First radiation appointment

I searched the internet for days. I could not find anything about the very first radiation appointment. I didn’t want information on the first radiation session but on the first appointment.

What happens when they say they measure you? What do you wear. Do you have to get undressed (you know, for matching underwear’s sake)

So, for the sake of keeping record and someone else searching for the same answer, here goes.

It is not the same as getting radiation on your face. This I know from when Tommie had skin cancer and got radiation for that. There they make a mask that you will wear with every session. The mask gets fixed to the table so that you can’t move. Since I am claustrophobic, I am hugely thankful I don’t have to do that.

I met up with one of the nurses, who went through the treatment with me. How many sessions and what it will cost. Let’s just say that I am thankful that we have medical aid. I signed many a form and got some advice on ointment I could use. I was also told that I could not get any water on the radiation site, which basically means I won’t have a proper bath for that seven weeks and four weeks after radiation stops. Here’s to hoping that we have a long winter.

After that I went to radiology for a scan. Well, they gave me a little piece of cloth that is supposed to go around my chest. I will wear this at every session. I found it hilarious. There I was lying with said boob cloth and they pull it up to take measurements and put it back. Over and over again. I mean really….were they trying to hide my breast from me because clearly they needed to see. (Yes, I know most people feel more comfortable having it covered) Also, once radiation actually starts I will feel more comfortable being covered too).

My arms were up in some contraction and off I went into the machine. Lights were used to make sure I was correctly positioned. Once they were happy, I got my very first tattoo ever. Then three more. Just four tiny dots to make sure I lie in the same position every time.

Four tiny dots that will a permanent reminder of what I have been through…

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End of an era

I remember his very first rugby match.  Passionate from the very start.  I remember one little player of the opposing team running through all the players on the field.  It was Quintus’s turn to sit next to the side-line.  He looked on, shouted and when that player came past him, he ran onto the field and tackled him.  He couldn’t just stand by and watch.  That feels like yesterday.

Then I blinked and he played his very last hockey match.  With the same passion and love for sport as when he started as a little boy.

I’m going to miss watching him play.  I’m going to miss seeing him do what he loves.  I’m going to miss the passion.

Don’t blink.  It’s all it takes for them to grow up.

16 May 2018 – A happy day!

This day will forever be etched in my mind.

I sat there, on my favourite chair, with a smile on my face the entire time. The four hours flew by, no time for Netflix or music. We celebrated with the most divine muffin and coffee that my mom and dad bought.

I know it’s not over just yet but this part of my journey is.

I remember that first day. I did not know what to expect. I was trying to be so brave. I was so nervous. Seeing that red chemo slowly move through the IV and into my chest was scary. I remember my mom taking a video of it.

Did I leave scared? No! The nurses are amazing. Actually, no words can describe them. Fellow patients become friends. Chemo day feels like a visit with friends. No-one feels sick on chemo day. It’s just a day to catch up on news with fellow patients. Patients who are going through such a tough time in their lives, yet no-one complains. If you have to go back on a day that you are not doing well, they gather around you and give you support and advice.

It’s been an up and down road. Two hospitalizations (talked myself out of a third hahaha), extra fluid and nausea drips at oncology. A change in chemo because I’m allergic to the second type I got. They prefer not to give the chemo I ended up on but since they had no choice, I had to put of with the side effects of this drug. It was horrific and I can already feel it starting after yesterday’s chemo. It was the first time that I felt I would rather just die. I truly do not wish that on anyone. This is the final stretch. My body just has to make it through the next two/three weeks.

“Toughness is in the soul and spirit, not muscles.”

I could not have made this without my parents. They’ve been amazing. Right from late night talks, medication when I’m not well, shopping, driving the children up and down, just everything.

My children. Every single on of them. I’ve had to do nothing at home. They took over completely. They made sure we had what we needed at home, they cooked, took care of me. Took care of the dogs. Themselves. I am blessed.

Tommie, for coming home on chemo days to help with the children. Liesl, who cooked every single chemo day. You were a life-saver in more ways than you know. Natalie, who spoiled us with food and sweets.

