Just A Note To Say…

Today I received this package in the mail. It’s from a friend of mine who survived cancer as a child and her message was so touching. It means the world to me reading messages like this and it also makes me realise that people are actually checking their bodies and listening. Telling the world about my diagnosis was the hardest thing I’ve ever done, but if something good comes from it then it’s absolutely worth it.

And for a little update: I’m very close to the end of chemotherapy now, having completed 15 rounds, with just 1 more to go. I’m tired and it’s getting tougher and tougher to fight off the drugs, but I can see the finish line and I’m making plans – I’m staying focused on that! And hey, if I’m finding this tough then the cancer is too.

A Day On The Ward

So many people are curious about what goes on when I say I’m off to chemotherapy, so I thought I’d give a little taster of a chemotherapy day!

Disclaimer: If you’re squeamish, don’t read this one!

Injection. The first thing I do every morning (not just chemo day) is take my injection. I’m on daily anticoagulant injections for 6 months until my PICC line is removed because I managed to get a blood clot in my arm within a week of having my PICC line fitted. (I mean really, what are the chances of that.)

Tip: I always ice up for 5 mins before injecting – these injections are a little stingy and this really helps!

Healthy Breakfast! The doctors have advised me that there’s nothing I can really do to keep my neutrophil counts up (my immunity to nasty bugs, viruses and infections) but I tend to think of this as my very last shot to get some nutrients in me and give them a spike. It’s a mental thing. If my neutrophil counts are too low, I won’t be able to have chemo today, so I want to give it everything I’ve got.

I load up on blueberries, raspberries, banana, nuts, chia seeds, cacao nibs, anything I have in the kitchen really to get some goodness inside!

Set Off. If I’m well enough, I’ll usually try to walk the 40 minutes to the hospital. I tend to feel at my best on the morning of chemotherapy as I’ve had 7 days to recover from the last hit so this is a great opportunity to do some gentle exercise. I also have a long day of sitting down ahead of me so it’s good to get moving.  Last week it was raining so I caught a tube instead and used the extra time to grab a coffee with my housemate.

Welcome to the Chemotherapy Day Unit. I arrive at the ward and catch up with the nurses. I’ve got a great team at my hospital and we tend to spend more time chatting about funny dating stories, cooking and what we’ve been up to than medical talk.

I love that we’ve built the kind of relationship where we can be a little silly. If you’re having something uncomfortable, like an implant inserted into your tummy it helps to be able to say ‘STOP SMILING WHILE YOU DO IT’ and be overly dramatic and laugh it off. I can get very anxious about having treatment every week and this really eases my nerves. I also always bring someone along with me. It’s a long day so you need a fun companion and you also never know when you might need to hold someone’s hand – that’s the nature of hospitals!

PICC Line Dressing. First things first, my PICC line dressing needs to be changed. This has to be done weekly to prevent infection – we have to be super cautious about infections as my immunity is so low from the chemo. What might be a minor infection for someone else could have serious consequences if you’re on chemo.

What is a PICC line? It’s almost like a little plug. When I have chemo, or have my bloods taken, or sometimes when I have certain injections, the nurses use my PICC line to access my veins rather than pricking me with needles each time. It’s essentially a long line that runs through my vein and all the way up to my heart. It’s staying in my arm until treatment ends because my veins are too tiny to be able to have chemo via a cannula, like a lot of patients do. To be honest, I don’t really notice it any more. I still get squeamish having my dressing changed, but as my nurse said the other day – I’m definitely getting tougher.

(Pros: no nasty needles / no risk of the chemotherapy leaking out and burning you / you can’t feel it after a while. Cons: the procedure to insert it isn’t that fun / it gave me a blood clot / you can’t lift weights, which makes workouts limited.)

Next Up, Blood Test. The doctors use this to check whether my body can take the chemo this time. They’re looking for all kinds of things: neutrophil counts, vitamin deficiencies, liver function. I was refused treatment a couple of weeks ago as my immunity was too low to be able to take another hit of the ‘poison’. It was actually pretty heartbreaking. When you’re told you’ll finish chemo on a certain date, not a day goes by that you don’t open up the calendar on your phone and count down how many days are left to go. My treatment was pushed back 7 days and I felt cheated – someone moved the goalposts. In hindsight, I was so ill that weekend that it’s obvious to me now – of course I couldn’t have taken the chemo. But in the moment, it can be hard to see past that. Since then, I’ve been told I need to slow down and rest more. I’m a very active person and even when I’m at my weakest I struggle with this – my mind wants to be out running and working and doing all the fun things 26 year olds should do but my body can’t keep up. I’m learning.

