If you could change just one thing about your treatment for breast cancer, what would it be? Jackie explains why she would choose the chemotherapy consent form.
If I were to rewrite the consent form I would add two things
All too often there’s a focus on all the things cancer treatment takes away (seven pages of focus in my case). Admittedly it does make quite a dent. Without even reading the form, for example, I knew it would tug at my hair, attack my nails and pluck out my eyebrows (in truth, I didn’t think too much about nose hair, which is not to be underestimated. And while losing your hair downstairs may sound like a treat it does have a rather adverse effect on your ability to pee in one direction).
If I were to rewrite the consent form I would add two things. First, I would include truths that would make even the most hardened oncologist blush (and us feel normal when they actually happen).
And second, I would add the positive side effects that many tend to overlook. Nowhere do you see the words: ‘By signing up to this course of chemotherapy drugs, please be advised that your skin will become silky smooth and soft and you won’t need to shave for a good few months.’
And what about your taste buds? Everyone mentions the metallic taste and the fact everything turns to cardboard. But what about the sheer delight that comes with rediscovering your taste buds every cycle? Right now, a month after my last docetaxel, I can honestly say that food has never tasted this good. And I never want to take that feeling for granted ever again!
I didn’t think much about losing my sense of taste
Interestingly, for a self-confessed foodie the one thing I didn’t think much about before treatment was losing my sense of taste (so preoccupied was I with thoughts of peripheral neuropathy and neutropenic sepsis). But when the bread rolls turned to Brillo pads and the madras felt like a korma I started to realise just how important taste is to my general happiness. Of course I’ll never forget rejecting my first glass of water or eating a tasteless sea bass with a teaspoon (due to a lovely helping of mouth ulcers). But my most vivid memory throughout this whole journey is the moment I discovered I could taste bread again. (I am not sure my friend will ever forget it either, as I proceeded to demolish our shared bread bowl and was craving seconds before our starters arrived.)
Even though I tried hard to reclaim them each cycle (see top tips below) I am glad I lost my taste buds. Far from putting me off the kitchen it has brought me closer to it. Every time they returned I would dig out my plastic spatula and icing sugar, indulge my passion for baking and try to develop my skills. Anything to keep smiling!
I baked for patients and staff at the cancer day unit to help turn chemo days into milestone events. I started the search for the ultimate ginger chemo cookie through my blog and have worked my way through everything from ginger nuts to syrup-soaked ginger cakes (admittedly not cookies) over the last four months to help combat nausea. Delia’s ginger nuts seem to have come out on top. (If you’re keen to join the challenge and have any great chemo cookie recipes or tips you’d love to share, please do post them below. Can you top Delia’s ginger nuts?)
And I even covered a vanilla syrup sponge cake in more than 450 fondant tablets for my last chemo to thank all the staff – while also demonstrating I could cook something that isn’t brown or beige.
One month on from chemo and I am still going strong. Determined to enjoy every mouthful of toast from now on, I’ve set out to complete a year without buying sliced bread. Three weeks in and I’ve already baked four loaves and a batch of crumpets. Not sure it will do much for the waistline (why do you think I took up running – see last month’s blog post) but it’s certainly raising a smile. I also spent the weekend covering a cake in cricket balls to try and achieve my ambition of baking for the BBC cricketing radio show Test Match Special (which sadly didn’t make it past security even though one of the commentators contacted me to say he was excited about receiving it). And I have promised myself I will one day master the dreaded macaroon (it is my baking nemesis). I’ve got the ingredients. Just need the courage!
I found a way to seek out happiness in every day
When I started out on my cancer journey I feared chemotherapy more than anything else. I didn’t want to be made ill for months on end. I didn’t want to live my life attached to a digital thermometer. And I certainly didn’t want to have less hair than my fiancé at 32. When I look back over the last five months, however, I think the hardest part for me was the waiting, the wondering and the obsessing over that consent form (which was explained to me three times). When treatment started I found a way to seek out happiness in every day and find solutions for each of the side effects I experienced. Yes there were hard days. Yes there were times when I just wanted to look in the mirror and see my old self. But there were also more positives than I can even remember. And now things are starting to grow back I’m excited about rediscovering myself all over again – not just my love of Green and Black’s white vanilla chocolate. Plus I still have good skin and hairless legs!
Six ways to reclaim your taste buds
For those of you going through treatment and looking to fire up those taste buds, here are a few things that helped me. I ate three meals a day (even when I couldn’t taste anything) to keep my intake of healthy foods (and bowel movements) up and my weight down, so these are just a few extras that made me smile.
1) Extra-strong mints - No chemo kit list would be complete without these powerful minty sweets. They accompanied me everywhere and reminded me that my taste buds were still there – albeit in hibernation.
2) Lemon - Eating out is a big deal for me (even on chemo, although I was careful). I always order tap water and found that by asking for lemon slices too I could keep drinking it without having to buy soft drinks. And it’s healthy too.
3) Ribena (or your favourite squash) - When water tastes bad it really tastes bad, so having flavourings on hand was a real lifesaver. Ribena does remind me of the chemo drug epirubicin now though (along with cranberry juice), so you might want to choose something a little less red in colour! Fruit juices can feel a bit too acidic at times.
4) Smoothie ice lollies - There’s nothing like a cold ice lolly to soothe a sad chemo mouth. I dug out my childhood lolly-making set, and tried freezing grapes (which went a bit soggy) and sucking on pink lemonade lollies, but my favourites were smoothie lollies.
5) Fruit - Sugary foods tend to hit the spot on chemo, so fruit is ideal. Blueberries, apples and pineapple chunks worked well for me. I tried to eat the apples and blueberries whole (with skin on) rather than juicing, to get all the nutrients.
6) Herbs and spices - Stock up on things like paprika and coriander and you’ll be able to spice up your life even on chemo. Just remember who else is eating with you (although it is entertaining to watch someone fanning their mouth while you’re trying to find some flavour).
My advice to those about to tackle the toxic stuff is this: read the consent form, understand the consent form, sign the consent form – and then forget the consent form. Arm yourself with extra-strong mints and a splash of cordial and think not about the day you will lose your taste buds, but about the day you will reclaim them.
As someone currently tucking in to tea and homemade bread I can assure you: it is a day you will never forget.
Bon appetit!
You can read more from Jackie on her blog or follow her on Twitter at @Jackie8.Jackie has also written a chemotherapy kit list to help those undergoing treatment.
Healthy eating
It's common to lose or gain weight when you have treatment for breast cancer. Learn more about how to eat a healthy diet and looking after yourself after treatment.