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Wednesday, September 29, 2010

Responses, Diary Update, Seizures, Hair

Responses to blog entries
How good to see some responses to various bits of this blog! But I can see I may fall into what is for me an almost irresistible trap – wanting to reply to every response! I’ll try to discipline myself on that…. or at least limit myself to a sentence or two max. But your responses will be an indication of what interests people most and that helps. I hope no-one took too seriously my wee story. Never let the truth interfere with a good yarn!

Diary update
I’ve decided to keep these really brief and people can tease out details in comments if they want. Tracey continues to recover from her surgery but it’s a slow process [not quite as slow as donating a kidney though –that took over 2 years]. My blood pressure seems variable and I need to watch this as I’m not too keen on the prospect of stroke or a coronary.

I am now pretty familiar with the sensations that precede a seizure after dealing with them for close to 10 months. Last night I had all these sensations plus mood swings, but we quickly put the arm in its sling and I did what I do mentally to deal with seizures. Though I am certain the damaged part of my motor centre wanted to play havoc with my right side, it didn’t happen. That's a win in my book, and a big one. It’s exactly 3 weeks today since the last one. Fingers crossed.

I don’t know why, but keeping my hair is a bit of an obsession with me. Vanity? Probably. Maybe because it’s so much part of identity. Anyway, it keeps fighting back. I thought I was going to lose it all under IV chemotherapy, but it just got thinner and thinner [and the back of my neck got colder and colder] and now is a rather strange but visible covering just about everywhere it should be, except where my skull was blasted by radiotherapy earlier in the year and never grew back. But if I’m going to lose it, why not on my face, and save shaving? It is an luxuriant there as ever. Play fair now….


  1. Obviously the recent fashion for men shaving their heads has no appeal for you! Good thing too - it's a hideous fashion and quite incomprehensible why sometimes good-looking men would render themselves so hideous! And go to all the trouble of shaving their heads regularly, too!

  2. Also, I'd be interested to know what exactly your seizure warnings and symptoms are. This I think was your first intimation of the Unwelcome Stranger...did you realise immediately it was something serious? And how do you mentally deal with it?

  3. Julie: if my hair got really patchy I'd shave the lot rather than look like a mangey poodle! I guess fashion is fashion and there are some young guys who want for some reason to change their image. Having it really short is the way to go for those whose hair has pretty much deserted them rather than the coiled long wispy cowpat on top of the bald area look!
    By sheer coincidence I was just last night starting to write something on that first experience and will go on to talk about my mental approach to seizures. That may answer your questions in a clearer way than a note here. All I will say a this point is that the warning period varies and may be as little as 20 seconds, though Tracey may pick up longer frequency signals over a day that indicate an attack could be on the way.

  4. Re hair: hope you don't mind Denis if I post a few observations based on my experience last year... I found it fascinating how much the oncy & nurses focussed on hair loss before my chemo started, as though it was THE most significant side effect - maybe it is for some people, though for me I'd have to say that neutropenia was a more scary thought! After my 1st chemo when I started to wake up with it up nostrils, in mouth etc my wonderful kids cropped & later gave me a number 2. All through this I felt so happy coz it was a sign the chemo was working! Eventually it was so mangy that I went to a salon & asked lovely Mandy who did my hair on my wedding day many moons ago to get rid of what was left. It was midwinter in the Dale so a tad chilly - friends gave me hats - gorgeous hats - & for the first time ever I didn't hafta worry about hathair! Then I started to get creative with scarves. Interesting family reactions - 1 morning Mum said I shouldn't go out without a scarf coz it looked like I was looking for sympathy! Later that same day my son said he wished I wouldn't wear a scarf coz it made me look like a chemo victim! Funnily enough how I looked was pretty much the last thing on my mind! But I kept wearing scarves coz of the temperature. I remember 1 day I was dressed up in a suit with a scarf on head & a shop person commented positively on how I looked - realized she thought my turban was a fashion statement. It struck me that trackies & no makeup with a scarf meant cancer & corporate wear with scarf equalled fashion. The way people treated me varied so much based on their perception. Also realized that while we are accustomed to seeing people without hair in a hospital setting, there is still a bit of mystery when people wear a scarf - like they might still have some hair & might not be too ill (& therefore not contagious!)... Very funny when I was hospitalized coz I was neutropenic - bald head with black nailpolish (to stop my nails falling off due to chemo) made all the nurses think I was a goth! When a dr had to come up from emergency to get the cannula in coz the nurses couldn't do it - he walked in & said 'good god woman you're as bald as a badger!' to which I replied with fake horror 'o no what's happened get me a mirror quickly!'.. Only time I lost my scarf was rushing to get a flight back from Sydney - unravelled in high wind on Tarmac so I just pulled it off as I boarded. Obviously other passengers were a tad disconcerted & shrank away as well as staring - made me feel like announcing that 1. Cancer isn't contagious & 2. I wasn't gonna die en route to the Dale. Ordered a wig from China on eBay - tres amusing - L mentioned it looked like the cat had taken up residence on my head & Ol remarked 'David Bowie - eat your heart out!' wig only had 1 outting - to Chemo at Dale hosp where all the nurses & half the patients tried it on & we laughed ourselves silly.... Being bald in Sydney having radiotherapy was fabulous coz I felt free to choose whether to cover or not. it was lovely feeling air, sunshine, rain on my skin. By this time I had lost ALL my hair all over my body & I realized that eyelashes & eyebrows have an important practical purpose & I missed them the most. It all began to grow back in Sydney - felt ok except the world wanted to touch it like they do a pregnant woman's belly - like it's public property. It peeved me no end that the witch hairs on my chin grew back before my eyebrows! Now I'm hirsute again & summer is on the horizon I must admit that I do have an urge to shave my head completely again! Denis I hope you don't mind about this rave on YOUR blog... Just so interesting how people react so differently.

  5. Getting back to this, Wendy.... interesting comment. Thank you. I can well understand that neutropenia loomed large and that hair loss was insignificant by comparison. Yet I know one dear friend who after going through complete hair loss and growing back her lovely hair declared that she would not go through chemotherapy again if it meant hair loss. [She thought she was in this position but fortunately another bout of chemotherapy for her did not make her hair fall out.] So it's big bickies for some people. It seems to me that women do have more options than men if they decide to disguise their baldness or patchiness of hair. I feel a right berk in most head coverings [I would NOT attempt a wig!] no matter what they are, Radiotherapy did the most damage for me in terms of hair loss, not chemotherapy. The problem for women is that identification with disease that comes with headscarves or coverings, and as you say, the belief by other people, especially women, that your body is public property if they suspect you are having cancer treatment. [Maybe complete burqa would be worth trying!] I feel self conscious about craniotomy scars and humps and bumps on my scalp from things that happened in the past. Now I am amazed to find that though my hair is thin and has greyed a lot, and Tracey had to do a severe haircut on it last night to make it look more respectable, my hair has actually weathered all forms of chemotherapy - and I still have more hair than my good friends Neil and Bruce! So I'm a bit precious about my hair, unlike you, and I rather wish I could feel that it makes no difference to my sense of identity. It does.


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