Breast Cancer Survivor: “Chantal’s” Story

12 February 2011

An update from an impatient

Dear Friends, Family and Caring People,

To ease the pressure on poor G [my partner], I felt I must offer an update so you can all stop asking him how I am for a bit. He has been, and is being, the most extraordinary support system for me, for which I am deeply grateful, but he deserves a break now. He’s truly special, that man. For those who know some of this, please forgive the repetition.

I am doing really well. The op was a great success (3 hours instead of the expected 3,5) and both surgeons were delighted with themselves. The reconstructive surgeon had a look at my now-deformed bits immediately post-op and exclaimed that they were ‘very beautiful’. I’m glad he thinks so.

I came home on Tuesday and it was so fabulous to be able to sit in my garden and not have someone poking or prodding or fiddling with me every five minutes. No offense to the terrific nursing staff at [the hospital], but hospitals are exhausting. Plus, I was constantly in trouble for opening the window instead of using the aircon, and received little sympathy when I was savaged by mozzies on Sunday night. I think one arrived, had a sip, and called all its mates to come share the delicious drug-pub on offer. I’ve also now had two good nights of sleep, the first in quite a while.

My drains came out today, which is such a liberation. Carrying around little plastic containers of your own body fluid is neither dignified nor fun and rather limits your mobility. The physio is hard because I’m still very sore, particularly on the right side where a nerve is being pinched, but if I don’t do it I will battle later. The arm movement takes a beating because they cut through so many nerves. I managed to blow dry my hair yesterday, an awkward and long process with a far from perfect result. G was elated. He gets very worried about me when bad hair is not an issue :-).

Emotionally I’m also feeling strong. I have not had any of the drastic downers I was told to expect. The odd bit of weepiness does hit me every now and then but it doesn’t last for long. I’m hoping that this bodes well for future coping with the chemo. I know it’s early days, so let’s see

My pathology results came back yesterday and there was more cancer in the right breast, but removed with ‘large margins’ {of healthy tissue around it} as the surgeon puts it, which is excellent news. It also validates my decision to have the mastectomy completely. I feel almost hysterically grateful that I’ve got rid of this creeping threat early, and blessed to be given the chance to beat it.

So, all in all, it gets better every hour of every day.

The next step is getting used to my rather massacred chest until after chemo when they can finish the reconstruction. Going from a D cup to an odd-shaped A (that A is courtesy of my ‘chest expanders’ which will slowly stretch the skin to allow for implants later) is a weird feeling, and it looks pretty hideous right now. But it’s temporary, and I will be finding a way to look normal when I am out and about.

Thank you to those who were ‘allowed’ to visit me in hospital for doing so and cheering me up enormously, to those who had the EQ to leave me alone (that much-needed space was appreciated), and to every single one of you for the extraordinary outpouring of caring, concern, offers of help, and incredible help already given. I’m feeling quite overwhelmed.

I’m still not really up for many visitors right now, but will let you know when I am. Soon, I’m sure. G says I’m being an ‘impatient’ as per the header of this mail. Not surprising to any of you, I know.

I’ve been receiving daily ‘notes from the universe’  <http://www.tut.com> which are incredibly inspiring and great fun. Here’s today’s, auspicious for me right now I think:

“Sadness, illness, and despair, are less conditions than they are decisions – to see yourself as less than you really are. Good thing that’s all, huh, ‘Chantal’?
Yours, The Universe”

Thank you again, all you very wonderful people.

Love, C

*******

 

09 March 2011

Impatient update #2

Dear All,

So many people have been asking how I’m doing – thank you for caring – that I think it’s time for another update.

It’s now close to five weeks since my op and I’m feeling so much better. The body is pretty amazing, the way it heals. The next part of this journey is one I’m not looking forward to, but more about that later.

My biggest issue when I decided it was time to lose the PJs was what to wear. My dear friends all either shopped or raided their wardrobes on my behalf, and G scampered through Cavendishm for me, fingering lingerie and urging every female shop assistant to book a mammogram immediately! Thank you, special people.

This cancer thing seems to be an epidemic, with both a close colleague of ours and an associate of G’s having been diagnosed with one sort or another in the past few weeks. If I could ask all of you for only one more thing, it would be to please be sure to have checkups and screenings regularly. If I hadn’t had mine in December it would have been much harder for me. It’s so important to catch stuff in time and age increases the chances of something cropping up. Please take care.

As G drily remarked last week as we successfully negotiated our way through the maze of corridors at Vincent Pallotti from a different direction than usual: “We once knew Long Street, now we know Pallotti and Constantiaberg Hospitals”.

After my last mail I developed a bacterial skin infection that I ignored for too long and which needed vicious doses of penicillin to clear. Since I was out in [the small town of] Riebeekkasteel at the time, when I finally decided it wasn’t going away, my surgeon had to diagnose the problem via a cell phone pic which I mailed. iPhones have their uses!

