Matric

Thank you Wendy for being my chemo buddy again today and being my lunch date!  Even despite the chaos you caused in the chemo suite 😉

Today I met a brave soldier (although she doesn’t know that about herself just yet) soldier about to embark on her chemo journey.  She was being prepped by one of the Sisters while connected to a drip, fluids to help reduce her calcium levels.  They were talking about the chemo drugs, side effects, chemo normals, the options of ports vs veins…. and I thought, WOW that was me 13 treatments earlier!

Now I feel like the matric pupil (for those under 30, a grade 12!),  I know the drill, I know the school, the prefects, the teachers, the routine and rules are familiar and I fit in… Looking at this newby standard 6 (grade 8 for those under 30!), unsure, scared and like my friend, Adele, about to head for the hills the first chance she gets….. wanting to be any place but here… I know the signs. I was there…

I listened vaguely to their conversation, the anxiety and fear, the look of disbelief as the realities are mapped out, the feeling of being rooted to the spot watching the bus hurtling towards you and not being able to do very much about it… listening intently in case you miss the part that may save your life….after all this is a lesson in chemo survival 101.

It just amazed me once again, how those Sisters become your life line: is this normal, does this look like an infection, “im sorry to bother you, but….”. Confidants and counsellors, with the power to crush your spirits when those blood results are too low and you get THAT call;  then are elevated to the status of an Angel a day or two later with the words ” we have good news for you, your bloods are good” which means yay let’s go and pump you full of chemicals now, as you dance for joy!  I am astounded at their patience, their professionalism and compassion especially as these are the same conversations they have all day, every day…

The standard six (I like being the Matric 🙂 it feels like it’s been earned, a right of passage I guess!) and I started chatting, she’s a year older and has breast cancer with spots on her liver.  She told me about her two girls, her youngest is 5, the reality of her diagnosis and the terror of what that may mean for her family.

She will be having a port fitted on Tuesday, and I was very supportive of her decision (YES Me, the Vein girl!), I could see how she battled when they put in her drip…She will be coming for weekly chemos and hoping that the tumours respond to the treatment and start to shrink…..

We spoke about her fear of losing her hair while she was admiring my headscarf (thanks Adele!).  She had questions about whether she should cut her hair shorter now, just how does the hair start falling out, how did I feel about it when it happened etc.  Another reminder that underneath the cancer patient facade we are really all just girls; our hair is our identity, our protective wear.  And how are we supposed to put up the biggest fight of our lives without the correct armour?

The Sister thanked me for chatting to her, she had not been in a good place when she arrived this morning with her first chemo looming next week, feeling very overwhelmed and fearful.  And for me the reality hit: I had some Matric buddies when I first started down this road and if I wanted the Matric-like status, “the kid that’s been around the block and knows things”, the role comes with some responsibilities….  A kind smile showing respect for the start of her difficult journey, a brief tour of some unfamiliar ground, some emotional hand holding while the apron strings of previous lives are severed, reassurance that she is in the best hands possible and a “voice” on the other side of a phone call or sms as she finds her feet.

This almost matriculant has 2 to go!

“A library is a good place to go when you feel unhappy, for there, in a book, you may find encouragement and comfort. A library is a good place to go when you feel bewildered or undecided, for there, in a book, you may have your question answered. Books are good company, in sad times and happy times, for books are people – people who have managed to stay alive by hiding between the covers of a book.” E.B. White

“Instruction does much, but encouragement everything.” Wolfgang von Goethe

“Never put off writing until you are better at it.” Gary Henderson

“There are so many stupid things that steal that purpose from us. The stupid things that you believe a lie that we ‘re not as important as we really are. That our life isn’t as important as it really is. It’s important to the people that you love, it’s important to the people that you will love in the future, it’s important to the world around you and it’s so important that you fulfill the purpose that only you can fulfill the way that you can fulfill that.” Lacey Mosley

“Encouragement from any source is like a drop of rain upon a parched desert. Thanks to all the many others who rained on me when I needed it, and even when I foolishly thought I didn’t”. Claire Gillian

“Their words of encouragement were just what I needed. I was doing a great job, and I appreciated their cheers.I felt a dormlike camaraderie in the burn unit, since each of us knew the challenges we were facing like no one else could, and therefore how meaningful each triumph was.” Stephanie Nielson

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Google…

Yesterday I was back at physio – strangely a place I thought I would not see again until after radiation.

