I’m putting this list together for anyone out there preparing for chemotherapy. I hope you find it useful. As always, it comes with my caveat that you should always do what’s right for you. You might not like my recommendations and might have your own strategies sorted out already.
Please keep in mind that I’m having chemotherapy prior to surgery. I don’t have work or childcare commitments. Preparing for treatment was a welcome distraction for me as I was walking around with an untreated cancer, six weeks after diagnosis. Everyone’s journey is different. Do what’s best for you.
Feel free to use this list as a menu and to pick and choose those things that you think you’ll find useful. Always put your oncologist’s advice, and the advice of other medical staff, ahead of anything else.
It’s helpful first to understand how chemotherapy works. You’re going to be given drugs that attack fast growing cells. This is because cancer grows quickly and the drugs will, hopefully, melt it away or at least retard its growth. To do this, you also need to put up with an attack on all of the healthy fast growing cells in your body. This is why your hair falls out and you can be prone to mouth ulcers. Your skin can look thin and you might be shocked at how this ages your appearance. Your gut lining will be delicate. All of these parts of your body rely upon fast growing cells.
One of your major issues will be the impact the drugs have on your immune system. Red and white blood cells are fast growing cells and they’re going to take a hit. If you remember the character, Monk, from the TV series and how he was completely paranoid about contamination you’ve got your role model for chemotherapy. Don’t worry about looking obsessive compulsive as you wipe down trolley handles or use hand towels to open toilet doors. Your health is worth it.
Some nausea is also an issue for some people but this aspect of chemotherapy is now much better managed than it was in the past. Don’t expect it. I haven’t been sick at all. I’ll include some tips for handling nausea in this list.
Remember, all of these things are temporary.
You are fighting for your life.
Your aim should be to have as few side effects as possible. Read all of the information they give you and, most importantly, follow the instructions they give you. Your oncologist will probably give you the information sheets available from eviQ, and if not, you can find them here:
Apart from their advice about alcohol (see my previous blog, The Elephant in the Room) these are a great source of information on possible side effects and how to manage them. Please keep in mind that every medication you buy these days comes with a long list of side effects and you’re not obliged to experience them! They need to include everything, even the rare, frightening side effects so that you know what to do if you’re unlucky enough to experience them. Knowledge is power. Don’t let it spook you.
Things to buy
- Hand gel – keep a little one in your purse and use it frequently. Remember it’s not as good as washing your hands but it is a good stop gap.
- Anti-bacterial wipes – also for your purse. Great for shopping trolleys and other potential sources of contamination.
- Anti – bacterial liquid soap – if, like me, you’re keen to avoid harsh chemicals there are some great organic ones around. Buy several. Keep one at every sink and ask anyone visiting to leave their shoes at the door and wash their hands. Friends wont mind.
- Anti-bacterial spray (like Glen 20) – make sure you choose a fragrance that you enjoy. Use it liberally, especially after visitors. Some people prefer eucalyptus oil spray or lavender oil spray.
- Tea Tree Oil – Don’t get the pure stuff. It’s expensive and very strong. The one you get from the supermarket is fine. It’s great for diluting and washing down surfaces or use it on a cotton bud for cuts and scratches. You might prefer something like Dettol for cuts and disinfectant for your floors and surfaces but I like the low toxicity of tea tree oil.
- A good quality thermometer – In ear thermometers are expensive but they’re the best. See if you can borrow one from a friend if you can’t afford one. They come with disposable caps for the tip. I don’t replace these every time because I’m the only one using it. I just wipe the tip off with an anti-bacterial wipe. You need to check your temperature at the same time every day. I do mine last thing at night. Make sure you haven’t just had a shower or that you haven’t just taken off a hat or scarf. Both will elevate your temperature. If your temperature goes above 38 degrees you MUST get to the emergency ward of your nearest hospital immediately.
