Chemotherapy – Tara’s advice and tips
My Diagnosis
I was diagnosed with triple-positive breast cancer in September 2019, a couple of weeks after I turned 35. As my tumour was quite big and there was evidence of cancer cells in my lymph nodes, my suggested course of treatment was chemotherapy before surgery, to try and shrink the tumour and prevent the spread elsewhere.
Due to the triple-positive receptor status of my cancer, I was offered FEC-T chemo which I had once every 3 weeks. I had three rounds of FEC, which is Fluorouracil (also called 5FU), Epirubicin (also called the Red Devil) and Cyclophosphamide. Followed by three rounds of docetaxel (Taxotere®), alongside targeted therapy drugs Trastuzumab (Herceptin) and Pertuzumab (Perjeta). The targeted therapy continued for another 15 rounds and will finish at the end of January 2021 - over a year of treatment! So grateful to our NHS and for my continued treatment throughout the pandemic.
I have made a list of things that helped me get through chemo, I hope there are some useful ideas here, to help you try and make the best of this challenging time. Not all chemotherapy drugs cause the same side-effects though, so ensure you discuss with your oncology team for their full advice.
Preparing for chemo
Get everything organised and coordinate whatever support you might need to allow yourself to fully rest. If you plan to feel unwell it will take the pressure off you, then if you don’t feel too bad, that’s a big bonus! My team advised me that I might feel a bit rough for two weeks then have one good week, but in reality it was more like one week of needing a bit more rest and then normal life again for two weeks, which was lovely. I worked from home in between my sessions too when I felt well enough, but listen to your body and do what works best for you.
- Get a notebook to take to your appointments, there is a lot of information to take in during your consultations, this will help you process everything and have notes to refer to later.
- Get a digital thermometer and a journal or notebook for tracking your symptoms. You could use your usual health app on your phone/smartwatch if you’re already using one, or try an app like OWise.
- Your oncology team should give you a helpline number to call during your chemo if you’re concerned about any symptoms, save it in your phone so you have it ready when you need it.
- Pack a hospital overnight bag ready, just in case.
- Do some batch cooking and stock up your freezer with nourishing foods.
- Get a dental check-up and switch to an SLS-free toothpaste and a soft/sensitive toothbrush throughout your chemo.
- Ask for help, or accept offers of help, but be specific. E.g. Deliver a lasagne on Tuesday, collect my child from school on a certain day, walk the dog at lunchtime, drive me to an appointment etc.
- Think about what you need to prepare in order to feel comfortable and able to fully rest and relax. For me, this involved doing a big deep clean and tidy at home, so that I knew I wouldn’t be fretting about housework and could recover in a relaxing, calm environment.
- Prepare how you’ll spend your time resting, whether that’s writing a list of shows or films you can watch, getting a few books to read, a colouring book or other crafting activity etc.
- If your chemo may cause hair loss, think about what you might need to feel more comfortable with this. Would you feel better if you proactively cut or shaved your hair before it falls out, or get a wig or headscarf ready for when you need it.
- You may want to consider other hairloss too, such as eyebrows. I got my eyebrows tattooed very shortly after my diagnosis and was so happy that I did. Having brows helped me feel so much more normal during chemo. There are loads of other great options too if tattooing or microblading feels too permanent - eyebrow pencils and powders, stencils and even very realistic stickers are available.
- Pack a bag to take with you to your chemo session with everything you might need (e.g. sweets/mints to disguise the chemical taste - ginger can help with nausea, earphones, a book to read or crossword/puzzle book, snacks,phone charger/power bank).
- Stock up on your go-to things that make you feel good. Chocolate, bath bombs, herbal teas, essential oils etc.
- Stock up on paracetamol and an intense moisturiser (I used fragrance-free Palmer's Cocoa Butter, but Aveeno and MooGoo also come very highly rated).
Pre-chemo meds and Tests
A blood test is usually required the day before chemo, this is to check everything looks good for your treatment to proceed the following day. To help your veins out, make sure you drink plenty of water and stay well hydrated the day before, and day of your chemo (in fact whenever you know you’ll be having some sort of needle or cannula, make sure you get plenty of fluids in!).
It is common to be prescribed medication to take before your chemo - steroids, or anti sickness, or a combination of both. Set alarms to remind yourself, if you’re worried you might forget to take them.
If you’ve been prescribed steroids, don’t worry if you feel extra hungry. Just listen to your body and eat what you fancy. For me, that was ALL the carbs! The steroids are also major sleep-thieves, so don’t worry if you’re a temporary insomniac, catch up on your sleep when you can when the steroid high is over.
On chemo day
- Arrange for someone to give you a lift if possible, so you don’t have to worry about concentrating on driving if you feel a bit tired or sick after your treatment. Sometimes they give you IV piriton which makes you feel drowsy, or the chemotherapy is alcohol based, which is why driving isn’t recommended for certain chemo drugs.
- If you’re using the cold cap, take some paracetamol 1 hour before to help with the brain freeze sensation and wrap up warm, or take a snuggly blanket with you.
- Have a shower when you get home and put your clothes in the wash, clean your phone and any other items you took into the chemo centre with an antibacterial wipe. This is just to prevent any unnecessary risk whilst your immune system is depleted (I did this even pre-covid, but probably even more important now!)
Throughout chemo
- Make a checklist and set alarms if you are prescribed lots of medication to take afterwards. Chemo brain is real and makes you forget everything!
- Keep an eye on your temperature every day throughout your chemo, extreme low or highs can be a sign something is wrong and quick action is important.
- You might feel ok for the first few days following your treatment, make the most of these good days, but make sure you don’t overdo it!
- Keep note of how you’re feeling and the symptoms you experience, it might come in useful and help you plan or arrange childcare, dog sitting or any other support required for your following cycles.
- Accept you will have bad days and allow yourself to have them, don’t beat yourself up if you have an off day. The steroid come down used to hit me particularly hard and make me very emotional and teary.
- If you feel up for it, try to get outside. I walked the dog almost every day during chemo, even if on some days it was the only thing my energy allowed me to do (and on some days I walked so slowly!). Getting outside and moving my body gave me something active and positive to focus on each day.
- Proactively moisturise your whole body, but especially hands and feet. Your skin might become very dry and even worse now with all the extra hand washing and anti-bacterial gel.
- Paint your nails a dark colour. This helps block UV which can cause the nail to lift away or fall off on certain chemo drugs. Talk to your team about which drugs might cause this (for me it was the docetaxel, it isn't such a risk on FEC). Keep your nails painted dark for 3 months following chemo finishing too.
- If you start to lose your sense of taste, you might find you crave specific things to combat this, fizzy drinks, sour sweets, or ice lollies seem to help.
- If your mouth starts to feel a bit unusual (fuzzy/dry mouth, oral thrush) you might need to switch to Biotene toothpaste, or speak to your team.
- If you are struggling with your appetite, try smoothies or eat little and often, instead of large meals. Just try and have what you fancy, don’t be too restrictive. The key is to not lose any weight, this would cause concern with your oncology team.
- Call the chemo line or your oncology team if you are concerned about any of your symptoms.
- Don’t suffer in silence, if your side effects are severe and unmanageable, talk to your oncology team to find out what they can do to help you cope.
Chemo isn’t the best experience, but you can get through it one day at a time. All the best!