Hooray, My Hair Fell Out!

When I first got the Cancer diagnosis, almost my first fear was that my hair would fall out.  Why is it that so many of us have a terror of the moment we lose our locks?  Is it a sense of being robbed of our identity?  A fear of having to publically declare our infirmity?  The reality that it might be last time we have lovely, long tresses as it will grow back slowly and possibly grey?

In any case, I never guessed that when the moment actually came, I would cheer with delight.

You see, I decided that it would be simply too distressing to wait until my hair came out in clumps so I opted to have it shaved in advance.  Despite what followed, I'd still say this is the best way to deal with a crappy reality: take control, choose your wig and decide the day you are going to start wearing it.

There was only one hitch: my hair refused to fall out.  My oncologist told me that it would start to fall around 14-15 days after my first chemo.  It would certainly be gone by the time I had the second round, he said.  So I went on day 10 and had the chop.

And it didn't fall.  Worse, it started to grow, so the bristles on my head became needles that stuck painfully into my scalp and caught on my wig and scarves.  What to do?  Should I let it grow, suffer the growing pains, only to have it fall out eventually anyway?  Or should I go and have it shaved again?  Was it possible that I would never lose my hair??

Then, twenty-seven days after my first chemo, I was in the shower and ran my hair over my bristly head...and it came back black with hair.  In one shower, almost the whole lot went down the plughole.  Suddenly my head felt smooth and comfortable again...and I was delighted.  

So now I'm properly bald and I feel vindicated in having had the shave (even if it was a little premature).  I can't imagine how awful that shower would have been if it had been great handfuls of wet hair blocking up the plug hole and sticking to the walls instead of mini-pins of hair.

Given my hair was so resilient, I'm now keeping my fingers crossed for my eyebrows.  A girl can live in hope, can't she?  But I might just get an eyebrow pencil ready anyway...

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.

Wigged and Boobed: Getting the Prosthesis

After one more trip down to the lovely boutique providing Everything For a Lady with Breast Cancer, I am delighted to announce that I am now fully wigged and boobed.

The wig I bought at the weekend has worked out very well indeed; I've even had compliments for my new hair style from people who don't know about the Cancer.  So I went back this week to pick up my new mammary prosthesis.

Getting the prosthesis didn't take long as there wasn't much choice: apparently I can't get one that sticks to your skin until I've completed all the treatment.  I was, in any case, rather cynical as to whether that actually works - can it really retain it's stickiness?  Imagine the humiliation if it fell off!  But I was reassured that they do work well, especially for someone small breasted like me and with a scar that has healed neatly.

In any case, for now I have a silicon gel prosthesis that slips into a pocket in a mastectomy bra.  The only choice was whether to take one slightly smaller or one slightly larger than my remaining breast.  A no-brainer, I figured.

Then onto the fun part!  I chose new bras, which do need to be a little sturdier than what I usually wear, but don't feel grandma-ish.  And my new swimming costume is super-cute, no-one would ever guess that it is a mastectomy costume.

Finally, I took my new boob out for a test drive.  

Being small breasted has made it relatively easy to disguise the mastectomy over the last few weeks, simply by not wearing a bra and padding out the missing side with a cushion-boob pinned inside baggy clothes.  But the price was that I had almost no shape at all.  So it was great to be able to slip into my old tops again and fill them out properly.  Most of my old wardrobe is wearable again, with the exception of strapless evening wear, and one or two tops might need adjusting as the new bra is quite large and tends to show.

The prosthesis isn't heavy at all, the bras are comfortable, and my 8 year old daughter snuggled in for a cuddle and declared it to be suitably squishy.   After wearing it most of the day, the scar can feel a little uncomfortable but I think that will pass in time.

So all in all, a great success.  And I can't wait to try out my new costume...

Having The Head Shave

I'm now officially a One-Boobed And No Hair Babe.

Yesterday I went and had The Shave... and I'm pleased to say that I shed no tears as my hair fell.  We made it a family outing so that my 8 year old daughter could help me choose a wig and I think this was a good way of dealing with something that might have seemed pretty scary otherwise - i.e. Mummy arriving home looking like Someone Else.  But I was also glad that I'd spent a couple of hours there looking at wigs the previous week as the children's attention span was definitely not that long.

My husband took the kids away for the actual shave and my daughter shed a few tears on my behalf before she went ('This is the last time I'll see you looking like this, Mummy!').  Then the wonderful lady at the boutique gently started shaving my head at the back so it wasn't too brutal a transformation.  I opted to keep the mirror but we chatted as she worked and I can honestly say that it wasn't too bad watching my bald, bristly head emerge (and I was dreading this part).

I have read some terrible stories about people finding clumps of hair on the pillow, or trying on sunglasses in a shop and handfuls of hair coming away, so I would definitely recommend getting it shaved in a sympathetic setting before it even starts to fall.  