My dear soulmate, Wenchy who drove through to support me after my op and to spend a chemo day with me.

My friends Wenchy, Sarah, Shireen and Heather who went on a girl’s weekend away to take my mind of things. All of them and Jax who continued to walk this road with me every day.

My brothers and sisters (because they aren’t in-laws) thank you for all you did and your love and support every day. Thank you Douglas for being here to drive the kids around when I could not.

My clients, who understood and did not put any pressure on me. I know I’m going to forget people and that’s why I should not start with names, so to every single person who dropped by, sent a message, prayed for me and took extra care of my children when I wasn’t at their sport event THANK YOU. Every tiny deed made a huge difference to me and did not go without notice.

To my oncology nurses. Thank you for the laughs we shared. You put a smile on my face the moment I walked into oncology from that very first day. Even when battling to get the needle into the port, we could share a joke (or swear at the doctor) Thank you for being my “call a friend”. Thank you for caring about ME and not just the cancer patient. I’m actually going to miss you! It takes a very special person to do what you do

T
My very last chemo day.

On that first day you walk past this bell and know that’s what you want to do. You WANT to ring that bell. When fellow patients friends hear it’s your last day, they say with a smile in their eyes “You get to ring the bell today!”. It’s what you look forward to.

16 May 2018 was MY day to do just that.

So much to say but …

So much has happened since my last blog post(s). I’ve had so much to say but yet no words to do so.

I’ve been admitted to hospital twice.

Once with chest pains. My blood levels for blood clots were very high and I was treated for that as well as a lung infection. I had a CT scan done (for blood clots) and thankfully no blood clots were detected. However, the did see a 8 cm growth in my throat. I had a biopsy done and I was so scared. The biopsy I had for my breast cancer was definitely up there with one of the most painful things ever and I did not look forward to having one done in my throat! However it wasn’t too bad and they didn’t find any cancer cells! The doctor is still worried though and it will be removed between finishing my chemo and starting radiation.

I was then admitted two weeks later because it seems I’m allergic to the chemo. I got four sessions of AC chemo, which was fine and then I would have had 12 sessions Taxol. Halfway through the Taxol treatment, I got the worst rash. It actually started after about three sessions but got progressively worse. After the 6th treatment, my hands were so swollen and covered with painful red blisters and marks. I was to be admitted for a week but thanks to the needle that pulled out of the port and me having to go to a different hospital to have it fixed, my oncologist decided I could get my medication at oncology throughout the day. That way I could sleep at home, which is WAY better. My mom was also in hospital that same week and I spent my days between her and oncology. Thankfully at the same hospital. Even though I walked around with a needle inserted to my port for the rest of that week, I had no problems with it. HUGELY thankful because I would have hated getting IV treatments three times a day. Getting poked to access the port is no fun either. That would definitely count as my worst week yet. I was tired, couldn’t sleep. It was just bad all around.

Tomorrow I start on a different chemo. One we hope I won’t be allergic to. Instead of 6 more sessions (which would be 6 weeks), I will still have a six-week treatment cycle but only two chemo sessions. They prefer not to give this to patients, as it is hectic on the body. I’m not looking forward to it but I do hope that my body will cope with it as it has with the previous two. Okay, except for the allergy thing. I’ve been doing okay really.

I feel like I have going through life on auto-pilot. Not really thinking about what I’m going through and how it is affecting my life and those around me. I fear the day that it will all hit me. When I truly realize that I actually have cancer and I’m fighting a horrible disease. I’ve not been angry, upset, depressed. Just taking it day by day. It could be because I have such great support. I could never thank my parents enough. Even though my mom is going through this as well, she has been tremendous support. My father…I could not put into words what he has done and how much he has taken on since our cancer diagnoses. He is an angel in disguise. I could NEVER thank my children enough. They have been my rock.

Here’s to hoping that tomorrow will go well. Second last one then!

“Courage is not the absence of fear, but rather the judgement that something else is more important than fear.” – Ambrose Redmoon

Why you should stop telling cancer patients to be positive.

