67 minutes

Last Friday was Mandela day….

Officially the birth day of Nelson Mandela and a day where many South Africans donate 67 minutes of their time to be of service in some way to others and their communities.

I was contacted earlier last week by the radiation bunker administrator to ask if I would be interested in attending a CANSA initiative for Mandela Day. This would consist of a pamper session held at one of the participating beauty salons followed by a “tea” hosted by a local supermarket chain as part of THEIR 67 minutes.

UMMM let me think about that…………………………………………………………YES!!!!

I mean C’MON there are not too many advantages of being a cancer patient!

So on Friday morning I showed up bright eyed and bushy tailed (haired) at the allotted salon for my appointment. I greeted the friendly receptionist and asked for my designated pamperer. The receptionist took one look at my hair and said “ok we will have to change your treatment, your hair is too short”.

Now, I had already had this discussion with Pete the night before telling him that I would probably ask for a manicure instead of the hair option as I couldn’t imagine what they would be able to do with my hair (not everyone’s a Kirsten after all) 🙂

I tried to be like all so cool about her remark, after all it wasn’t untrue or anything I hadn’t already concluded………………….but I have to admit, it stung.

The substituted mini Mani was great! My therapist said they had to change a few other appointments from the hair wash and blow dry option to the mani and pedi as quite a few of the ladies had very short hair…………ummm ya think?

I left her station with beautifully glittering nails. Which sadly lasted less than 67 seconds after I reached in my bag to pull out my car keys and glasses?  Apparently I should also have insisted on a chauffeur – to give my nails a chance to dry *slaps head*

I arrived at the tea with a few nail polish casualties but fortunately for me, showing off a perfect manicure was not a prerequisite to being granted access!

My mini mani!

My mini mani!

I ended up sitting at a table with four other ladies. Three of which were related: a mother, a daughter and cousin: one a breast cancer survivor of 12 years and 2 soldiers – one battling breast cancer and the other ovarian cancer.

A representative of Reach for Recovery sat down next to me. Now this is an amazing group of women – all volunteers and all breast cancer survivors. Deirdre, one of these ladies, came to see me in hospital after my mastectomy – she offered counselling, prostheses if I needed them, gave me comfort cushions for under my arms and those fantastic little bags which allowed me to carry my drains around with ease. We spoke of the possibility of me becoming one of their volunteers, but I can only do this once I have been in remission for at least a year.

We were given a talk by the local CANSA coordinator. She issued words of support, encouragement and gave us some very scary stats including this: 90% of cancers are reportedly caused by environmental factors, only 10% by genetics…….!

Mandela day

I also met up with some old chemo and radiation buddies and had some (non CANSA approved) snacks.   We shared stories, advice and contact numbers.  The salon incident was quickly forgotten when most of my buddies marvelled on just how long my hair was – I guess it really is all about perspective…..

It was an amazingly uplifting way to spend 67 minutes and I’m sure Mr Mandela would have approved!

Mandela

 

“The best way to find yourself in the service of others” Mahatma Gandhi

 

“You have not lived today until you have done something for someone who can never repay you.” John Bunyan

 

“There is nothing more beautiful than someone who goes out of their way to make life beautiful for others.” Mandy Hale

 

“Service to others is the rent you pay for your room here on earth”. Muhammad Ali

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Gone yesterday but HAIR today….

256 days ago I wrote about loss…

The day Pete had to shave off my hair was probably the hardest day of my journey so far. When I have a bilateral mastectomy, nerve pain, uncomfortable post-surgery rehab, 6 months of chemo, drips, needles, stretched skin, reconstructive surgery, lymphoedema, tattoos and radiated skin to compare it to – that should indicate just how horrific it actually was.

Perhaps everything else was easier to handle as they could be seen as necessary evils – life or death decisions and choices. The loss of my hair however was like helplessly standing by watching an innocent bystander get caught in the crossfire. It’s only crime being true to its nature and consisting of fast growing cells….

But the biggest lesson I have learned along this journey is that there is a process to follow and no shortcuts to take. With loss there is always an opportunity for some kind of gain…although sometimes you have to look very hard for it…and sometimes its a long time in coming….

