Dedicated to my Mom

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9th November 2014 is when the woman who meant so much to me took her last breath. So I have dedicated this blog to her. This amazing woman I got to call my mother.

My mother was one of a kind. She was bold, loud and boy when she walked into a room she commanded it and drew attention like nobody else I knew.

It was my mom and I from when I was very young a whole 18 months. We lived with my grandparents.

My mom was a rep for Matchbox toys and so when it came time for road trips I was taken along. Her and I roadtripping. She would sneak me into her hotel room and we would order room service. I don’t remember much of this time as I was young but she often told me about these times. There is a picture of me with curlers in my hair having a wee on the side of the road next to her blue car. Its such a cute picture.

My mom was the adventurous type and so decided that she needed a change and moved down to Amanzimtoti in Durban with my Aunt Nadine. So it was just the 3 of us jolling in Durban for a year or so. I’m sure that must have been such an adventure.

My mom met my step dad and I instantly fell in love with this man. He was a gentle giant and took me right under his wing like I was his own. The 3 of us spent a whole heap of time together and eventually moved into a flat in Winsor Park Johannesburg. I remember over running the bath and all the water flowing down the stairs in our flat and my mom not making a big fuss over it just laughed and we had to soak up the water with towels. We did so many things, saw so many things together. People couldn’t believe I wasn’t my step fathers child because he treated me so well.

We finally moved to a small holding in Midrand where I spent most of my childhood. It’s where my mom and dad got married, it’s where my baby sister was born, its were I learnt so much from my mom.

Not only was she an incredible mother but she was a free spirit. She really did live life to the fullest. She taught me about spirituality, I was taken to meditation circles, healing circles, church, Buddhist retreat centers, spiritual fairs where I had my aura drawn. We used to draw animal cards and angel cards.

We would have parties at our home and the music and dancing would go on till 3am the following morning. Who would be the last one dancing it would be my party animal mother.

Christmas time was a for everyone. We had both sets of grandparents, aunts, uncles, friends, cousins. It was a day of being spoilt and a day that started early and finished off late with music and dancing.

My mother was the most giving person I know. She would do anything for anybody. She had the greatest compassion and greatest understanding of all things great and godly.

Not only did she have a big spirit she was the most beautiful woman I know. She had the thickest blonde hair, striking blue eyes and the biggest friendliest smile I have seen. She was always beautifully dressed.

The 4 of us moved to Durban and life turned and became a struggle financially. She did her very best to keep us a float and she did a great job. Yes even in those difficult years the brightness that my mother walked around with never dulled no matter how tough things were. She was one incredible person.

My sister and I yet again exposed to all different walks of life going to Hindu temples, mosques, healing and meditation circles.  We really learnt so much.

Life was not kind to my mom despite all the effort she put in. She had a laugh that would make someone else laugh. And she still managed to keep her sense of humour and if she found something funny oh boy she would giggle for hours over it. I remember watching Hangover with her and we laughed till our bellies ached and the tears rolled down our cheeks. And I think I laughed more at her laughing than at the movie.

The year before my mom got sick she would often complain that there felt like a truck was sitting on her chest. She got chest infection after chest infect towards the end of the year. My sister and I forced her to have a chest x-ray and that is when life took an unexpected turn.

Not for one moment did I ever think that I would lose my mom. In some sort of denial you believe that people will live forever. That they will never die. I wasn’t ready for my mom to go. I needed her more than ever this year. I had to do this year which was the hardest for me without the one person I so needed the most my mommy.

In true style when she shared her health news after having her biopsy she called a big family meeting and told everyone she had stage 3 lung cancer. My family almost recoiled into themselves. Some expressing their disbelief by asking how true the results were, some running out the room. I just sat there feeling numb. I had a feeling, I knew something wasn’t right before she even told us. I kicked into survival mode not allowing myself to fully absorb the severity of what we just heard.

the 7 months that followed were so difficult and she fought with all she had in her.

She certainly chose a day to leave this earth. Sunday during the day. She had my whole family with her when she passed on a beautiful summers day. I was holding her hand when she took her last breath. It was a beautiful passing. She looked so beautiful, calm and serene.

Today my heart aches just as much maybe even more than it did the day she left us. I long for our coffee dates, long chats even our arguments, I long for her Facebook message of “Hi Apple, love you, let’s do coffee”, I long for just 1 more hug, just 1 more moment with her just to tell her I love her.

Miss you mother dearest darling. You were my best friend, you were my everything.