The consequence was that I couldn’t have my first ‘expansion’ as planned a few days later. For those who are confused about this process, here’s how it works. I have ‘expanders’ under the skin which are basically plastic bags (very hi-tec ones, mind) that are filled with saline via syringe over an extended period. This stretches the skin slowly until, as the delightful ‘Dr Smiley’ puts it, “You say, OK Shane, that’s big enough”. Then it’s surgery again to remove the expanders and insert proper implants. The expanders sit against my chest muscles and are most uncomfortable (they make for some very bizarre sensations while driving) but are necessary means to an end. G says if he puts his head on my chest he can hear me creaking like an old gomma-gomma chair.

I did have that first expansion a week later, a whole two tablespoons on each side. It doesn’t sound like much, but that tiny bit of saline made all the difference to me. I could actually see it filling out my concave bits ever so slightly, a totally marvellous indication of a more normal shape to come.

Sadly, this will be a slow process since I cannot have the final surgery until two months after my next step is over, which brings me to the chemo.

My oncologist laid out some facts and figures, using a remarkable professional online resource which produces graphs and percentages according to the specific age, cancer stage and type, and general health of the patient. If I go for both recommended treatments, hormone therapy and chemotherapy, my chances of being alive in ten years increase from 84% to 91%. And my chances of not having cancer pop up somewhere else in my body in ten years time increase from 66% to 84%.

Those figures did it for me. Chemo is a dreadful and very damaging procedure but I cannot turn down this opportunity to give myself the best chance of zapping any cancer cells that may be lurking. In addition, the hormone therapy (generally a five-year course prescribed for oestrogen-receptive cancers) is apparently ghastly as it strips all oestrogen out of the body, putting one straight into full-blown menopause. Some women decide they cannot handle the side-effects and stop taking it. Should I be one of them, I will still have improved my chances through chemo, keeping the positive percentages higher than they would have been with no treatment at all.

Of course, everyone is different, and statistics cannot allow for that but I have to base a decision on something tangible.

I’ve also been looking at ways to boost my immunity in preparation for this, and have had a few brushes with some rather strange natural recommendations. I’m all for homeopathic, but not when those touting a product as a definite cancer cure urge me to reject chemo in favour of their elixir and cannot give me facts, figures and testimonials. “A certain plant from somewhere in Africa that’s dried in a special way but we can’t mention the name because it’s so successful that the pharmaceutical companies are trying to shut us down” doesn’t do it for me. Call me a cynic. If anyone has any recommendations that have been tried and tested, I’d appreciate input.

The chemo is an 18 week course split into two parts. The first, which is the brutal one, is three treatments, every three weeks. The second is a nine-week course of treatments every week.

There goes the hair. My first infusion of the Red Devil, as it’s referred to, is next week on Thursday the 17th. They tell me the hair starts coming out in clumps about ten days after the first treatment. It’s recommended that you shave it off immediately to minimise the trauma. I went to buy a wig on Monday which is a lot shorter and quite a bit darker than my own hair. The style is called ‘Posh’ as in Spice and is quite a nice cut. It’s not as easy as one would think to just pick the perfect one off the shelf. I’m not sure I’ll be wearing it much but I want to be prepared. It’s difficult for me to put on with all my hair at the moment so G modelled it for me when I brought it home. That was quite a sight. I haven’t laughed that much since December.

The hair thing, I have to say, is probably the worst of this. I think I can handle the other side effects, knowing they’re very temporary, but the hair takes six months to grow back enough to lose the head coverings. And apparently it usually grows out darker and very curly at first, so I’m girding my loins for a new afro. Like my wig on G, I don’t think that look will be a good one for me.

Every step on this journey is another one towards it being over, but I do feel like getting past the hair loss will be the bumpiest bit still ahead. Once that’s happened, it surely cannot get rougher on this road.

Apart from that, I’m in good spirits and am eating a far healthier diet. My brain, however, is still AWOL but it’s been phoning home recently so hopefully will be back soon. I’m battling terribly to concentrate when I work, but the missed deadlines are now a top priority so it cannot be soon enough.

G continues to be a very precious support system. He’s my trellis and I’m clinging on at the moment, but he’s helping me grow stronger every day.

And yes, I’m still being an ‘im’patient but given how quickly the last five weeks have passed, I know it won’t be long before this is over. I asked my oncolgist how I refer to myself post-op, and she said to say “I HAD breast cancer”. So there you go. Better and better.

Thank you for the calls, the sms’s and the mails. I remain overwhelmed by how many people care. I will keep you posted as to progress.

Love, C

           C & G after Shavathon

*******

03 April 2011

Impatient update #3

Dear All,

It’s funny the way the ‘how are you doing?’ messages flood in as I’m about to do my next update. I must have the timing right. I’d hate to be boring anyone with excessive frequency. So much has happened in the past few weeks.

I’m through the first dose of the Red Devil, and as of Tuesday, am a skinhead. Not quite so much of an ‘impatient’ any more though, now that those two steps are over.

