fragile - chemo is not just about hair loss

I am more fragile than I like to admit. Realised that tonight when I felt so awful and just crumbled in a heap under my duvet and went to sleep. Only later when I searched in vain for my thermometer, did I realise that oh my goodness, could be ill. And did I have to phone The Tango Man? It is the vulnerability, my vulnerability that is so difficult to handle. To accept. That one minute I can be ok and the next feel dreadful.
And woke up last night, one of my many times in the middle of the night and realised how overwhelmed I was by the upheavals of the last few months: diagnosed with cancer, then my mom diagnosed with cancer and she dying five days later when her diagnosis had not been bad. I still cannot understand that even though I spoke to the surgeon who had diagnosed her.
And this chemo. People don't understand, and why should I expect them to cos I certainly did not know, did not even think about it; that the hair loss is the issue. Yes it is awful and yes, it can be embarrassing and yes, it can make you feel ill at ease but really, that is not what chemo is about and that is not the worst thing about chemo. It is the most obvious but really the least significant. It is things like suddenly feeling dreadful, suddenly feeling ill in a way that cannot be described and then lying down and both hands and arms hurt like hell where chemo has burnt the veins... ja, chemo is not about hair loss. That is just the obvious part.

a tip

A tip on how to wear a hat when your hair has fallen out. Buy an alice band (well that's what we called them, perhaps a head band, an elasticated fabric one) and wear it at the edge of your head closest to your head. Then the hat fits properly because without hair, the hat will seem too big, not filled-in enough; essentially the alice band provides bulk. Alternatively, wear a tight little cotton hat/covering/type of turban underneath it for a better fit.
Still finding hats a bit of a nuisance - they give new meaning to getting dressed in the mornings - and whip them off the minute i get home, to be replaced by a scarf, preferably silk.

A tally after third chemo treatment for breast cancer

Today is exactly one week after my third chemo treatment for breast cancer. I still don't know how many more chemo treatments I still have to go through but as far as I know it is either one or three more. Neither do I know which treatment follows this chemo or whether or not I need an operation, or the nature of the op should it be needed, and quite frankly my doctor The Tango Man has not determined it yet. Think it has a lot to do with the fact that I don't have a primary tumour, in fact, no tumour can be seen in the breasts itself even with MRI testing, but the cancer has spread to two lymph nodes below my left armpit.
Thought it might be useful to do a tally of where I stand right now:
* Not feeling great today but not shit either.
* Have not had to take any anti-nausea medication today
* Have not taken diarrhea medication for about 10 days but went to the toilet three times today so not ideal
* No longer have cramps but carry the medication around just in case
* Have lost almost all my hair but there is fluffy regrowth on top which I have told 'peers' through a silk scarf (which I wear only when with close friends indoors, the rest of the time it is hats)
* Have lost most of my body hair but not all; shaved under my arms about a month ago and have not needed to again, the same with my legs, and the latest is my dwindling eyebrows for which my latest acquisition is a R210 Clarins eyebrow pencil which I think I prefer to the R400 pencil I bought which adds hair
* Have sore hands and arms below the elbow - apparently the veins are burnt by the chemo - and rub retrogel on twice a day and scream dramatically if anyone touches my hands or lower arms
* Have a mouth ulcer which keeps moving its spot and am overdosing on the pretty yucky yellow emulsion which treats it
* Am tired if overexert myself, eg, visit five shops in a row in different areas on a Saturday morning - then need to sleep for hours
* Did not eat properly for about five weeks and lost weight, now have not stopped eating for two weeks and have gained weight - overall, no longer have any idea what I like eating or do actually eat
* Have some muscles else would not be able to sit and/or walk but essentially have no mucle tone - my thighs are jelly, my upper arms a mess, my neck is losing its elasticity, even my back is softer as there is no/little underlying muscle and generally I am on a quick pathway to instant ageing.

Next time someone asks how I am, feel tempted to say: "Considering I am on a programme of systematic poisoning, not doing too badly and bearing up, thank you!"

* My nails have developed ridges and my cuticles are a mess
*

how to wear hats

http://www.tlcdirect.org/articles.aspx?art=129


Just found this brilliant site (see above) on how to wear hats if you have chemo hair loss. Wish I had read it before I went hat shopping!

Anyway, shivering here in the office. Think gonna unpack winter clothes tonight

pics of my declining hair - going, going, almost gone

MESSY HAIR LOSS (taken either on day 3 or 4 of hair loss which started exactly two weeks after my first chemo treatment)





BALDING SIDE PATCH EXPOSED WHEN PURPOSEFULLY PUSH HAIR ASIDE (taken on Friday February 20, day three of hair loss)



BALDING SIDE PATCH EXPOSED WHEN PURPOSEFULLY PUSH HAIR ASIDE (taken on Friday February 20, day three of hair loss)



AND NOW STUBBLE WITH BALD PATCHES (taken on Friday February 27, six days since I shaved my head and 10 days since it first started falling out)

something i never thought about

Got the expected double take on the escalator when I went to work today with a cap - but clearly no hair underneath (had it shaved off on Saturday after the chemo hair loss became an uncontrollable mess).