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My Day In The Sun

The cancer journey has certainly opened up some doors for me, some new experiences and put me in touch with people I would never have come across. After my op in March I met the founder of an organisation called Pink Phoenix cancer foundation (http://www.pinkphoenix.co.za)  This meeting was by chance but through this meeting I have done some amazing things since finishing treatment.

I was invited to be part of a fund-raiser called Wacky and Wonderful which was launched last week https://youtu.be/Uty8y_Ry2aQ   or http://www.pinkphoenix.co.za/pages/11937/niselle-naidoo

The funds that are being raised are for an inspirational 20 year old girl Niselle who has been fighting for her life for the last 4 years. She needs a bone marrow transplant and has finally found a match in the UK. In most cases like these the medical aids are not forth coming with funds and so by doing this wacky and wonderful photo shoot Pink Phoenix cancer foundation hopes to assist Niselle in raising funds.

I had the honour of meeting her and her amazing parents and she is one amazing young lady. She was an inspiration to me.

I was then asked if I would be a guest speaker at a fund-raising event for Pink Phoenix at the end of October. When I got the email my heart skipped a beat. Me + public speaking = disaster. My matric oral was a mess and there was no way I could stand in front of a whole lot of people and talk. But then I gave it some more thought. This wasn’t an oral or a speech about something arbitrary. It was an opportunity to share my story, my journey with cancer. And something that is close to my heart is the fact that I can create awareness around breast cancer. That is why I started this blog and shared it with as many people as possible. So I said yes.

As my mom would say (often) do what scares you. ha ha well mom I’m doing it, I’m doing something that scares the living daylights out of me. Hope you are proud. I know she would have been. She would have dressed in her pink from head to toe and whooop whooped in the back ground.

After I met Sharon from Pink Phoenix she asked if I would like to be apart of their ambassadors: Brave and Beautiful. I felt so honoured and as soon as I was finished with my treatment I was booked for my photo shoot.

I had to be styled the day before in Carol Clark dresses. That was so much fun. I was brought dress upon dress upon dress. Sort of like a Hollywood move star 🙂 . The outfits were beautiful and I felt beautiful.

Being so exposed and bear while going through treatment you don’t feel beautiful or don’t feel like a woman. You are at your rawest. This morning of fun made me feel special, sexy and feminine.

The photo shoot morning arrived and Sharon took one look at my face and said “are you ok you look nervous” and I was. I haven’t done anything like this before. Ok well maybe when I was 9 years old but that doesn’t count. I got to work with an amazing photographer: Sean Baker and had my makeup done by Nixon make up artist Jules. All these wonderful and professional people were there for me that day. I hope that doesn’t sound vein as it’s not meant to be but I truly did feel like Royalty. I had 4 different dresses in 4 different scenes with 4 different make up styles. It was such a fun day. I must say though my muscles were kinda stiff from standing in all sorts of positions during the morning.

Over and above the shoot I get to share my story in a nutshell. When I sat down to write it, it felt awkward. I battled to find the words I wanted to say. Revisiting those first few days I got quite emotional. That feeling when you first hear your diagnoses, the fear, the tears and the great big unknown cancer world.

I sent that draft through but wasn’t happy with it. It wasn’t until I started writing my “speech” for the fund-raiser that I realized my ambassadors story was not the right one. I tweaked my speech and sent that one through. It flowed more perhaps because I was a little more out of the woods and my head was clearer and I was in a better emotional space.

Over and above all of these amazing things happening I went to Cape Town with 2 of my very best friends Ali and Pauline. A girls weekend in the Mother City. I think the mountain shuddered at the thought ha ha. We had such an incredible weekend. Eating, drinking, sleeping, laughing, crying. And we just recharged our batteries. Each and every one of us have had a tough 2 years. So this holiday was just what the doctor ordered.

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So next week is the fund-raising event where I will be guest speaker. I have bought a new pretty dress and hope that my speech will run smoothly. I am nervous and excited all at the same time.

I will keep you posted to how it all went!

Sending loving and healing vibes too all my dearest soul sisters and loving vibes to the rest of you. Hope you all have a wonderful happy day 🙂

TATAS

I have become quite comfortable discussing my boobs (tatas), demonstrating over my shirt where they are radiating and how large my boob is. I do this so unconsciously because I have had so many doctors having a look, I have had to have them exposed during radiation and examined every week and by examined I mean poked and prodded; that they have really become something I am not shy about.

