Saturday 30 August 2014

Wig Shopping


I have less than two weeks before my hair will fall out.   No maybes...no question...it's just going to start appearing in clumps on the pillow and in the shower plughole.

So - definitely time to get on with selecting a super new wig.
Luckily, a nurse at the hospital recommended a wonderful boutique which provides everything I will need, not just wigs and head coverings but, later on, also the prosthesis and mastectomy underwear and swimming costumes.  It made such a difference having an appointment in a calm and relaxing environment and being able to take my time trying on wigs and other headgear. 

Have some fun and try some different styles and colours - it transforms you!  The wigs themselves are amazing, with highlights and convincing hair strands, netting that holds it securely and a fine mesh under the parting to show your scalp rather than stitching.  I was worried about the wind (imagine it blowing off down the street, oh, the humiliation!) but I was assured that it would stay in place in wind or even if I lean over.  

In the end I went with the familiar and stuck with my usual hair colour (though for once my summer sun highlights won't fade this year).  Take lots of photos!  It really helps to compare the different options without having to constantly put them on.  

I found two wigs I liked, both a little shorter than my usual bob style so they tuck in to the nape of my neck which the assistant suggested might be easier when the weather gets cooler and I start wearing scarves.  Also, when I have a few centimetres of hair growth again, the wig will start to slide and won't be able to wear it anymore.  So I will have some time with very short hair and there will be less of a contrast than if I'd gone for a longer wig.

Then we looked at the array of headgear to wear when I don't want to wear a wig.  There are so many options, many quite stylish, though I must admit that they all made me feel a bit as if I looked like a sick person.  One option was to buy a base cap and then choose scarves to tie around it, this was appealing as it would be possible to change the look without spending too much (this stuff does add up).  Then there were turban type options with bands that tied from the front to the back.  In the end I chose a silk bonnet, which had quite a lot of volume to make it look like there might be hair underneath and a matching silk scarf to tie around the band.

Finally, I bought a warm skull cap to wear at night - bald heads get cold.

I'm going back next weekend with my daughter who wants to help me choose between the two wig contenders...and then they will shave my head.  In the end, I decided not to wait to find hair around the house, this way is empowering for me and better for my vacuum cleaner...

Verdict - take a good friend, get loads of photos and have a giggle.  Yes, losing my hair is going to be awful.  But it doesn't mean we can't have some laughs as well.


Post mastectomy: Five week report



It's now over five weeks since the mastectomy and there's good news: my left arm is nearly back to normal.

After three weeks I was feeling very discouraged by the limited movement in my left arm.  As I was away on holiday, I still haven't seen a physiotherapist but I think the mistake I was making was to exercise it frequently for short periods of time.  I  would find that it would loosen up a bit then an hour later it would have seized up and I'd have made no progress.

So after three weeks, I started spending at least 20 minutes intensively exercising and stretching, several times a day.  That way, I would make a good deal of progress with each movement and when it seized up again, it didn't go right back to the beginning.

Now it is still a little stiff, especially in the mornings, but once I have exercised I have almost full mobility again.  

Otherwise, I was a bit concerned yesterday that the area around my scar (which has healed up well)  started to feel tender, was something going wrong?  Then I realised that this was the area that previously felt numb: it is just the nerve endings coming back to life.

Coming back from holiday to face the world again has made the clothes issue more difficult.  I tried putting my little cushion-boob into an old bra and found I had one boob much higher than the other, not a good look!  My moulded under-wire bra does the job perfectly but I'm not sure I should be wearing underwiring yet.  So my solution tends to be to pin the cushion-boob onto a little strapless top and wear it underneath another top.  It's just another week until I can go and get the prosthesis and buy some proper mastectomy bras.

So all in all, I'm feeling that I'm well on the road to recovery from the mastectomy.  Next stage, chemotherapy.

Thursday 28 August 2014

PICC Line and First Chemo Session (FEC-T)



Today I went in for my first chemotherapy session.  A pretty classic combination I think: FEC-T (three sessions with FEC and then three with Taxotere.)

First, I had a PICC line inserted.  I really wasn't looking forward to this part but it wasn't too bad.  FEC is bad for the small veins of the hand and arm so a reguar IV isn't a good idea.  The other option is a port inserted into your chest but this is a full surgical procedure and will leave a scar.  So  PICC line is a good middle road: they insert thin tube into your upper arm and all the way along to a vein near the heart so the drugs pass straight into larger veins.  It can be inserted with a local anaesthetic and taken out after a few weeks.

It was still quite a procedure though, I was taken back down the operation room (I'm getting to know it quite well now) and had to wait for an anaesthetist to perform the procedure.  The first time they found a vein that wasn't straight so they had to remove it completely and start again.  I found it uncomfortable but not really painful.  The worst thing was that they bandaged it up very tightly so it was painful to bend my arm and, as  my other arm still isn't fully recovered after the operation, I panicked a bit about having two bad arms.  But the nurse reassured me that she would rebandage it after the chemo and it would be more comfortable.  It is, indeed, just a minor discomfort now.