Was less expectant of having to explain the cancer all over again. Had one oke - and I mean "oke" - wiping his eyes after he innocently exlaimed "Oh, you cut your hair" and I blurted out the facts, a bit too harshly I realised and then called him over to chat more.

I am enjoying writing this blog, both for me and for other's reactions and to see the stats from where in the world people are logging into it, and obviously there are times it helps to talk about what I am feeling and experiencing (is there a difference between those two? I think so) but honestly, I cannot keep talking about when I knew, how it happened etc etc. That is why I mostly don't take calls from well-meaning people. It becomes and on-going, never-ending discussion which stops me from just getting on with things. There was a time when I had three phone calls before I even reached the office.

And just to think, tomorrow is the day more people start their work week as they work as Tuesday to Saturday shift; it might be even worse. Oh well. I am sure by the end of the week it will wear off. Oh and I don't blame people for wanting to know, but I do not wish to shock people as much as I did that guy at work today. I gotta be more gentle.

henna tattoes on a bald head

Have heard about this - instead of covering the bald head caused by chemo, have a henna tattoo painted on. One friend thinks it's gross and the truth is, I couldn't do it now anyway as have stubble on most of my head where the hair had not yet fallen out.

But what ya think?

http://empressoftheuniverse.blogspot.com/2006/11/my-new-canvas-ronis-bald-head.html

still have stubble - dealing with the effects of shaving head

Checked with Carlos, my dear friend and hairdresser this morning. The reason I still have black stubble over most of my head - only the sides are bald - is because that hair has not fallen out yet. It is just shaved. But he reckons it will fall out soon. He said my hair was falling out as he started working with it. He started giving me a number 1 or whatever it is called then swopped within seconds to shaving it. Oh he said the sides are bald cos I obviously sleep on my side which rubs against the pillow.

And my friend said that when he was sweeping his dining room floor this morning, he found himself sweeping up masses of my hair.

Think I have soft-optioned the effect of shaving off my hair by not going out much today - only to the veggie shop and then was not alone. In fact, have not been out alone since my hair is gone so if don't go out tonight (which would not be alone anyway), the first time I do so will be tomorrow - to work. Oh goodness, one part of me feels all tense about it, the other part is what the fak, who cares, if anyone has a problem it's their problem, but think some people might get a fright. Oh well they will get over it, I guess.

Honestly, for me the worst part of the chemo so far is the stomach side-effects which are still not sorted and probably won't be until it's all over.

Dunno if it is worth forcing myself to go out tonight. To a restaurant. But cannot become a recluse. Oh that is unlikely, what with a dinner party and two nights of Dance Umbrella shows this week.

For more info on Dance Umbrella, see www.artslink.co.za

more on the big shave

Forgot to mention: Shaving all my hair off, four days after it first started to fall out, was sore. My scalp is super sensitive which I first noticed last night when I stood outside trying to shake off the loose hair by simply running my hands through my hair, and had to stop 'cos it was so sore.

Guess it's not natural for your hair to fall out like this and that's why the scalp is sore. Now wearing a silk scarf and it's wonderfully soft so not sure if my scalp is still sore but I doubt it.

As much as it's ghastly to be bald, think I made the right move as it was inevitable and I only pre-empted it by a few days. Also, read on a forum somewhere people questioning whether whether or not it was better to cut one's hair super short before it started falling out from chemo. It definately was. My hair was short to begin with, cropped it even more and it was better as the pieces which fell out weren't too long.

Now been looking at ways to tie an African-style turban and believe it or not, found a reference on the web: http://www.kangausa.com/tie,traditionalheadwrap.htm and http://www.kangausa.com/tie,backtwistturban.htm

Think a headscarf might be even better than a hat or cap - you cannot see you are bald as it covers the whole head without exposing bald back and sides.

the big shave

Shaved off all my hair this morning. It was becoming truly ummanageable, falling out uncontrollably but strand by strand. Think it would have taken at least two more days to fall out, if not more, and by then I would have been swimming in hair. By the time I left home this morning, I had hair on my neck, hair on my back and....
Had scheduled an appointment with Carlos for 4pm but really thought I would probably postpone it for Monday or possibly even Tuesday. Then decided it was getting outta control so phoned him and made it earlier. Then fetched my friend Craig and we dashed off to the Standard Bank Gallery to see Johannes Phokela's exhibition before dashing back up to Athol Square and my beloved Carlos.
I grimaced as he shaved it off. But did not look too much. "Are you going to shave stripes?" asked the hairdresser next to him. "I wish," I said, "but I can't; it's all going to fall out anyway". Then Carlos washed it (my scalp really) to get the loose bits of hair off. Then he just touched it with a towel and I put my cap back on.
I think it looks revolting but I am kinda dealing with it. Bumped into David Tlale at Gallery Momo and the first thing he said to me is: "Did you cut your hair?" So ja, it is very noticeable. Monna from the gallery asked me if I was being serious when I told him I had cancer - he is not the first person to say this; I think people don't expect someone to be sick if they seem so well and are animated and so so. Dunno, cos why would someone lie/joke about having cancer?
Anyway, think it might be hard going around with without hair - even with a hat on it's obvious - but gonna find out different ways to tie scarves (wearing one now and it is super comfortable especially if it is silk, and keep echoing what Edwin Cameron said (see Thursday February 19's posting, even if it was in a different context): "Get over it!" So those of you who cannot handle it, and those who are semi or utterly avoiding me because I have cancer, or find it more difficult to deal with me than I do (the subject for another blog): "Fakking get over it!"

