I’m not sure if anything can actually prepare you for chemotherapy. So far it’s been an absolute rollercoaster of symptoms from uncontrollable diarrhea to back spasms which make me look like Michael Jackson in Thriller (kid you not) to vomiting to hair loss. The biggest thing has been the tiredness. That feeling like you haven’t slept in days and just want the world to go away so you can curl up. Then there are days where I’ve been feeling pretty spritely and have managed trips out and felt quite normal…those are invariably the days when someone rocks up with a homemade cottage pie and you feel like a total fraud. I even went on a two week camping holiday to France where I slept on a camp bed under canvas…true story. So life on chemo doesn’t have to stop. I really should caveat this with the fact that everyone responds differently and every chemo drug gives different side effects so this is only MY experience.
Before it all starts you’re invited to have an induction session at the hospital so you can get a sense of what’s to come. I managed to drag my brother Andrew with me and he was more than delighted to learn that ‘breast nurses’ actually exist.
I found it very hard when I first walked into the chemo suite and was surrounded by poorly looking bald people with tubes everywhere thinking that this was going to be me very soon. It felt like the time I went into labour and I was sat in triage having my foof assessed and could hear the baying noises of women in full throes of childbirth all around me. I remember just wanting to cross my legs and do a runner. It’s that feeling of no choice – this shite is going down and there’s no turning back. At least in labour there’s a cute itty bitty bundle at the end of it…
After our whistle stop tour of the treatment room Gaynor, my amazing Brazilian breast nurse, took us into a private room to talk through the procedure, the timings, the symptoms and the side effects. Gaynor is blessed with the most infectious heavy Latino accent and reminded me of Gloria from Modern Family (if you haven’t watched it, you must). She told me about ‘dee hair you-er must-er lost…bud idder grower back huh’ and ‘you taker da sickness somer da days’. Everything she threw at me just sounded poetic because of her exotic turn of phrase. Until she got talking about my skin changes ‘sensible sensible sensible your err skin going to be…you must taker no parabans or perfume in er your products because your err skin going da be very sensible’. I knew she meant sensitive of course but felt too judgy to correct her. She then leant forward and stared intently at both Andrew and me and in a hushed tone whispered ‘And er your er vagina gonna be da most er sensible as it’s ever been‘ It was at this point that Andrew got up awkwardly and declared his need for a coffee. ‘Your er husband no likey de sexy talk‘. I explained he was my brother and we sat in silence while I contemplated having a law abiding fanny. I should add that I have zero complaints about the team who look after me – they’re incredible.
I digress. The main learnings (apart from sensible lady gardens) from the induction were the common side effects of breast cancer chemotherapy. I thought it’d be helpful to share my tips on how i’ve managed them so far. I can’t stress enough though that everyone responds differently…
EFFECTS ON THE BLOOD
Chemo has the ability to wipe out the good stuff and the bad stuff in your body…especially the ability to make white blood cells which in turn reduces your immune system. Each time you go for chemo you have a blood test to make sure you’re well enough to have the treatment. My white cell count went down, down, down each time so I was given an injection to give them a boost which worked well. However, another complete godsend for me has been LIFE MEL HONEY
(see https://www.amazon.co.uk/d/Honey/Nu-Vitality-LifeMel-Honey-120g/B003UG86WU ). It’s pretty pricey but I have honestly sworn by it. It’s made from Israeli bee’s which are fed on a specially formulated diet which includes selected herbs such as Siberian Ginseng, Echinacea and Uncaria Tomentosa (whatever that is). I have a teaspoon under the tongue morning and night. The results have been incredible.
REDUCING RISK OF INFECTION
As your immune system is weakened chemo patients are very susceptible to infection which can be pretty dangerous. I’ve (touch wood) managed to keep infection free so far which is some small miracle given the age of my 3 kids. They’ve all been poorly at some point these last few months and thankfully I haven’t picked anything up. My tips on this are:
- Frequent handwashing and anti-bac hand gel
- Washing all fruit/veg
- Drinking 3 litres of water a day
- Eating healthy food (avoiding processed where possible)
- Not reheating food
- Avoiding unwell people
- No sharing cups/straws
HAIR LOSS (more on this in next post)
This is more than likely to happen on breast cancer chemo. However the cold cap can be very effective. I have thinned massively all over and have a bald patch at my crown but apart from that i’ve kept a decent covering so far. My tips are:
- I cut my hair into a bob in preparation – it helped mentally prepare. Plus my hair was long and the theory is the weight of it could’ve encouraged it to fall more.
- Try the cold cap (i’ll do a separate post on this), the first 15 minutes is the worst and take a few paracetamol half an hour before. Reflexology is often offered when using the cap and I would highly recommend…it makes the cold cap slightly more bearable
- Wash your hair really gently once a week with cool water. Use paraben / alcohol free shampoo and conditioner. Boots sell a few different brands which are great. I used Neal’s Yard Lavender shampoo and conditioner.
