Tips for Tying a Headscarf (on a small, bald head)

When I knew my hair was going to fall out, I bought a wig.  I love my wig and I've had lots of complements on my 'new hair cut', but I don't like to wear it in the house, or when I want to get cosy at chemo sessions, or when I exercise and get sweaty.

So I bought a turban for these occasions but I hate it: it makes me feel like a sick person.  I had more luck with a cute peaked cap that is great for wearing to walk in the park but it feels odd to wear it inside.

So there was only one option left... learn to tie a headscarf.  

I've never been good with scarves. Some women seem to be able to effortlessly drape them over themselves and look instantly chic.  When I wear a scarf it looks odd or bulky or it comes unwound and drives me mad all the time, so I didn't think I'd be any better at figuring out a headscarf, even though I have a selection of lovely scarves to choose from.

First step when you don't know how to do something: Google it.

Googling How to Tie a Headscarf revealed some great step by step guides, some with videos to show you how to make sense of the instructions.  But the vast majority seem to rely on tying the ends of the scarf back over the front of the head to create a bow or a knot or a twist on top - this looks great on other people but totally swamps my smallish head.  I end up looking more as if the headscarf is wearing me than the other way around.

The only style that looked good on my little head required an infinity (loop) scarf.  It's really easy - you just put it over your head like a hood then twist the rest until only a small loop remains.  Then you can coil the twist up into a bun and put the loop around it to keep it in place.  It makes a cute, twenties-style skull cap with a bun behind or to the side - not too overpowering on a small head.

But the problem was that I only had one infinity scarf and loads of other scarves that I would like to wear.  So I experimented to find some other ways to create a similarly tight, streamlined look.

The trick with rectangular scarves seems to be in the way you fold it first.  If I just put a regular scarf over my head like a hood and tie it back it makes me look like a hippy (that might look cute on a twenty-something but on a forty-something... not so much).  

So I here's what I do with a reasonably short, wide rectangular scarf; fold it in half lengthways then put it over my head so that it falls over my face.  I tie the ends loosely together at the back of my head, then fold the flap over my face up over the scarf on my forehead,  to create another layer.  Then I tighten the knot at the back of my head (this step is important or I end up looking  like a shepherd.  Not a good look this close to Nativity plays).  This pulls the skull cap tight just as with the infinity scarf and then I wear the knot either at the back of the head or at the side.

Most of my scarves are too long for this though, and I'm left with long dangling ends down my back.  With these scarves I follow the same process but keep one of the ends very short.  Then, when I have tied it tightly, I drape the long end round my neck like a regular scarf.  So long as I keep the skull cap tight, it doesn't look too much as if I have just converted to Islam and it's super cosy on days when the central heating doesn't heat anything like enough to chase away those chemo chills...

I think the trick is, experiment with the scarves you have.  Try folding them in different ways, especially ones with different patterns on each side or down the length of the scarf.  Try draping the ends round your neck or twisting them up in a bun.  If your hair hasn't fallen out yet and you're struggling, don't worry.  It's much easier when you have a bald head to work on!

Happy headscarfing!

Same diagnosis...different treatment plan

Recently a friend of mine was diagnosed with breast cancer.  Her diagnosis is remarkably similar to my own: lobular, a large (4-5cm) tumour in one breast, hormone receptive. 

She lives in the Netherlands while I am next door in Belgium.

And yet her treatment plan is radically different from mine.

When I was diagnosed, I thought that the only reason for giving chemo before surgery (neoadjuvant therapy) was to shrink the tumour and so make surgery easier in cases where lumpectomy was an option.  So, when I was told that I would definitely need a mastectomy due to the size of my tumour, it seemed obvious that they would operate as soon as possible and give chemo later.  My chemo is simply intended to mop up any stray cancer cells that might have escaped round my body.

So I was rather surprised to hear that my friend will also definitely need a mastectomy and yet will start with chemo before the operation.   It turns out that there is another reason for neoadjuvant therapy - to keep an eye on whether the tumour is shrinking so that they can tell whether the chemo is working or not.  In my case, my tumour has already been taken out so we don't have the faintest idea whether FEC-T has been effective or not.  Presumably that is why they use a combination of drugs and prescribe a longer period of chemo....because they figure that some of it has to work eventually.

