A perfect head

Jess went into the store where I get my wigs from today and they recognised her as my sister. Apparently, apart from the couple of ladies who know me on a name-to-name basis, the girls in there refer me to ‘the really pretty girl with the PERFECT bald head’ ha ha ha ha… sorry I think this is hilarrrrrrious! Let alone a lovely comment too!

So… Its 10pm, saturday night and I am staying at mum’s house tonight as Adam is at his brother’s bucks night!

Mum and John went to bed at 9:50pm and I decided I may as well go to sleep too because I am pretty sleepy and feeling sloth like. Also.. Jess is out at a party tonight so there’s another reason to be bored and I am feeling pretty sick of TV lately. May I also add, I took some drowsy anti-nausea tablets about 10 minutes ago and they work pretty fast so I may not even complete this post tonight.

A few interesting things have happened this week.. (I am starting to feel drowsy already…) As of wednesday I started to feel like I was heading towards feeI normal again, just tired and a few splitting headaches every now and then, a bit of weight gain due to bloating and puffiness which is extremely uncomfortable and never fun – it sounds strange for that to be me on good days..! I had my review session with my Oncologist on thursday afternoon.

——I’m falling asleep and will continue this tomorrow!——-

Back again… So anyways, as I was saying I caught up with my chemo doctor on thursday and had put on three kilos, no big deal really. I have to expect a bit of that and by no means should I be worrying! The doctor was actually happy about the weight gain as I was underweight 3 weeks prior. We kept the decision for a lower dose of Carboplatin for cycle #5 due to my body freaking out last cycle. Mum asked her a question which she has asked a few times before but I guess its one of those things you just really want to know? and should be able to understand 110%…

Mum: So… I am really sorry to ask this again, but.. What can we do to find out this is all really working?! Is there a scan we can do to look for any cancer cells left? Is the chemo going to be worth all this?!?!

Oncologist: No, no thats fine.. Really, there is no way to tell. The chemo/radiotherapy treatment Rachel is planned to have is the furthest we can push her for her young age. It is a standard procedure for cancer patients and it is 90% proven to work. Even the best of best scans will not be able to pick up  cancer cells as they are microscopic in size. Its one of those things that if they were still in the body, they would grown and you would once again find them through checking and scans which Rachel will constantly be checked for, for life. The chemotherapy targets the whole body where as the Radiotherapy concentrates on the tumor area.

Mum, Jess and I sat there just nodding in agreement. I guess I always thought cancer patients were either sick for life, died or were completely healed? I guess its different. No matter what I will live my life the to the fullest and do everything I can to resume a normal life. After I discussed this with Adam later thursday evening, He put it in a really good perspective for me.

‘Once you are at that stage after chemo and radio, you really will just be like any other person. How does anyone know they have cancer cells living in their body? They don’t…. you will be like the rest of us. No one knows whats going to happen to them and until then, you have to live your life.’

Wise words from the best guy I’ve ever met – I love you Adam! And really, its true.. You could be hit by a car tomorrow and suffer consequences for the rest of your life, die or be injured for months on end. I can’t dwell on it and I won’t.

On a happier note, on thursday night Adam and I attended a photography exhibition in Mt Lawley which Adam had work submitted to. When we got there, our friend Gemma was at the door and said ‘you have a little something next to your name in there..’ We continued to the exhibition area and after looking at some of the other photographers beautiful work, we noticed next to Adam’s name and work, there was a note added above his name – ‘Curator’s Choice Award!’ WOW! We were blown away… Adam’s work looked so amazing up there.. So clean, fresh and it really told a story. He also won an awesome trophy and gift voucher which was so unexpected! I am so, so, so, so proud of him. After everything we have been through, when I was diagnosed Adam moved majority of his photography stuff to our home study and has been working from home everyday to be close to me just be there if I need help. He pulled back on about 3/4 of his work to put his mind at ease as he was having a bit of trouble with creative blocks in his mind – making it really hard for him to have inspiration and enjoy his job which he loves. When it came down to feeling ready to get back into things and give it another go, whilst understanding my routines and how I would be feeling.. He literally fell into so many amazing opportunities and has done exceptionally well. Good things really do follow bad things and I feel like we are going to continue to do this after our life struggles. Life is too short and all this positivity has blown us away in how well its all panning out for us.

If anyone is interested in checking out this awesome photography exhibition based on ’60minsnapshots’, it is open to the public for the next couple of weeks @ Slaughterblouse in My Lawley. See flyer below for details.

