Highs and Lows

Chemotherapy is the standard treatment for cancer so in order for me kick this cancer’s arse I must endure chemo.

I am currently on my 10th round of chemo out of twelve and am reacting well to the treatment. My chemo was called ABDV, which is the standard treatment for Hodgkin’s Lymphoma – but I reacted very well to treatment and am now on a different chemo called ABD to which I am also *hopefully* reacting well.

 

A pattern has emerged during and after chemotherapy – straight after treatment, I don’t feel to crap and can muster up the strength to spend some (most) of my money in the Topshop close to the hospital. The following day is what I call the start of the shitty week: I have a shitty week then I have a good week and then a shitty week, then a good one and so on.

It’s hard to put to words how exactly chemo makes you feel. In general, it makes me feel tired and confused and angry and weak and upset but it is hard to pin-point exactly how it makes me feel in one word.

The shitty week is all of those feelings bundled up and magnified. I am bedbound and weak and on those days I wish I had a bedpan because I can’t be bothered to get out of bed. Perhaps the expression I would use is that it is like looking in on yourself through a window: you can see yourself lying in that bed but you aren’t in your body or mind. I am not me for the few days following chemo. I walk on eggshells around myself and my thoughts; so do my family and friends (although I don’t actually walk anywhere because I stay in bed). The one thing I know for certain is that I need to be alone, and they do to.

It’s impossible to control my mind on the days where I am ill. On the one hand my mind is a complete mush of empty nothingness but on the other hand, I spend so much time trapped in my own mind that I end up over-thinking just about everything.

I cry – a lot. Often about stupid things, things that happened last year, petty things like not having petrol in the car (even though I wouldn’t be driving anywhere any time soon).

Pinterest is my new favourite thing, as are interior design websites – I spend hours designing houses I’ll probably never own.

I also count down the days, the hours until I know I’ll feel better again.

 

By mid-shitty-week I upgrade to the sofa downstairs and I can look at the television without seeing two Jeremy Kyle’s or eight Loose Women or Holly and Phil swirling around the television. By this point in the week, my friends know to bring me popcorn and chocolate to cheer me up, which always does.

It would probably be fair to say that at the moment my life is one ‘Lazy Sunday’. The best part about being home all day is I get to live in warm, cosy pj’s without feeling an ounce of guilt.

It also turns out that daytime television and being at a full-time bum isn’t too bad, especially when I have excellent anti-sickness tablets. After my first treatment I was very, very sick, but for my second treatment they gave me stronger anti-sickness and I haven’t been sick since – for which I am over the moon! My anti-sickness tablets are probably life-savers, or at least, they have kept me somewhat sane. I depend on these every day because without them, I couldn’t function without constant nausea – plus they are great for preventing hangovers! If I go out, I take extra to make sure I won’t be ill in the morning… they should really start to sell these in the supermarket!

 

Then, almost miraculously, comes the day at the end of the shitty week where I am able to function properly! The rest of the week is spent going on fabulous adventures with my friends, mostly to various cafes in North Wales, and spending actual time with my family and boyfriend. During this week, I can be a normal teenager.

But the cycle continues and the shitty week arrives once again, much too soon. And so… I am back to bed.

 

Although I joke, as much as I enjoy the days stuck in the house watching tv on the sofa, munching on an assortment of junk-food, I very much look forward to finishing treatment in January.

Sometimes I just blank out the bad week entirely which must be a kind of coping mechanism because I don’t want to look back on these past months and remember the days I’m stuck in bed. I want to be able to look back and remember all the laughing with friends. I want to remember how great my family and closest friends have been. I want to remember how strong I have been.

I want to remember at the end of this journey that although there were terrible, crappy, earth-shattering lows, there have also been extremely amazing highs – all of which couldn’t be possible without my family and friends.

These steroids are making me fat

Popcorn.

Ham.

Blackberry crumble.

Ice cream.

Cherry tomatoes.

Nutella and breadsticks.  Especially Nutella and breadsticks.

Cravings: I have more cravings than a pregnant woman, though I look pregnant thanks to my steroid belly. I have gained a whopping, wait for it, stone and a half since starting chemotherapy in August but I’m just putting back all the weight the Lymphoma caused me to lose. Slowly, I am going back to how I used to be pre-cancer. Even though I hate putting on weight, it means that I am starting to get better: that’s the way I have to look at it. If my new Kardashian arse means I’m getting healthier, then pass me the Nutella. And biscuits.

And more Nutella.

Although I was really ill before being diagnosed, in many ways, I could overlook and shove my bad health to one side because I was losing weight – It was just falling off! I had lost three stones and I had never been that slim. In fact, I was thin for the first time in my life and I looked fantastic, there’s no wonder my boyfriend fell for me (I’m joking, he fell for my personality at first sight).

Before, I had always been bigger than my friends, I hated exercising and lost every race at school and I even had to do extra laps in cross country because I tried to cheat and jump over the fence as a shortcut! I was, and still am, far more in my element with a paintbrush or a glass of rose in my hand so diets never worked for me. So I just had to settle with being bigger than my friends.

Anyway, everybody was complementing me on how good I looked after losing all the weight. My confidence was sky-high and I wore anything and everything I wanted – it felt really good. I became a lot more adventurous with my clothes and traded in my glorious baggy jumpers for crop tops, leather and jumpsuits, which were all completely out of my comfort zone.

Everyone around me was asking what my secret was. How did I lose so much weight? What was my secret? Was I eating properly?

My answer: “I don’t know, it’s just falling off.”