 There doesn't seem to be any definitive research showing that one way is better than the other.  But the interesting thing is that I didn't even know there was another way.  There was no discussion of options when I went into the hospital.  Perhaps this is a good thing because, truthfully, I'm not sure I could have coped with options in those terrible weeks and I probably needed someone to take charge and tell me what was going to happen.

But now we come to another difference in our treatment plans, where experts simply seem to disagree on what is the best option.

I was told that mastectomy with reconstructive surgery was not an option as I will need radiotherapy which causes too many problems with the new breast.

My friend in the Netherlands has been told that this is nonsense, with modern methods the radiotherapy will not cause any problems.

A quick Google seems to suggest that there are experts on both sides of this debate.  And some experts that argue that even if the radiotherapy does damage the new implant, it still produces better cosmetic results to have reconstructive surgery at the same time as the mastectomy and then remove the 'cooked' implant later and replace it.

I can't help wondering if my oncologist should have explained to me that there were other options, even if they weren't offered at my particular hospital.  Would I have switched hospital to benefit from reconstructive surgery at the same time as the mastectomy?  Probably not.  But now that the mastectomy is done, it's too late to even consider it.  I understand that my experts have taken a particular view on this issue and there is evidence to support them.  But if there is also considerable evidence on the other side of the argument, shouldn't they have been obliged to make sure I was aware of that?

I can't really regret the decisions that were made.  Chemo before or chemo after - probably it doesn't matter.  And, truthfully, I'm not sure that I will take the reconstruction road at all, and almost certainly wouldn't have risked problems with a fake breast that'd been over-radiated.  I guess I just feel uncomfortable that they weren't my decisions. 

On the other hand, a little Googling doesn't make me an oncologist.  Is that the point, that I just have to put my trust in the man who has spent years studying this field and is now making these decisions on my behalf? 

I suspect that might have been the best way in those crazy, early days when the diagnosis turned my brain to quivering jelly. But I think I will do my own research and ask more questions before any decisions are made on the next phase of my treatment.  After all, he may be the expert... but it's my body.

My Cancer, My Kids and My Friends' Kids

The effects of my cancer spread like ripples on water.

When I was first diagnosed, I worried about how my children would take the news.  Then I worried about how to tell my parents, wider family and friends.  But it is only recently that I have begun to appreciate that the ripples spread wider, including to my friends' children.

My own children seem to be coping remarkably well.  I have been open with them from the beginning, taking advice from my cancer nurse and not avoiding difficult words like cancer and death as in "I have cancer but I'm not going to die." 

They have reacted in quite different ways.  My 9 year old daughter needs to know what is going on, to touch my bald head, see my mastectomy scar.  I have let myself be led by her in answering her questions as far as she wants to take them.  It has undoubtedly added to her anxieties - she doesn't like being away from me for long in case anything happens to me so we have stopped sleep overs at friends' houses for now - but she seems reassured that I'm not hiding anything from her.  So long as she can see I'm ok, she seems to be coping fine.

My eleven year old son, however, prefers not to know too much and so I've respected his need not to have all the details thrust on him.  For a while he really didn't want to see my bald head so I was careful to keep my head covered, though he's used to it now.  He's taken things very much in his stride.

Both are extra affectionate and do try to be helpful around the house when they remember but of course they tend to see my illness very much from their own perspective.  When I started Taxol, my daughter was touchingly concerned about how I was reacting to it - and then I realised that she was just hoping that I would be well enough to host her birthday party.  My son was hoping that I'd be late picking him up from a play date while I had my last chemo, until I pointed out that meant I'd be stuck up at hospital which wasn't so nice for me.  But that's normal, they're kids and their worlds revolve around them like all other kids.  They've been remarkably mature and supportive and I'm proud of them.

While I've been very conscious of the effect on my kids, I never considered that my diagnosis might fuel the anxieties of my friends' children until recently.  But of course, children look at what is happening and think, could that happen to my mum?  The unthinkable is suddenly there, right in front of them. 