This has been bothering me for a while.  Telling a cancer patient to be positive.  Be positive that you will get violently sick?  Be positive that you will be constantly nauseous?  Be positive that you will have a headache that no pill helps for?  Be positive that you lose feeling in your fingers, which makes working difficult?  Be positive that you will be so tired that waking up and staying awake feels impossible? Be positive that you have had surgery that leaves you feeling less than a woman? Be positive that you will lose your hair?  That same hair that YOU spend so much time on washing and styling? The hair that makes you want to hide at home when you have a bad hair day?

All that must make a cancer patient feel positive?

Do you sit back and think how much pressure you put on a cancer patient when you say that?  It makes it difficult for a cancer patient to admit that she is having a tough day.  That she is not feeling so good.  It makes that patient feel she has to smile so that no-one tells her to be positive.  Even healthy people feel down some days right?

I can tell you that I appreciate it when someone says I am so positive.  I am.  I mostly feel this is a page in my book and not even worthy of a chapter.  I have days where I feel it is a separate book though.  I story on it’s own.  Where I’m strong, fearful, thankful, angry … all at the same time.

This “be positive” thing didn’t bother me so much when it was just me.  Now it’s my mom though.  My mom having to go through what I’m going through.  My mom having to get chemo to fight a horrible disease.  Not flu.  Not bronchitis or a broken leg.  Cancer.  Cancer where you feel so darn well but then end up making yourself sick by going for chemo.  No, I don’t expect her to feel positive.

Yes, I get where everyone is coming from.  It is always from a good and caring place. Should I see my mom lying in bed for days on end because emotionally she can’t cope, I will get a professional person to help her.  I would not tell her to feel positive.  I would tell her to be strong.

Yes, being positive makes it easier to cope.  It does!  If I had to sit in a corner and cry it would kill my kids.  It would hurt my parents and Tommie.  It would not be good for our family.  It would make working difficult and generally life would suck.  I know this is why people tell you to be positive.  I get that.  Please don’t think that I’m not thankful.  Again, I know it comes from such a good and caring place.

Just sit back and think how it affects a cancer patient though.  Someone who normally does feel positive and thankful for what they have and how “healthy” they actually are.  It makes it so difficult to admit that some days are just really crap.  That emotionally it feels too much.

I am thankful.  Hugely thankful.  It could have been so much worse.

Today though, today feels crap.  I didn’t want my mom to go through this.  I’m proud of her for choosing to give herself every possible chance there is to fight this.  She is one strong woman.  It’s okay when she’s not as well.

I’m not a hero.  Just a normal person, fighting for my life.

#fuckcancer #bestrong

Birthdays are special

Happy 12th birthday Zander. I am so very proud of the person you are. You are compassionate beyond your age. You love so deeply. You have trust in people and see the good in everything. You have a sweet, pure heart. I hope that regardless what life throws at you, you will always choose to see the good.

I’m sorry for not being able to give you the best birthday ever. You deserve the best, every year. Maybe tomorrow we can have the Wimpy breakfast you are supposed to have on your birthday. Maybe I feel better tomorrow.

For now though, sorry that you had to walk into our room and see me sleeping most of your birthday. I found the photo on your phone and I wonder how many times did you walk in to check on me.

Happy birthday sweet boy.

Next year, I promise.

3rd chemo today

I have said from the start that I want to write about my experience as something to read back on but also to just maybe help someone who has to go through this unknown.

I’ve been strong. I am still strong. I’m not falling into the depths of despair. No need to send help. I am feeling down though. It’s only the start but I just feel robbed.

I feel robbed of time. I can’t remember when last I’ve been able to just watch the kids swim. Zander used to insist. Now he doesn’t even ask. I don’t do things for the children anymore. They do things for me. I have so much work to do. I need time to work and time to rest at the same time. I don’t know how I am going to cope with added school activities. So thankful we live close to school.

My body is giving me a little f#ck you today. I don’t blame it. I mean it’s putting up a good fight and all.

Tomorrow will be better.