G has shaved his head as a sign of solidarity, and says he’ll keep shaving it till mine grows back. I love that. I attach a pic of the two baldies on G’s patio. I’m not quite brave enough to share a front view yet, but I will soon.

I continue to receive fabulous support and help. Except from my neighbour who rather thoughtlessly invited me to join the National Cleavage Day (wear your Wonderbra) event on Facebook. Go figure.

The first chemo two weeks ago did not knock me in any serious way. I’m a little suspicious about that. I believe, however, that the effects are cumulative. But I’m still holding out hope that it really won’t be so bad after all. Yes, I can do this!

The nurses at the Vincent Palotti chemo section are lovely. Professional and practical, but very kind and caring. The room is set up with three groupings of four la-z-boys (I can’t look at them without remembering my dad), each with its drip stand, a side table and a visitor’s chair. There’s an in-house pharmacist to give you your suitcase of anti-nausea drugs when you leave, a few TVs, and tea and coffee on tap. You’re allowed to move around with your stand, but have to keep the drip arm down and remember to unplug it from its power source first. I kept forgetting that bit and got jerked back to reality a lot. The cell phone reception is poor, which is good. Perhaps it’s a conspiracy.

The actual process took over three hours and involved ten different drips, so a lot of swopping of little bags of stuff. The first drip was an anti-nausea (which definitely worked for me), followed by steroids (those had me bouncing off the walls and eating like a horse for two days – more please) and then three different types of chemo drips including the dreaded Red Devil, the one that makes the hair fall out. After each, they use a saline drip to flush the veins before the next one. Thank heavens for the loo right there.

Soon after I got plugged in, a youngish woman wearing a snazzy leopard-print headscarf and huge hoop earrings sashayed in and did a little tango across the room yelling “Today’s my last one!”. That was so inspiring. I can’t wait to get there. Her mom arrived a bit later bearing chocolate cake for all. Bugger the cake. On my last day I’m taking champagne.

I’m always fascinated by synchronicity, so here’s some that I loved. When I saw my oncologist before the chemo, she told me that the woman outside in the waiting room was my ‘twin’ since it was her first chemo day too. I approached her in the chemo section later. It turns out that her name is H-, which floored me just as a start. It’s not a common name, but I have so many H-‘s in my life, each of whom has played a really special role (including my friend of 38 years and more recently, my oncologist’s lovely nursing sister). She had exactly the same op, done right after me on the same day, by the same surgeons, went to the same wig man, and chose the same wig in the same colour. We spent half an hour going: “Really? Me too!”. Amazing.

G took me straight out to Riebeek afterwards, expecting me to spend the next few days hanging over the loo, too ill and weak to eat. He was delighted that his preparations for chicken soup and smoothies came to nought. My appetite was terrific, I had barely any nausea – and when I did, a tablet dealt with that immediately – and I carried on working. The worst is probably the headaches and a bit of fatigue that hits very suddenly, but that is sorted with a lie-down for an hour or two. All totally do-able.

Then came the hair. My Cancer-Twin H- e-mailed to ask if I wanted to join her for a shavathon on Tuesday the 29th. I said yes, then got very icy feet, feeling I couldn’t do it without knowing I really had no choice. Well, the timing was impeccable. I got up on Tuesday morning, ran my hands through my hair, and great clumps came away from my head. Just like that, with a tiny popping sound. I decided that shedding for days was not something I could deal with so kept the appointment.

My friend H- (she of the 38 years) came with me to do the deed. Walking into [the] home salon was like entering the house of doom. We were a little late and C-Twin was already done and having her wig trimmed. That gave me great courage and it really wasn’t so awful. H- took photos and I heard this plaintive “I think I’m going to cry” from behind the camera. That nearly set me off. Anyhow, I was pleased to find out that my head is not a bad shape at all, and discovered a long-forgotten dead-centre scar. I’ll have to tell people it’s from my frontal lobotomy.

Post-shave, I dropped H- at home and stayed for tea, taking my wig off because it’s very hot and quite itchy. My 16 year-old Godson A arrived home from school, and without blinking an eye gave me a hug and said: “You’ve done something to your hair.” I love you too, A.

I saw my reconstruction surgeon two days later for my last expansion before the end of chemo. As he puts it, just enough so you feel happy to be seen, not enough to make you terribly uncomfortable for too long before final surgery. I was wearing a little soft hat loaned by my friend D, and took it off in his office. He looked at me for a long time and said: “That look really brings out your eyes.” I love you too, Sh-.

It’s a very odd look for me, but I feel quite exotic in a way. G keeps kissing the back of my head and telling me he thinks I look beautiful. Obviously he prefers me with hair, but that validation of me being me with or without means such an enormous amount. I love you too, G. So very much.

I went hat/scarf/beanie shopping with my friend S, and think I scared the wits out of some poor woman looking at scarves by exposing myself to try stuff on in front of the mirror. I’ll try not to do that too often. I’ve now been out in Riebeek since Thursday, having had a house-guest from America (M, an old friend of G’s), and am very proud of the fact that I really don’t mind being seen kaalkop [lit. “naked head”]. It’s far more comfortable when I’m not in public. G’s family arrives today for a bit and I hope they don’t mind that I don’t mind.

