……..this is not a love story
I literally went from physiotherapy after the car accident to chemotherapy, cancelling my last physiotherapy appointment to start chemotherapy. As I was still in a lot of pain with my neck, I regularly took ibuprofen throughout my treatment period. I was on a chemo programme called FEC-T (or “what the FEC” as I liked to call it). I joined an online forum to chat with others going through the same; this helped a lot and I didn’t feel so alone. We became a great team, like friends who had met in a lifeboat and we kept each other going with funny stories and shared tips and products along the way. When you have gone through this together you know you’ll be friends for life. I did pretty well for the first three rounds of chemo. I ate healthy and went for regular short walks in the countryside and avoided people as much as possible. My partner did the shopping whilst I sat and waited in the car, that way I could still feel like I was taking part in normal life and not a prisoner in my own home. I continued to work from home to avoid exposure to germs and viruses. I enjoyed my work as it gave me something to focus on which wasn’t cancer. Hooray for distractions. I also needed to feel I had things to strive for and that my life was important and people were depending on me. They were. My work colleagues were fantastic and made me feel like they were cheering me on all the way.
Chemotherapy can be very isolating so when people are rooting for you it really helps. My Mum and Sister were fantastic too and baked whole grain bread and cakes for me. They didn’t know what to do so this gave them something to do. My Mum wanted to cancel her holiday as she “couldn’t leave me”. I insisted that she keep the holiday in tact as she was making me feel like I was going to die. That’s just it, when people start making too many adjustments like that around you, you get suspicious. My partner was fantastic, ferrying me to appointments and late night hospital admissions. He sat at my bedside for the whole of visiting hours whilst I was in hospital and brought nice healthy food. My kids were incredible and continued to study and get good grades despite their anxieties about me. As long as I could be strong they could be too. I felt bad giving them the burden of cancer and chemo when they were supposed to be carefree and enjoying university life. Instead they were going to be the student who has the “Mum with cancer” story. That felt bad.
The hairloss: This is the one thing you dread the most when you are told you will need chemotherapy as it robs you of your identity. I had one attempt at the cold cap treatment. This gave me a painful brainfreeze which lasted about 10 minutes followed by numbness. I still lost hair despite this so didn’t bother with it again. I got my partner to shave my head to make the hairloss less painful as it can make your scalp feel quite bruised. I called this “braving the shave”. Once it was done I felt better. I didn’t lose all of my hair, only about
75% of it but I eventually lost my eyelashes and eyebrows and started to resemble a caterpillar or a turtle. (Brown eyeliner pencil is good for framing the eyes when eyelashes fall out). The drug which is making you better makes you look like death itself. Do I even count as a proper human being any more, I wondered. I found if I made an effort with my appearance then I felt better about myself and less of a chemo-outcast. My kids didn’t want to see me without the wig as they still wanted me to look like Mum so my efforts into my appearance helped them to cope too. Here are some make-up tipswhich can help to keep you feeling like you and I also attended a “Look good feel better” session at my local hospital. I had my eyebrows micro-bladed about 8 weeks after chemo finished but had I known about micro-blading before chemo started I would have had this done in advance to save me having to draw them on every morning. This was really helpful once I started back to work as I just didn’t have time to draw two level, matching eyebrows in a morning (whilst I was in hospital, my nurse told me they should be sisters not twins!). If you have micro-blading always check out their work beforehand and preferably get a recommendation from someone who is happy with the result.
Chemo no.4 put me in hospital and so did Chemo no.5: Five times, in fact. During this period, I discovered that I have neutrophils in my blood. I’d had them for 48 years, as do we all, but didn’t need to know until now. Mine had dropped too low and I had a high temperature which put me at risk of life-threatening sepsis. Chemo no.7 was delayed by 2 weeks as my neutrophils were taking longer to recover. I was so pleased to get back in the chemo chair after a delay. My last three chemo’s were reduced to protect those little blighters called neutrophils and I made it to the end of chemo. I wasn’t sick once during chemo and didn’t feel sick either. I found half way harder than expected; happy that I was half way through but I also felt further away from who I was and not nearing the end either; more kind of “stuck in the middle”. My neutrophils took some time to bounce back at the end so I didn’t go into shopping malls or use public transport for about 2 months after chemo finished.
That’s all I want to say about chemo really. Side effects are another story and if you want to know more about how I coped with those you can carry on reading below. If you just want the story, well that’s pretty much it.
The following NHS app has been designed to help monitor treatment schedules and side effects: https://www.nhs.uk/apps-library/owise-breast-cancer/
Top tips which worked for me:
- I stayed hydrated, drinking 2 litres of water per day, especially important on the day before chemo, on the day of chemo and the day after. Drinking water plumps up the veins for canulation, reduces the toxic load of chemo and flushes out your bladder and digestive system.
