Chemo, Coping and Chamomile Tea

Have you ever wondered what Chemo is like?

• Imagine a very very very very very bad hangover. With chronic sinusitis to boot.
• Imagine your worst ever ice cream headache.
• Imagine having a thick green fog in your head that you can’t push aside.
• Imagine being weary to your bones with legs so heavy you can barely lift them to stop yourself tripping over.
• Imagine feeling so dirty on the inside that you want to turn yourself inside out and scrub scrub scrub yourself clean with a scourer.

Why am I writing about this? 

I was private about what happened to me for so long – I felt shame, and like I was dirty – WTF was I even thinking there. But I’m way past that point now, and I want to share this to give other people some insight, some ideas, some hope – whether you’re going through it yourself, or you know someone who is. Or you’re just curious.

Me and my round of IVF

One of the things that sharpens your mind about whether you want a family or not, is a wee bout of breast cancer. I always thought I never wanted a family. The thought of the PTA meetings and the playground politics made me violently shudder (Read the book ‘Why Mummy Drinks’ and you’ll understand how I felt!). However, when you’re faced with the possibility that you might never even have the option… it’s amazing how your real feelings emerge.

I did want children it turned out! So I embarked on a round of IVF to harvest my eggs, and up until a few years ago I had half a football team in a freezer in Hammersmith hospital.

Me and Chemo

After finding the lump and going through all the subsequent operations, tests, bla bla bla, the key test result arrived – the test to find out if the cancer had spread out of the breasts past my lymph nodes and into the rest of my body.

I remember very clearly where I was that day (a pub in Ealing), who I was with (Ian), what the weather was like (blue skies and sunny). The phone call was from the Breast Care Nurse Michelle, the news hot off the fax machine.

It hadn’t spread. Celebration!

However my Consultant couldn’t tell me categorically that I didn’t need chemo, so I opted for the belt and braces approach and ordered the chemo.

My thinking? If there’s even an inkling that this b*****d has spread then I’m not taking chances I need to be zapped. I needed FEC treatment, injected into my vein at an outpatients appointment. 6 appointments in total, once every 2 weeks.

I recorded some of how I felt in my diary (I’ve shared some exerts with you below), and also in videos. Slightly embarrassing argh! But as I said, in the spirit of Usefulista, they might be of use, to someone.

Chemo 1 – Round 1 to me

I recorded a 30 second video of my after my first chemo. I’ll share it when I can find it! (If you’re reading this and there isn’t a link, get in touch with me and it’ll prompt me to upload it! helena@starttheripples.com)

Chemo 2 – Round 2 to me

So how have I been feeling since chemo 2? Ok. Not great but definitely liveable withable.

One of the things I noticed from early on with the chemo was the emotional roller coaster, the feeling good, then totally crashing into a mess. (It could of course have had something to do with the fact I was coming to terms with having breast cancer but hey, needless to say I was emotional!)

Did I tell you my hair started falling out last Sunday (6th Nov)? Well it did.

I am not complaining! some hair is better than no hair!

Chemo 3 – Round 3 to Chemo (just)

Half way there.

Later. 3 hours later ish. I feel sick. I haven’t felt like this before, well not as sick/ nauseous. I actually feel like I want to put my fingers down my throat and puke. I feel sorry for myself. I just had a few momentary tears.

The cycle of chemo – physical and emotional feelings go uuuup, and doooown. Wow.

Chemo 4 – Round 4 to me (just)

So life is great. I’m doing so many things I want to do and love to do

This is when the cumulative effects of the chemo started to show their ugliness. The creeping doubts, the swinging emotions, the feelings of being alone and that no one cares (which of course was total crap), all exacerbated by tiredness and foggy chemo head.

Chemo 5 – Round 5 to me

My 10 second home video sums up my mood 🙂

Chemo 6 – I WIN!

I am still officially the luckiest person alive.

This is just a test, a challenge to win, and I shall, and from it I shall be stronger, healthier, and wiser and happier. Life will be fuller and more beautiful and I will appreciate it more than I ever have before. I love life. I love being alive. I want to live for many many many years. AND I WILL.

My (Hopefully) Useful Learnings: 

• Be kind to yourself and put yourself first – I found the Mulberry Centre (Isleworth, Middlesex), which is an incredible place; calm, quiet, a haven. I had several complimentary therapy sessions (aromatherapy massage) – they can offer cancer patients up to six sessions of one-to-one therapy (e.g. acupuncture) and up to eighteen sessions of each of their wellbeing classes (e.g. yoga/ pilates/ relaxation). I’m sure there are similar centres elsewhere.
• Make “Chemo Day” a day out – i.e. a positive experience. Take different people, treat yourself to something, after the chemo session do something / go somewhere nice (even if it’s just laying down on fresh bedding on your bed listening to your favourite music), celebrate one more down and what you’ve achieved.
• Write a diary – see my post on why keeping a diary is so powerful
• Try not to drink alcohol, get lots of sleep, eat healthily – I vowed to continue living my very social lifestyle to say “fu** you cancer”, but in the end it wasn’t the right attitude. I needed sleep, I needed to drink more water than wine, I actually needed to be healthy to say “fu** you cancer”. Luckily I realised it early on in the journey, which made the journey much less bumpier than it would have been.
• Exercise – exercise exercise exercise. The Key! (In my opinion). Just getting out of the house is so so important (especially when all you want to do is hide away. That’s a dangerous downward spiral). But even more than that, the endorphins and serotonin (happy hormones!) that are released when you exercise make you feel great – they gave me a real ‘fu** off cancer’ feeling when I was exercising. Even if you just do a daily walk, do it. (I love the woods, it gives me energy and peace. Ironically the nearest woods to where I lived, and therefore where I walked, were in a cemetery! Ha ha, black humour).
• A note on wee – mine came out red after chemo! The first time I thought I was haemorrhaging!! I wasn’t, it was just the chemo. But they forgot to let me know it would happen…..
• Recognise if your feelings / moods are darkening – if you don’t have a shit day you’re not normal. But if the shit days turn into lots of shit days on the bounce, talk to someone and ask for help. Don’t be ashamed if you’re depressed, it’s ok to not be ok.
• A note on fertility and IVF – if you’ve been advised that chemo could make you infertile and you’re considering IVF, don’t be put off by thinking you can’t afford it, or because you’re single. You may be able to get funding from your local PCT for a round of IVF – I wrote to my local PCT and told them my situation and asked for their help, they helped. If you don’t ask…
• A note on Hair – I wore an ice cap when I had chemo. It’s an ice cold helmet straight from the freezer and can stop hair loss (by freezing the hair follicles I guess?) It’s not for everyone (it’s not pleasant, it gives you a sicky ice cream headache), and for some chemos it won’t work at all. With my chemo – FEC – it worked ok. I lost hair fairly evenly all over but had enough left that I wasn’t bald and didn’t need to wear a full head scarf.
• Another few notes on Hair – get it cut shorter (short) in advance of chemo, that way it doesn’t feel so noticeable/ bad when it falls out. Your hair grows back – and having lost your hair, or living in fear of losing it all, you’ll never have a bad hair day again!!!

Wow that was a long article!! When I started writing this I thought ‘hmmm do I have much to say on chemo really?’ Ha ha yup, I guess I do! If you’d like to share anything back – thoughts on what you’ve read, any questions, your experiences – please send me an email or leave a comment I’d genuinely love to hear from you.

Helena x

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Related Resources that might be useful 

The Mulberry Centre – for anyone affected by cancer

Chemotherapy – overview, what happens, side effects

Breast Cancer Haven – supports women through their breast cancer treatment