I have been battling with some lymph drainage issues over the last two weeks: some sensitivity and tightness in my new right lady lump with some swelling under the expander which in turn have caused some discomfort to my right arm.  Gillian took one look and said “oh dear, a seroma” ….????

I now know that a seroma is a pocket of fluid (in this case lymph) which can form near a surgical site and very common afer a mastectomy… (thanks  google).

Clearly I have been very fortunate that this has not happened sooner!   Some very lucky ladies even have to wear compression bandages around their chests to help reduce the swelling and encourage the body to reabsorb the fluid.  My 2ce daily manual lymph massage has obviously done it’s job.   But the last few weeks of heat and humidity have certainly made it more difficult for the lymph to drain effectively.  Gillian also found that I may have strained a muscle which could have further restricted drainage and apparently my diaphram was also not sitting correctly.  All those hours of googling radiation and recurrance stats in front of my laptop and the resulting stress from this, may or may not be to blame 😉

Fortunately an hour of therapy and Gillian’s magical hands did the trick, and I left her office feeling at least 5 kgs of lymph lighter along with a friendly reminder to avoid google for a while!

“If it’s not on google, it doesn’t exist.”  Jimmy Wales

“With Google I’m starting to burn out on knowing the answer to everything.  People in the year 2020 are going to be nostalgic for the sensation of feeling clueless.”  Douglas Coupland

“I have realised that instead of posting all my problems on Facebook, its better to find solutions for them on Google.”  Barbara Franco

“Sometimes Google should just come back with a message that says: Trust me you don’t want to know.” Unknown

Tripping down memory lane…

This week has been a week of crying….crying with laughter!

My friend Adele, whom I met on my very first day of High School, has been visiting with her photo album circa 1986-1990 via her ipad… Terrifying stuff, even scarier than cancer…..80’s hairstyles! EISH

We have had a week of exercise … skipping down memory lane and rolling on the floor with laughter at frightening fashion and horrendous hairdos.

I had a call from Adele a few weeks ago to say she had been reading my blog, and really felt compelled to come out and help in whatever way she could…spring clean, bath dogs, garden, cook…

I was totally blown away and naturally I protested…. afterall it was a very long and expensive way to come to make some meals AND she has two little boys and a stressful job…and I’m actually doing fine, I certainly COULDN’T expect that and certainly WOULDN’T expect anyone to do that…. and and and….

She sent me an sms a little later to say it was something she really felt she would like to do.  She remembered arriving on her first day of standard 6, not knowing anyone in PMB feeling very lost and seriously debating leaving school and walking back home, when I showed up, an equally nerdy and insecure almost teenager, the first person who made an effort to talk to her and make friends.  Now, I honestly was taken aback, I mean I remember that day, I remember all the sleep overs and us getting up at 3am to watch Halley’ s Comet, the dinner parties, the games evenings.  I even remember her mom being at my mom’s funeral that year… I mean we had a history, I was one of her bridesmaids and we had reconnected a few times over the years since they had been in the UK.  What I had never realised over the last 20 + years was what an impact that first day had made on her, enough for her to fly 10 000 kilometers.

Pete and I have totally been blown away by the kindness and generosity of so many people on our journey, the messages of support, the meals, the love…the things WE hope we can pay forward in the future.

So last Friday Adele and her hubby, Barry, arrived in SA to “do all the things she would liked to have done if she still lived here”.  We now have a ton of pressies and a freezer full of food 🙂 AND today, the day of my 12th treatment, I had a new chemo buddy and chauffeur!

Thanks Adele….3 to go!

Pressies!

Pressies!

Yummy!  Thanks Adele

Yummy! Thanks Adele

“Why did you do all this for me?’ he asked. ‘I don’t deserve it. I’ve never done anything for you.’ ‘You have been my friend,’ replied Charlotte. ‘That in itself is a tremendous thing.” EB White, Charlotte’s Web

“Friendship is unnecessary, like philosophy, like art…. It has no survival value; rather it is one of those things which give value to survival.” CS Lewis

“Good friends, good books, and a sleepy conscience: this is the ideal life.” Mark Twain

“There is nothing better than a friend, unless it is a friend with chocolate.” Linda Grayson

“We’ll be Friends Forever, won’t we, Pooh?’ asked Piglet. Even longer,’ Pooh answered.” AA Milne

V-Day

Happy Valentine’s Day!