Observations. Next, my blood pressure, temperature and weight are checked to ensure all is in order before we start chemo.

Coffee Break! My favourite part of the day. It takes about an hour for the blood test results to come back so this is when I grab my chemo pal and we head down to my favourite coffee shop for a quick brunch. This is a really important part of the day for me as it’s my chance to take a breather and reset. The more and more chemo I have, the more anxious I get about having it. For the first 12 weeks of my treatment, I’m having weekly chemo and after a while that can become quite overwhelming. You’re back in the chemo chair before you’ve really had a chance to recover and for me, my symptoms get worse with every chemo. It’s important for me to have some fun around the procedures so that my day isn’t ‘just’ chemo.

Results. This is when I either get told I have to go home and wait for my immunity to bounce back (or whatever part of my body is playing up right now) or I get the go-ahead to have chemo today.

Providing I get the all clear…

The Cold Cap Goes On. Oh the joys of the cold cap. This is a hat which can help to save your hair during chemo. It’s super pretty. My sister fondly calls it ‘the medieval torture contraption’. It doesn’t work for everyone and even if it does, it’s usual to still lose a lot of hair throughout treatment. I’ve managed to keep my hair so far, but it’s seriously thinned. I’ve had 12 rounds of chemotherapy (4 cycles) and I would estimate that I’ve lost about 40%. I’m not sure if it will hold out for another 4 cycles, but let’s just wait and see.

The hat works by essentially freezing your scalp so that the chemo is less likely to attack the hair follicles. The first twenty minutes are like the worst ice-cream headache you’ve ever had. I snuggle up under about 4 blankets and drink a hot tea and try to distract myself until it passes. After the twenty minutes are up, you become numb to it.

Here is a stunning shot of me mid-cold capping:

Pre-Chemo Meds. While the hat is doing its thing, I’m given a whole load of different drugs to prepare me for the chemo. One of them is given as an injection and within seconds makes me so sleepy that for the next few hours, I’m pretty zoned out. This is when I usually take a little nap.

Chemo Time. I have weekly paclitaxel which takes an hour to administer and every three weeks, I have carboplatin too, which adds on another hour.

Lots of people ask me if I can feel it when the chemo goes in: the answer is no, I can’t feel a thing! I’m usually napping at this point from that injection I mentioned or if I have the energy, I might watch a movie. I can’t really concentrate on much through chemo as I’m in discomfort from the cold cap and my mind is foggy from all the medicine so we choose super easy watching. Think Paddington Bear kind of movie.

Chemo’s Done: Cold Cap. After all the chemo is done, I still need to wear the cold cap for another hour and a half or so before I can go home. I get pretty restless at this point!

Home Time! By the time I go home, it can often be a good 7-11 hours after arriving, depending on how the day’s been. Any number of problems can come up that might cause a delay.

At this point, I’m exhausted. I will struggle to form a sentence, sometimes even a word, and I often sound like I’m drunk. Walking in a straight line will require all my concentration and I’ll be dizzy, faint and a little nauseous too. This is why you need your chemo pal.

Fun Time! I always do my best to do something nice after chemo. No matter how ill I feel, and even if I fall asleep on the table (yes, I’ve done this), I try to get out for dinner or at least have a bubble bath and a movie night with a friend. From the day of my diagnosis, I’ve been insistent about doing something fun after every scary thing. If you do that, trust me- you can get through anything. The fun thing will pull you through it and it’s also important for your memories. When I look back at every chemo session and every scary surgery and procedure, even the day of my diagnosis, the things I think of are the fun things I did that day. That’s my little trick!

Last time, we got pizza! X

THE ‘CAUSE’

All the time, people ask me how I got breast cancer at 25. The simple answer is: we have absolutely no idea.

GENES: The genetics team swooped in when I got my diagnosis. Breast cancer in your twenties? Hello faulty genes. I was given leaflets on the different types of genes that can cause breast cancer and a mini-biology lesson on how this happens. But after all of this, I had a blood test and my results came back all clear. My genes are normal.

