I had no idea what chemotherapy would be like, and didn't know what I needed to help me through. Simple things like what to wear to chemo, and how much paracetamol to buy. Some absolute angels sent me their survival tips, and I'm now sharing mine with you. It's a long post, but I hope it helps.
This is only my own personal advice - everybody has a different experience and may suggest other things . There are lots and lots of blogs offering chemo tips - read them all and pick the useful bits from them all.
If you want to know what chemotherapy was like to have and to go through (for me it was Docetaxel and then FEC), read the Chemotherapy section of my blog.
Breast cancer chemotherapy means you WILL lose your hair. If you hair is very important to you, it is worth trying the cold cap. It means that you spend a longer time on the unit, and have an ice-cream headache for a while, but a lot of people kept most of their hair using this.
You will probably lose all the rest of the hair on your body – pubic hairs tend to fall out first, generally around day 10-13, followed by leg hair and underarm hair – free Brazilian and leg wax on the NHS! My eyebrows and eyelashes came out at the very end of my 6th cycle, so you may get away with keeping them. I used the videos and tips on the eyelineher website to learn how to draw my brows on, and what products to use. I also did a feature in Grazia magazine last October with Jo Taylor about beauty products during chemo.
If your head does get cold, buffs are great. I also had several scarves, although wearing a scarf made me look and feel more like a cancer victim than the buffs or going bald did. I went back to the great website eyelineher that showed me how to tie head scarves, thinking of them like a ponytail using a scrunchie. All the major cancer websites (Breast Cancer Care, Macmillan etc) have lots of head wear / wig / hat supplier advice, and I recommend you have a look. There are far too many to list here. A lot of people swear by SuburbanTurban, especially for hats for special occasions. I didn't want to spend a lot of money on hats I would never wear again.
I did get a couple of cheap straw hats from Accessorise, only to find they were far too big once I lost my hair. Amazon came to my rescue with stick-on hat adjusters. I did treat myself to a lovely Paul Smith hat which I knew I would wear again, and it came in 3 different sizes - perfect!
Instead of a wig, I got a fantastic pair of statement glasses. Firstly, none of my old glasses suited me when I lost my hair. And I thought I could have a bit of fun and get some outrageous specs so people would stare at me because of those, rather than my lack of hair. They were my 'mask' and I always felt I could conquer the world when I was wearing them.
You might get chemo brain, and become quite confused at times, and forget the names of words. I used to call the TV remote an orange. For the chemo week you can’t really concentrate on anything, including TV and reading for the first couple of days. Then you wake up a bit. Netflix subscriptions to binge on boxsets are great. Jigsaws are also good as you can dip in and out of them. Remembering to take tablets was a nightmare for me so I got a pill box from the chemist to put them all in to remind me.
The Macmillan appis perfect for putting in all your tablet and appointment reminders, and it's free. Have a notepad and pen to hand to jot down all your symptoms so you can remember to tell your oncologist when you next see them. Consider having a ‘chemo caddy’ you can keep by the sofa with a water bottle, painkillers, thermometer, sweets, lip salve, hand cream etc so you don't have to move to get what you need.
You are likely to get hot flushes, which are often at night, and make you drip with sweat. Ideally we'd all have a fairy to change the bedding every day. I swore by a Chillow – a genius invention that is always ice cold to put your hot sweaty head on when you’re having a flush. I also had one of those battery-operated travel fans.
Buy lots of paracetamol and brufen for the flu-like aches and pains and headaches. I had really severe headaches with the bone marrow injections, and needed to take codeine as well (which I got from my specialist nurse).
You need an accurate thermometer to take your temperature. The cheaper ones are useless - inaccurate and stop working. In the end I spend £30 on this Braun thermometer. It was definitely worth it.
Chemo can make your eyes dry. Mine were fine, but having gentle moisturising eye drops can help, especially when you lose your lashes.
Because chemo damages fast-growing cells, it includes the lining of your nose and mouth, so you can get sore and dry inside your nose. A wee dab of Vaseline just inside the nostrils can fix this.
Chemo altered my sense of smell and strong smells that I used to love were suddenly really offensive. I wanted very mild-smelling toiletries, and perfume and candles were off the menu. If people do get you hand creams etc then ask for non-scented or mildly scented ones.
Oral hygiene is really important. Use a baby's or a child's toothbrush so it’s nice and soft and wont hurt your gums. Biotene toothpaste is great for dry mouths and sore gums, and has a nice taste when everything tastes awful. Use Difflam mouthwash after every meal – you can get on prescription from GP.
They will get very dry and cracked. The one lip balm that I swore by is called Lanolips (think now called Lano) – available in Boots and luxury toiletries bit of Waitrose. Seems pricey at >£10 a tiny tube but it lasts forever and is perfect. A friend bought me some and said she swore by it when she had chemo.
Your taste changes – mine was metallic, and then chalky. It does improve at the third week just before you start chemo again, so wine and chocolate tasted OK in that week. But I could never enjoy a cup of tea, which was the one thing I missed. It’s a bit of trial and error. You want things with flavour but have no idea what you want. Salt was definitely off the cards.