I test-drove the wig at a local eatery on Friday night, and the proprietor kissed me on the cheek and asked how I was. Not a mention of my new ‘do’. I guess that means it works for me and is not too drastic a change. I couldn’t wait to take it off though, and stripped down in the car. I think I’ll be doing far more hats and scarves than false hair.

However, this is all so temporary. With any luck the hair will start growing again in about eight weeks during the second round of not-so-vicious chemo.

So, things are good. In fact, far better than expected. I’ll keep you posted.

As always, I remain overwhelmed by the caring, the help, the messages and the thoughts. Thank you all.

Love, C

*******

 

10 May 2011

Impatient Update #4

Dear All,

Getting down to this episode has taken some time due to my being temporarily down and out. I’m sorry to say that Joan of Arc here dropped her pennant and sat down snivelling at the side of the road for a bit. Since my last mail I’ve had two chemo sessions, the last of which knocked me sideways.

They really should warn you that session 3 is a near-killer. But I’m fast discovering that doctors cover their rears by being very selective with information. If it works out well they can congratulate you and themselves. If it works out badly, they’re not to blame for telling you it wouldn’t. As the pharmacist in Malmesbury put it to G when he embarked on the second mercy mission in two days: “In my experience, the third one is when they bring you as close to death as possible”. I have no idea if that’s true, but I believe it.

The details of that fall down are too gross to go into, but I will say this: Appreciate your immune systems people! Thank them every day for behaving well and nurture those good flora.

Thankfully, session 3 was the last of the brutal stuff so with any luck it’s onwards and upwards. The next round, which starts in just over a week, involves nine weeks of weekly chemo, but sans the nasty Red Devil. Apparently this treatment (called Anzatax) is much less damaging, though the brochure they gave me has a long list of side-effects that pretty much tally with those of the first lot of treatment. I can but hope.

So I’m now half way through the chemo and back to being more of an Impatient than ever. My oncologist says to blame my impatience (and my occasional rattiness) on the steroids they’re giving me. I blame it on having my hormones taken away. The girls will understand.

In general though, I’m doing really well. I function more-or-less normally and am not lying around in my jammies. The fatigue is still a constant companion, my entire drip arm is incredibly painful where the veins have taken a hit, and much of the hair has finally said ‘cheers’. I still have to shave my head frequently as some bits insist on growing while others are totally bald. If I let it get out of hand, it makes for some interesting velcro moments when I put on and take off headgear. Try pulling a beanie onto a bottlebrush.

I’ve worn the wig very seldom, but had some great compliments when I have so I hope it forgives me for speaking ill of it to others. My vet said: “Great new haircut” so I told him it was done in China. I wore it to Woolies recently and was crouching down to rifle through the camembert when a staff member stepped backwards into me. She put her hand on my head and ruffled my ‘hair’ with a “Sorry dear.” Aarggh! Don’t touch me on my wig! It could come off.

But it’s not just the hair on the head. It falls out everywhere … sorry, I’ll give you a moment to cope with that rather bizarre mental picture.

We spend so much of our lives shaving and waxing and plucking and depilating and lasering unwanted hair but we seldom appreciate that some of it still has the practical function that it did in prehistoric times. Nose hairs are an essential filter and not having any makes for a constant and most annoying sniffle. Eyebrows are perspiration barriers so thank heavens I’m not lumbering around the desert because I have barely any of those left either. The lashes are thinning too, which makes putting on mascara a challenge as I sweep around with the brush hoping to hit one every few yards or so. I was totally determined that I wouldn’t lose the lashes and brows, but alas. I guess you can’t fight medical science.

Apparently (I’m getting to loathe that word) if I’m lucky, the hair will start growing back during the next batch of chemo. Whether that means more will fall out before it does begin to sprout, I have no idea. Apparently, everyone’s response is different, so apparently no-one’s saying. Seems to me (as with the reaction to the third chemo) one could do a gallup poll and at least come up with some statistics to guide patients. As in ‘you have a 30% chance of not going totally bald’. But what do I know. I’m not a doctor, just a communicator.

Possibly the worst of the side-effects though is the lack of cognitive functioning. G’s been teasing me about the really stupid things I’ve been doing lately, jokingly calling me ‘chemo-brain’. I mentioned my mental dysfunction to my oncologist and she said: “Yes, it’s called {wait for it …} chemo-brain. Perfectly normal. It comes back … eventually”. So I googled it and there it was. 694 000 matches. It’s real. God help those around me. I hope people still love me after who knows how long of behaving like a vegetable. There is an upside. I’ve noted an excessive use of ‘so’, ‘very’ and a few other words in my updates. I print them out for my mom after sending as she’s not on e-mail and find myself having to edit before I do. It’s not me. It’s my chemo-brain.