Of course, everyone thought I was hiding something or just not eating. I did not have much of an appetite but I didn’t have an eating disorder. Lots of young people lose puppy fat without explanation.

It wasn’t until I began to notice all the other symptoms, like tiredness and breathlessness, that I figured something was wrong. Perhaps it wasn’t normal to shrink this much without eating kale and spinach or at least hitting the treadmill a few times a week. I was worried because other people were worried about me: they accused me of being depressed, of looking ill or not being myself.

Even though I lost all my weight due to my illness, the message I want to give to everybody, especially young girls, is this: even though we live in a world where human value is often placed on the way a person looks and we are judged as a whole by the way we look or what we wear, but being skinny is not the most important thing in life. It is a strange illusion to suppose that beauty and skinny means goodness. It is far more important to be healthy and to feel happy in your own skin. The lesson that I’ve learned is that being thin doesn’t always mean happiness or that you’re healthy. Losing weight feels good, but it means nothing if you’re not healthy.

Every fortnight I go to the hospital to have my chemotherapy, and I have a routine weigh-in, basically to keep track of my weight and check how I react to the treatment. Everybody reacts differently – some gain weight and others lose weight.

With my luck, obviously I put weight on, and every time I get weighed I am heavier than I was two weeks ago.

“Can I take my shoes off to make me lighter?”

“Can I take my jumper off too? It’s heavy wool.”

The nurse and I always have a giggle at my new cravings or at the stupid things I come up with.

“The next time you’ll see me, you’ll need to take down the doors so I’ll be able fit through.”

Everybody in the waiting room laughs as they hear me shout and mostly swear from the weighing room.

“Another half stone, FIDDLE STICKS.”

I’m telling you, it’s these bloody steroids that are making me fat.”

(Definitely not all the food I’m eating).

I try to take everything with a pinch of salt and am often tongue in cheek with everyone about my weight. I laugh when I can, which is, as they say, the best medicine. Besides, if I don’t laugh, I would probably cry.

And who want to be in company with a grumpy, crying bitch?

I would be lying If I said that I don’t cry;  to be honest I have a good cry on a weekly basis, and I really don’t know how my boyfriend puts up with me. Sometimes it’s good to let out steam, even if it is completely irrational and because the crumble ran out. If I didn’t cry and have that moment to just let it all out, I couldn’t be my chirpy, lively self in the company of others,  and I don’t want to make this period harder or more miserable than it already is – not for me or anyone else.

Weight is not the most important thing in life, and it has taken me something like this to realise. I am going to conquer this illness, even if I come out the other end as a bald, 20 stone 19 year old: I will once again have my health… and perhaps those Nutella cravings will have disappeared.

But…let’s face it, probably not.

Ever.

Keep Calm and Put a Wig On

When my mother went through chemotherapy for breast cancer over 5 years ago, her hair loss was the most difficult part for me. I don’t know why, but for a 13 year old, seeing my mum, somebody I look up to and love, without hair was heartbreaking.

But, with or without hair, she still had a warm heart and was still the same person inside, and I know I am too.

 

I’ve been hairless for a few weeks now and I’m getting used to the wig.

I knew from the beginning that I wanted a wig, despite advice from past-cancer patients that it was too itchy, or too hot.

The NHS provides you with a synthetic wig whilst going through chemo and so I had a consultation at the hospital but I didn’t feel at ease, and the wigs weren’t what I thought they would be. I wanted a wig that looked like my hair, because the whole purpose of a wig, is to have it looking as close as possible to your natural hair. As the wigs were synthetic, they didn’t have curly haired wigs other than an afro and though some would argue otherwise, I don’t have an afro!

After my first consultation I didn’t go back. I got referred by my doctor to CLIC Sargent which is an amazing charity that helps young people through cancer, and my social worker is an absolute gem. CLIC Sargent then had the power and contacts to refer me to The Little Princess Trust.

The Little Princess Trust is a charity who makes wigs for children and young people who lose their hair going through chemotherapy. They understand that for a child, or a young person, losing your hair is overwhelming, and they want to feel as normal as possible.

The charity have made the whole process of losing my hair less stressful and less scary, as I know when my hair comes out I have a real-hair wig to wear. These wigs are truly amazing quality, and you can’t really tell that it’s a wig. I had a consolation with a fabulous lady that works with The Little Princess Trust who covers my area. She actually suffers from alopecia herself, so she knows how hard losing your hair is, and she made the appointment so laidback and made me feel at ease and comfortable in her company, and with my choice of wig.

They are a truly amazing charity, and I am in the process of collecting money and raising awareness for the charity as a thank-you for their amazing work. Since I have been collecting for the charity, people have been so generous in donating and even organising their own events in order to raise money, and I would like to thank you all from the bottom of my heart for your support and kindness.

My two amazing best friends, that are my rocks through this gruelling time have actually cut their hair into a ‘bob’ style, and donated their hair to the Little Princess Trust in order to create more wigs to help other young people who will lose their hair because of cancer. Since we posted the photo of their new hair on Facebook, the reaction was so crazy and overwhelming – other girls have cut their hair off to donate to the charity.

My wig is a stunning real hair wig, which looks identical to my natural hair, but a little bit longer. Obviously, you can’t have a wig that looks exactly like your own hair, and I can’t really put it up on the top of my head as I used to, because the hair line at the sides are noticeable to be fake. As the wig is a real hair wig, when you wash it (…but only once a month – bingo!) it actually curls or goes wavy and you can use products and even electric hair tools on it. To me, it was important to have my curls, or even just waves. These curls might make me confident, and make me feel a little bit more like me.