Water tasted disgusting, but you need to drink 2-3 litres a day. I got a sports water bottle so I could sip all the while, and got people to bully me into filling it up at every meal. I initially put lemons and oranges in water to flavor it, then got bored. I then drank gallons of Volvic lemon 'Touch of Fruit' water, and tonic water was lovely – the fizz cleared the chalky taste in my mouth. Lemon barley water and fruit squash were also OK – I had bottles everywhere to take when I went to visit people.
Tea and coffee tasted wrong but lemon and ginger tea bags were good – I got sent loads of them. And beef Bovril was quite a nice drink for me too. Pineapple was also great for the chalky taste during FEC. And I got hooked on soft buttermilk pancakes.
You will be given a list of things you're not allowed to eat. I was simply told no raw fish, shellfish or blue cheese. A friend being treated in a different hospital was also told that she couldn't eat pre-packaged food, no wrapped sandwiches, all salad and raw fruit / vegetables had to be washed (so she couldn't order salads in restaurants), all meat had to be well-done. This is all to prevent you getting a stomach bug that could be potentially serious when chemotherapy destroys your immune system, but it makes eating out incredibly difficult. I was surprised by the wide variation in advice that is given. All I can say is - be sensible and be careful, and use some common sense.
Someone sent me the Royal Marsden Cancer Cookbook which was a lifesaver – lots of great recipes for breakfast, lunch, dinners and snacks. I can't recommend it enough.
Chemo ruins your hands. Your skin gets very dry and cracked, and the skin on my fingertips peeled – so I couldn’t use my finger to unlock my IPhone (middle-class problems). I used lots and lots of intensive hand cream – like Neutrogena, l'Oreal, Garnier etc. I had tubes in every room and in my handbag, and used it constantly.
Chemo also affects your nails. They get soft, brittle and discoloured. Some people swear by using black or dark purple nail varnish, saying that the polish prevents UV light getting to the nails which stops the damage. My nurse told me that if your nails are going to go, they’re going to go. I used purple varnish for the first session then couldn’t be arsed to reapply it once it chipped. I then used Sally Hansen’s Nail Strengthener (clear) to help keep them strong. If you use nail polish remover, use alcohol free, as the alcohol stings.
You either get diarrhoea or constipation. I got very bad constipation. Your oncologist should give you a prescription for laxatives. If you haven’t been for 4-5 days, ring the nurse and they should give you something stronger. Drink lots of water. Some people swear by prunes. Take the laxatives regularly. You will need them.
I got bad indigestion. My oncologist gave me Losec tablets (omeprazole). Don’t suffer in silence.
Some chemo drugs can make you feel very, very sick, especially FEC. I got a standard cocktail of drugs, and then had to ask for something stronger. The usual ones are Ondansetron and Cyclizine. There is also something called Aprepitant (Emend) that they can give you as well if you need it. Again, don’t suffer in silence.
Chemo makes you menopausal so everything dries up and gets sore, and it can sting when you wee. There’s a fab lubricant called YES that you can get on prescription from your GP. They do small applicators that you squeeze inside 2-3x/week (bit like using a tampon), and then a large tube of lubricant. It’s not sticky and it really works.
You can wear what you like for chemo, as long as the nurses can get to your port or PICC line. I wore layers so I could strip off if I had a hot flush. The units have comfy reclining chairs to sit on, and comfort was the order of the day.
At home, I wore loose comfy layers again. Some people buy cheap stuff from TKMaxx or NewLook or supermarkets that they burn afterwards to celebrate the end of chemo. Others treat themselves to lovely soft cashmere clothes so they have a little bit of luxury whilst they look and feel like crap. I wore loose trousers or leggings and baggy T-shirts.
Some friends sent me some warm fleecy blankets to snuggle up under on the sofa, which were fantastic.
Wearing heels became really really painful since my toenails were manky as well. I was shocked how painful it was to wear all my old shoes once I had finished chemo. It took a while to build my tolerance up again.
The best thing you can do is to do a little bit of exercise every day. I walked with a neighbour, slowly, for 30 minutes every day, apart from 1 day in each chemo week when I just felt too weak. I hated getting ready to go out but felt so much better for it, and felt I’d earned the right to veg out on the sofa for the rest of the day.
You need an overnight bag packed and ready in case you get a high temperature and need to go into hospital. You need pyjamas, underwear, toiletries (as hospitals don’t have any, so I had a spare hand cream, lip balm, toothbrush and biotene toothpaste), a spare bottle of squash or flavoured water, your phone charger, notepad and pen, wallet with £20 so you can leave your main wallet at home, and a book maybe. I didn’t and when I was sick with a high temp I couldn’t think what I needed. A nice pillow case is good as hospital sheets are not the softest. Some people also said to take your own pillow. And slippers for your feet and socks with rubber grips on (I think Totes make some) so you don’t slip on the floor when you go to the loo.