I don’t really realize this when I am talking to people and I can almost see them dart their eyes about the room as they are too embarrassed to look. ha ha sorry about that friends but all dignity was lost on my very first  biopsy.

I have a week left of radiation and when I look back at everything I have been through. Everything I have managed to survive I can’t actually believe it. When I was at the starting block of this very long and scary obstacle race I didn’t know how on earth I would get through it all but I have. I’ve done it. I’m on the flip side and more than anything ready to start living my life again.

As I have said before I often wonder how I will be but as I sit here typing this I know I am going to be great. I know I will be strong and will start living my life the way I am supposed to.

CAN WE JUST TAKE A MOMENT AND CHEERS TO THAT!!!!!!

CHEERS TO LIFE! CHEERS TO GRATITUDE, CHEERS TO LOVE! CHEERS TO LIVING FOR THE MOMENT! CHEERS FOR APPRECIATION!

So radiation has been going so well. Not so much of a walk in the park as I thought. My poor little tata is big and red and angry and oh so damn itchy. The worst part is you cant really get your nails in there and give it a good scratch. You run the risk of infection and skin break down. Oh yes lovely hey. I often joke that I am walking lob sided cause the one boob is bigger than the other. Actually a size I wouldn’t mind keeping if I could have both that way 🙂 wishful thinking. (without the big, angry, itch skin of course)

The doctor has been happy with everything and so the count down is on friends. 7 more treatments to go and I will kiss this cancer goodbye. Thanks for coming, thanks for the lessons, thanks for making me start appreciating more, thanks for teaching me to forgive, to let go anger but I am done with you and your lessons.

I held a tea for my Soul Sister support group. We hadn’t all met each other and it was so nice to put a face to a name. It was such a lovely morning. Great to discuss treatments, scans, cancers and how we all get through each day. We are uplifting, inspiriting and a bunch of beautiful woman.

My poor husband has got 5 years of grumpy menopausal wife at the age of 33. Shame poor man has to deal with a menopausal wife twice in his life. Because my cancer was ER+ and PR+ (estrogen & progesteron positive) I will have to go onto hormone therapy.

2 aspects of this: Zoladex injection for 2 years. What this does is stop the ovaries from producing estrogen basically putting me into a clinical menopause. This delightful process has side effects like hot flushes, weight gain, mood instability. Yay what fun!!! And then I will be on Tamoxifen for 5 years which is an antagonist of the estrogen receptor in breast tissue. This also has side affects of weight gain, mood instability, nausea. Oh great so I get a double wammy of menopausal side affect. Watch out here comes godzilla

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I get to celebrate my 34th birthday in a couple of days. I don’t know if its a getting older thing or a combination of the absolutely crap year I have had and the fact that it would be the first birthday without my mom but I haven’t been as excited. I love birthday and love celebrating them. We don’t just celebrate the day in my house its a whole weekend. Its not quite going to be the same without my mom phoning me and singing happy birthday over the phone and then there would have been a definite coffee date during the course of the day and flower, mother darling always bought me flowers. But we shall see on the day how it all goes for now I am bidding farewell to my 33rd year as it was the crappiest year ever: loosing my mom and being diagnosed just 3 weeks after tops my list of worst years EVER.

The thought of being over and done with all this treatment is exciting and scary all in the same breath but I’m not quite done as I will be on the endocrine therapy for 5 years but I suppose that it is easily managed in comparison the the aggressive treatment I have had.

So I am going to plan a BIG end of treatment party I think. For me it will be a fantastic way to send off the big C, celebrate my tatas (boobs) and a great way to celebrate the start of my new life. So party planning I shall begin 😉

Shine (Birdy)

We often look at how far we still have to go but a very good friend of mine Dave said instead of looking how far you still have to go look at how far you have come. When he said that a little light bulb went off in my head. Actually yes. That mountain doesn’t look so steep if I look back at how far I have come. I have faced the hardest part of the journey thus far and what I still need to face is difficult but I’m closer to the end now.

This experience is so humbling. It has made me more compassionate, more sensitive to other people’s journeys. And that’s not to say I wasn’t like that before. And I’m not just talking about people who have cancer but everyone’s experiences. Another friend of mine that has also been through this journey said to me right in the beginning that I must be aware that because I have faced a dreaded disease that I may look at other people’s issues as not as serious. I’m glad I haven’t done that. I am very aware that each persons situation is complicated and they are handling their journey the best way they know how.