8 months ago when I lost my hair I honestly could not see much beyond that loss. It felt like parts of me were being sheared off with each stroke of that razor. And when I saw myself in the mirror for the first time newly shaven with my flat chest in all its scarred glory, it felt as though a large part of something in me just curled up waiting to die. I couldn’t even imagine ever being able to claw myself back from that and I certainly had no clue how I could ever leave the house…

But something else life and this journey have taught me… is that you do….

You get up in the morning, you get dressed you tie a scarf around your head and you face your future even when everything inside of you is screaming for you surrender, to put your hands up (sadly at the time I couldn’t even do that!),or pull the duvet over your head and just give up.

Generally and realistically speaking I guess we don’t have a choice – shopping has to get done, dogs and even husbands have to be taken care of, suppers made and whether you are present or not… life goes on.   Each morning comes whether you are ready for it or not, and the first battle you fight as you open your eyes is whether you go along with it or not…

I wanted to hide away and to never face anyone again as much as I wanted to get out there so that it would be over with; and surely if I could do it once I certainly could do it again the next day and the next……

I will never forget the first day I went out with a scarf tied around my head. I remember walking into the mall with my shopping list in my hand and my head down: so terrified I would bump into someone I knew. So terrified that the knots I tied were just not tight enough that I ended up with quite a headache and some very strange marks around my forehead by the time I got home!

Despite the fact that the Dent Doctor had said that I would probably only be without hair for the first part of chemo – the first 12 weeks, and despite the fact that I had not been completely bald throughout – my fluffy and unevenly growing excuse for hair really only started showing up with any sort of vigour after chemo was done. I use the term “vigour” rather loosely!

So the last 5 months post chemo my uncoloured (grey), uneven fluff has been kept literally and figuratively under wraps. My cunning plan was to motivate myself through radiation by promising myself a trip to Kirsten once it was over for a great reveal!

So last Friday I took the long awaited trip to Kirsten’s salon – not sure who was the happiest to see who! I left sporting my newly coloured, neatly trimmed, military style hairdo, sans a head covering.

I thought I would be a lot more excited than I was – after all this was a day I had spent 256 days aching for…

I walked into the mall to meet Wendy for a celebratory tea and all I could think of was how things had come full circle…including feeling exactly how I did that very first day with my scarf tied too tightly around my head – an alien: exposed and totally insecure!  It took everything I had not to reach down into my bag grab my hat and cover up.

Good things about having really short hair : No ironing, no blow drying, taking less than a minute to wash and condition, continued huge savings on the buying of hair products, not worrying about being windswept or getting my hair wet in the rain…

The best part? Pete has been “styling” my hair as he’s the expert on hair gel and the like! I definitely think he far prefers it to straightening my long hair 🙂

Down side: I don’t exactly have the facial or body features to pull off a pixie-like ‘do, so I definitely look like I may be considering a career in the military. I even feel I should learn to salute?!

hair me

hair

hair1a

hair3

hair5

hair2

hair4

 

I’m Freeeee!

SO like yesterday was my like last radiation session – no big deal or anything, I took it in my stride…

ARE YOU KIDDING! Of course it was a HUGE deal! If my arm would actually hold my weight and if I wasn’t so concerned that my poor boiled skin wouldn’t rip in two, I would be doing flick flacks in the garden right now!

OK who am I trying to kid – I’ve NEVER been able to do a flick flack –
EVER!

The air in the Radiation bunker was “electric”…with so much excitement “radiating” from the 5 of us finishing our treatment ****see what I did there, huh huh?****

Even one of the radiation therapists said it felt like a carnival atmosphere! I bought non-microwaveable 😉 goodies for tea and my now signature pink ribbons for all the ladies who have been keeping me safe (or as safe as they possibly can) under the watchful eye of the radiation-ray-gun machine!

There were hugs all around and I left with the parting words….. “Please don’t take this personally, but I hope to never see you again”. They laughed and didn’t look particularly offended, I guess they get that quite often…

So after 25 treatments and going into my 6th week of travelling to that bunker EVERY week day, (give or take machine breakdowns and a public holiday) – PINGGGGGG – cue the microwave beep –
I am DONE!

I saw the Dent Doctor for my weekly check up and he is happy with how the treatment has gone – he’s a little concerned about that patch of skin under my armpit and says it may still break down, which means it may peel off and cause a sore, and if that happens I need to apply gention violent. So if anyone sees someone wondering around in the next few weeks with a purple armpit – please wave, it’s probably me!