- Don’t blowdry or use straighteners. You have to suck this up i’m afraid and accept that your font won’t look as good
- No hair clips / hair bands or anything which applies pressure on your hair follicles. Avoid brushing too. I used a wide toothed comb from Boots
- Hair tends to fall around Day 15 after the first round of chemo. Leading up to this point your scalp can feel sunburnt and itchy. It’s so hard not to touch and fiddle with it but really try not to. It comes out in chucks like this…
7. I wore a headscarf most of the time (and still do) to protect what I have, to cover my bald bits and to stop me itching. Below is the start of my bald patch…
8.Wigs are of course a fab option – I can talk through this in another post
EYEBROWS / EYELASHES
I didn’t lose my eyebrows on EC chemo but they’ve definitely thinned massively on the weekly Taxel. My eyelashes are also much more sparse but there’s still a covering. Most women i’ve spoken to have lost there’s entirely at the end of Taxel treatment so i’m a few weeks off of that delight. I got my eyebrows tattooed by Tracy Giles (www.traciegiles.co.uk) in Central London and she was phenomenal. I had it done a few weeks before my chemo started and I honestly think it was the best thing I did. It hurt but no pain no gain! They looked quite dark to begin with but it soon wore off
SICKNESS, NAUSEA AND VOMITING
I really struggle with this unfortunately. I have only actually vomited a couple of times but the nausea has been pretty intense. My tips for this are:
- Eat little and often
- At its worst, just go with the foods that your body is telling you to have – I was sinking pizza / Nandos / bagels like the cookie monster
- Keep hydrated
- Ginger tea / Ginger chewing gum (https://www.amazon.co.uk/Ginger-People-Original-Chewy-Candy/dp/B000LKX4FW)
- Travel sickness bands (Boots sell them)
- Prep for it in advance…on your good days, remember the foods/drinks that hit the spot and have them ready. I found the same things kept working.
- Oh and take ALL the medication you’re given for it! I was prescribed Emend and Domperidone.
DIARRHEA / CONSTIPATION
Your bowels definitely have fun with you and i’m yet to speak to another cancer patient who hasn’t been affected. Each day is a bit of a Russian roulette but the medication can be so effective so do tell your breast nurse if you’re suffering.
- I could only really rely on the medicine I was given for this
- Drinking 3 litres of water a day
- I took Dioralyte after each bout
- I was prescribed Loperamide (Imodium) which worked a treat
MOUTH AND DENTAL PROBLEMS
I suffered pretty badly with bleeding gums and excruciating mouth ulcers.
- Corsodyl daily mouthwash is a good over-the-counter option
- Difflam mouthwash is great but only on prescription. Your oncologist should prescribe
- Gelclair is an amazing oral gel which relieves pain. It coats any lesions instantly so I use it before I eat. I got mine on prescription.
- Use a very soft toothbrush
- Use natural toothpaste – I’m using Arm & Hammer Simply Natural
As well as becoming more sensitive your skin gets very dry so I’m constantly moisturising myself. I’ve been using Aveeno Skin Relief Body Moisturising Lotion 300ml (Boots £5) because it’s more affordable than some of the others available. The Green People (www.greenpeople.co.uk) have a wide range of paraben/perfume free products which are more pricey but really good. It’s also worth looking at baby ranges because they’re often chemical free and value for money. In the shower i’ve been using Neal’s Yard Lavender Shower Gel which is, again, nasty-free.
SO FAR my nails have held out but apparently they’re likely to go to pot in a few weeks time. I’ll keep you posted! Here are my tips:
- OPI Nail and Cuticle oil morning and night
- Acetone Free Nail Polish Remover (Boots own brand)
- Constantly wearing a dark nail polish colour to protect nails from UV light
4. This is a picture of my nails today in between painting. You can see the white ridges running across the nail which you get on chemo.
Feeling ill for such a long period of time is enough to get anyone down but the chemo drugs also seem to play havoc with my mood. Everyone is different but i’m the sort of person who gets frustrated if I feel i haven’t done anything with my day. I like to go to bed at night feeling some sense of achievement so I’ve had to lower my expectations of what I can accomplish in a day. For example. i’ve just made a curry for dinner tonight and feel pretty good about it. Plus writing my blog has definitely been driving me through the darker times. I’ve spoken to so many people going through chemo and many have taken up reading, knitting, box sets…anything to keep them occupied. Something that I can’t stress enough is the importance of exercise and fresh air. Even if you can only manage a 15 minute walk, I have found it makes a dramatic difference to my energy levels and certainly to my mood. Try it!