Now I have to arrange for a nurse to change the bandages every week and they will remove it after the three FEC sessions (Taxotere can be administered through an IV).  No baths, a plastic cover for showers, no swimming and no squash...  I guess getting back to playing squash was optimistic when I'm having chemo anyway (the nurse certainly thought so)...

Chemotherapy itself was no problem at all, though the whole process was long.  There was quite a queue for surgery so the PICC line process took a three hours (the acutal insertion, probably just half an hour) and then we had to wait a while to get the drugs set up. I started and finished with saline and each drug came in a separate bottle, so every time one had emptied I had to wait for busy nurses to come and change it for the next one.  In the end I was at the hospital for seven hours, but they tell me it will be much quicker in future as the drugs will be ready and I have the PICC line inserted.

And the side effects?  So far, nothing.  (except that the middle drug has turned my wee bright red). But to be honest it's only been a few hours so I guess it is all to come.  Although they have equipped me with an array of drugs for nausea (prevention and cure) and mouth ulcers.   I was originally going to drive myself home from the hospital and actually that would have been fine.  But a friend insisted on coming to pick me up and I'm glad...it was much nicer.

Sunday 24 August 2014

Ten Good Things About Having Breast Cancer



Let’s be honest about this: having breast cancer totally sucks.  

When I was first diagnosed, one doctor suggested that I could make this a positive thing in my life.  Sorry, but there is no way I can ever imagine looking back on this and being glad that it happened.  Not the scarring surgery.  Not the hours I will spend putting toxins into my system and being ill. Not the fear in the night that this is only the beginning.

But it is nevertheless true that there is always a positive side to everything!  So this is my challenge, to find ten genuinely good things about having breast cancer.  (And the things that people usually offer don’t count, like ‘at least they caught it before it spread any further’, or ‘it’s good that you were diagnosed in Brussels where the treatment is so good’.   They might be true but they are mitigating factors of a bad situation, not genuinely good outcomes).

So here goes.
1.       Family
This is the main one for me.  My husband has been tremendous and it has recreated a closeness between us that routine life had started to erode.  My kids have shown understanding beyond their years and buoyed me up with their love and affection.  And the extended family have rallied round with support (well, most of them, there’s always one).  Something like this makes us say the things that too often go unsaid.
2.       Friends
 I’ve also been really touched by the way that friends have rallied around and offered help.  Meals delivered to the house, messages of support, help with childcare and shoulders to cry on.  Strong friendships are forged in times of trouble.
3.       New friends
Shared interests create friendships; a bit ghoulish in this case but still true.  I’ve already made one new friend; my lovely room-mate in my hospital room when I had my mastectomy.  I’ve contacted my local cancer support group and hope to meet some people outside my usual circle.  As an expat living in an international social network where friends regularly relocate to a different country, this is a benefit not to be sniffed at.
4.       I won’t have to wash my hair
This might sound silly but losing my hair is one of the things that has scared me most (more than losing my breast).  I am quite stressed about having to go out in the world with a bald head in a few weeks time and I hate the thought of wearing a wig.  But here's a thought from a breast cancer sufferer, she found not having to wash her hair liberating.  She’s right, I hate having to wash and blow dry my hair! 
5.       Exercise, exercise, exercise
I’ve been saying for a long time that I need to do more exercise but there always seem to be other chores that need doing first and it never happens.  Now the doctor has prescribed at least 2.5 hours of exercise per week.  So now no-one can complain that the laundry isn’t done and they don’t have clean underwear because I was too busy walking in the park.  It’s doctor’s orders.  I’m looking forward to the challenge of getting fitter...and doing fewer chores.
6.       New dresses
I don’t mind so much that I have no left boob any more.  But it’s still difficult to think of any really good outcomes from a mastectomy and this is the best I can manage – guilt free shopping.  I’m going to need some nice new evening dresses to disguise my lack of cleavage, lots of new lingerie, a new swimming costume, some nice scarves to disguise it...Oh yes, a shopping trip is definitely required.
7.       Improving my French
This probably isn’t one that will apply to many readers but I guess it shows that we all have our own positive outcomes depending on our situation.  As an English speaker living in Brussels, I have struggled to practice my French without people just switching into English.  At the hospital, most of the nurses prefer to stick to French and, if they are busy changing bandages etc, there is always an opportunity to attempt a bit of a chat.  You’d pay a fortune to go to a French conversation class for that!
8.       Reading some good books
There aren't many advantages to waiting for hours in busy, strip-lit corridors of the hospital for endless appointments.  But at least I've been able to read those books I've wanted to read for ages.
9.       The opportunity to be selfish
Most wives and mothers spend a lot of time running around after others.  This is a great excuse to put our feet up with a cup of tea and get them to run around for us instead.  Or book that spa weekend with a girlfriend.  Who can say no to someone with breast cancer?
10.    The fierce exhilaration of success
I’m ending on a bit of a philosophical one.  I think that sometimes life can get a bit too comfortable – everything trundles along perfectly fine on an even keel.  But if we don’t experience some downs, we also don’t get the exhilarating ups.  Often we find other ways to overcome the inevitable tedium; learning to ski, climbing a mountain, running a marathon.  We create difficult moments, even pain, so that our eventual success tastes sweeter.  I hate running and yet I’d still rather have signed up for a marathon than faced breast cancer.  But, like it or not, cancer is my challenge to overcome.  It’s already brought with it some terrifying downs.  But it’s also brought some exhilarating triumphs.  I have been despairing of ever having full movement in my left arm again but this morning, after two weeks of exercises, I pointed directly up at a clear blue sky.  That simple movement filled me with a sense of joyous achievement.  There’s a tough path ahead of me and it’s going to be exhausting and miserable at times.  But there will also be a fierce exhilaration at every stage successfully completed.