On a different topic, I had some very sad news right after my last mail. Dr John Marr, the specialist surgeon who removed my lump in December, had to tell me I had cancer, and did the mastectomy in February, has untreatable pancreatic cancer himself and not much time left. He’s in his mid forties, a gorgeous-looking, tee-totalling fitness junkie, and the most caring healer. He twice called me after nine at night to give me pathology results because he knew I’d want to know as soon as he’d seen them. It was he who first spoke to me about mastectomy and somehow removed the horror of that necessity because of his manner. I recall sitting in his office after my first op, looking at the pics of his wife and children playing on the beach, and wondering what it was like to be so blessed while having to tell patients about their possible termination. There’s no point wondering why, but it puts my very manageable situation into crisp perspective. I feel blessed to have had him as my doctor when I did.

Another thing that makes me grateful every day is watching what my C-Twin H- is having to deal with. She had ongoing infection that required her one expander to be removed until after chemo, delaying the entire reconstruction process for quite a while. On top of that, she also has to cope with five weeks of daily radiation after chemo since her cancer had spread to the lymph nodes. Through all this she remains totally upbeat and incredibly cheerful. Our frequent mails help to keep me going and she’s always chirpy and funny in response to any whines I have.

I am constantly reminded how lucky I am, and how much better off than so many people battling this terrible disease, in small ways and huge ones.

Speaking of lucky, almost every day someone does me some extraordinary kindness, usually unbidden and unsolicited. Far too many to mention here, but there have been some special efforts that I want to acknowledge. So, at the risk of this sounding like an Oscar acceptance speech, I’d like (in no particular order) to thank:

• My mom: For her love, incredible support, and cooking an entire dinner (from snacks to desert) which she delivered to my home (all the way from Somerset West) for my hosting of book club when I was feeling too tired to cook. I love you so much mom.

• Illa, my Sanlam colleague of many years: For loaning me two cute blonde wigs she wore when battling allergy and moving half the contents of her kitchen and bathroom cupboards to her office so she could type up a list of natural, non-carcinogenic products for me.

• Paul and Catrien: For their beautifully-wrapped box of ‘support’ personally delivered to my door. It was full of carefully labelled goodies, from dried fruit (fibre and energy support) to Goji berries (anti-oxidant support),  ginger (support for possible nausea), chocolate (serotonin support), and my personal favourite, an airline-sized bottle of Famous Grouse (relaxation support). Laughter is the best medicine.

• My sister Carol: For plumbing the depths of her and her friends’ knowledge to provide homeopathic and spiritual support.

• Maria: For a special care package, cupcakes, another wig (sassy red bob!) and lots of other stuff.

• Jackie: For scouring London for nice easy-to-wear scarves and then ordering some off a website to bring back when she couldn’t find any.

• Kay, G’s sister M’s mom-in-law: For buying me a ready-tie headscarf (you cannot get them here) and giving it to M who posted it all the way from Australia. I’ve never met Kay. The incredible kindness of almost-strangers.

• Sara: For the amazing massage. So needed, and so appreciated.

• Ingrid: For the incredibly generous spoil-yourself-at-a-spa voucher which I still have to take up. Soon, I promise. And for inspiring me via http://www.alieofthemind.com/ (read it, it’s special) to risk introducing some heartfelt profanity into my updates. Shock warning! I may soon.

• Shirley: For always popping in to see me at chemo and cheering me up enormously.

• Heather and Deb: For more than I can list, but also for sitting with me at chemo 3 and suffering the Royal Wedding on a tiny screen in a room full of patients and drips!

• Aletta: For the boerekos, the caring and a lot to do with work and patience that shall go unspecified.

• Pieter K: For my financial assistance. You’re the menschest mensch I know.

• Minna: For taking, and sharing, that pic of G and I on his patio attached to last mail that so many people loved.

• Anneliese: For the book posted down, the hand-knitted beanie, and the caring.

• Murray: For the book. It’s a bible to me.

• Annie: For the book (a great laugh) and the suitcase of DVDs to see me through down-time.

• Mara: For posting me a very special book from Joburg that meant a lot to her.

• R: For offering a free self-hypnosis session to help me through the chemo, which I’ve never taken up. It’s far from over, and I will.

• C-Twin H-: For going through this with me in the closest way possible and offering to make me some funky head coverings.

• Michelle, Eric and Gary: For shaving their heads in my honour! You all made me weep.

I KNOW I’ve left someone out.  Chemo-brain. Everyone’s been amazing in one way or another. Of course, it almost goes without saying that the person I have to thank the most is G. He’s being beloved, best friend, shopper, cook, bottle-washer, nanny, nurse and rock, all rolled into one. He’s borne the brunt of my neediness since December. I will find a way to give that back, but heaven knows how.

I’ve decided to be very brave and take pics of the baldie from the front. Actually, it’s the bravery of others that motivates me. M- (my surrogate daughter), her brother E, and my bud Ga- all wielded the razor on my behalf.