Hiya I lost ALL my hair with chemo and I can honestly say losing my eyelashes was the worst. I can highly recommend Jamaican Black Castor Oil for speeding up regrowth – I was really sceptical but amazingly it works. So when you are through treatment get yourself a bottle and slap it on your bald bits… good luck with it all and keep going with all that positive energy, you will get there x
Thanks for the tip Debbie! I’ll order some now xx
Thank you for sharing your journey . I’ve also just started chemo and my god I don’t think anything can prepare you for what’s in store . The nausea is awful ,……well All the side effects are awful,!!!! It’s nice to know that you’re not alone . Can’t wait to hear your next instalment.
Thanks Lisa. Yes, it’s horrific isn’t it! I’ve had to miss my last chemo thanks to the awful side effects 🙄. Good luck with your treatment x
This is so relatable! I have cycle 3 next week and still have a lot of hair, thanks to the cold cap, but my crown is very thin. Thanks for sharing!
Thanks Ali. Great news that the cold cap is working for you too! X
Oh how I love Maria! She reminds me of Melissa McCarthy. Great tips, I’ve just ordered the honey to give it a whirl! 😊
Oh let me know how you get on with the honey. It’s been amazing for me! Xx
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I’m about to start T I’m really anxious as had every side affect going on fec will try a few of your remedies xx
Good luck Jayne. Hope it goes ok x
Hi Helen thank you for sharing your chemo tips…this is so great for anybody starting out on this journey….I wish I’d tried the cold cap now!
I’m starting my weekly chemo today for twelve weeks yuck 😬 can I ask which after meds have worked well for you? My oncologist has assured me I don’t need many as he’s not expecting me to feel sick and only tired for one day….somehow I don’t quite believe this after the four big ones that I’ve had over the last twelve weeks! I’m also only going to be on steroids for one day, which is today…this is a relief as I was worried about the awful come down next week and then having to go for chemo too! But I’m also a bit nervous about only having steroids for one day. Is this the same for you with the steroids? Holly x
Hi Holly, thanks for your message. It sounds like our treatment is exactly the same? I had four EC (every 3 weeks) and now I’m on 12 weekly Paclitaxel- is that the same? I’ve got 3 more of the weeklies to go and then I’m done.
So, I was really worried like you are about the reaction I was going to get. I have to say, it’s a lot easier on the Paclitaxel. Although it’s accumulative so gets harder towards the end in terms of tiredness. I didn’t have any sickness but did suffer with awful Diarrhea so take an Imodium to help with that. Apart from that, I don’t have any other meds. My white cells have been up and down so occasionally I’ve had to have the booster jab at home to boost my neutrophils- have you had that?
Fingers crossed the weeklies will be easier for you.
What was your initial diagnosis? Have you had surgery? Xx
I’m sorry I didn’t spot your reply until now but saw on instagram that you had posted a new blog! I’m really sorry to hear that you haven’t been able to stick to your schedule, I know you must feel pretty gutted about that and hope you haven’t been feeling too rough and bloody knackered ☹️ I had a mastectomy and 4 lymph nodes removed beginning of July…I was diagnosed with grade two invasive ductal cancer as it was in three lymph nodes. I managed to squeeze in a two week holiday to France before starting chemo at the beginning of September, I’m now four rounds of EC down (which were hideous) and have my 2nd weekly paclitaxel tomorrow, I finish these just before half term and am really hoping I stick to then as we’re hoping to get to Salcombe for a week to celebrate the end but I’m now thinking I might need to rethink that plan 🙄I then have radiotherapy for 4-6 weeks and hormone blockers coming my way…..I met with my oncologist last week and we also discussed having my ovaries removed but I couldn’t quite get my head round that…so we have parked that thought for now!
So far the paclitaxol has been a million times easier than the EC, just achey joints…hot flushes at night but minimal meds…another one down tomorrow. The very best of luck with your last three you are so close to finishing now 👊💪🍾🙌🎄 xx
Meant to say I haven’t had to have the booster jab yet and have imodium at the ready but so far so good on that front! xx
Just seen you Nitty gritty on Lorraine and your looking great. I was diagnosed stage 3 aggressive Breast cancer in Dec 2017 so I’m a few months ahead of you. I’ve had chemo first then left mastectomy and reconstruction at the same time, then radiotherapy and just finished Herceptin cycles. Still on Tamoxifen for 5 years, but hoping that finishing the chemo will improve my aching body. The NHS has been brilliant. And yes I’ve had another scare but all was fine, I know I’ve just got to get to know my new bumps and keep checking. I’m back to plastic surgeon picking out nipple styles .. a great 50th birthday present. Time to get back in control of life after a complete roller coaster ride of 18months!! Well done for all you’ve done to get people checking xx
Thank you for your message. It’s such a crazy rollercoaster isn’t it! I hope that the Tamoxifen is going well for you…not to mention the nipple selecting! Who knew that would ever be a thing in your life. Thanks for your message of support – it really means a lot xx
It is a real roller coaster but you are doing such a great job on building up awareness…….it certainly will prevent some people from stepping onto this ride too… the posters that are going up everywhere are just fab xx