- Extras for family members – Unfortunately your family are possibly your greatest infection risk, particularly if they’re using public transport or regularly in a crowd of people. Let them read the information about what happens if you get an infection. Ask them to leave shoes at the door and wash their hands as soon as they get home. Isolate yourself from anyone with a sniffle if you can. Don’t let anyone with a cold prepare anything you eat.
Things to avoid
- Large groups of people, including busy shopping centres, public transport and, sadly for me, theatres. Try to shop on quiet days if you can. If there’s a movie you want to see then the early morning session is often mostly empty. Sit in the back row and don’t be afraid to use some wipes or spray on the seat. Or get a DVD instead. Some people just stay home and that’s certainly an option but I would find that difficult. If you need to work through chemotherapy for financial reasons then do everything you can to avoid infection. People will understand.
- Anyone with symptoms of a cold or flu. Why do people say “I’m not contagious” when they’re still symptomatic? Don’t believe them. If they have symptoms then they’re contagious.
- Kissing and shaking hands. For friends, a big hug is better. Cancer hates hugs.
Ulcers are described by some people as the worst side effect of chemo. If you get them badly it’s difficult to eat and the pain can be excruciating. You don’t need to get mouth ulcers. Here’s how to avoid them. Firstly, make good use of the ice cubes they give you. Keeping your mouth cool helps to limit the impact of the drugs on your mouth lining. Take some with you in a cup when you leave and eat them on the way home.
Things to buy
- Carb soda – McKenzies distribute one in a plastic container and I’d recommend that. You can keep it in the bathroom next to your toothbrush and it won’t get soggy. You need to put a teaspoon of this into a glass of water and rinse your mouth out after you eat. You also need to use it after you clean your teeth in the morning and at night. It neutralises the acid in your mouth and helps to prevent ulcers.
- Biotene mouth wash – My doctor recommended this as an alternative to bicarb and I’ve been using both. The mouth wash is great if you think the bicarb will aggravate your nausea. It also tastes a lot better. It doesn’t have alcohol in it so it’s gentle.
- Soft tooth brushes – the recommendation is to use a child’s brush. I’ve had good results with an Oral B brush that has rubber bristles along the outside of the regular bristles and a tongue scraper on the back. The rubber seems to protect my gums.
- Gentle tooth paste – if you usually use something with a strong minty hit then swap it for something gentler. I really like Grants Natural Toothpaste. You can get it at the supermarket (probably on the bottom shelf) and it’s very gentle and effective.
- Biotene mouth spray – not essential but I find this handy when I eat out and can’t use my bicarb.
- Organic coconut oil – I’ve had great success with something called ‘oil drawing’ which comes from Indian Ayuvedic medicine. Put about a dessert spoon full of coconut oil in your mouth. Don’t worry if it’s solid because it will melt. Pull it backwards and forwards through your teeth and swish it around your mouth. Keep doing this for about five minutes. Spit it out. Coconut oil is naturally anti-bacterial and helps to soothe and protect your gums. I use this about once a week or whenever I notice that my gums are starting to feel a little ‘felted’ (raw) under my tongue.
- Nilstat drops – as well as washing out your mouth you need to check it every day for signs of thrush. Hopefully you wont need these drops but if you can afford to have them on hand it will save you a trip out to get them.
- Kenalog mouth ulcer cream – You’ll need to ask the chemist. It’s not kept on the shelf. Just the best ulcer cream. Use it at the first sign of any soreness. It goes on like a sticky paste so it’s best just before bed.
- A good quality metal drink bottle – Water is your best friend when it comes to chemotherapy. Staying well hydrated will help those lovely cancer killing drugs to do their work. Water will also help to keep your mouth healthy by diluting any mouth acid. Carry water. Drink often.
Things to avoid
- Alcohol based mouth washes like Listerine – these are too harsh for you.
- Old, worn toothbrushes and any toothbrush that doesn’t have ‘soft’ on the label. Cuts to your gums, even tiny ones, can cause infections and ulcers.