The bestest news ever is that my biggest treatments are all done! We are still in negotiations regarding the next phase of hormone blockers. He’s done research, I’m doing research. We may just agree to disagree.

I see him again in 6 weeks time so by then I need to have a protocol ready I am comfortable to follow.
BUT FOR NOW, another HUGE milestone has been reached!

Green aliens

“Ultimately we know deeply that the other side of every fear is a freedom.”

– Marilyn Ferguson

 

“Cancer didn’t bring me to my knees, it brought me to my feet.”
~Michael Douglas

 

My cancer scare changed my life. I’m grateful for every new, healthy day I have. It has helped me prioritize my life. ~Olivia Newton-John

 

When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something’s suffered damage and has a history it becomes more beautiful. ~Barbara Bloom

 

The greatest mistake in the treatment of diseases is that there are physicians for the body and physicians for the soul, although the two cannot be separated. ~Plato

 

Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops… at all. ~Emily Dickinson

 

Conditioned!

Today something completely marvelous happened!

No, there was not announcement on CNN about a cure for cancer; the Radiation Bunker didn’t call to say that they had miscalculated the number of sessions I had been allocated and not to bother EVER coming back!; I didn’t win the lotto (despite feeling particularly lucky having found parking in the hospital parkade everyday for the last week and a bit!); I didn’t wake up in a sweat (not induced by the hot flushes) to find that the last 10 months were only an awful nightmare…..

OK, so THAT would have been more than completely marvelous…

But something marvelous DID happen this morning as I was taking my shower….

So there I was washing my fluffy excuse for hair with the (gentle) baby shampoo I’ve been using since it started growing back, when I vaguely noticed that the fluff was feeling a little dry – exactly what normal hair would feel like in Winter or after weeks of radiation. So without giving it a second thought, I reached over and grabbed the conditioner bottle…..now this may not even seem a like a small step for mankind (or womankind), but for me it was a giant leap towards something I could finally consider almost familiar and normal!

It took a while to get the stuff out – I had to fight my way through the cobwebs and the crust that had clogged the opening …but determination and utter excitement won and I managed to squeeze out a drop!

Sadly a drop was all I actually needed, a complete change from the handful I was using year ago! BUT for the first time in 249 days I was actually using conditioner!

For my hair!

On my head!

So at 9:30 this morning I headed out sporting my newly conditioned hair under my hat for the 6th (and hopefully LAST) week of radiation.

Next week when I get in the car and drive off somewhere I really will have to concentrate very hard on not automatically heading straight for the Radiation Bunker.

After all – I have been conditioned! 😉

2 more to go!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Conditioner1

 

“When you look in the mirror, what do you see? Do you see the real you, or what you have been conditioned to believe is you? The two are so, so different. One is an infinite consciousness capable of being and creating whatever it chooses, the other is an illusion imprisoned by its own perceived and programmed limitations.” David Icke

 

“Home is where you were conditioned.” Darnell Lamont Walker

 

“I think I am at my best when my hair is short. It’s easier to take care of and more of who I am. Women are conditioned to think we need long hair.” Halle Berry

“We have been conditioned to see the passing of time as an adversary.” Menachem Mendel Schneerson

More than a handful

Over the last 10 months I have mentioned some of the people who have assisted me through various chapters of this unexpected journey – those I’ve pretty much adopted as part of “my team”. My plastic surgeon, my Oncologist, the Oncology nurses, my physio, the radiation therapists…even the car guards outside the Radiation Bunker…the list seems to be growing! 🙂

Today I would like to introduce you to Megan.

I spent oodles and oodles of time, after my diagnosis and initial surgery, googling just how to survive and thrive through cancer. Now you would think this would be a reasonably easy task – merely finding some simple and practical advice on things like diet and the like: what should be avoided, what should be eaten, what should be supplemented…..well, take my word for it, if you ever want to feel particularly dunce-like for a day, start looking for nutritional help on the internet!

It was ridiculous! I would read just how good so-and-so was for the treatment of cancer and then the very next article I clicked on would poo-poo all that research and state just how useless that particular stuff was and not only that – it actually caused cancer! No jokes! I ended up being more confused than I was before (and that was BEFORE chemo-brain!). I totally get how ignorance can be bliss!