Love, C

*******

 

21 June 2011

Impatient Update #5

Dear All,

I’ve been tardy in getting out this update because I felt there wasn’t much to say. With the weekly chemo, life at the moment seems to be just treatment, after blood test, after treatment, after blood test, after treatment …

But now there is. Please excuse me while I break all my netiquette rules by shouting and using excessive punctuation: THE HAIR HAS STARTED GROWING AGAIN!!!

Not much, but enough to show me that I am getting around that final corner of my chemo, albeit on two wheels and listing quite dangerously at times. That slightly out-of-control feeling reminds me of being little, and in a go-kart hurtling down some slope with only the vaguest idea of how to steer. I generally ended up with seriously skinned and bloodied bits, but I’ve obviously learned something in the past 40-something years. I’m leaning into the curve and managing to stay vertical. As of last Friday, only one month left to go. The end is in sight.

That lack of control has a lot to do with the chemo itself, and a little to do with getting to a point in the process where I’m battling to find the reserves for that last push. Despite the fact that it’s eased up the toxic grip on my follicles, this round of treatment is not great. It’s undoubtedly less damaging in general, but with only a week between each of the nine treatments it tends to knock me again when I’ve barely recovered from the previous one. I definitely feel that it’s accumulated in my system over the past three months and is making me feel quite out of my skin and disconnected.

So my tank is rather empty at the moment, despite being indulged by everyone. The upside is being allowed to get away with all sorts of stuff, like scarfing the last piece of chocolate at book club. Thanks Girls!

What also flattened me a bit recently was the death of my surgeon Dr John Marr. I mentioned his sudden and virulent pancreatic cancer in a previous update. He died on the morning of 28 May, just nine weeks after diagnosis. I was kept informed and knew his time was short, but it seemed so appallingly quick. As I said last time, it puts my very do-able situation into such clear perspective.

But back to the hair. My lashes and eyebrows are coming back, and the hair on my head is sprouting. Unfortunately, the head hair is only making its very valiant attempts in patches. I’ve stopped shaving it and will see what happens. What is there is such different lengths that I can see myself having to go to G’s little Muslim barbershop at some point and asking for a Number 2 to even it all out. That will be a first for them, I’m sure. You’ll have to wait to hear about the new colour and texture. So far, quite dark and very fine. The first hairs that appeared were quite pale, which made me think I might end up with a silvery crop. Once I got over the fear of looking gran instead of glam, I quite liked that idea as a temporary experience, but it looks like it’s not to be.

Oddly, I seem to also be growing fine baby down all over. I’m noticing it on my face in particular. The battered follicles overcompensating perhaps? I’m a bigfoot already with my size eights, but maybe I can still become a yeti.

One of the chemo nurses told me not to get too excited since it’s very weak hair that will probably still keep falling out until after treatment. I will get excited though, and I am. She’s the same nurse who asked me how I felt about the hair loss, and I replied that it had been no problem. When I told G that he did his raised-eyebrow thing. He’s right.

I’ve hated losing the hair. It’s made me far less sociable and painfully aware of looking like a cancer victim in public. Those sympathetic smiles from strangers are sometimes harder to bear than the blatant stares. Even worse are the occasional sniggers from (mostly younger) people who obviously think the headgear is an inappropriate attempt at ‘cool’. But as the very German Norbert from my Toastmasters club said in an e-mail: “Rather bald and alive than full of hair and under ground (sic).” So right.

But here’s something interesting that it has done for me. My hair has, for as long as I can remember, been my security blanket. My old varsity friends have never let up over the years on teasing me about the fact that I often missed breakfast or first lectures because I was blow-drying. A bad hair day for me was a literal thing that influenced my mood enormously. Pathetic really. Now, I’ve literally and metaphorically been stripped bare of my protection. For the first time in my life, I’ve grown accustomed to my face, as it is, with no adornment. It’s been a lesson in self-acceptance that nothing else could have triggered, and I’m grateful for that.

Strangely, I remain the only woman at chemo who takes off her covering and sits there, queen of the shiny orb, every week. The others wear wigs and scarves and hats. I can’t quite figure that one out. If you can’t be comfortably bald in that environment, where can you?

Speaking of the chemo room, I’ve made some interesting acquaintances. A senior buyer from Woolies (a hat lady) and a physiotherapist (a wig lady) have become my little coffee-klatsch on Friday mornings. Both have largely stopped working for now, courtesy of company HR policy and PPS cover respectively. Last week’s conversation turned to the benefits of being able to spend more time with their respective husbands and children and because of the circumstances. One actually said: “I’m quite enjoying this,” and the other chimed in with: “Me too”. Jeez. What does that say about the way we devote our too-short lives to work? Makes you think.