- Sugar and sweet food – You don’t need to give up sweet treats but be aware that sugar causes mouth acid and mouth acid causes ulcers. Be particularly vigilant about your mouth care if you’ve had something sweet and avoid between meal snacks, especially sweet ones.
- Skipping your mouth care because your can’t be bothered, you’re too busy or you just forgot. Get straight back into it as soon as you can. Cancer hates good mouth care.
Your skin is a permeable membrane. That means it’s really good at absorbing anything you put on it. This is the reason that nicotine patches work so well for people giving up smoking. For this reason, I’m very careful about what I put on my skin. There are a lot of ingredients in commercially available cosmetic products that are known carcinogens. You can spend some very scary hours googling this information if you want to check it out. On the basis that everything I can do to reduce the amount of toxins in my body will help me to kill cancer, I’ve opted for getting organic, non-toxic products where I can. In some cases this isn’t possible or practical and for some people it’s just not affordable. If you can’t replace what you have then try to use less of it.
The important thing to remember about your skin during chemo is that it’s not going to be replacing cells as quickly as it usually does. Expect your skin to look thinner and older and remember this is temporary. You’ll need to avoid the sun because your skin can’t repair itself very well and you could end up with dark pigmentation on your face and hands. You’ll need to avoid using anything harsh on your skin to avoid damaging it. Treat it like baby skin. Pat, don’t rub.
Things to buy
- Some kind of liquid soap-free wash for the shower. I’ve bought a beautiful body wash from the local health food shop from the Uniquely Natural brand. It’s very gentle, contains no nasties and smells divine. Here’s their web site: http://uniquelynatural.com.au You might prefer commercial brands like Aveno.
- Some kind of oil to put on your skin after the shower. It’s best to put this on while you’re still wet and then towel it off. The water helps the oil to emulsify and softens and protects your skin. A lot of people recommend Bio Oil but it’s based on mineral oil (petroleum based) and it’s expensive. I’ve been using organic coconut oil and organic avocado oil, both from the food aisle in the supermarket. I like the feel and the smell of them and my skin has never been softer. Also, they’re completely non-toxic. You might prefer sorbelene or something else creamy. If so, get bulk sorbelene from the chemist. It’s cheaper and most of the commercial brands have added nasties for fragrance and, ironically, customer appeal.
- Rose hip oil for your face. Get a good organic one if you can. It’s often cheaper online so compare brands and prices if you have the time. This is just the best thing for your skin. You can also use other kinds of oil but monitor closely to make sure you’re not going to break out. Some people love coconut oil on their face and others say it clogs their pores. I find avocado oil is a good substitute.
- Tea tree oil for any blemishes, cuts or infection. Use a cotton bud for any spots on your face or any tiny scratches you get on your skin. It’s a great natural antiseptic. You might prefer an antiseptic cream.
- Waterproof bandaids for any cuts or scratches you do get.
- Vitamin D capsules – because you can’t go in the sun you’ll need to take these to avoid a deficiency. Make sure they have 1000 iu per capsule as this is the recommended dose.
- You may want to invest in some natural makeup. Mineral powder is gentle and good for hiding blemishes and pigmentation but check the ingredients as some of these include talc and bismuth, both nasty substances. I don’t wear makeup other than for special occasions so I don’t worry too much about my eye shadow or rouge. I don’t wear lipstick unless I’m sure there’s no lead in it. Who wants poisonous lips?
- When your hair starts for fall around week three then you’ll find your head gets incredibly irritated. It’s like an itchy burn. My daughter checked online forums and found a lot of people recommending a Body Shop product called Vitamin E Face Mist. She bought me some as a gift. Some of the things in the ingredient list are a bit of a worry but it really did make a difference. Coconut oil is also great for your scalp and cures dandruff.
- Sun block – I have mixed feelings about sun block because the ingredients in a lot of the commercial products are so toxic and the natural alternatives are so expensive (and I’m not sure how well they work). I prefer to cover up with hats and clothing and to avoid the sun. If I must use a sun block I use something fragrance free designed for babies or children because these have less ingredients in them.