So that’s my list – I’m hoping it will help me through the next stage...the dreaded chemotherapy.   And you never know, I might even find a few more to add to my list along the way.

Friday 15 August 2014

Post mastectomy clothes tips (for A-cup ladies)

It’s only three weeks since my unilateral mastectomy so I haven’t yet progressed to prosthesis, post-mastectomy bras, evening wear or swimming costumes.  But I still have some tips to help people survive the immediate post-op clothes crisis.

1.       Button-up tops.
Thank goodness I read this advice online before my operation and bought some button-up shirts and button-up pyjamas before I went into hospital.  I can just about wriggle into a loose pull-on top now but in the early days, I couldn’t raise my arm enough to get them on over my head...let alone get them off again.
2.      Drains
I didn’t leave hospital until three days after the operation and they took out my drains before I went home.  But lots of women seem to be sent home with drains and they advise bringing clothes with pockets to put the drains into.
3.      The bra problem
The hospital warned me not to wear underwired bras too soon and suggested unpicking the stitching and pulling the wires out temporarily.  Mine are either super-stitched or else I’m not terribly domesticated, but a brief inspection made it clear that wasn’t going to work.  Luckily I have some old bras that are not underwired...but I have not yet been able to face wearing them over the scar.  Women with larger breasts will, I guess, have limited options but an advantage for A-cup sized ladies is that we don’t really need to wear a bra for support. So I have found it much more comfortable to go without a bra at all.  But of course, this brings other issues.
4.       Button up tops...with breast pockets!
If you don’t wear a bra, then you have nowhere to put padding and, even with a tiny breast, the flatness of the other side is still very obvious under most tops.  By sheer luck, the shirts I bought had pockets over the left breast i.e. the one that got the chop.  This distracts from the flatness underneath and some cotton wool pads in the pocket can go a long way.
5.       Spaghetti-strap tops
No, I am not sauntering along the beach in a spaghetti-strap vest top – that would be truly brave.  But they can be a helpful underwear substitute if you can’t face a bra.  At the moment, I prefer to wear baggy tops rather than tight ones for obvious reasons but they are often sleeveless and I am quite paranoid that leaning forward with my arm out gives a perfect view of my flat, scarred chest.  I don’t want to give children nightmares.  The vest-top is easy to wriggle into (even with restricted arm movement), there are no straps across the chest to irritate the scar, but it is close-fitting enough to hide it.  And you can even pin a padded cushion-boob on underneath.
6.       Scarves
I wasn’t foresighted enough to pack scarves for my holiday but I wish I had.  When I take my cardigan off, I wear it over my shoulders with the sleeves knotted in front and that works pretty well to hide the flatness.  A pretty, flowing scarf would work even better...hmm, sounds like an excuse to go shopping...

Post Mastectomy: three week progress report

It’s now three weeks since my unilateral mastectomy operation and here’s my progress report... 

In terms of energy levels: I’m surprised how well my body has bounced back.  We had flights booked just one week after the op which seemed rather optimistic but I coped reasonably well and, after a quiet few days, I’m now doing lengthy day trips with lots of walking.  No problem at all.
 
The scar is healing up well – I was lucky enough not to suffer from any swelling.  I think the area of sensitive skin on the back of my arm may have shrunk and similarly the area of total numbness on my chest seems smaller.  Perhaps that’s just me getting used to the weirdness.

But, and this is really bugging me, I still have very restricted mobility with my arm.  I can move it reasonably freely below shoulder height but lifting my arm above shoulder height at the side is painful, so things like putting my hair up is still depressingly difficult (especially as my hair is now way too long and I don’t want to waste time on a haircut – just a few more weeks and the whole lot will fall out anyway).

Before anyone tells me I should be doing my exercises, I should add that I am exercising my arm all the time.  Yes, I may be sitting in bars drinking the local plonk, but I am also doing shoulder arms circles (more than once the waitress has come to take my order as a result).  When in the car, I am sitting with my hands behind my head (sounds good, but my chin has to practically rest on my chest).  And my children laugh at me doing the ‘train’ motion with my arms as we walk (actually, so do the other tourists). 

Every time I exercise for any length of time, my arm loosens and I make progress.  Then a few hours later I do the same exercises...and find I am back at square one.  I can feel a tight cord in my armpit when I lift my arm and it currently doesn’t seem possible that I will ever stretch that cord enough to allow full mobility 
again. 

I guess I just need to keep the faith...and keep exercising.