Getting Chemotional – Part 2

Almost unbelievably, I’ve found myself facing my last chemo session this afternoon. It feels equally like it’s taken an eternity to get here and the last few months have flown. I’ve said again and again that chemo is the gift that keeps on giving – nausea, fatigue, constipation, infections, hair loss, sore feet, painful skin, scaly eyelids, emotional turmoil, more fatigue, mood swings, chemo brain, loss of appetite, relentless appetite, my cyborg woman PICC line – but ultimately, it’s probably going to stop the cancer from coming back, so I owe it a lot. Even though I HATE IT.

Chemo (and cancer) has taken a lot from me over the last few months, but it’s given a lot too. Perspective for one thing, gratitude for another. Determination. The odd emotional melt down. Excessive snot (who knew running with no nasal hair was such a snotty affair?). Appreciation for what all the incredible staff at Guys Hospital and throughout the NHS do. Joy in the little things, pure joy when fatigue doesn’t stop me from doing the things I love. It’s made me  obscenely thankful for the people who have really been there, offering calls, texts, visits, food, love and company when Chris and I both needed it most. I consider that we are very lucky. The (x factor word) journey is far from over, but I’m glad to be getting back on the train after a pretty brutal stop in Chemotown.

I know there are a million posts on what to expect and how to deal with chemo, but I wanted to throw my hat into the ring to share some of the things I’ve found make chemo just that bit easier. This is long. So sorry in advance. And if you’re just starting out, I’m sending you a big dollop of love, from right here.

1) The Dumbledore Deal. You know in Harry Potter and the Half Blood Prince when Harry and Dumbledore go to retrieve the horcrux from the cave? And Harry has to make Dumbledore drink all of the potion before they can get the locket? Well, I think drinking on chemo can be a bit like this, especially on FEC. So find yourself a Harry Potter and get them to engage in the Dumbledore Deal with you, reminding you to keep hydrated even if you don’t feel you can. Drink loads before chemo. Drink loads during chemo. Drink loads after chemo. And keep drinking, even if you feel sick.

2) Fizzy sweets and mouthwash. Chemo makes your mouth gross. From a thick coating on your tongue to a distinct lack of saliva, sores and ulcers, your mouth goes through a range of different experiences during both FEC and Tax treatments. I found Dentyl’s clove mouth wash worked a treat to help me keep my mouth clean and infection free, while the odd fizzy sweet made my mouth feel almost normal for a moment or two.

3) Hair loss. There’s no avoiding the truth of it – hair loss is a bloody kicker. I chose not to cold cap, so I knew all of my hair would fall out pretty quickly, and almost exactly on cue, 19 days after my first chemo, it did. I’d cut my hair short, then gone for a buzzcut pretty much straight after my first chemo to reduce the shock of losing my barnet. While losing the hair on my head was hard, I think I was more affected by losing my eyelashes and eyebrows because my chemo moonface made me look like a cancer patient. Hats can cover up bald heads and eyebrows can be drawn on, but there’s little to be done about empty eyelids. Alas, it’s not all doom and gloom. I’ve had fun playing with headscarves, rocking turbans and wearing buffs with bows – some of my favourites came from ASOS, The India Shop and vintage stores. Hair loss is hard and looking in the mirror is equally as tough some days, but it’s worth it to evict this squatter, hopefully for good.

4) Get away from it. I know it’s tough when you’re full of drugs, facing appointments and battling fatigue but I can’t recommend getting away for a few days enough. At Christmas I spent two weeks in my hometown and during the weekend just gone, I spent a glorious two nights of blissful comfort in Portsmouth. I don’t know if it’s the sea or good company, or just being removed from the situations that have become the norm over recent months, but getting out of London allows me to get away from cancer and just have some room to breathe – so it’s worth it if you can make it work.