I have also started digging deep into myself and have begun uncovering some interesting truths about who I am and what I am really about. And I know this may sound somewhat crazy and I feel crazy saying this but I am grateful for this experience in my life, grateful that it has slowed me down and made me re look at things.

Somewhere along the line of taking pictures of how many to go we got a little confused. But rounds 8, 9, 10 came up. I must say that towards the end it really started to drag. The relentlessness of every week was starting to eat away at me. It felt like my life was in limbo. Suspended waiting for treatment to finish before I can continue with my life.  At round 8 I started to feel nauseous. The side effects were getting worse week by week.

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I investigated hemp oil when my mom was diagnosed. Really strange story quite serendipitous I think. Last year September I went to Nottingham road with some of my closest girl friends. We had booked lunch at a place called Lala Lampara. On that morning of our booked lunch we decided to move our booking for an hour later. We arrived at the restaurant and decided to move from our outside table to an inside table. Whilst having lunch another family came to sit right next to us. The restaurant was empty and for some reason they decided to sit right next to our table. Towards the end of our lunch my friend Tracey recognised the one lady at the next door table. They got chatting and we ended up chatting to them next to our cars in the parking lot. Through discussions it turns out that their mom had passed away 2 months prior from lung cancer. They were up in the Midlands celebrating their dads birthday. We chatting about all sorts of things and then hemp oil came up.

When I got home from my little holiday I did some research into hemp oil and it all seemed quite amazing what this natural  product could do. The lady I met gave me contact details of someone who supplied it. I go in touch and decided to get some for my mom. Sadly we only got to give it to her a few times and so we don’t know if it would have helped her but I honestly think my mom’s case was so severe it may have been too late.

So now having this hemp oil in my cupboard I decided to give it a try. What is the worst that could honestly happen? I could feel a little high, giggle a little and have a good sleep at night which was now becoming an issue too. Lack of sleep was not something I dealt with well and it was starting to become a problem for me.

So I tried it. Vince my hubby got a kick out of making me laugh which I did. Laughing is so good for the soul! And I didn’t sleep as well as I expected but I definitely slept better. And so I have decided to take it every night. If it cures cancer then why the hell not. And if there are any sceptics out there please have a look at the following website it has a lot of interesting facts: http://phoenixtears.ca/ . Carte Blanche also did a special on it and it has many many benefits not only for cancer.

I saw Dr Narsai at the end of my 9th round of chemo and he was happy with the way everything was going. I mentioned that my fingers were becoming more numb and my feet had become sensitive to the cold. He had already lowed my dose by 10% so we needed to keep an eye on how my fingers were going towards the end.

After round 10 of chemo (taxol) my fingers became incredibly number. The numbness was moving down my fingers. I also noticed that I was struggling to open up packets with my fingers or any sort of fine motor movements were becoming an issue. This really made me a little frightened. Because peripheral neuropathy is irreversible I really had to keep an eye on them. I called the oncology nurses and they said I must come in on Monday as usual for my treatment and we will chat to the doctor but by the Friday it was so bad that when I went for my blood tests I spoke to the nurses again about what had happened during the week. She popped her head into the doctors rooms who said I need to see him on the Monday before I had chemo to discuss it further and they may stop the chemo all together.

I didn’t know how to feel about it all. Obviously relieved that if they did stop the chemo that I wouldn’t feel so ill but also scared that I am not having all the necessary treatment I need to make sure that if there was any cancer cells travelling around my body that they had been killed off. I was happy and sad; a little bitter-sweet I suppose.

I had mixed reactions from my friends some very supportive and happy and others a little concerned. I had to trust in what the doctor was to say on Monday. This is what he does every day, he knows what is best for me.

The weekend dragged by and I was quite relieved that it was time to see him. He said he would definitely stop the chemo at this point. I had, had 10 rounds which was enough chemo for it to be effective. He said that when they administered the Taxol every 3 weeks it would amount to 180 (whatever the measurement was I can’t recall) but with Taxol being given weekly it amounts to 210. So as he calculated I had had enough Taxol for it to be equivalent to having the Taxol every 3 weeks. Armed with that information I felt completely confident that the decision that was made was the right one. I was young and nerve repair takes sometimes years and if its is permanently damaged then I would battle with fine motor skills for the rest of my life.

We then went on to discuss the next phase of treatment which is radiation. He said there would be a 4 week break between my last chemo and my first radiation treatment. That is a little frustrating for me. I really wanted to get this over now but he had his medical reasons and so I needed to be patient. I would receive radiation on the whole breast but no radiation under my arm. I would have to go for radiation planning which will be done the week before and then I will have 6 weeks of radiation.

