This Little Light of Mine

I have found that being sick very lonely and definitely the hardest part of this entire journey. I mean this in the sense that no one else knows exactly how terrible you feel or how much pain you are in. People can empathise and you can make comparisons with various other medical situations to give people some sort of idea and measure, but it’s just not the same. There are also SO many medical terms and tests etc that often it’s just so exhausting explaining things to people that I would rather just tell someone I’m fine than go through the details! Towards the end of my ABVD chemo cycle (about number 9 out of 12), I met a very precious little soul, Ashton Botes (Bash). I was on Facebook one day and noticed posts by mutual friends on my timeline wishing her good luck for her first chemo. Without being too creepy I sent her a message and it’s been the Two-pack ever since!

Bash was diagnosed with colon cancer in April this year and her story is pretty similar to mine - she was fit and healthy, and there isn’t any history of cancer in her family. Not your ideal candidate for colon cancer at 23 years old! We just clicked from the start and she is amazing. We have a love for tea and treat dates, Lou Harvey, Rosehurst and all things floral! The Sister’s call it the naughty corner when we sit and have chemo together and we chat NON STOP for the entire session which is usually about 6 hours. Bash has the best sense of humour, she is so optimistic and smiley, we laugh and make bad cancer jokes; we comfort each other when we go through rough patches and we just get each other. I have had a few other very invasive medical procedures to try and offset some of the other chemo side effects for the moment I’m not comfortable sharing them with the world. It has been an exceptionally difficult year for me and I’m just trying to deal with one thing at a time and it’s been such a blessing to have a friend who can relate and empathise. Thank you for everything Bash- you are a little gem and I will always treasure you <3

 

 

The end of a 6 hour chemo session - super swollen face, legs and feet, my shoes were stuck on!

 

Hair today, gone tomorrow...

 I wanted to write a quick little piece on one of the most despised side effects of chemotherapy, hair loss. This is has nothing to do with vanity but it fuels stigma – it reveals to the world that you have an illness that you would rather keep private. If you see me in the street you would never know that I have cancer, I am not dishevelled or sallow skinned- it’s not like the movies! I look fairly healthy and my hands, feet and face are puffy from the Cortisone (only 2 more weeks of this!) so I look like a little chipmunk. Some days I look completely “normal’’ to the world and yet I can barely move my feet to push a trolley around the supermarket and I feel completely out of body- like I’m floating. I get home from a mini grocery shop and I am SO fatigued that I will need a 3 hour nap to be able to function again afterwards, my world is in slow motion at the moment.

 When I had my first consult with Shane he mentioned that I would lose all of my hair, this was so devastating for me as I just loved my long hair, I cried and cried and cried. Everyone close to me knows that it been a really big deal for me, we are getting married on the 7^th of March and I have always dreamt of having long hair on my wedding day. I know that many of you will read this and think that I should be grateful that I’m alive and on the road to remission and that hair loss is completely superficial, but I can’t help but feel sad about it.

Not all chemotherapy makes you lose your hair, some makes yours grow thicker and some only makes you lose underarm or leg hair! The strength of the chemo has NOTHING to do with whether you will you lose your hair or not- it’s purely the drug or drug combination. Someone said to Bash the other day that her chemo obviously isn’t very strong because she hasn’t lost her hair- it made me so mad! That’s the absolute last thing you should ever say. People also generally have something to say to me about my hair when they bump into me, trust me I am VERY aware about what’s going on with my hair  but I am also fighting to stay alive and trying to get through the rough days- could you rather encourage me and tell me to keep going?

During my first consult with the Sisters at Hopelands, they tried to encourage me to cut my hair short so that the hair loss wouldn’t be as big of a shock. I decided to keep my hair long for as long as possible so that I could make the most of it. My hair stuck around a lot longer than anyone thought it would- okay granted I had extremely thick hair to begin with- it started thinning slowly in the beginning but it only got noticeably thin towards September. I then cut it short and I can still tie it up into a tiny bun or minute ponytail. I haven’t lost my eyelashes, eyebrows or any other hair on my body completely but it is soft and thin. My Mum bought me a wig right in the beginning in case my hair fell out quickly but I have a love hate relationship with it and it spent a long time crumpled in its bag on my car floor. It’s hot and poofy and I feel like a Texas housewife when I wear it- all hair sprayed and teased! It’s a beautiful wig but it just doesn’t sit well on my head because I still have some of my own hair left. It started getting two little bald patches on the sides of my hair so I resorted to wearing pretty head bands but it has grown back now (yippee)! I can also wear clip-in hair extensions so I still have the long hair feeling. My current chemo schedule doesn’t affect my hair (but I have been much, much sicker) so I have lots of sweet little baby fluffy hair coming through!

 

 

Gav modelling my hair extensions! Ready to join the Redneck clan ;)

 

xxx

I won’t be writing again before Christmas but I hope you all have a very special time with your loved ones and enjoy each moment. I will be having chemo tomorrow morning sadly but I am definitely going to make the most of Christmas with my precious family ,even if I can’t stomach the gammon!