Wendy and I are spending Valentine’s morning together having chemo.  Well, maybe the chemo is just for me, I don’t share well and somehow I don’t think she’ll mind too much 😉

After an anxious week of information overload, I am feeling rather relaxed today, think it’s because I have decided to focus on chemo right now and to just get through the next month….. OR it may just be all the love in the air 😉

4 treatments to go….

Thanks Pete xxx

Thanks Pete xxx

“I love you because the entire universe conspired to help me find you.” — Paulo Coelho

“Today is Valentine’s Day – or, as men like to call it, Extortion Day!” Jay Leno“Falling in love is so hard on the knees.” — Aerosmith

“As a man in a relationship, you have a choice: You can be right or you can be happy.” – Ralphie May

“You don’t love someone because they’re perfect, you love them in spite of the fact that they’re not.” Jodi Picoult

“A loving relationship is one in which the loved one is free to be himself – to laugh with me, but never at me; to cry with me, but never because of me; to love life, to love himself, to love being loved. Such a relationship is based upon freedom and can never grow in a jealous heart.” – Leo F. Buscaglia

To radiate or not to radiate……

So yesterday was a scheduled check up with the Dent Doctor.  Armed with my little black book of questions, Pete and I arrived in his office on a blisteringly humid PMB morning.

After discussing “perfectly normal” nose bleeds, weight gain, swollen ankles and wrists, numb fingers and toes along with a mole I was a little worried about, we got onto the topic front and centre in my mind right now…. Radiation therapy…..

My concerns over this next treatment phase have specifically come about after speaking to other breast cancer survivors: not being able to radiate over previously radiated skin should the cancer return – was something I hadn’t even been aware of to worry about; the effect of radiation on the mobility of my arm with regards to my massaging career; and the issue of increased lymphoedema of my chest, underarm, arm and hand.

I wasn’t exactly sure what the Dent Doctor’s reply would be or how he would address these concerns, afterall this was a man who was giving the worst news to patients on a daily basis – people who are desperate to be given ANY treatment in order to give them more time – and here I was whining about the “what if’s”.

But he listened and didn’t attempt to bully me into any decisions I was not comfortable with.  He just laid out the facts: the main tumour was large at 6cms, the perineural invasion and the two additional (albeit) small tumours….the fact that no matter how skilled my surgeon there would always be some tissue left which leaves a site open for cancer cells to develop, especially considering there is no way they could know what caused them to develop there in the first place….

Monitoring is not always accurate, mammograms are hampered by reconstruction (so are self examinations), ultrasounds are better but MRI’s are usually the best way they can keep check (but you can’t have those every month), something can always go undetected…. Under certain circumstances you can re-radiate……… and more compelling, radiation therapy HALVES whatever my chances are of developing any recurrance in the mastectomy site.

However he also said I needed to be comfortable and invested in the treatment going forward and offered to send me info on recurrance and radiation treatment.

His emails arrived as promised yesterday afternoon and all I can say reading the info for like the 3rd time through the haze and confusion of chemo brain was one thing…….”don’t ask if you don’t wanna know”.

“Do one thing every day that scares you.” Eleanor Roosevelt

“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.” Frank Herbert

“Courage is not the absence of fear, but rather the judgement thatsomething else is more important than fear.” Ambrose Redmon

“Fear of a name increases fear of the thing itself.” J.K. Rowling

“There is a stubbornness about me that never can bear to be frightened at the will of others. My courage always rises at every attempt to intimidate me.” Jane Austen

“I must say a word about fear. It is life’s only true opponent. Only fear can defeat life. It is a clever, treacherous adversary, how well I know. It has no decency, respects no law or convention, shows no mercy. It goes for your weakest spot, which it finds with unnerving ease. It begins in your mind, always … so you must fight hard to express it. You must fight hard to shine the light of words upon it. Because if you don’t, if your fear becomes a wordless darkness that you avoid, perhaps even manage to forget, you open yourself to further attacks of fear because you never truly fought the opponent who defeated you.” Yann Martel, Life of Pi

The Big C

Due to all the needles currently in my life: the weekly bloods taken from my foot, the side-effect combatting jabs in my bum before chemo and the chemo drips, I have been deliberately negligent in having my regular vit B shots.