Another chemo-buddy (who’s now finished and undergoing radiation) was the recipient of a pair of ‘boobs’ I bought in February, expensive silicone prostheses that I ordered when desperate about my flat chest, forgetting how temporary that was to be. I can be a creature of impulse and instant gratification. I wore them once before my gradual expansions made them turn me into Pamela Andersen. I thought I’d give them to the Breast Clinic at Groote Schuur. Then at chemo I met a woman who said she’d never been offered the possibility of reconstruction, but I got the strong impression that she simply can’t afford it. Medical aid pays very little of the actual cost, as they see reconstruction as ‘cosmetic’. The week after I gave them to her she came into chemo beaming about how much better she now felt about being at work and in public. As thanks, she gave me a massive bottle of perfume. It was nice to be able to do something for someone else.

When this is over, I will be doing something practical for cancer patients. I’m not sure what just yet, but there is a huge need, particularly when it comes to those who don’t have medical aid and the benefit of the best treatment and doctors.

In other news, the chemo-brain persists but work continues. G had to face my ire recently when he commented on my lack of usual creativity (actually it was one of those Girl things that I started: “Does my brain look stupid in this?”) but he remains my staunchest support. I know he’s also battling during this almost-there phase, but we’ll make it.

As always, thank you for the mails, the thoughts, the prayers and the ongoing support. Hopefully, my next update will be to say that chemo is done, after which I can turn some stomachs with a graphic descriptions of my reconstruction surgery and recovery :-).

I’ll leave you with a bit of appropriate profanity. A T-shit [“F- Cancer!”] will soon be winging its way to me from the US, courtesy of a friend of my C-Twin H-. My mom doubts I’ll wear it. Watch me!

Love, C

*******

 

5 September 2011

Impatient Update #6

Dear All,

In the more than two months since my last update, a great deal has happened. I finished chemo, got annoyingly ill, grew some hair and managed a short holiday. Oh yes … and G had a heart attack and landed up in ICU.

I know this year has all been about me, me, me, but he really didn’t have to go to such extremes to get a break from his nurse’s uniform. It was horrible to watch him hooked up to drips and machines and feel that terrible fear and anxiety. He’s fine, although has to take it easy, and is enormously lucky, the doctors say. His standard response to concerns afterwards was a Monty Pythonesque: “It was just a flesh wound”. That Scottish forbearance, which is so typical of his character.

He glanced at my first draft of this update and was horrified that I devoted seven paragraphs to his ‘little incident’, but hey, this is my mail G!

By the time they booked him into ICU at Vincent Pallotti, it seems he had already had one heart attack and probably ongoing smaller ones for another day and a half. He was alone in Riebeek when the first one happened in the wee hours, and drove himself to Malmesbury Hospital with terrible chest pains. Once an ECG had identified that he wasn’t dying at that precise moment, he checked himself out, drove back to Riebeek to deal with a new alarm installation later that morning, waited to catch the-cat-that-prefers-the-country, and then drove himself back to Cape Town in the late afternoon.

After another night of awful pains, he finally saw our GP early on the Friday morning, and a blood test confirmed a heart attack. The cardiologist he was sent to told him to get to intensive care post-haste, preferably in an ambulance. Not G. He insisted on coming back to the office to leave our production in good order for me to deal with in his absence. That Scottish thing again.

When we got to the hospital and sought directions to the ICU ward, a delightful male nurse called Craig took us up in the lift and asked who the patient was. When I pointed to G, his eyes nearly popped out of his head. “WHY are you WALKING?”

In my defense, I did offer/nag/plead/try to insist on all kinds of assistance, but he kept saying: “I’m fine, feeling much better.” Lesson learnt. Heaven forbid there would ever be a next time, but I think I would stun him with the frying pan and call 107.

His angiogram showed two obstructed arteries, too small for stents, so they kept him in ICU for the next two days to flush them out with the equivalent of Rattex. The drug apparently gives you a headache the size of Alaska, and he looked and felt terrible. He was home on Sunday, a little frail but decidedly alive. Apparently his heart is in good shape considering, and it could have been so much worse. He now faces daily meds for life. A small price to pay.

His weight, blood pressure and cholesterol are fine, so the big culprit has to be smoking, combined with stress. Let’s not go there. Suffice to say he’s cut down drastically in the fight to give up, and is rolling his own (no chemicals, hard work to make and keep alight) that look suspiciously like spliffs. And yes, he knows. We know. No nagging please. We tried a hypnotherapist who fired us before the second session. I’m not going there either, right now.

What a bloody year. Matching Zimmer frames next?

OK, that’s enough about G, so on to me.

I finished chemo on the 15th of July and I was dismayed to find it was the most depressing anticlimax. I said in an early update that I would be taking champagne, but felt nothing like celebrating. I’m certainly not alone in that. I watched a chemo buddy who finished two weeks ahead of me weeping in her chair on her last day, for no apparent reason. I fully understood when my turn came.

My amateur psychology skills tell me it may have to do with a feeling of helplessness. What follows cancer diagnosis is pure adrenaline for a bit, then coping with treatment. You’re taking action, and your entire being is absorbed in getting through it all. Post-treatment is inaction. It’s: “What now?” There’s nothing more you can really do, apart from trying to live healthily, and praying that you’ve zapped all the bad cells and that it never comes back. It’s a whole new prognosis of now being a ‘survivor’ with all that implies, and it’s pretty daunting.

