Hair / Cold Capping
One of my biggest fears was "will I lose my hair"? Well, unfortunately the answer, if you're having chemo, is usually, yes. For some cancer patients, they deal with this by shaving off their hair, others do whatever they can do to keep it (and I'm in that category).
The worst thing to say to somebody though is "it'll grow back". Well, errrrr, yes it will BUT how abour you shave your head now. Does the thought of "it'll grow back" keep you going and make you happy?
For me, I've always loved my hair. I've taken great pride in it and washed and styled it (straightened) every day. For me, it was my mane! I'll make no excuses when I say, the thought of losing my hair was one of the worst things about this bloody awful disease. Oh and you don't just lose the hair on your head - no, that would be too easy! - you lose eyebrow, eyelashes and body hair.
Yes, it will (eventually) grow back but that's not the point. In between times you have to look in the mirror and not enjoy what's staring back at you.
Okay, that's all the bad news. So let's look at the good news!
A company called Paxman have developed a system of cold capping - ie during
chemo, wearing a contraption on your head that literally freezes it so that the
chemo doesn't get to the follicles, so you may not lose the hair. Ok - so
that's the theory. On a practical basis, Paxman say that you will lose
some hair and for cold capping to be considered a success, you won't have to
wear a wig, scarf, hat or other hair cover. Depending on the type of chemotherapy drug you're having, you have to wear
the cold cap for around 30 minutes before the treatment, during the treatment
and then for about an hour after. For me, the cold cap had to stay on for
at least 3-3.5 hours.
When you first decide to cold cap, your breast care nurse will fit you for an inner cap (it's rubber and it's the bit that generates the cold next to your scalp). There are 3 sizes, I think, small, medium and large. Then over the top you have what looks like a cycling helmet to hold everything in place - and this has a chin strap that ensures good contact with the scalp. You'll see from the photo that I'm sporting what looks like a Tutanhamun beard! This is actually a soft piece of fabric that I found and hooked under the chin strap so I could pull it down to stop some of the choking feeling that the tightness of the chin strap can cause. It also helps to pull the whole thing down onto the scalp - and the closer you get to the scalp the better. Once the outer helmet is put on the whole unit is hooked up to the Paxman machine that maintains temperature throughout the treatment. You'll also notice that I'm wearing about 95 layers of clothes (actually 5 and those include cold weather underwear suitable for skiing)! You do get cold so it's advisable to wrap up in as many layers as you can.
The photo below on the left is taken straight after my first chemotherapy/cold capping session. I was just so pleased to get through it!
Well, I can't lie. Cold capping, for me, hasn't really worked. I did everything I was supposed to do - I only washed it once a week in tepid water, I didn't brush it with a normal hairbrush, only a tangle teezer, I didn't dry it with a hairdryer, straighten it or apply any products. I religiously stuck to the Paxman rules but unfortunately it didn't work. Actually, cold capping has possibly partially worked as I haven't lost all my hair. They do say that if you use the cold cap, it does encoursage hair to grow back quicker so fingers crossed!
On about week 5, my head started to feel really strange. It hurt and ached and there was a strange fizzing feeling. I know now that's a sign that the folicles are getting ready to shed the hair but at the time I didn't know. Literally overnight though, my hair started to shed. If you don't use the cold cap, hair comes out around week 2 and can fall out literally within a few days (for others it takes longer).
I held on to the fact that Paxman say you can lose some hair so despite the fact that every day I was shedding a ball of hair the size of a large Daddy hamster, I persevered with the cold cap. Once the shedding had started, it didn't really stop. Some days there was a Daddy size hamster, on other days there was a baby sized hamster (like the photo top right). My house turned into a giant fur ball and there was hair everywhere (which was really distressing). It got to the point where I knew that you could see my scalp (especially on the top of my head), so I knew I had to bite the bullet and either shave it all off or find something I could wear on my head that I found comfortable.
So I experimented with scarves at first - that proved to be a disaster as hubby came in and said "oh you look like Tupac"! Well thank you! Back to the drawing board! It was actually my friend Nicki who suggested I give a wig another go. I'd bought one before chemo so I was prepared but it was so hot to wear I couldn't stand it. I went the following day to a wig shop and found the most sensational wig that I felt good in and that was it - I became a wig wearer! (There's more about wigs in one of the tabs above).
Interestingly, at that point I had finished the first half of my chemo and my chemo drug was going to change. My Breast Care Nurses (I have 2) both said that the next drug was kinder and not everybody lost their hair (and some even reported hair growth during the treatment) so I decided that as the chemo was then going to be weekly, I couldn't face cold capping for 12 weeks. In any case, I knew I couldn't be seen without a wig because my hair, still shoulder length, was so thin and wild I looked like the love child of Albert Einstein and the scientist from Back to the Future! Not a good look!
With the decision made, I had all my remaining hair chopped to about an inch long but in a sort of style that wouldn't grow out making me look like I'd had an electric shock (or so my hairdresser told me)!
Interestingly, the very bald area on the top of my head has started to grow hair again (4 weeks into the next regime) and the bald patch definitely has a lot more coverage. It's still very skinny and a work in progress but it's not falling out anymore! Woohoo!
In the photos above, the one on the extreme left shows a baby hamster shed! The photo next to it was was taken on 12th September and the two on the right were taken on 24th September - so you can see that in 12 days some of the bald bits are getting a little less obvious.
I will continue with "hair watch" in the blog section if you want to follow my transition from Albert Einstein back to normality!!!!