And then came the fun part!  I loved both the wigs I had selected so I let my daughter make the final decision and she cheered up a lot.  

I also found a  super cute hat with a peak that completely disguises the lack of hair and is perfect for taking walks in the park when I don't want to wear the wig.

The turban I bought last time, however, hasn't worked out so well now that I'm actually bald.  I think my mistake was buying something in a floaty, flowing style completely different from anything I might ever wear normally.  While obviously I wouldn't normally cover my head at all, I have now managed to tie one of my existing scarves around my baldie head in a way that feels a bit funkier to me.  Perhaps the lesson is to buy the minimum until you are actually bald and then see what works (I couldn't manage to tie the scarf at all while I still had loads of hair in the way).

And then the ultimate test: straight to a social event with my new wig on my head (and me fighting the urge to take it off when I went indoors because it felt like a hat).  Everyone was very complimentary and thought it looked good.  Or at least they said so in a pretty convincing manner.  And I think it must look alright because my friend's 8 year old son had to have a good look before he would believe it was wig...and kids usually tell it pretty straight.

Creeping FEC...

It's fascinating to watch the effects of FEC creep through my body.  If a little macabre.

My oncologist explained that chemotherapy works by killing off cells that divide rapidly.  Cancer cells divide rapidly, so hopefully FEC is currently killing off any of the little blighters that might have escaped into my system.

Unfortunately quite a few good cells also fall into the category of cells that divide rapidly; notably cells in the intestine, mouth and hair.

So, my stomach was the first to go.  I was lucky that the nausea wasn't too bad (or maybe that was just the effect of the many anti-nausea drugs I had to take) but the indigestion hit in pretty fast.  I couldn't eat more than a piece of toast without it sounding like there was a firework extravaganza going on inside my belly.

One week later and the indigestion has passed - presumably the healthy cells in my intestine have won the battle against the chemo drugs.  Now it is the turn of my mouth.  Large areas on my soft palate have lost the mucus layer that usually protect it and feel raw and exposed.  My lips feel bruised.  I ate a tangy kiwi yesterday...ouch!

Hopefully this too will pass and then it will be the turn of my hair to fall before the chemo drugs.  Almost exactly two weeks after the first session of chemo, they assure me, it will fall out in clumps.  

Except it won't because I had it shaved off today.

Ha! Got one over on you, FEC.

Accepting Help

"I'm so sorry to hear about your cancer.  Just tell me what I can do to help."

And they mean it too.  Over and over again, I have had offers of help from friends who are genuinely eager to do something when they hear what my family is going through.  Given that I can expect to get a good deal sicker before I get better, I also figure I'm going to need some help.  So this should be a perfect partnership.  Right?

Except that it isn't easy to accept help.  Maybe this is a particularly British thing (my British-Indian friend told me I needed to be more Indian - 'we're not afraid to ask,' she said).  But it's not easy to turn that general offer of help into something concrete.  To ring up and say, 'You know you offered to help?  Well I really need xyz.  Will you do it?'

Even when people insist, it can be difficult to know what to ask people to do.  What will I need after my next session of chemo?  I don't know!

Some of my friends have taken matters into their own hands and have arrived on my doorstep the week after my chemo to deliver a family meal.  This kind of help is truly wonderful...but without coordination it can lead to an excess of food at one time and a famine at another!

So, first, I needed to figure out some practical things that I could ask people to do.  The biggest one, I think, is to provide meals.  This way I don't have to cook, and I don't have to shop too much either, or weary my poor chemo-brain with planning dishes.  One friend offered to cook twice a week all the way through my chemo (I know, amazing!) but I worried that this would just become too much of a chore for her and a source of guilt for me.  So I decided to ask for meals every night for one week after each chemo session from a larger group so no-one has to cook too often for me.  I'm hoping that the second and third week of each cycle I will be well enough to do meals myself (if not I might have to learn to ask again...)

 Another practical thing is to have someone to pick me up after each chemo session.  I don't think this is strictly necessary but it is rather nice.  

And thirdly, I will need help with childcare when I have to be in hospital.  

Next, I found a good friend prepared to coordinate.  it's much easier when someone else does the asking.  Within hours of her sending out the email, the rota for my next chemo session was full.  People were pleased to have to chance to help and I now know that I don't have to worry about feeding my family for at least a week (I can probably do another week on leftovers!),  I have someone to collect me after my session and I have friends on standby to help with the kids.

Now if people ask me what they can do, I just direct them to my friend who adds them to the email list.  

So far this is going remarkably well and my family have been spoilt with an array of fabulous new dinner dishes.  There is only one problem.  If all my friends all cook this well, then I'm going to have to take a cookery course when this is all over.  Otherwise my kids will stage a revolution...