Things to avoid
- Anti-wrinkle face creams. Most of these work by encouraging your skin to shed the top layer and promote cell growth lower down in your skin. Your body can’t do this while you’re having chemo. You need to protect and preserve the skin cells you have, not shed them. Be particularly careful of anything containing salicylic acid. Stick with the rose hip oil.
- Acne creams. Same as above and a lot of the ingredients are similar.
- Any exfoliating product or device. You don’t want to be rubbing off your skin cells.
- Having a facial. I made this mistake. I thought it would be relaxing. Even though I explained to the beautician that I was having chemotherapy the whole treatment was just too much for my skin and she managed to nick the base of my nostril with her fingernail.
- Soap. It’s too harsh for you right now.
- Most shampoos and hair conditioners. Use your body wash instead or invest in some natural products that are gentle and don’t contain harsh toxins. I haven’t needed shampoo because I shaved my head but I’ve found that a natural conditioner has been helpful while my hair has been falling out; I use it to massage my head under the shower.
You’ll probably find that your eyes feel really dry, particularly the first few days after treatment. I prefer saline to any of the medicated eye drops. It’s just salt and water, so it’s very gentle and doesn’t contain any toxins. See if you can buy it in small plastic ampules instead of getting a big bottle of it. They come in boxes and should be in the same section in the chemist as all the stuff for contact lenses. They cost a bit more but are much better for avoiding infection. Large bottles can get contaminated with fingers and skin contact.
Bad news. Your nails also rely upon fast growing cells. If you’ve got long nails, gel extensions or acrylic nails it’s best to have them removed. As a cop I was once told by a forensic examiner that nail beds were the dirtiest part of the human body and an ideal breeding ground for bacteria. He couldn’t understand where practice of long, painted nails had come from given that you couldn’t see if your nails were clean and you were carrying around ten little petri dishes at the ends of your fingers. I’ve had short nails ever since.
Things to buy
- Something to keep your nails and cuticles moisturised. I like Organic Coconut Oil but it stays greasy for a long time so it’s best just before bed. Get some really lovely hand cream and keep it next to you when you watch television. If you’re really lucky you might be able to talk someone into giving you a hand massage.
Things to avoid
- Nail polish and nail polish remover – both highly toxic and your body needs all the help it can get right now.
- Any kind of artificial nail other than the temporary, stick on kind. If you really feel naked without your nails then these are your safest bet.
I think the best thing you can do about nausea is to pay attention to your expectations. If you believe you’re going to be nauseous you almost certainly will. I don’t mean to suggest that everyone can control all nausea with their beliefs, and I know some people are just ‘vomity’, but your attitude can certainly help to diminish this extremely unpleasant side effect. I’ve certainly felt ‘squeamish’ but think of this differently to ‘nauseated’. The first is a tender gut and the second is the feeling that I’m going to vomit. Language can be a powerful thing.
The two pieces of practical advice I’ve had have been to drink plenty of water during and after chemotherapy and to make sure I take my anti-nausea medication, even if I don’t think I need it. Eating ice cubes during treatment also helps with nausea.
I’ve also found that having a shot of kefir drinking yoghurt first thing in the morning helps. The brand I get is ‘Babushka’ and the flavour is honey. Being a yoghurt it smells like lactic acid so you would think it would make me feel nauseated, but it doesn’t. It has the added advantage of keeping up the probiotics in my gut. I think this helps too.
For the first week after chemo I found that eating smaller meals helped, and I didn’t feel particularly hungry anyway. My second and third weeks my appetite was back to normal. I haven’t needed any of my optional nausea medication. I found that keeping to fairly plain food helped while still paying attention to good nutrition. A small portion of meat or fish with some vegetables is a good, healing meal. Soups are wonderful and one of my favourite comfort foods. Porridge has been my breakfast of choice. I’ll write more about diet in a later blog. I think of all my food as ‘healing’ rather than ‘bland’ or ‘boring’.