It can be difficult for friends to know how to deal with their kids' questions, while respecting privacy.  A friend recently apologised because she was answering her daughter's questions and let slip that my 'new hair cut' is in fact a wig.  She felt bad in case I minded her daughter knowing.  My personal view is that parents need to be open and answer questions as honestly as possible.  I have no problem with kids running up to me in the playground and asking me if my hair is really a wig.  But I guess not all cancer sufferers would feel comfortable with that and so parents need to take a judgment call and warn their children that the friend with cancer might not like to talk about it.  And of course some of these issues are pretty personal.  I haven't had a playground question about my fake boob yet...

Sometimes reactions can be extreme.  Another friend was, unknown to me, dealing with the beginnings of OCD in her teenage daughter.  Unfortunately, my cancer diagnosis acted as a trigger for her daughter and became a focus for her anxieties.  Her daughter now cannot be around me, becomes stressed if I have been in their car or house and doesn't like her mother being near me.  No doubt, if I had not had my diagnosis then something else would have become the trigger for her.  But it has put my friend in an awkward situation.  She did the best thing she could and told me what was going on which helped me understand why she had sometimes been oddly distant.  It did also make me feel unpleasantly contaminated as well as guilty that I had caused the problem but I know that her daughter's illness is not rational and I mustn't take it personally.  I guess in this case, there wasn't much any of us could have done to assuage her daughter's anxieties.

An extreme reaction like that is unusual, but it is worth being aware that a cancer diagnosis can affect kids outside the immediate family, especially if close friends are heavily involved with supporting the cancer sufferer.  Parents might be upset on the cancer suffer's behalf and not realise that it is making their own children anxious.  With younger children, it is important to make sure they understand that cancer is not contagious so helping out is not putting their mummy at risk.  Kids are often both fascinated and disturbed by the loss of hair, so it can help to explain that it is a sign that the chemotherapy treatment is working and it will grow back.  It helps if the cancer sufferer can be open with their friends about what is going on so that parents are equipped to answer questions.  Children deal much better with things that are explained in age-appropriate ways, no matter how scary, than with things that are hidden from them. 

And there can be good effects too.  One friend found that her children had lots of questions and she answered them openly and patiently.  The family came to visit and saw that I was still the same, just wearing a headscarf.  Soon afterwards, she was also diagnosed with lobular breast cancer.  My experience made it easier for all the family to understand what was happening, and to know that breast cancer can be just another thing that the family takes in its stride.

Having cancer totally sucks.  But if we can be open and resilient in the way we deal with it, we can be role models for all the children in our community.  My daughter and my recently-diagnosed friend's daughter have been good friends since they were toddlers.  I think they will both grow up to be strong women who can cope with what life throws at them.  

What Should You Take To Chemotherapy?

Going to your first session of chemotherapy can be intimidating.  It's difficult to know what to expect, and what you should bring with you.

Even my limited experience of chemotherapy has shown me that the experience varies a great deal depending what regime you are following.  When I was on FEC, I would spend a good four hours or longer at hospital while the contents of five different bags dripped into me one after the other.  But, because I had a PICC line inserted, I could easily type emails, surf the net, write.  Now that I am on Taxol, my session is more like two to three hours.  But it is administered by IV so I have a needle stuck into the crook of my arm and have to keep it completely straight.  The needle has to be in my right arm due to my left breast mastectomy and, given that I'm right handed, suddenly it is frustratingly difficult to do anything except read.

The environment can be quite different in different hospitals too.  I'm lucky that my hospital uses two bed roomed rooms, so we are reasonably private, have a bed with a TV and space for visitors.  Other hospitals put everyone together in a large ward in reclining chairs.  It's worth getting an idea of what to expect from your oncologist before you start.

It helps to come prepared for anything.  Here are a few tips based on the things that I think are important to bring with you.

·         A relaxed attitude.  Even if your oncologist has explained things in advance, it might not turn out as you expect.  Hospitals are busy places and things can, sometimes, take forever.  When I had my first chemo session I had a PICC line inserted and had to go down to surgery to be seen by the anaesthetist and I ended up waiting for two hours before I was seen.  So I was in hospital a good three hours before I even started chemo.  Then, every time a bag finished I had to call the nurse to change to the next bag.   Sometimes it can take twenty minutes before someone comes and when you have five bags to get through, that adds significantly to the time.  But, I can pretty much guarantee that those nurses aren't hanging out in the office having a gossip.  They're working flat out and there's no point getting angry.  Come prepared to take as long as it takes, get comfy and wait it out.

