting in the freezer at the hospital in case I do need them one day in the future.

Perhaps they will not be needed. Perhaps I will have enough children to start my own football team or perhaps I will be a crazy cat lady – but it will be my choice. It will be one less decision that cancer has made for me and one less option that cancer has taken away from me.

Apparently my lung is now a fruit basket

Telling the people you love that you have cancer is the most horrible, hateful and hardest thing ever. I had never seen my grandparents or dad cry before, and it was heart breaking to see them distraught. It was worse than hearing the news for myself, first-hand.

If I look back, I’m sure I only told three people about my illness: my best friend, my mum and my boyfriend. It’s impossible to imagine how the people you love will react and impossible to imagine the way it makes you, yourself feel, knowing that you are the one causing them to feel this way. It was torturous to watch them hear that you have cancer. Good for me that bad news travels fast in our little town so I didn’t have to tell many people.

Once everything had sunk in – I had lymphoma, a type of cancer and I wasn’t going on holiday at the end of the week – things moved quickly. Even though it was heartbreaking to watch my friends go on holiday without me, I knew I couldn’t risk going. For once, I would put my health first. I would be a week behind with all my appointments if I did go, and what for – cheap booze and clubbing and let’s face it, I’d be the one who’d come back with a tattoo on my forehead. As it turns out, in that week I had seen my consultant, been to Manchester for my Pet CT scan and I had another CT scan in Bangor Hospital.

There will be other holidays. There’s only one Megan D, and my health was much more important than a trip to duty free, a piss-up and a sun tan.

Things were moving fast. I had all my scans and a biopsy done within a week, which was scary because I’d heard that the NHS was renowned for being slow so this meant things were bad. But you can’t rush results so it was just a waiting game. We knew that I had Lymphoma, but there are 2 types – Hodgkins and Non-Hodgkins and within those types there are different kinds. Very complicated and I won’t bore you with the details! The biopsy confirmed that it was Hodgkins.

Then came another appointment with my consultant and so, another chance for me to sob my eyes out. In fact, it’s only very recently that I go to appointments and don’t cry! Like a Nicholas Sparks film, there’s just something about my consultant that sets me off as soon as I see her…

After a couple of nail-biting weeks, waiting for results and numerous heart aching trips to Manchester for injections and emergency IVF/egg-freezing treatments, I finally received the results of all the scans and tests.

The scans confirmed I had a tumour sitting between both of my lungs but leaning against my right lung and on my wind pipe. The mass was 10x9x7cm, between the size of a grapefruit and a water melon. I wasn’t entirely sure how that was possible: scary indeed. But this was the reason behind my constant breathlessness. The tumour had spread to the right side of my neck and to my lymphnodes. I also had a mass on the side of my neck; I could actually feel it when the doctor stated it out.

Finally, I had answers, though not at all what I had expected. The skin condition started over a year ago. I’ve been pale and breathless for a very long time too. I dread to think how long that watermelon-grapefruit tumour has been just lodging in my lung cavity like an uninvited squatter. Within two weeks I was starting my chemotherapy.

I didn’t talk much about it to anybody, as I was scared. Helplessly and impossibly scared about what I was about to embark on and it was easier to block it all out until I had to go through it.

I knew about all the side-effects as I’d witnessed my mother go through breast cancer over five years ago. I saw her disintegrate both physically and emotionally in front of my eyes for months, and now, that would be me. I can still see the effects of cancer on her today and I dread to think how it will change me, change my personality, change my body and change my future.

I was no longer going to University to study nursing. I had to face all my friends leave home, to go and have the ‘time of their lives’ while I lay at home losing hair and twiddling my fingers. I was taking a gap year, and I wasn’t even doing anything worth talking about. I would love to be able to just work or do anything other than stay in bed all day.

To be honest there are no leaflets or past-experiences that can prepare you for cancer. Each battle is ferociously personal. I have a box full of leaflets under my bed, unread. As silly as it may sound, I have not felt the need to read them – I’m very ill and to get better I need to grin and bear the treatment and fight like hell. Besides, my friends and family can offer me more compassion, reassurance and hope than any leaflet can – and an almighty hug when things get a little bit tough.

‘It ain’t easy being wheezy’

As the days went on and I was still the same, I became more of a wreck. Exams were starting in a few weeks and the work-load was just getting bigger and bigger, especially when I kept putting it off. I had no energy to do any of it. My skin had deteriorated once again and I assumed it was just stress. I was pale, losing more weight and completely breathless even after short walks or going up a big flight of stairs. This made no sense because I was taking what felt like a million iron supplements every day. My emotions were all over the place. Everybody was worrying about me, which obviously made me feel worse.

Are you depressed? Are you pregnant? Are you eating properly? You’re not taking drugs are you?

Everybody thought I was hiding something and treated me like I was harbouring this big secret that I didn’t want to reveal. It was my body that was hiding secrets: I was just as in the dark as they were. I didn’t know what was wrong me. I had no idea. My mind was all over the place and I was trying to put on a brave face for the sake of everyone else as well as myself. So, I carried on as normal as I could: went to college and work at the weekends then went out with everyone. To be honest, it was just the closest to me that knew I wasn’t myself because nobody else could have known what was going through my mind.