5) Support. Being diagnosed with breast cancer as a young woman can feel hugely isolated. I went to one event where I was the youngest person in the room by at least 20 years and I felt totally alone. Luckily (or not so luckily because they’ve got cancer too) but I’m so grateful for my Boob Gang. They know what I’m going through and are beyond supportive when I find myself snot crying in the park. The Younger Breast Cancer Network on Facebook is also an infinite resource of information from women in the same situation as you – whatever stage of treatment you’re at. Dimbleby Cancer Care offer an amazing range of services to make living with cancer easier. Look Good Feel Better teach you how to make your face look a bit more your own when your skin looks like tracing paper and your distinct lack of eyebrows makes you look like an alien. Breast Cancer Care have their Someone Like Me service. The Willow Foundation offer “special days” to help steal you away from the clutches of cancer for the trip of a lifetime. There’s so much support out there if you look for it

6) Emotional blackmail. This sounds like a weird one but before every chemo, I would at some point look Chris square in the face and say in my most petulant voice “I DON’T WANNA DO CHEMO CHRIS”. At this point he would respond with (in his stern, managerial voice) “do you want to go to Glastonbury?” I’d look down at my feet, shuffle a bit and mumble a “yes”. Then he’d say “well then. You have to have chemo. Deal with it”. I’m hoping to bookend my treatment with Glasto (I was diagnosed about one week after last year’s festival and we got tickets for this year and by hook or by crook, I will be there). Find an end goal. Strive for it. It’ll keep you going.

7) Rest and exercise. Knowing when you should rest and when you should exercise is HARD. Fatigue from chemo is a f**ker (sorry for bad language but it really is). You’ll never know tired like it, if you’re affected, but if on some days you can find the strength to work up a little bit of a sweat, it’s worth it. Rest when your body tells you to, try to walk once a day, even if it’s just for 20 minutes. And if you try something more strenuous, leave your expectations at the door. Don’t be hard on yourself when you don’t go as fast or as far or as hard as you used to. Be kind to yourself and your body. Remember it’s going through a lot too.

8) Food and shopping. This is easily the thing I’ve found most stressful about being in chemo. Eating is hard. You either have no appetite, stuff tastes weird or your tongue explodes at the merest hint of something spicy. Shopping is hard. A few weeks ago I went out to buy stuff for tea (dinner to you southerners) and when they were out of stock of the main component of my fish pie, I was so tired I almost cried in the Co-Op. I just couldn’t face shopping. And the aftermath! Washing up! Washing up for days! Endless piles of plates and pots and pans! That’s a pain in the backside too. But ask for help. Most of the time you’ll find your friends are only too bloody happy to help you out. So make the most of it. And if your friend is going through chemo, ask them for a shopping list and do their shopping for them. Drop a cooked dinner off. Just pop in and ask if you can do the dishes (or hoover for that matter). They might not know how to ask but they’ll be so, so grateful.

9) Feel what you need to. Chemo is a whirlwind of emotions (as demonstrated by my posts over the last few months). I’ve been guilty of slapping a smile on when I really didn’t feel like it. While there’s an element of “fake it til you make it”, that’s not always possible and nor should it be. This is hard. Let yourself have a cry when you want to, even if it’s those wracking sobs that leave you feeling like you can’t breathe. Make jokes about cancer if that’s what you need to do even if you’re worried it might make someone feel uncomfortable. Get angry. Cancer is bullshit! It’s ok to say it. It’s ok to feel whatever you want to. And don’t ever feel like it isn’t.

10) Lastly. Most importantly. Don’t give up. You can do this. And me and anyone else who has been through chemo are right behind you. It might feel like you can’t make it, but you will. Then you’ll look back and think “that was a breeze” – even though really, it was a little bit like hell. This quote was sent to me earlier this week (thank you Sandra) and it’s fitting. Remember it:

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in.” – Haruki Murakami

5 thoughts on “Getting Chemotional – Part 2

  1. Vicki Norman says:

    Yet another excellent blog Alice. Re no 4 we have a cottage near Richmond. If you ever want to use it.. just ask. I know it’s near home, but it near enough for contact and independence.
    Vicki xx

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