·         Make sure you have all your paperwork and any hospital ID with you.  It helps to have an idea where you are going before you arrive.  It's also a good idea to have a notebook and paper so you can take notes: for FEC I needed to remember lots of instructions about the drugs I might need to take.  It's also useful to have your diary with you so you can schedule in future appointments. 

·         Wear comfy clothes and warm socks so your feet don't get cold!  I prefer not to wear my wig and tend to just wear a comfortable headscarf.

·         Bring some reading material.  You might be there for some time.

·         I love my smart phone.  There is free WI-FI at my hospital so I can use it to surf the net and send emails (though I need to type left handed these days.)  When I started with FEC I tried bringing my laptop so that I could blog but I found it awkward to manage on the bed and there were no sockets in the room so the battery died anyway.  On Taxol, with the IV in my arm, it would be impossible to use a laptop.  Obviously it's also important to have a phone so that you can let people know if you are delayed.  Whatever device you use, make sure its charged up.

·         I also use my phone to listen to music.  Don't forget headphones.

·         I always bring a bottle of water.  I find it helps to keep hydrated and if I have to ask for water I never drink enough. So I bring a litre bottle of my favourite sparkling water and make sure I drink the lot.

·         It's a good idea to have some snacks to hand too.  Funnily enough, I never fancy sweet stuff when I'm chemo though normally I'm a chocolate fiend.  I like to have dried fruit, nuts or corn cakes handy for when the munchies strike.

·         You can bring a friend too.  The first time, it's particularly useful if someone can come with you.  Normally I go in on my own now but I text my room number around when I am settled and often a friend pops in for a chat which is a lovely way to pass the time.  Last time my friend brought a flask of hot water and herbal tea bags with her - an excellent visitor!

·         A pre-arranged pick up.  The first time you try any new regime, you really need someone to take you home afterwards as people can react badly.  For me, I've always felt absolutely fine to drive myself home afterwards and I have done that on a couple of occasions.  But my friends are eager to help and want to offer lifts and I must admit that it is lovely to have a chauffeur waiting at the door to take me home.  It helps with the parking fees too which can add up quickly if you have to leave your car in the hospital car park most of the day.

I hate that I have to spend so much time at hospital.  But now I'm well prepared to make the most of my chemo time.  When I arrive, I get straight on my bed, spread myself out and use the time to catch up on emails, have a chat with a friend or just as some relaxing reading time.  It's not so bad.

A Good First Week on Taxol

I can't believe how good I feel today.

Not just 'coping with everything well' but actually bouncingly, energetically, happy good.

It's easy to only post when problems surface so today I wanted to take a moment to remember that there are good days too: days like today when I was up early despite being home late last night after seeing Peter Gabriel live, saw friends, exercised and still feel full of fizz. 

Not bad for someone more than half way through their chemo.

Last week I started the first of nine weekly doses of Taxol - having been advised that my white blood cell count was too low to allow me to have Taxotere once every three weeks as planned.

I wasn't pleased to be faced with having chemo every single week but the first week of Taxol has gone pretty well.  I was surprised to suffer from mild, morning nausea the first few days as I didn't have any nausea with FEC but I guess that's the way it goes.  I was even more surprised to find my cheeks were burning all day the day after chemo but a quick Google confirmed that it's a reasonably common side effect (and not really a problem if you can ignore the sneaking suspicion that you've done something really embarrassing to merit your flaming cheeks).  And then the hot flashes in the night had me repeatedly throwing off the duvet and then pulling it back on as I froze five minutes later...just as well I've already opted to vacate the marital bed during chemo or I'd have driven my husband mad.

I had anticipated the aches in my legs and chest from day three, but they were no worse than the ache you feel after an over strenuous work out.  And finally, my fingers and toes started tingling which suggests that neuropathy (numb fingers and toes) will follow in later sessions. 

But, so far, nothing to stop me doing what I'd planned for a busy week.  So, overall, I think I'm glad to have escaped the 'Taxotere truck' as I've heard others describe the onslaught of Taxotere symptoms.  Of course, symptoms are cumulative and I have 8 sessions to go... but I'm taking one step at a time.