My intention had been to empower myself as much as possible so that I could take my health and well being into my own hands and implement whatever changes I needed to in order to keep me cancer free. However all the research actually did was make me afraid of EVERYTHING and crank up the guilt! I learned that I had clearly brought this on myself due to all my previously poor nutritional choices and my shocking lifestyle! I had used paraben and metal containing deodorants, I had worn underwire bras, I had not been vegan and not spent every waking moment juicing, I dared to eat fresh vegetables that I hadn’t grown myself, I bathed in water and drank from the tap, I wasn’t getting enough sunshine, I was getting too much sunshine, I hadn’t had children before I turned 30, I wore shoes imported from China…….. I felt like I should be wearing a neon sign saying “hello my name is Janine and I deserve to have cancer!”

I know I can joke about it now, but at the time it was awful! The fear of recurrence and my seemingly inability to do anything about it terrified me especially coming to the end of chemo. For six months I had been sitting next to soldiers fighting their 2nd or 3rd battle with related and unrelated cancers….

I mentioned to a friend just how despondent I was feeling about all of it; she previously had some health issues of her own and suggested I make contact with Megan a Nutritionist and B.E.S.T practitioner (don’t worry I had to google that one too!).

Pete and I arrived at Megan’s office one Saturday afternoon and although I can’t speak for him, I certainly must have had “my deer in the headlights look”. I honestly expected her to do exactly what Google had done to me, admonish all my previous dietary and lifestyle choices….be horrified that I was having chemo and even thinking about going ahead with radiation! I even had my answer ready: “yes yes, I know it’s ALL my fault, but can it be fixed? Is there ANY hope for me?”

To my total surprise, she never once made me feel bad about myself or my choices even if she noticed I was wearing Chinese shoes! Instead she very kindly and gently discussed all my past medical history: my surgery details, my treatment plans, the fact that I had never had any previously serious illnesses, that I still had my tonsils and my appendix and that there was no history of breast cancer in my family… She used the Bio Energetic Synchronization Technique machine thingy to check out all the systems in my body – an application I had never heard of and still don’t really fully understand! She printed out the results and I remember holding my breath waiting for the bad news…..

She looked as surprised as I was when she announced how well my body was actually coping under the stress, even with all the chemo. She sent me home with info on her recommendations, some suggestions on further (proven) research, supplements I could start taking immediately and things I needed to check with the Dent Doctor first before I could start taking them.

She obviously couldn’t make any magical-cure-all potion or claim that she could ever guarantee the cancer would never return, but I left her office feeling confident that I had found someone who could help keep my head above (the chlorine free ) water and not leave me to drown in an ocean of cancer fear and guilt.

I have been back to see her a few more times since then and each time the tests show my body is getting stronger despite the chemo, the surgery, the radiation and general expectations.

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So I will carry on looking like a druggie at breakfast time with my handfuls of multivitamins, extra Vitamin D3, additional extra Omegas, the Salvesterols and Probiotics. I drink barley greens and take a calcium and magnesium concoction! I have weekly Neurobian injections and at the moment I’m having additional B12 injections just for the duration of radiation. And for someone who NEVER took pills at all – this is a MAJOR lifestyle change! – even if I do have to take out another bond to pay for it all 🙂

The next time I see her I will be going onto an eating plan to help with weight management and all the other menopausal side effects of the chemo and next phase of treatment – (cue the scary music)….. the Hormone Blockers!

I DO understand that even with all this extra help, there is NO guarantee of remaining cancer free. But I’m certainly going to ensure my body has what it needs to put up a damn good fight!

6 dates with the radiation-ray-gun machine to go….

 

“No matter how much exercise or energy healing I do how many soothing restorative walks I take through the woods, how many heads of raw kale I juice or don’t…there is no inoculation against illness. No guarantees, no way to wrestle life under control. There are merely best attempts. But surrendering the false hope that there is a single way to make everything, Just So, might just be the best strategy of all.” Gillian Deacon

“The only way I could conceive of waving a white flag,
would be during the process of folding it,
so to be used as a napkin later,
at our victory dinner.” Tom Althouse

 

“I take my only exercise acting as a pallbearer at the funerals of my friends who exercise regularly.”
Mark Twain

 

“There’s no doubt that your genes contain very important information, but 65% of the influence can be attributed to the environment and your lifestyle – they determine whether your unfortunate genes come to expression. Hello! That’s a bit of a wake-up call, isn’t it?” Thorbjorg Hafsteinsdottir