And so I can see the top of the mountain. I can see the end of this ordeal in my life is near. I think about all the emotions, all the tears I have cried, all the fear and anxiety, the sleepless nights, the sickness, the no hair. All of this is coming to an end. 1 last obstacle to go and I can look back and say I did it. I can say that I AM A SURVIVOR!

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Dark clouds and silver linings

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This has been an inspirational saying for me. Its a hard pill to swallow when you are on the downward spiral into the darkness, into the depression but just like a new grass shoot that grows where its been burnt to a cinder. We grow through experiences, we learn through experiences. I have found that I have had to face so many things I have been scared of and now l am brave, I am strong. I have grown as a person and I have become stronger through this whole experience.

I have met some incredible people along the way, inspirational people. I was waiting to meet a woman who had also been diagnosed with breast cancer, also 33. I asked if she would like to meet for coffee to chat about what she was going through. While waiting for her the most beautiful woman approached me and asked if I was having chemo. When I told her yes, she told me who she was and that she was a 6 year survivor of cancer. She was given a year to live and they didn’t have much hope for her. I was so taken back. Her name is Sharon Van Straaten the founder of Pink Phoenix. She was so inspirational and had so much support and love to share. Again another serendipitous meeting. I have since gone to see her again and have offered my assistance with any fundraising or anything else she requires. Have a look at her website: http://www.pinkphoenix.co.za/

She has done stories of woman, men and children who have fought cancer, survived cancer and still fighting cancer. They raise funds to assist parents pay for their children’s treatment. They have assisted 5 children thus far. Their stories are touching, emotional and inspirational. I am honoured to be assisting with such an amazing foundation.

There are always silver linings during times of turmoil. You just need to look out for them and grab the opportunity to use these silver linings to help you through whatever you are going through.

In between my treatments I go to celebrate a very special occasion with my husband. It was our 10 year wedding anniversary. We were married at the Oyster Box Hotel and we said that for our 10 year wedding anniversary we would stay at the hotel for that evening. Well my silver lining shone so brightly for this special occasion. I was really spoilt and loved by my husband. I am truly blessed to have such a great man by my side, he has been my person, he has been there every step of the way holding me up as I walk this difficult journey. So not only do I get to have his endless love and support, I get to be spoilt rotten like a little brat ha ha. He made me feel like I was the only one in his universe.

I was spoil with champagne, chocolates, diamond earrings and a fancy dinner at the Grill room and obviously I got to spend a whole afternoon and evening with the love of my life at the hotel we were married at 10 years ago. You see silver lining 🙂

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This magical time carried me through a very sad day only few days later. It was my mom’s birthday and the very first one without her. My mom had an energy about her, a viberance that filled a room. Her beautiful golden hair, her big bright smile and her always wanting to have an announcement. It was an ongoing joke that when she had an announcement that she was either pregnant or we had married her off. So to celebrate her life we had a lunch in her honour. We made food she loved (well maybe not the vegetable soup starter ha ha, mother darling was more of a meat eater) and had her favourite cake for dessert. We even sang to her and had the kids blow out the candles.

Its really hard going through this experience without my mother dearest by my side. Its a pain that I don’t think will ever go away. Her and I were not only mother and daughter but best friends. We would speak on the phone every single day maybe more. There would definitely be  a coffee date or 3 during the week. I miss that more than I can even describe. Just to have her hold my hand, give me a hug and having her fighting spirit around to keep me uplifted and moving forward.

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When my mom passed away my very best friend Alison had a special chain made for me

.facebook_1432564211381 It was such a special and thoughtful gift and very symbolic. My mom’s nickname for me was apple. To be honest the only reason why I think it was apple because I used to eat granny smith apples by the bucket load. And so hence the name of my blog. Pink for breast cancer, candi my name and apple in remembrance of my incredible mother

My radiation planning day came around and we were off to the Oncology rooms in Durban. I was taken into the room where the CT scanner was. Today I would be marked with 3 tatoos (you see I’m hardcore now ha ha), 3 tiny dots so they can line up the radiation machine in the correct place every time. It was a little emotional time for me as the last time I was there, my mom was having her radiation planning for brain radiation. It was a very stressful time as my mom was in so much pain. The process here is they put a mesh mask over your face and mould it. I just remember my mom crying, it was really hard. And so being there again I had all these heart aching memories flooding back.