- At chemo sessions I took chewing gum or mints in case of metallic tastes from the chemo and drank cold water. Some people also suck ice lollies to numb the tongue and reduce the effects of the chemo on it.
- I added cranberry juice to my water on day 1-5 to reduce bladder irritation from the treatment.
- I added slices of fresh lemon to water when I started to lose my sense of taste or get a metallic taste.
- I avoided alcohol (and products containing alcohol), fizzy drinks and caffeine.
- I drank herbal teas: lemon & ginger or peppermint for the stomach and chamomile at bedtime. (Ginger biscuits were also good for mild nausea).
- I added spices to food if I struggled to taste but avoided hot chillies as these can make your mouth quite sore. I found mango or passion fruit sorbet a welcome reprieve.
- I ate as healthy as I could (wholegrain, fruit and veg). I didn’t eat empty calorie foods but if I needed to slow down my digestive system I increased my carbohydrate intake. I avoided sugar and I ditched dairy milk and switched to oat milk.
- I regularly ate mushrooms (especially oyster and shiitake), turmeric and black pepper, raspberries, cherries, rosemary and cantaloupe melon during chemo as I’d read they help reduce the toxic effects and may make the tumour more chemo sensitive.
- I stocked up on the full range of digestive tract management products, end-to-end (yes, Gengigel (or Manuka 20+ honey), Gaviscon and Sudocrem are your new best friends but don’t get them mixed up!) – your Consultant may need to prescribe something if any symptoms get worse (l had Omeprozole). Sore digestive tract was my early warning sign that my immune system was starting to drop – during this period I took my temperature morning, noon and night (usually between days 5-10 for me, in the 21 day cycle)
- If you develop oral thrush you will probably need medication as most natural remedies aren’t very effective (except as a preventative) and you will need them quickly to stop any fungal infection from entering the rest of your digestive system as it will make it sore (I had Fluconazole).
- Life Mel honey has also hit the news for having a protective effect on the neutrophils so may be worth looking into. I didn’t know about it during my chemo but a friend who had chemo after me had problems with low neutrophils after her first chemo which resolved for the next 5 cycles after taking Life Mel honey daily to the end of chemo.
- I never suffered in silence. If you don’t tell your medical team, they can’t help you.
- My anti-sickness medication worked well for me and I didn’t feel sick at all (I just felt a bit like I’d stepped off a boat ride on FEC day 1). If your anti-sickness medication isn’t working ask your consultant to give you a different one. Do not tolerate being sick as this will impact your overall well-being and drain you mentally. Some anti-sickness meds are more expensive so you have to be prepared to push for them.
- I took my afternoon steroids no later than 3pm otherwise I couldn’t get to sleep at night.
- I organised all of my medication into daily boxes to avoid confusion when the chemo-brain kicked in, otherwise it became difficult to remember, especially since the medication schedule changes throughout the cycle.
- I bought a soft baby toothbrush and didn’t suffer bleeding gums at all.
- I used Biotene tootpaste, gel and mouthwash for dry mouth.
- I kept my nails very short and wore dark coloured nail varnish to protect the nail beds as the chemo can make them photosensitive (they become discoloured anyway so you’ll probably be pleased to cover them up). I treated them to a regular nail conditioning treatment (I used CND Solar oil).
- I covered up and wore sunglasses outdoors as chemo increases your sensitivity to UV rays (this photosensitivity continues for 3 months after chemo finishes).
- I used viscous eye drops for dry eyes.
- I tried to exercise and get some fresh air daily, even just a short walk.
- I took Clarityn Loratadine antihistamines to help with bone pain and general aches and pains. (Loratadine also has anti-cancer research).
- I took Epsom salt baths 2 or 3 times a week to help with aches and pains (I added a few drops of essential oil too like lemongrass, frankincense, rosemary and here’s some useful information on lavender and oestrogen controversy.
- I used paraben-free moisturisers: general body lotion, cracked heel cream, intense hand cream as chemo can be hard on the skin. I used scalp cleanse and moisturise when my hair had fallen out.
- I avoided people as much as reasonably possible. Germs and viruses: whilst viruses may not be life threatening they may risk delaying your chemo. I used thieves oil on an aromatherapy diffuser at home or on a handkerchief when out to kill air-born germs.
- If I felt tired then I rested and didn’t feel bad about it. Its just a bad day, tomorrow you can try again (week 1 FEC made me feel lower in energy and Docetaxol day 1-8 made me feel very tired, which was common amongst others I chatted to).
looked here for further information:
Disclaimer: I am not a medical professional. I do not claim that anything which worked for me would work the same for you. This blog is no substitute for the advice of your doctor. Always seek medical advice if you have any concerns. Always check with your consultant before taking any supplements. This blog is my personal journey and a journal of how I coped. I do not take any financial incentives from any products mentioned.