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.

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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.