LIFESTYLE: I’m a bit of a health nut and if you open up my food cupboard you’ll see a whole load of chia seeds, oats, peanut butter, olive oil, nuts, fruit, you name it. I’m one of those people who counts how many fruits and vegetables she’s getting every day, meticulously scrutinizes her protein intake and rarely eats processed meats. Before cancer I would be up at the crack of dawn for gym classes 6 times a week. In terms of alcohol, I would have the occasional night out, but for the most part I had cut down in the past year as I was enjoying how much energy I had when I didn’t go crazy the night before. I honestly find myself staring at my chia seeds these days wondering if it’s them that caused this. I’m clueless.

I’ve been given a nutritionist (there are some perks to cancer). I attended her two hour talk on eating habits and I couldn’t wait for my individual sessions to start. I love learning about nutrition and among all my appointments, this is the one I really look forward to. It feels familiar. This week, we analysed my diet and exercise habits and after over an hour, she concluded that I’m doing all the right things. She’s just as baffled as the rest of us.

THE MODERN ENVIRONMENT: A few tips she did mention were to cut down on my use of plastic (and never heat food in it) and to go organic. Organic eggs, meat, yogurt, milk, vegetables, the lot. I won’t explain the ins and outs of this as I’m not an expert, but essentially, it’s about minimizing the amount of chemicals and unnatural substances going into my body as the cause could be the modern lifestyle in general. I can see that. I don’t really understand it anymore when people comment on how rare it is to get breast cancer in your twenties. This is my new normal and I’m in touch with lots of girls just like me. We go for coffee, we go for lunch, and we’re all being treated for the same thing. We’ve formed our own little community. In my hospital alone, there are at least four of us girls in our twenties having chemotherapy for breast cancer. It makes me wonder how many there were a few months ago, a year ago. We are part of a generation who grew up in a world of plastics, chemicals, processed foods, mobile phones – maybe the reason why we’re facing this so young is a combination of all of that. But like I said, I know no more than the next person.

MOVING FORWARDS: I will naturally be more aware of what I put into my body, use on my skin, and how I live my life. I have to accept that I will likely never know why I got breast cancer. It’s frustrating as it means every day I question all the little movements that make up my day, wondering whether the answer is right in front of me. I’m hoping there will come a point where I can just let it go and be content with not knowing…

X

WHAT CANCER?

‘You have had a complete radiological response’.

On Tuesday I had an MRI to see if I was responding to treatment.

The past three months have been a whirlwind. The toughest three months of my life. On 19th July, I was told those three little words no one wants to hear: ‘you have cancer’.

From the get-go, I’ve tried to keep my head up and stay positive. This is how I stay strong. Of course, I let myself have the occasional meltdown. Have all the meltdowns you want if you have cancer – you are entitled to this. It’s part of coming to terms with the diagnosis. But then get up, go out, and focus on all the good things happening. As my Grandpa always used to say: you have to have the bad times to make the good.

One thing I’ve particularly struggled with since starting chemotherapy is the idea that the treatment isn’t working. It doesn’t work for everyone. Triple Negative Breast Cancer is notoriously aggressive and mine is also grade 3. Unlike other types of breast cancer, there are no targeted therapies for Triple Negative Breast Cancer. If the chemotherapy doesn’t work for me, I’m at a bit of a loose end as to what comes next. Cue multiple meltdowns.

I have some good news though… I got my MRI results today and I can’t really believe it – no cancer could be detected. THE CHEMOTHERAPY IS WORKING! My little lump is gone. I’ve been in tears all afternoon and honestly? I feel like I’ve been given a second shot. The past few weeks have been particularly tough with symptoms and today is the first day I’ve felt well in three weeks.

I still can’t yet say I’m cancer-free as there may be rogue cancer cells that may have been too tiny to be picked up on the MRI. I also still have to finish up chemo, which we’re on track to complete by mid-January and which will hopefully destroy any cells about. I’m not even halfway through my treatment yet so there’s still a lot more ahead of me, but knowing that it’s working is the best news I could receive. Hair grows back. Muscles grow back. Fatigue and sickness wear off. So give me all the chemotherapy and I’ll take the side effects.

IS IT CANCER?

I want to share the story of my diagnosis so that people understand the unique challenges young people are faced with when identifying cancer. Sadly, cancer can be more aggressive and fast-growing the younger you are, which is why early detection is key.