I did expect some kind of frequent testing in the future, but apparently, in my situation, there’s nothing left to test for. There’s no catch-all test for cancer cells of every type, so I have to see the oncologist every six months and she’ll keep an eye on my general health. We’ll test if something specific sounds a warning.

One of the things that frustrated me most after chemo was very well-meaning people assuming that the last session marked instant wellness. Not so. As C-Twin Heather put it in an e-mail: “Do you find that everybody seems to think – ‘Wow, you are all better now!’? Noooooo … hell no … after 12 sessions of chemo I am depleted!” I got that entirely.

I think that depletion is what resulted in the worst flu I’ve had in a decade flooring me for weeks, right after chemo ended. I started feeling ill before my last session but managed to fend it off since nothing on earth was going to stop me finishing treatment as planned. Maybe the bed time was needed.

Now though, six weeks down the line, I can feel my energy levels rising, but I’m decidedly not back to my old self yet. I am, however, recovering better than others I talk to, most of whom are now dealing with six weeks of radiotherapy as well. I am so grateful I don’t have to go through that.

My next step will be final reconstruction surgery in early October when they take my creaky ‘expanders’ out and give me proper prostheses. I never thought I’d look forward to surgery. Miss Gomma-Gomma can finally, as as G put it, swop her airbags for something better. It’s been a dreadfully uncomfortable past seven months. That said though, I still do not regret my decision to go the whole hog with mastectomy for one second.

I have also just started medication called Tamoxifen, which I am supposed to be on for five years. It strips all the oestrogen out of the system and apparently reduces the possibility of any hormone-receptive cancer coming back quite substantially. I’ve been dreading this since it will essentially fling me into full-blown menopause almost overnight. I have visions of being a snarly fat woman from hell, having hot flashes and wild rages and throwing plates around the kitchen. Like PMT on steroids. Poor G. Hopefully not, but I have to give it a try.

And then there’s the hair, which is growing really well, but is baby soft. G thought that my last update was a bit too hair-focused, but it’s such a huge thing. If Andre Agassi could be so neurotic about being bald that he played Wimbledon in a bushy frosted wig, then my vanity pales by comparison. That’s true by the way – I highly recommend his fascinating (ghost-written) autobiography ‘Open’, even if you’re a tennis ignoramus like me.

My hair has gone from “something out of Blade Runner” (G) to “Très élégant” (my beloved friend Deb) to “Boksburg ‘sidies’” (G again) to “Cheeky” (my friend Shirley). Right now it’s creeping over my ears and curling uncontrollably, which is not a brilliant look. Something like the baby from Hi and Lois, except she’s 1 and I’m 51. I’m torn between neatening it up and leaving it alone so I can get through the inevitable mullet that comes with growing short hair out as soon as possible. I’m totally grey, which I never was before – darker at the back and sides and paler on top. I am now going public bare-headed and I know I scare the Constantia Village shoppers, but I don’t care. It’s such a liberation. The wig is dead, long live the wig!

While the head hair is behaving like a weed, the lashes have been troublesome. Half of them (bizarrely, only the top ones) have fallen out all over again. I googled it and it’s not uncommon. One woman wailed on a message board: “Why can’t it be the hair on my legs?” I’m with her.

G and I managed our first little holiday in over a year a few weeks back. I almost cancelled when he was admitted to hospital, but his doctor said a rest would be a good thing. We spent five days in a gorgeous cottage on a working farm in the Cederberg, and it was sublime, though of course too short. We did very little, venturing out only to trek up the hillside through the blossoming peach orchards (that flattened G a bit) and wallow in the hot springs at Citrusdal. Mostly we read, lounged around like lizards and worked on turning the farm Labrador into a blimp by feeding her all our leftovers. I also made my first ever ciabatta from scratch (it takes two days), and I’m hooked. The lab liked that too. Baking bread is such a satisfying thing to do when you have the time. If you want to know about a fantastic getaway spot close to Cape Town, mail me for details of Pomegranate Cottage.

I’m still astonished that I managed the bread so well because my chemo brain remains firmly attached to me. I found my portable office phone in the car and my toothpaste in my handbag recently. I hope early dementia has not set in.

To end off on a high note (excuse the boast please) on Friday we won the biggie at the annual SA Publication Forum awards for Contact, the staff newspaper we do for the City of Cape Town – Best Corporate Publication of 2011! G flew to Joburg with our client A-, but I was not feeling up to going this year, so I had to bask in long-distance glory. I am, though delighted, rather surprised. We’ve won it twice in the past but I didn’t expect much this year given our annus horribilis. We haven’t been (as my friend and a Contact contributor P so diplomatically put it) exactly firing on all cylinders.

As always, thank you all for the messages, the concern, and the caring. I’ll write again post-surgery.

Love, C

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