However with the new issues I’m having with numb fingers and toes, I have been advised to put those weekly jabs back on track as Vit B can help with nerve problems.  So last Thursday after having bloods taken, I found myself sitting in a pharmacy waiting to see the clinic sister with a sore foot and a less than happy attitude.

I got pulled into polite conversation with a chap waiting in line to have a hearing test done –  “To keep his wife happy”!  He asked if I had “The Big C”, now I know it must sound really odd, but “cancer” was not the first thing I thought he meant!  For some odd, bizarre reason the only thing that entered my mind was CHLAMYDIA!   Suddenly I found myself frantically trying to read the miniscule clinic notice posted on the door, did I miss something……Wednesday was baby clinic, was Thursday STD’s????

Fortunately the penny dropped in my chemically dulled brain and I replied with a little more glee and relief than the situation called for: “Yes, yes, I have breast cancer!”  (with a great big smile on my face ***slaps forehead).

Either his hearing impediment was a lot more serious than I had originally thought or he was used this kind of mental behaviour,  but he barely blinked an eye.  He told me he had some family members who had been diagnosed with “The Big C”.  His niece had been clear for over 10 years after having lymphoma.   He proudly told me what a tough cookie she was.  She lived in Kwambonambi in Zululand at the time and used to drive herself to and from Durban for her chemo treatments; often having to pull off on the side of the road to throw up then get right back on the road again.

When the sister called me in, I took my vitamin B injection a lot more stoically than I would have before hearing that story!

It made me really think (maybe as I had been watching hours of Kardashian re-runs while resting) how we all get caught up in the lives of those we deem extraordinary: celebrities and public figures we wish to emulate because of how they look or how much money or power they have.  While when we meet or hear about ordiary people, caught in extra-ordinary circumstances displaying extra-ordinary character and strength, we seldom give them a second thought.

“Do not ask your children to strive for extraordinary lives.  Such striving may seem admirable,but it is the way of foolishness.  Help them instead to find the wonder and the marvel of an ordinary life.  Show them the joy of tasting tomatoes, apples and pears.  Show them how to cry when pets and people die.  Show them the infinite pleasure in the touch of a hand.  And make the ordinary come alive for them. The extraordinary will take care of itself.” William Martin

“Our key to greatness lies not in our ability to project ourselves to others as if we are putting ourselves onto a projector and creating an image of ourselves on a projector screen. Rather, our key to greatness lies in who we are which we can give to other people in a way that when they walk away from us, they are able to say in their hearts that they have taken away something with them quite extraordinary.” C.JoyBell C.

“Extraordinary people survive under the most terrible circumstances and they become more extraordinary because of it.” Robertson Davies

Double digits

Wow, I’ve hit double digits, chemo number 10…Once again I arrived early enough and had a choice of the 12 lazy boy chairs.  So I tucked myself away in the naughty corner.

Drips are dripping….My veins looked a bit reluctant this morning, even with them being thoroughly soaked in the hot water bucket.  But thank goodness for experienced, vein conquering sister Meryl!  My veins just need to behave for another 5 treatments….

Shal has come to chauffeur me around and to keep me company this morning.  Thank you Shal!

Have had a “flat” week and have had a bit of an issue with numb fingers, toes and the tip of my tongue…a side effect of taxol, I have been told.  I just have to keep my beady eye on it and to let the sisters know if it gets any worse.. like if I find I’m dropping things all the time or battling to feel the pedals when I drive (eish).   The chemo dosage may then need to be adjusted.

I finished in record breaking time today, Shal said she must be my good luck charm!

5 to go 🙂

“But I’m taking small steps’Cause I don’t know where I’m going.

I’m taking small steps And I don’t know what to say.                                                                                               Small steps, Trying to pull myself together                                                                                                                   And maybe I’ll discover A clue along the way!”   Louis Sachar

“The purpose of fear is to raise your awareness not to stop your progress.” Steve Maraboli