I have Triple Negative Breast Cancer, which is breast cancer in an aggressive form. It’s also Grade 3, meaning it’s fast-growing and unlike my normal cells. But it’s Stage 1, so it’s contained and has not yet spread. Generally, the earlier breast cancer is found, the better the chances of surviving it. Every day I thank myself and my doctors for getting that diagnosis as now we can fight it.

I found my lump when I was in the shower. I wasn’t looking for it, I was just washing myself when I felt a hard little pea-sized shape in my breast. I stopped and felt again. Still there. I got myself dressed and started Googling. Nine out of ten lumps in breasts are benign – phew, worry over.

And that was it. I carried on with life as usual. I went on holiday, I went to work, I went to parties and I was in no hurry to get that little lump checked out.

We think we’re invincible in our twenties. Cancer happens, but it happens to other people. Every day we see posters on the tube telling us to check ourselves, diagrams of what to look out for, and always the same message: if you find a lump, see your GP.

But when you’re twenty-five, a fitness enthusiast and have a kitchen full of health foods, you’re ticking all the right boxes. The reality is that you don’t think it would or could ever happen to you.

Here’s the thing – cancer isn’t like that. It’s indiscriminate. One in two of us will get cancer in our lifetime and what I’ve come to realise is that it’s more common in young people than I had thought. In one week, there were three girls my age diagnosed with breast cancer by my consultant.

After waiting it out, I eventually went to my GP. I had a jam-packed weekend ahead of me and my housemate was ill with a fever. When I felt a sore throat coming on, I took myself to the doctors and was prescribed antibiotics. I was already headed for the door, coat on, when I remembered the lump. ‘Actually- while I’m here, I wondered if you could take a look at something.’

The doctor thought it was a fibroadenoma (a benign breast lump commonly found in young women). I displayed no usual symptoms of breast cancer and ‘the odds are against it – you’re too young’.

I still don’t know why I cried, but I did. I asked her ‘how can you be sure?’ I’d heard of ultrasounds being used to look at breast lumps and that sounded pretty good to me – it would be the final confirmation. She could see I was upset so she said she’d put me out of my misery and she’d refer me on to a consultant for a second opinion.

Two weeks later, another examination and the same conclusion. I’m too young, it’s a fibroadenoma and it doesn’t have the characteristics of cancer. Because I was now being examined at the hospital, it was formal procedure that I’d have an ultrasound too.

By the time I had my ultrasound scan, a week after my second examination, I’d pretty much dismissed the idea of cancer. Even when they told me they needed to take two biopsies during the ultrasound, I was more concerned about the biopsy process than the results. I spent the next week frustrated that I was missing a pool party and that I couldn’t exercise because of the pain from the biopsy site. It hadn’t occurred to me that my life might change so drastically.

It was a chain of fortunate events that led to my diagnosis. I consider myself lucky and I’m now in the fantastic hands of the NHS and underway with treatment. Mammograms aren’t usually available for women below the age of 50 so we’re left to self-examine. Even then, how many of us actually check ourselves every month and do we really know what we’re looking for? I didn’t. At school, we’re taught about poetry and the life cycle of a flower, but I for one was never taught how to check whether I had cancer. I found a cancerous lump and I dismissed it. Meanwhile, in approximately one month, it had grown to 17mm, the size of a cherry.

I could easily have waited until my cancer was Stage 2, 3 or 4 to get checked. I could easily have been turned away by my doctor, who mentioned that she would normally have waited for me to come back three times before referring me. She did the right thing by acting immediately and I am incredibly grateful.

Since being diagnosed I’ve joined cancer support groups for people my age and sadly, I’ve come across too many people who are dealing with late diagnoses because of these challenges. This has to change. No one is too young for cancer.

If I leave you with one message it’s this:

  • Take a couple of minutes out of your day at least every month to check yourself.
  • If you notice anything that doesn’t look or feel right, see your GP.
  • Be persistent in pursuing a full examination.

For more information on identifying breast cancer, the following sites are pretty useful:

https://www.cancerresearchuk.org/about-cancer/breast-cancer/symptoms

worldwidebreastcancer.org

Please keep in mind that breast cancer is different in everyone. Breast cancer lumps are usually painless and attached. Mine moved around quite easily and didn’t seem to be attached – it was the ultrasound that confirmed that it was.