The best news came this morning when I went for my blood tests.  Last week, my white blood cell count was 1,100  - marginal even for Taxol (and too low for Taxotere), so I was sure that it would be lower still this week as there hadn't been much time for my body to recover from the last dose.  But it has actually doubled to 2,200!  It's still half a 'normal' white blood cell count which should be 4,500 but quite high enough to allow me to have my second dose of Taxol tomorrow.

One down, eight to go. 

So far so good.

Five More Good Things About Having Cancer

I'm feeling a bit down this week as I've had to switch from Taxotere to weekly Taxol.  So it's a good time to go back to my challenge - to find genuinely good outcomes that wouldn't have come about without the Cancer (whilst accepting that Having Cancer Totally Sucks).  I am grateful for  things like living in a country with good healthcare or the fact that they caught it when they did, but these are merely mitigating factors  not good outcomes. 

A few weeks ago I did a list of 10 Good Things About Having Cancer - here are another five.

1. Everyone thinks your amazing
Seriously.  Just plaster a smile to your face and crack a few jokes about being bald and everyone will shake their heads and declare that you are just so brave.  Am I brave?  Of course not!  It's not like I have any choice, I've been dealt a crap hand and I just have to get on with living life as best as I can.  Yet somehow this brings me close to sainthood status.  This is cool.  Enjoy.

2. No nits
The signs have gone up on school warning that those dreaded head lice are creeping through our children's hair again.  Usually the mere idea is enough to have me scratching away until my scalp hurts.  Not this time.  Even if my kids get it, I will be a bald, Nit-Free Zone.

3. No shaving
I have no hair on my head - nor pretty much anywhere else.  Usually as winter approaches I get rather lazy about shaving and end up cultivating a jungle of hair on my legs, which can be toe curlingly embarrassing if they get exposed unexpectedly.  Not this year.  My legs and under-arms are effortlessly smooth.  

4. Expanding your culinary range
My experience has been that people really want to help.  Really.  So a friend has organised them into a dinner rota and now everyone takes it in turns to cook for me each night for a week after each chemo session.  What luxury!  And what fabulous dishes.  Most of us are guilty of falling into a culinary rut, but this is opening my eyes to a world of alternative supper menus.

5. Guilt free chat sessions
It's so difficult to find proper time to catch up with friends and easy to feel guilty about snatched coffees when really you should be doing laundry/shopping/ironing.  But I've taken to inviting people to join me at the hospital while I have my chemo session.  Hours of guilt free chatting, it's not like you can be doing much else while hooked up to an IV after all!

I have nine sessions of Taxol, radiotherapy and hormone therapy still ahead so plenty of time to find a few more.   Can I get this list to twenty?  Suggestions welcome!

Taxol vs Taxotere

This morning I wrote about my nervousness as I faced the Terrors of Taxotere.

Only it turns out that I'm not.

I went in for my blood test this morning and apparently my bone marrow is struggling to cope.  My white blood cell count is low again  - too low to start on Taxotere tomorrow as planned.

I could just wait a week as I did last time but the doctor warned me that this is likely to be a recurring problem.  Too many delayed weeks could make the chemo less effective, never mind the fact that it would drag on forever.

So, the alternative?  Taxol.  Less severe on the white blood cells so I can start tomorrow as planned.

And the catch?  Taxol is administered weekly.  So instead of three more rounds of chemo with one every three weeks, I'm now facing nine rounds of chemo with one every week including both weeks of the kids' Christmas holidays.  I am really not feeling happy about that.

Still, if I try and focus on the big picture, the good news is that Taxol seems to be at least as effective as Taxotere.  Some studies suggest that weekly Taxol may even be more effective.  As for side effects, it's the same class of drug so the type of side effects are the same: muscle and bone pain, numbness in hands and feet (neuropathy), diarrhoea, nausea, possible loss of finger and toe nails.

My doctor assured me that side effects tend to be less severe on weekly Taxol than with the larger dose of Taxotere every three weeks.  A quick trawl of cancer blogs and discussion groups show a more complex picture with some women complaining of worse symptoms with Taxol, especially for neuropathy.

Perhaps the moral is that I should listen to the doctor and not frighten myself with Google searches....  Because the bottom line is the same: everyone is different and no-one knows how I will react until I try it. As with so many things in this field, it's a confusing and complex picture and there are no straightforward answers. 

The only thing I know for sure is that I will now be spending a lot more time at hospital.

I'd better go and buy some good books.