I had a CT scan and I was marked with 3 little dots 2 on either side of my body and 1 in the middle of my chest. It was over quite quickly thank goodness. It would take 7 – 10 days to start radiation. I would be given 6 weeks of radiation, 30 treatments, 1 a day for 6 weeks. I felt like a horse at the end of a race, I just want to get “home” to the finish.

I have been through a hell of a lot in the last 8 months, it has tested me emotionally, mentally and physically but I am almost there and I am stronger for it.

Little Reminders

I have been added to a group on a whatsapp chat called the soul sisters. All these beautifully strong woman have been affected by breast cancer. Each and everyone of them are fighting their fight or have just finished with treatment. They are all an inspiration and we chat on a daily basis encouraging each other or just having a good old moan about what we are experiencing. It has been really wonderful to be apart of this group. I just want to salute these amazing woman: Natalie, Julie, Pam, Kim, Mandy, Ru, Lauren and Cindi you are all amazing.

Its that deeper understanding one has when you have yourself experienced that same experience. I suppose like many experiences in life you feel like you are the one and only person having this experience. It could be sleepless nights with your new born, unruly children, loosing a partner whether in death or through separation, loosing a mother, father, child. So being apart of this group has made my not so normal life anymore seem “normal”

I sailed through the first week of chemo, not much to report thankfully. I didn’t feel as good as I did when I had that break from chemo but nowhere near as bad as I did with red devils.

My bloods were great for round 2 and I was hooked up and ready to go. I was a little nervous to be honest as with my reaction the first time it was quite possible I could have another reaction and if that was the case the doc would have to prescribe another drug and who knows what kind of side affects I would have. I was quite confident in the fact that I know what to expect after this chemo and didn’t want anything to change.

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Sometimes the chemo suite is quiet and everything is calm and under control and sometimes it is like a train station. Today was a day like that. Every chair in the room was filled with someone having chemo. The poor nurses where running around like lunatics and to top it all off a person was being brought to have chemo from hospital of all things.

This poor man was wheeled into the chemo suite on a gurney. He could not walk as he had, had a stroke from the cancer in his brain. They finally lifted him off into the chair. He was looking at Carly, my sister, and I with this very sad face. He began to cry and it was heart wrenching to watch. It brought back so many memories of when my mom was so debilitatingly sick. When she could no long walk and she had to be pushed around in the wheel chair. The bravery shown towards this man from his family was such a mirror of what we had done just months before with my mom. The encouragement, love and support but when turned away the breaking heart and sadness that filled us all because of the reality that she was on that stair way to heaven. It made me really sad because going through what I went through with my mom I knew in my heart that the state of this man meant he didn’t have very long to live. And no I am not being a pessimist. I am being a realist. You need to be positive and have the right attitude about it all but the place you cannot dwell in is denial.

Over and above that one of the ladies was crying hysterically and the lady next to me was getting sick into a bag. The emotional tension in the chemo suite that day was just far to much and completely emotionally draining.

The chemo bag was hung up and it was dripping so slowly and I was checked on every 5 minutes. Everything went swimmingly and I was chomping at the bit to get out of that chemo suite that day as it was just too hectic.

On our way out the family of the poor man was sitting outside the chemo suite. Carly was talking to them when I came out and we both offered our support during this time. Carly left her number with the family. We found out he had stage 4 lung cancer and passed away sadly 4 weeks later. Its moments like this that I need to remind myself its not my journey, its not my cancer and I will be alright at the end of this. I need to believe it and I need to stay as positive as possible.

Sailed through week 2 and was ready and waiting for round 3. Its old hat now. Having bloods the friday before makes the anxiety a little easier as I know I will have chemo on the following Monday. Arrive, get hooked up, have chemo, go home and have a nice nap 🙂

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Again I managed well after round 3 and was ready to face round 4. I got to see the doctor today. He said he was pleased everything was going well. I mentioned that I had started feeling a numbness in my fingers. He said it usually only starts from the 7th round so we need to keep an eye on things and if it continues we will need to consider a dose reduction.

Lowering the dose has no impact on the efficacy of the treatment. International standards allow for up to a 25% dose reduction and if anything he would consider a 10% reduction.

After effects of round 4 were a little different to the first 3 weeks. I had a hot flushed feeling in my face on the Tuesday after the Monday treatment, Wednesday and Thursday I felt strange. Not quite nauseous but just not right and very tired. This feeling was nowhere near as bad as the red devils as I was able to get up and about but things took a toll on me.

