I slept better! Thank you Lord! What a blessing… I am feeling very flat but better. Today is another big day of errands and responsibilities. That is one thing I am noticing as Marc has returned to work. All of the little things he was taking care of for me have now fallen on my to do list.

Since I was diagnosed last year we have been on the big holiday break, now it’s back to normal life citizens. No wonder I am feeling it more,  I am doing more so it makes sense.  I am no longer being shielded by my super husband.

My back and legs are so sore, like I have a viral illness coming on, but I am sure it’s the chemo. My tongue is so thick and sore, my hands and feet are swollen and still so sore too.

Today was our annual trip to the paediatrician with Sam then I take him to school and it’s off to the psychologist for me. This has been really helpful for me to just get clarity on what is going on for me. Sorting through all of the crap has been really necessary.

This journey has been hard enough without carrying around fear, avoidance, facing your own mortality and all of the weird places your mind goes when you are told you have cancer. If you know someone who is in his place and they haven’t reached out, please encourage them.

On the way home I am stuffed but need to do the shopping – if my family is to eat I need to get food. I finally get home and fall into bed for a rest. I get up as the kids get home from school and start dinner, do some laundry etc. All the usual Mum stuff, as I am sure most of you Mums (or stay at home Dads) can relate too.

By early evening my legs are so painful and agitated I can’t stand it. The doctor calls it restless legs. I am so tired I just want to sit and be still but my legs jump about and feel like there is a little electricity party going on in all of the nerves. Each time it starts I need to shake my legs to stop it. Not relaxing!

I go to bed and medicate myself again with Endone and Valium tonight. I must sleep…. I make a note to ask the doctor if it’s ok to take Valium with Endone as I slip into a thick and blissful unconsciousness.

I woke thinking it must be morning and I looked at the clock to see 1145pm!!! I almost cried. My back, knees and hips are aching so much I am beside myself. Lord I need you to give me rest!

The night creeps along so slowly, I watch some TV as I just cannot lie there staring at the ceiling anymore. The TV whilst crappy is a welcome distraction from the pain within my skin.

At 6am I drag myself from bed. It is the first day of school for Moni and Sam has a day at a friends house. So I crawl about the house getting things organised. It’s times like these when I want to give a shout out to Mums all over the world. No matter what is going on you just get it done.

I slink home from the school run and fall into a heap on the bed. The heartburn is so bad I feel like I have hot coals in my chest. At least I know what it is now, last cycle this really scared me. I am nauseous, flat, hot, my thought world is so fuzzy I am just so YUCK. I can’t stand myself…..

I slip in and out of troubled sleep until the afternoon. Then I need to get up as the kids need to be picked up and my sister who has also been diagnosed with breast cancer is coming to stay the night in preparation for the genetic counsellor tomorrow. She is really not wanting to go down this path but is doing so to help me.  How lovely is she?

She arrives and it is great to see her but I am in so much pain I can’t enjoy it. We try to sit and talk on the couch but my legs are aching so much I can’t sit. In the end we both go to bed.

I don’t want to have another night awake so I try not to think about it. Yeah right as if that’s gonna work 🙁

So I am off to bed, hoping and praying for some rest. Also praying that tomorrow will be a good day for us. Each one of my sisters is feeling differently about the genetic counsellor. My sister, who was diagnosed 9 years ago and has had a double mastectomy and oovectomy is worried about implications for her daughter and sees it like “what have I given my children?”

I on the other hand feel like “it is already done and knowledge is power.” My other sister who is cancer free is thinking what do I do with this information. Do I wait or do I act?  Each situation unique, the related decisions are tough and so personal.

This is new and very tricky terrain, I respect and value where each of my sisters is coming from. So I pray that tomorrow is a good day, a helpful day, an empowering day.

I took Endone before bed last night as I just knew it was going to be ugly. It helped me to sleep until 2am. I watched TV, I promise I did not buy anything from the shopping channel but I can see why people do!

My tummy is upset but manageable, I am tired, looking for that Damn Bus, my hands and feet are swollen and red hot from the inside, it hurts to walk or to use my hands. My mastectomy scar is really sore too; it’s weird.

I dose after 4am and wake at about 7am with this strange and strong desire for an almond Croissant, seriously! I mention this to my knight in shining PJ’s and he jumps in the car to get us some. Man I married up huh?

I am able to stomach the croissant, he heats it up so it is warm slightly crunchy and soooo naughty. I feel a little sick afterward but I believe it was worth it. I reckon I’m gonna feel like crap regardless.

Today is going to be a very quiet day for me. The tiredness is the worst; honestly blinking seems like too much effort. My tummy feels slightly better than last time, the anti nausea drugs are working well for me.

I have been horizontal most of the day, I just can’t imagine the thought of standing, it’s just too much. Besides my poor feet are so sore and swollen. My whole body feels swollen and hot by the end of the day. 2 Endone are my companions into the night tonight. I pray for sleep, the long lonely nights are the worst.

Saturday 21^st December 2013

Monica is home from South Australia today, she has been visiting her Mum. I am feeling generally anxious, I am adjusting to the new me, coming to terms with my diagnosis, I’ve had my haircut. My sister in law is also visiting with her baby, who is sooo cute!

I walk into the lounge room to say “hi.” Marc is there with Moni and Al & the bub (who is breastfeeding). The first thing Marc says to me out of nowhere is “stop Kylie your scaring the baby!  The baby says where is the other one? There’s only one!”  Moni is sitting there confused saying “what do you mean there is only one???”   I knew straight away what he meant and I knew on some level it was a joke, but I did not know what to say or do and I just dissolve into tears.

DISCLAIMER: please understand that my husband is one of the most giving, loving kind hearted humans on planet earth. He is a fun loving wonderful person and to cope with tough things sometimes he jokes. Marc would never intentionally do things to hurt me. To make things even more confusing for him, sometimes I even start the joke or laugh at his jokes but today unbeknownst to him I was fragile.

I go to the bedroom and cry from my soul, I haven’t done this yet and I guess I really needed too. I am sad at the silly unintentional joke made, but I think this emotion also just needs to come out. I lock the door and I literally cry my heart out for a good few hours. Marc comes and knocks, so does Alison but I just say “please leave me alone.” Marc doesn’t understand, he has no idea what his unintentional expression has unleashed in me. It’s ok, I will explain when I can, but for now I batten the hatches because this pent up emotion is coming out.

We have friends coming over later and have dinner with us – I don’t come out for ages as I have swollen eyes, a broken heart and just don’t want to face anyone. Thankfully these guys are the type of friends that just accept and love you wherever you are.

I begin to ponder about the idea of what will Marc find attractive about me when I have no boobs, no hair, no female hormones, what is left to make me a woman? What if he looks at me and is repulsed? Every physical part of me that makes me a woman is going to be cut out or poisoned so it no longer functions. Lovely thought huh?