not quite sure what to do

Wore a cap all day today. Taken it off and now if I just brush my hand over my hair, it is falling out. In droves but not clumps, still strand by strand. Not quite sure what to do. Stand over the basin and clog it up? Surely will clog the toilet too. The bin? Oh this is revolting. It must just go now. Sure it will almost all be gone after a bath tomorrow.

what you don't get told about chemo hair loss

Maybe it is different for everyone, but had no idea what a messy business this chemo hair loss is.
My hair is everywhere. "You need one of those canteen worker's plastic caps!" said someone. And it's true. Anyone got one for me? Even today, when I am wearing a cap for that very 'plastic cap' purpose, there is hair everywhere, even on the telephone on my desk which is an arm's length away.
Have booked an appointment with darling Carlos for 4pm tomorrow to shave it all off but might postpone it till Monday depending on how much has fallen out.
"Cos that's the other thing I did not know. How slowly it falls out. It's been falling out since Wednesday, strand by strand, making a mess. This morning still had a full head of hair but with thinning patches on each side on the top. Oh and generally it was thinner but would have been happy to walk around like that, but donned the cap - a black one - to avoid moulting over everything!!!!

the fall-out

Who ever said that your hair doesn't just fall out is wrong. These pictures - CLICK ON THEM TO MAKE THEM LARGER - were taken at work today, day two of my chemo hair loss and 15 days since my first AC chemo treatment for breast cancer.
My hair was everywhere - on my desk, on my clothes, falling into my eyes and, if I ran my fingers through my hair, in my fingers. Yet it is all taking place so slowly. Still have hair on my head and only if you look closely, can you see slight thinning patches. But the fall-out is becoming a nuisance. And obvious. Hardly the unobtrusive event I was told.
PICTURES: KATHERINE MUICK-MERE

body awareness

If today has proved one thing to me -ja, I know this is my fifth posting of the day - it is that I am hyper body aware. One surgeon told me that not many women would have been so astute as to feel the lump I felt below my armpit.
And I felt my hair falling out from the first strand. Now, it is just over seven hours later and I still have a full head of hair but it is falling out, just slowly, and think if I touch it, it will start falling out.
It is now becoming super itchy too which is what I was told happens before it falls out in clumps.
Hope tomorrow is not going to be too traumatic but going to handle it whatever. One thing I know for sure, no matter what happens to my hair before 9am and worktime, gonna wear a hat.
Someone just remarked that this whole blog is about losing my hair but for me that is the one things which makes it so public, that makes everybody know that I have cancer. Without that, could keep it more private.

it's hairraising

Had a good laugh when leaving work, someone said: "Have a good night". "Think it's going to be hairraising - literally," I replied. lol
This is my fourth posting of the day. Often wonder if anyone reads this but what I am realising is that talking about things helps. Was on my own when realised my hair was falling out. Felt very upset. Felt vulnerable.
Now am neutral. It's fine 'cos put it on facebook and chatted to quite a few people about it. It's not a surprise and it feels ok but am conscious of the fact that have decided to forego two art exhibition openings tomorrow night to go the launch of 2009 Drama for Life at the Wits Theatre - alone. My hair will then either be going, going, going or even gone. Will be wearing one of my caps - now wanna buy more - but hopefully it will be ok. Will I need a supportive ally? Maybe. Ideally. But should/must manage.
This is my fourth posting of the day, and there might be more.

being a drama queen

Look, my hair is not exactly falling out in clumps. Well not yet. If i pull on it lightly, a few strands come out.
It feels spacey. As if I could wipe my hand across my head and it would all fall out. Kinda tingly.
This is my third posting today but want to document what is happening and how it feels.

it's starting

My hair is starting to fall out. Just a little but it has started. Feel really sad even though I knew it was going to happen.
Had a power failure at work and had to log off. I went home as wanted to collect a few things there anyway. Lay on my bed and watched "Cooked' on TV. Saw one hair on the white duvet cover. Then put my hands through my hair and about two strands fell out. Then a few more fell out when I ran my hands through my hair back at the office now.
It is exactly two weeks since I had my first AC chemo treatment for breast cancer.

still waiting

Still waiting for my hair to fall out. Two people said it would fall out today, ie, 10 days from first chemo treatment, but not to be.
So wanted the bulk of the fall-out to happen over the weekend rather than at work but guess there is always tomorrow, Sunday.
Feel about the pending hair loss like I felt about the chemo; want it to start so I can get on with dealing with it.