While typing my blog that week I noticed a whole bunch of hair on the desk. Not thinking anything of it I brushed them off. I have been playing a lot with my hair now that I have hair. I carried on typing away and noticed again a whole lot of hair on my pc and desk. I felt my heart sink, that terrible sinking feeling. oh no it wasn’t. Please, please, please tell me it wasn’t. I tugged at the front of my hair and a whole bunch of hair came out. A shock wave radiated from my solar plexis, it was so unexpected. why, why, why. I’ve done my time with no hair, I’ve even packed away my scarves and given the wig back. I was done with having no hair.

20150519_173746_resized Second round of shaving

I was so emotional over this. I was so thrown by this by this really insignificant thing of loosing hair. It grows back silly, it grew back don’t be such a cry baby. The tears just streamed down my face. I was so upset that my hair was falling out again. To be honest I was more upset about my hair falling out this time around than I was about my hair falling out the first time around. I think I had convinced myself so much that my hair wasn’t going to fall out it was just going to thin that I was living in denial.

The tests came back from my additional HER2 testing that was done and this testing is more accurate than the testing done before. This is done by a computer. And so the results have now come back negative. When I got this information I was so confused. How can we go from HER2-, to HER2+ back to HER2-. It was explained that the initial biopsy perhaps didn’t get any cells with HER2 in them and then the tumour that was tested when it was taken out was tested by human eye and so with this more accurate test done by computer it gives one a better indication on HER2. I was so confused I didn’t know emotionally how to feel. I was obviously glad I was HER2- and glad that I didn’t have to have herceptin which has its own list of side effects. But just couldn’t understand how in todays medicine we can go backwards and forwards like that. I am yet to ask exactly what the figures were partly because I don’t want to know if I am mildly positive as in this case medical aid won’t pay its best to either be completely negative or completely positive.

And so with the dynamic journey there are always speed bumps on the way. Its a journey of acceptance, releasing control and learning the best possible way to go over these speed bumps. Keep a strong mind, keep a strong heart and make sure your keep your attitude in check. Don’t let this disease consume you. You are bigger and you will beat this, one day at a time, step by step.

God grant me the serenity to accept the things I cannot change

I call myself a spiritualist, not conforming to any religion as such. I am often approached by the most unlikely people to give me the most meaningful messages about faith, God and prayer. I often think about these messages that are given to me for a reason and I always stop to listen to what these people have to say. Usually car guards funny enough. All messages of having faith in Jesus or my pastor, to keep praying for total healing and that I will get through this.

I was even asked one day (by a car guard) if I was Jewish as I had a scarf on my head. When I said no I have cancer the guy practically held my hand all the way to my car giving me encouragement that Jesus and the Lord will make me better. I find this inspiring.

I wasn’t able to drive for 2 weeks after my op which was a bit of a challenge. I am so independent and so there was a wee lesson in this for me.

We went to have our follow-up appointment with Dr Reddy. He was very happy with the way I was healing and that no haematoma had developed. Haematoma is a collection of blood under the skin. If not monitored could get infected. He removed the stitches both under my arm and on the breast and removed the massive plasters and put on smaller ones.

When going through all of this it is immensely encouraging to get positive feed back from your doctors who become almost like god’s as you entrust them with your life and well-being. A little boost to move forward with the treatment.

The results came back from the lab regarding my tumour. Like I said 21 lymph nodes were removed out of 36 and 5 were found to be fybrotic which means the little red devils kick the diseases butt. My tumour was found to be DCIS (Ductal carcinoma in situ) which meant the little red devil worked its magic on the tumour itself as originally it was Invasive Ductal carcinoma. All very positive results. It still showed that I was ER+ and PR+ but the one little thing that had changed was HER2 – results I had received from my original biopsy was now HER2+.

HER2 is a growth promoting protein which is not great as it assists in cell growth which is not what we want when we have cancer cells growing in our bodies. It makes the cancer more aggressive. On the plus side there is a great targeted therapy that has been developed call Herceptin which is given once every 3 weeks for approximately a year. It is also administered through the port so I guess I will still be bionic woman for a little while longer.

I felt ok about this information in the doctors rooms but as my very imaginative brain got working I started to feel like I had been hit by a freight train. I felt very sorry for myself and was overwhelmed by the fact I would be visiting the oncology rooms for another year after all my chemo. Why did I have to go through this, why could I just not be told what I was originally told. I wanted to be finished with chemo, onco rooms, ports, needles and all of that when I had my last treatment. I had a good old cry.