The not knowing was the worst part.

Somehow, probably by miracle, I managed to sit all my exams, though I’m not entirely sure how I got out of bed for some! At this point, my parents didn’t want me to sit the exams as they had never seen me like this before. I have always taken school work and exams seriously and pride myself in doing well, but I was convinced and obsessed that I was going to fail. I couldn’t remember any of the set poems at all, barely even long enough to write it down in an exam. Looking back, I feel stupid for pushing myself to that degree. In hindsight, I feel so stupid for pushing myself. They are only exams and at the end of the day your health and well-being is much more important than a few letters on a piece of paper.

June 25th, a week after finishing my a-levels and college we had our sixth-form prom. We had finished our A-levels and college, we had a good few months of summer before gap years and university and the ‘real world’ – it was sure to be jam-packed full of silliness, hangovers and unforgettable memories. I was due to start my nursing degree in Cardiff in September. Our prom was amazing, everybody had a great time: too much wine, too much dancing and far too many photos. It was a lovely way to farewell with the year and it was definitely emotional because this was the last time that we would ever be this certain, this together. Nobody really knew what was around the corner; I certainly didn’t.

The morning after the prom, I had a killer hangover and unfortunately, an appointment with my GP. I’m quite certain that I was still drunk as I lay on the bed to let the doctor examine the rash and my breathing. In fact, I’m sure the doctor knew as well; she could probably smell the wine on my breath. In fact my own stench filled the small room as soon as I walked in. My mother just happened to mention to the doctor that my grandfather recently had pneumonia, and asked if I could also have got it. Although it was unlikely, I had nothing to lose and I had been complaining of breathlessness for a long time, so I was sent for a lung x-ray.

I can’t stand to think what would have happened had I not been sent for that x-ray. I got the x-ray that Friday afternoon, and by the Monday I was back in the GP office receiving my results.

That particular Monday morning, I remember waking up with a list in my head of things I needed to do that week before going on holiday to Malia with my best friends on Friday. With the list swirling around my head (Euros, bikini, sandals), I was surprised when I got the call to go and receive the x-ray results but thought nothing of it and went to the surgery absent-minded.

As I walked to the GP’s room, I knew something was wrong in an instant. You could cut the tension in the room with a knife. And the doctor was just awkward and I could tell she wanted to tell me something, but she just sat there, all stiff and tense. Like she didn’t really want to tell me but she knew she had to. She went through the results, and told me the terrible news.

As soon as she said the word Lymphoma I started crying. I didn’t even know what it was, but I could tell it was bad. I could see the C word forming on her lips.

Lymphoma is a type of cancer, she said. I could no longer hear or process anything she was saying.

My tears went from a few measly raindrops in the corner of my eyes to full on deluge-style, torrential rain ugly crying. I was crying like a mad woman, without control or shame. I didn’t even feel embarrassed. I just wanted my mum. It was ironic that it had always been my mum taking me to all my doctor’s appointments in life, but when there was something as big as this, something as brutal and life-changing as this, she wasn’t there to ask silly questions or hold my hand. The rest was a blur. The doctor was sympathetic and apologetic but by this stage I couldn’t really take anything in or hear anything other than my own heart pounding through my chest cavity. But I came out of the room not fully knowing what was wrong with me, only I knew that the word cancer had been mentioned.

I walked out of the surgery and straight to my car. I sat sobbing in the driver’s seat for a good few minutes, shaking and bawling my eyes out. I had no idea what to do. If ever there was a time when a ‘what to do when you find out you have cancer’ guide needed, this would be it. Who do you call first? What exactly do you tell them? More importantly, how do you stop the crying? It was a strange time, sitting in my little car in the car-park: I had all these thoughts swirling around in my head that I couldn’t make sense of but I felt completely numb too. Like I was looking in at myself but it wasn’t actually happening to me.

Finally, I reversed my car and drove like a drunken woman, somewhere – anywhere. I just drove. I couldn’t go home, as my little brother was there alone and he was the last person I wanted to break the news to. I needed my mum. She would know what to do, not just because mums always know what to do, but because she’d been through this herself. I needed to break down in her arms. I stopped the car and rang her. No answer. (She is a teacher so she doesn’t have her phone on her all day). I cried even more at the thought that I didn’t know what to do.

I drove to my best friend’s house as I knew she would be home. I ran up stairs and scream-cried, ugly tears in her face. She must have thought I had just murdered somebody.

I couldn’t talk. I could barely breathe. She was obviously distressed as she didn’t know what was going on.

“You’re bloody pregnant aren’t you?”

I shook my head. That was an attractive alternative. Once I had calmed down, I managed to tell her some of what the doctor had said. All I knew was that I had lymphoma, a type of cancer. She began to cry and soon we were both sobbing. I felt silly for not knowing more, but even now when I go to appointments, I just can’t listen on what they say. I think it’s mostly a coping mechanism.

When my mum finally called me back, she knew something was wrong as I wouldn’t usually call her when she’s at work. I was still crying and all I managed to say was ‘x-ray results’. She raced over to where I was. We went back to the doctors together and she explained properly what was wrong and that I needed to go and see a specialist to get a full diagnosis and discuss next steps and treatments.

That Monday was by far, the worst day of my life.