Chemotherapy cycle #5 was the next day, friday. Up early to apply my numbing cream to my port and I drove myself in this time. I was slightly early which was good because I got through at about 8:15am. Usually I am waiting around till about 9:30am before I have been weighed, plugged into the IV system and ready to go.

Skye who looks after me through clinical trials was absent on friday so I had another lovely, young girl – Martine look after me. Not long after talking to her she mentioned ‘yeah when I was on chemo’…. I was shocked!? She is 28 years old (same as me!) and 4 years ago she had been diagnosed with Ovarian Cancer. We had so many little stories to share with each other and I could tell she was itching to tell me things that she had personally experienced and obviously read several things about myself in paper work before she met me. She also had IVF, still has her eggs frozen and doesn’t know what to do with them… She had a beautiful, thick head of hair (she said it grew back a lot darker blonde than it was before chemo!) and discussed lots of feelings and emotions that may happen after chemo stops. Martine said I was really, really lucky with my weight as she gained 20kgs when she was going through chemo. I felt so much for her.. I cannot imagine anything worse than feeling the way I do, plus dealing with an extra 20kgs. Thats just so unfair. But she is looking amazing now! She also used to work as a Lawyer, and obviously now… She is a clinical trials nurse. As I have been interested in doing some kind of medical related job when I am better, I asked her lots of questions and apparently I could do something similar! At least I would have the personal experiences and emotional stuff to go along with it all… We will see!

At lunch time, my good friend Cat came to visit me (the girl who I went to TAFE with, who works upstairs of the hospital). She always makes me feel so much happier. Such a smiley, friendly girl who understands health issues more than most people as she has her heart problems. I love her to bits! (Hi Cat if you are reading this!)

Also blessed with the presence of Mum, Jess and Adam from about 10:30am till 1:45pm when chemo was finished, we all went into Claremont for lunch at a yummy sushi train place I go to often. I felt my exhaustion already kicking in and was worried I was going to fall face first into my meal. I went pretty much straight from chemo to lunch and took my bandana off in the car, so I was out with my bald head as I do pretty regularly, but being in Claremont – a high class area, I did notice a LOT of staring from people. I don’t mind, I suppose I would be concerned seeing a young girl with no hair and wonder if she was ill or just pulling off a cool hair-do. Its more when I get examined for more than 2-3 glances is where I start to get a bit uncomfortable – maybe they think I am a crazy, tattooed, rebellious punk or something.. nope, I’m really not!

Once I got home from lunch, I got myself upstairs and slept solidly for 6.5 hours! I got up at 9:15pm and felt pretty whacked out realising I had missed the rest of the afternoon, but oh well. The only reason I even woke up was because Adam got home from the gym. Apparently he had come to check on me several times and I had no idea, I was so out of it. The only option for dinner was McDonalds, we had no salad-ish foods which is what I wanted, everything was shut around 9:30pm (thanks Perth City!) and I was just hungry. I ate half my cheeseburger and threw it out, thanks to the Dexmethasone it throws my eating out. Bloats me, makes me feel really full so when I eat I can hardly ever finish my food, oh and even more importantly, throws my blood sugar levels out the window, it makes my levels so high which already is a terrible feeling on its own without chemo. Speaking of which, my dose of Dex has been increased from 3 days to 5 days now to try ease off on side effects. Great!

So being excited about my next chemo (cycle #6) coming up… I am so excited, but still I guess I kinda forgot that its not really my last chemo. I am on chemotherapy treatment every three weeks till October. Just one of the three drugs though, which doesn’t have majority of the nasty side effects that the other two drugs have, also, chemo will take 30 mins instead of 6 hours! Thats something to be happy about for sure… I am looking forward to my appointment coming up on Valentines day with my breast reconstruction surgeon. I want to know all the bits and pieces of what is going to happen when I have the huge operation later this year… I get a bit nervous about the fact they will be pulling my back muscles around to my breasts. Thats kinda creepy but I am sure they will look amazing. I can’t wait to have two boobs again!

Now for some more photos… Firstly here is a photo from thursday evening.

Saturday morning – my Neulasta Injection (immunity booster)

And again..

Brooklyn cuddling mummy

Being day 3 of cycle #5 I am actually feeling pretty okay.. days 3-5 are usually my worst but I am going to kill it this time. I am dressed in my gym clothes and ready to go have a workout hoping for it to replenish me with lots of energy!

Lets see how I am tomorrow…

Enjoy your afternoon friends. xoxo

A perfect head

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