I know that when I falter it has such an effect on my family. I watch how my children are affected, how my husband struggles and how it puts my sister into a spin. It’s really difficult to keep things under wraps, keep all the emotions at bay all the time and to constantly say “I’m doing ok” when in actual fact I’m not having a good day. This HER2+ thing had put me in a dark place and the looming cancer cloud had once again found residence over my life. I would need to discuss this further with Dr Narsai my oncologist to get more information regarding it.

I always feel uplifted and motivated after seeing Dr Narsai. He really has a wonderful bedside manner and really knows how to discuss things with me. He said he would need to motivate for the HER2+ treatment – Herceptin as each round costs………. wait for it, hope you are sitting down………. R24 000 a shot. Yup that’s correct R24 000 x 12 = R288 000.

So for this reason the medical aids (not my friends at the moment) are very reluctant to pay for it. What they require is more testing to be done on the tumour. I was quite shocked that they still had my tumour. I found out that they have a whole “storage” place where they keep everyone’s specimen’s. Can you actually believe it and its for this exact reason. So if further testing needs to be done they can do it. This takes 2 weeks for them to grow the cultures.

Dr Narsai then went on to say that we have had the best possible results we could have hoped for from the treatment I have had. I was over the moon to hear such wonderful news. Such encouragement to forge onward. There is a 4 week break between the op and the next chemo round which frustrated me a little but it was important in order to let me heal properly after my op.

Next round of chemo – Taxol is booked for the 20th April. I will be having 12 of those, 1 a week. 3 months of chemo oh my word. I really needed to get my head wrapped around that.

In true style we celebrated the forth coming chemo and results of my op with a little delicious golden bubbles with my wonderful friends.

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My hair had grown back beautifully with the 2 month break between the little red devils and taxol. It was so nice to finally have a little mop on my head. I packed away my scarves and gave back the wig my friend Clair had so kindly loaned to me and was ready to rock this new treatment.

The 4 weeks went by in a flash and I was sitting in the chair again getting the run down of side effects. Possible hair loss or thinning :(, possible nausea, fatigue, peripheral neuropathy (which is damage to the nerves causing weakness, numbness and pain) oh joy.

I was hooked up and ready to go for my first round. They also said that some people have a reaction to the drug so they would need to keep a close eye on me and run the drip slowly. I was given an antihistamine injection before hand and they give me steroids and anti nausea in the drips before the chemo.

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I don’t often get chatting to people in the chemo suite. Most people keep to themselves but I got chatting to an elderly couple. The husband George was having chemo and his wife was his chemo buddy. And ever since then he comes every second week, we keep each other entertained for the time we are there. I have also made friends with 2 elderly ladies, the one lady comes for chemo and her friend brings her along. They are a hoot and always keep me giggling. They too come every second week. It’s nice to see familiar faces when you go for treatment and special bonds are formed in these situations. There is a deeper understanding between the cancer fighters and the supporters. We kinda just get it, get the emotional upheaval, get the pain and suffering, get this very hard road we are walking.

I came across this website of a woman who had designed cards for cancer fighters. It really made me laugh as they are so true.

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Got a little side tracked there ha ha sorry. They say you get something called chemo brain which I didn’t believe was real. Well it is I promise you my brain does not function like it used to. Hey just another thing to add to the list of this delightful journey 🙂

So back to round 1 of my Taxol. The chemo bag was hung and started at a very low rate. I was chatting away to George’s wife when I suddenly I felt my heart starting to race and my face get hot. I called the chemo nurse who quickly gave me steroids into my drip. The doc came to check my chest and pulse but all seemed to have settled down quickly. It was actually quite a scary experience. It felt like I was having a heart attack not that I even know what that feels like but assumed would be like.

Oh great now I’m flipping allergic to the damn meds 😦 what now……..

I had to wait half an hour before I could continue with the chemo but when it started again everything seemed to be fine thank goodness. My first round of Taxol was complete and I was ready to go home.

I was told the side effects are more tolerable with this chemo but I had nothing to go on but what I experienced from the red devil so I was quite nervous about what was to come. What was fantastic is the antihistamines I was injected with made me so sleepy that I managed to have a 2 hour nap once I was home.

Now I can start ticking off these chemos and look forward to the end of this whole treatment. It seemed like a mountain I still had to climb but I was soldiering on.