Tips for surviving the side effects of FEC

I've done the first round of FEC and it hasn't been as bad as I'd feared. 

My friend who has been through this more than once says that each cycle is likely to follow the same pattern so it's great that I've made such a good start...though it is also likely to get progressively harder each month.

It's important to keep a diary so you can look back and see what to expect each time.  I had expected to find the first week terrible and then to gradually get better until I would feel relatively well in the third week.  In fact, I found that it came more in a series of waves of discomfort. 

On the first day, once I had got myself going and taken the anti-nausea medicine, I actually felt fine.  Gradually, over the next few days, I suffered more with severe indigestion which also kept me awake in the small hours of the morning.  Then, as I recovered from that, I started to develop mouth ulcers and sore lips.  As that got better and I reached the third week, I congratulated myself on having made it through.  Only to be completely broadsided by a couple of days of the most horrible constipation I have ever experienced.  After that....well, I'll just tell you that I already had haemorrhoids and leave the rest to your imagination.   

Despite these discomforts, however, I was able to carry on as normal without too much difficulty.  Even if I did have to sit down very gingerly...

So, it's still early days for me but here are my first-round tips for surviving FEC.

1. Go super healthy
I'm not a health freak.  Before chemo I loved my Belgian beer or a glass or two of wine in the sunshine, I started every single day with a coffee before I could function, exercise was a pretty random and sporadic affair and I'm not one to say no to a nice gooey cake.  But I figured that the best way to take on chemo was to give my body every single chance to be fit to fight.

So I gave up caffeine and alcohol (a few days before I started chemo so I could shudder my way through withdrawal in advance), drank enormous amounts of water, committed to a brisk walk in the park every single day and tried to make my diet as healthy and full of roughage, fresh fruit and veg as I possibly could.  I try to say no to nice gooey cakes at least some of the time but, hey, even battle ready soldiers need some perks...

Is this really necessary?  It is definitely good advice to drink lots of water, eat healthily and get regular, gentle exercise.  Do you need to give up caffeine and alcohol?  Strictly speaking, no.  My friend who is a doctor actually tried to encourage me to have a glass of wine, assuring me that it would have no effect on the treatment.  But it just seems daft to me to put things into your system that might strain it or dehydrate you when you really don't need to, so I have stuck to my resolution.  I can live without booze for a while and find that I no longer crave my daily coffee;  herbal tea has opened a whole new world of hot drinks. 

Meanwhile, at the other end of the scale, you will find people who insist that this isn't enough: you must also give up sugar because cancer feeds on sugar.  They ask, why would you want to feed your cancer?  My answer is, because chocolate is good!  And it's  not exactly true that sugar feeds cancer.  Cancer cells divide more rapidly than other cells so they need more energy but they'll take it from any source, not just sugar.  Of course, for all sorts of health reasons it is sensible to manage your weight and restrict sugar consumption but, to me, a little chocolate or cake can go a long way to making FEC a little more bearable.

2. Lots of small snacks
I was lucky that the drugs they gave me were enough to control the nausea, but I still suffered terrible indigestion.   For both problems, the advice is to eat frequent, small, healthy snacks instead of meals for the first week.  Make sure your fridge is well stocked in advance. Take healthy snacks everywhere you go so you can eat when you need to. Try things like: hummus on toast, avocados, muesli with extra seeds and nuts with bio yogurt, fresh fruit, dried fruit, banana chips, nuts...  Gentle walking can help get the intestines moving when they are grumbling and, as above, drink lots of water.

3. Keep your mouth super clean
Mouth ulcers are a common side effect so you need to keep your mouth super clean.  Go to the dentist before you start so you can get your teeth properly cleaned.  If you don't already have one, buy an electric toothbrush.  You should brush your teeth every time you eat and an electric toothbrush makes the task much easier.  The hospital will provide mouth wash, use it frequently.  I also found that my lips got sore and dry and a chapstick helped to ease the pain.  Buy at least a couple, one for your handbag and another to keep by the bed.

4.  Get out and about
Most people on FEC complain of fatigue and, to be honest, I had so many wakeful nights between my sore tummy and cracked lips that it was inevitable that I'd end up a bit dozy.  Of course it's important to get rest if you need it, especially in later rounds of chemo, and to accept help from your friends so that you can take it gently.

But don't settle down on the sofa too quickly.  It would be very easy to end up staying in and feeling more and more tired if you don't have anything else to think about.  So don't opt out of those social occasions unless you are really flaked.  There were a few dodgy mornings when I wondered if I really was really up to going and meeting people for coffee/attending a meeting a school/going to my voluntary job.  But when I got out of the house and met people I like and enjoy, I found that I actually felt better.  It's probably not the best time to take up karate lessons but if you are wondering whether to go to something or not then my strong advice would be - go.

And when you're tempted to have a lie down, think about maybe taking a gentle walk around the park instead.  It's beautiful out there and beauty is very healing (and walking is ever so good for getting the bowels moving too...).

5.  Be prepared for wakeful nights
I didn't figure out how to overcome the insomnia in the middle of the night: I'd regularly be wide awake at 3am, the blood pounding in my head and sleep impossible to find.  But it did help to be well prepared with a glass of water, chapstick, headache and nausea tablets, soothing music and a book all ready next to the bed.

6. Have the head shave
My oncologist told me that my hair would fall out around day 15 after the first FEC.  So I looked at wigs early to to allow time for ordering if they didn't have what I wanted then, the weekend before day 15, I went to have my head shaved and left wearing a wig.

I would definitely recommend taking control and not waiting until clumps of hair start to fall.

There's only one hitch.  My hair hasn't fallen out.  I still have a covering of bristles under my wig that doesn't look as if it is going anywhere.  One of my friends theorised that I might end up in the 0.01% (or whatever it is) of people who never lose their hair.  That really wasn't funny.  But when I saw the doctor today and complained that I still had hair she just looked at me as if I was mad and told me that it all depends on the patient and it might take another week or two yet.  Which does make my head shave seem a little premature.

I would still recommend it thought, if just because the idea of having my hair come out in my hands gives me the creeps.  I liked the way it was all in my control and on my timescale...not a last minute rush when the hair began to fall.  And it's not a big deal wearing a wig over a shaved head.  Though I never would have guessed that I'd end up waiting impatiently for my hair to fall out.

7. Celebrate every step of the way
Last weekend I was finally feeling good again, my digestive system was working and mouth wasn't sore.  So my husband and I did the most touristy of Brussels things and went and ate moules frites at Chez Leon just off the Grand Place.   He wants us to celebrate the end of each cycle, each step along the way, and he's right.  One cycle down...and five more treats to look forward to.