As an ex-police officer I’ve had plenty of practice fighting nausea. You’re placed into a lot of situations where you would normally have this reaction but you obviously can’t. I controlled the impulse by taking three or four deep breaths. Suck the breath all the way down into your pelvis and imagine you are pushing the nausea down with it. Hold the breath there for a couple of seconds and then breathe out slowly and imagine that your are releasing the urge to be sick with the breath. After three or four breaths, imagine a pleasant smell. I find lavender, lemon, peppermint and roses are all good. If you can, have a tissue or a hanky handy with some essential oil. A lot of cops use Vicks either on a tissue or in one of those inhaler sticks.
I’ve found it also helps to give my tummy a massage. Big circles with your hand moving anti-clockwise will soothe any tension and help things along.
Chemo may make you very windy. I’ve had that problem. I remind myself not to confuse a burp with the urge to vomit. It’s just a burp.
I haven’t had any, apart from being very windy. The fact sheets recommend taking medication if you do have problems. I’ve avoided them using these:
- Kefir drinking yoghurt – full of probiotics for gut health and also helpful for nausea.
- Soluble Fibre – I put a spoonful in my coffee every morning and I can’t taste it. Try Benefibre or Metamucil’s Fibresure. They’re both flavourless and dissolve in liquid.
- Water – Probably the most important thing you can do for your body is to stay well hydrated.
- Whole foods – Eat foods that are as close to their original condition as possible. I prefer organic when I can get it. No pesticide or herbicide residues. Pump up the vegetable content of your meals and eat a couple of pieces of fruit every day. Bananas and apples are particularly good.
- Fresh fruit and vegetable juice – my Mum gave me a wonderful juicer and I make up a large bottle of mixed fruit and vegetable juice and keep it in the fridge. I have a shot of this every day. If you can’t make your own juice there’s some reasonable products out there but aim for organic, Australian made and fresh rather than reconstituted juice as a preference. Be careful with highly acidic juices like orange and pineapple or anything too sweet because these will elevate your mouth acid and may give you ulcers. Places like ‘Boost Juice’ are also good, especially if you ask for juice without ice so you maximise the vegetable content.
- Avoid processed foods and sugar
- Don’t drink alcohol or soft drinks, even ‘sugar free’ soft drinks – Both of these are notorious for causing reflux and indigestion.
- Exercise – Yoga is wonderful for keeping things moving and so is walking. Gentle exercise every day for 30 to 60 minutes will also help you combat fatigue.
Clothing and Bedding
I bought two waterproof mattress covers and waterproof pillow covers for my bed. Target and Spotlight both have good ones that you can put over an electric blanket (if you use one), and that can be machine washed. They have a fine terry towelling surface so you don’t feel like you’re sleeping on plastic. I highly recommend them. I had very heavy night sweats for the first few days after my treatment and it was good to know I wasn’t soaking my bedding. Pretty much everything that comes out of your body in the first week after chemo is highly toxic and you don’t want that soaking into your bed.
I also found it very helpful to sleep with a hand towel on my pillow, and to keep another beside the bed. I can pull it up around my head if I’m feeling cold and if I get the sweats it’s easy to flip my pillow, change the towel and go back to sleep.
When it comes to clothing I’m a comfort over fashion devotee so I already had plenty of interlock cotton clothing in my wardrobe. I love it for both the comfort and the ease of care. No ironing! You might want to have a look through your wardrobe and think about what you’re going to need during treatment. Here are some suggestions but obviously what you wear is a very personal choice and you need to feel happy as well as comfortable.
- Alternatives to bras – depending upon the size and site of your cancer you might find it difficult to wear your usual bras. I’ve found that my yoga tops with built in shelf bras have been the most comfortable option. I’ve tried seamless crop tops and exercise bras but because of the location of my cancer the front seam irritates me. Other people love these so it’s worth trying some on. Around the house I just wear a firm interlock cotton singlet. I bought some that were one size down and they’re very comfortable. I also sleep in them.
- Hoodies – soft, comfortable and easy to launder. The hood is great when your head gets cold. Buy them a couple of sizes up for a comfy fit.
- Really comfortable track pants – of course!
- Washable scarves – my favourite fashion accessory. They keep your neck warm which is important when you’re used to having hair. They disguise and distract from whatever is going on with your breasts and they provide you with readily available hand protection for everything from opening toilet doors to using the ATM. I haven’t found them very comfortable for my head because I wear glasses and a scarf pushes my glasses into the back of my ears.
- Hats, turbans, headwear – you can really have some fun with this one. My favourites have been from shops like Tree of Life and what my daughter calls ‘Hippy Shops’. They’re a great source of interesting head wear. I also found a lovely decorated boater in a second hand shop and some berets and beanies for some different looks. Around the house I’ve made a couple of very comfortable cancer caps by cutting the legs off a size 18 pair of leggins. They cost me $10 at Kmart. Cut them off at the crutch, fold over the cut edge and pull it on, and then just tuck the ankle into the back. Cheap, comfy and if you fiddle around a bit with the folds they actually look pretty good. I haven’t bothered with a wig. I’m okay with my bald head and I think I’d find a wig itchy and uncomfortable, particularly heading into summer. If you want one then ask about a local wig library. One lovely friend that wears wigs for fun sent me all of hers to try on. I looked like a middle aged woman in a wig!
- Fleece dressing gown with a hood – If you don’t already have one these are great for those times when you feel cold in the middle of the night. Put your gown on, pull the hood up and go back to sleep. Micro fibre is very good at wicking moisture away from your body so this is a good strategy if you wake up freezing from a night sweat. The hood keeps your head warm and also keeps the light out of your eyes if you pull it down over your forehead; much more comfortable than an eye mask.
A few other things you may find useful
- Disposable latex gloves
- Tissues – you’ll go through lots of these
- Paper towel – great for cleaning up anything you need to dispose of without having to worry about washing out a cleaning rag.
- Incontinence pads or panties (or sanitary pads) – you may find it a bit harder to hold your bladder when you’re having chemo. I wear them to and from treatment and anywhere that I might not be able to get to a loo quickly. They are also handy during chemo when it sometimes takes nursing staff a little longer than you’d like to help you get to the toilet.
- Disposable face masks – I wish we had the same tradition here that you see in some Asian countries where people with infectious diseases wear these to protect other people. We don’t. If you think you’re going to have to travel on public transport or get stuck in a crowd somewhere I’d be considering these.
- Medium sized bucket with a lid – or two or three. Keep one in the car and one beside the bed in case you need to vomit. Throw them out when you finish chemo and never use them for anything else.
I hope you find this list useful and add your comments about anything else you think should be on it. I thought of of everything I bought in preparation for chemotherapy as my ammunition. I was getting ready for battle. I gave the house a really good clean and ‘detox’. That included cleaning out the fridge and the pantry of unhealthy food, sorting my wardrobe and generally moving unnecessary things out of my home and my life. For me, this was both therapeutic and a great way to eat into the waiting time between seeing my oncologist and finally starting treatment.
I suppose it’s fair to say I had already started treatment. I’d done some serious work on my belief systems, improved my diet, stepped up my yoga and meditation a spent a lot of time learning all about my disease. I took some dietary supplements during the time before I saw my oncologist but her advice was to stop taking everything except vitamin D and fish oil. She explained that she was often frustrated when patients decided to self medicate with supplements that interacted with their chemotherapy.
I’m very good at following instructions. Particularly when it comes to saving my life.
Okay, that was all a bit heavy. I’m heading over to YouTube now to watch ‘Dancing Merengue Dog’. It always makes me laugh. Check it out: