I slept pretty badly again. I was so aching and hot all night long. I woke in a really really bad mood and unfortunately took it out on my poor man. I’m sure this journey is so hard for the partners, the husbands, the men who stand by their wives. I’m trying so hard not to take it out on him but I just have no ability to stop myself.
We’re late getting off to school this morning, Marc can get really frustrated when we run late. The kids struggle when Dad is angry, as he is always so happy. They retreat into themselves. I see it and want to reach out, but have nothing in the tank. So I watch, get sad and think that I will attend to that when I am able.
I worry for my quiet child. So sensitive and such a big heart. Lord please let him know security in you like no other. Please be there for him if/when I’m not.
I slept most of the day. I did a little tidying up but I’m really not up to much. The story with the local paper was easier than I thought. I pray they represent me accurately. I’m only sharing my story to help others. If one other woman reads this article and has a breast check, then it’s been worth it.
I had a better night’s sleep. I woke okay with some aches and pains and really tight muscles. I’m so sorry if it sounds like I’m whinging, but I’m really trying to give you a real picture of what this is like. Not only for the benefit of someone going through this, but also for the people around that person to know exactly what it’s like.
I think a lot of people are like me and don’t really share with many people what this journey is really like. A brave face is what they wear everyday. Whilst this may help people in the short term, in the long-term everyone loses because you don’t get the true support and understanding that you need.
It’s also really unfair on the people in your world who are trying to support you but can’t when they don’t know the truth about your situation.
Today I had a really bad chemo brain. It is a shocker. I actually tried to lock the house with the car remote. I stood there for such a long time pressing the button and wondering why the door would not lock. When I realised what I was doing I just shook my head and walked away.
The day really slid downhill from there in terms of my brainpower. I met a friend for coffee and had a mentoring session that left me feeling more inspired. After that I took the dog for a walk and some lovely friends from church came and visited.
I got an email from Business Chicks to say that they would like to run an article on my story. I am really excited about this opportunity. How awesome to be able to share with other business women about my experience.
How amazing to share my struggles and my story so that they at least can learn from my mistakes. At the very least, encouraging women to ensure that they have health and income insurance in place.
It’s also Connect Group night tonight. I am back in your arms Lord, being held in prayer is such as safe and beautiful place. I begin to take the dexamphetamine again. It’s time to prepare for the next round of chemo. Yay!
The dexamphetamines kept me awake until 4:30 AM, as you can imagine I feel like I’ve been hit by a truck. I think tomorrow is going to be a slow day.
This morning I was optimistic, I babysat my baby niece Eliza. It was lovely to spend some time with her. Thank goodness she’s not running around just yet so I can keep up. After Eliza went home I had lunch with my sister. It was a lovely catch up but I need a Nanna nap.
I saw my gynaecologist today and was told that I can’t have my ovaries removed at the same time as my breast surgery. This really throws a spanner in the works as I really don’t want has too many general anaesthetics. I need some direction from my doctors. I refuse to panic. I’ve come too far to let panic take over now. So Lord I give this to you and I know that you have it in your hands.
I’m really tired now and seek out my mattress to rest. I wasn’t lying down too long before the kids came home from school. Then the afternoon ritual begins, it’s not a huge amount but when you are operating on empty, sometimes even breathing seems too hard. It’s about checking how the kid’s days were, considering what I will cook for dinner, working out what washing needs to be done and encouraging home work to be done.
By bedtime I am so achy and tired. I’m so desperate to sleep that my good friends – Endone and Valium will be necessary. So many decisions, so little energy to make them, some days everything seems too hard. I’m sure things will feel brighter in the morning.
I had a good sleep with some pharmaceutical help. After such a lovely day yesterday I was looking forward to another great day today. I’m greedy aren’t I?
Another excellent church service, they always speak to me in a way that I need to hear which is such a gift. I come home after church and need to sleep as I’m exhausted. Denmark wakes me at 5 o’clock. I’m so exhausted. I can’t believe more than five hours has passed and I really don’t want to get out of bed.
But it’s our Sunday night family dinner so I need to get up. My sister-in-law comes to dinner with her beautiful girl Eliza. Alison, beautiful girl, does my ironing, what an absolute blessing. At first I really struggled with her helping like this, but then as the exhaustion set in, over time I stopped fighting. I literally didn’t have the energy.
After dinner my entire body is aching, I’m sore, can’t think straight, blinking is hard, and all I can think about is bed. I really can’t explain to you just how tired I feel. It is like a beast I’ve never experienced before.
I feel some guilt as I struggle to spend quality time with my family. This was always something that was so important to me yet being so exhausted I can’t keep my eyes open. I’m not even listening when people speak to me because I’m so preoccupied with the pain I feel. How on earth am I meant to live like this?
So I crawl into bed praying that tomorrow is a better day. It’s my man’s birthday tomorrow, I pray that he is blessed and feels loved as much as we really love him.
I slept ok with the help of Mr Valium. I woke at 1.30 am on fire! These menopause symptoms really suck. I had to stand up in front of the fan and spray myself with cold water. Eventually I cooled down. It’s hard to cool down when the heat is coming from the inside out.
So when the alarm went off today , to say I was not keen to get up is an understatement. I had to literally drag myself from the mattress.
Today we saw the Financial Planner who explained that we should be getting an answer from the insurer this week regarding any financial support we are entitled to while I am having treatment, recovering and not working.
To date the entire cost has been borne by us, thank goodness we refinanced our mortgage and had some wiggle room. Imagine for yourself, one day you find out you have a chronic and long term illness and you stop work pretty much immediately without an end point. That’s what happened to us.
Let me tell you despite private health cover, this process is not cheap. In fact it’s really expensive. So this has been a real challenge in more ways than one. Yes private health is such a blessing but the gap required on all treatments is significant.
The waiting game has been so frustrating, but I need to keep reminding myself, God has our back. He has a plan and when we need to know, He will let us know.
I went back to bed mid morning exhausted, and stayed there until after 4pm. I sleep so much but never really wake feeling rested. It’s quite annoying. You think that basic math would work in terms of catch up sleep, but here it does not.
I took Betty (our pup) for a walk, and tonight we had puppy school. She is truly the naughtiest pup in school, we have the problem child for sure. Tomorrow is a big day, I meet with the clean eating Bondi boys of MKR fame, and Moni sits her P plate drivers test. It’s a big day ahead, have your way Lord!
So it’s Monday. Last night it was really hard to get to sleep, but eventually I did. So when I’m woken this morning by my alarm I don’t really want to listen. I feel so washed out, so tired, so sore, it is really hard to explain.
I wonder if I am ever going to bounce out of bed again? Is this a distant dream that I need to let go of? Am I just teasing myself with the idea of bouncing out of bed full of joy and energy? I really don’t know the answer to that.
I woke up with such a big list of things to do. I got home after the school drop-off and my metaphorical petrol tank was completely empty. I went back to my bed and literally didn’t leave.
I dragged myself out of bed at 5 o’clock in the afternoon and walked the dog. I felt better afterward. I’m still so sore and so tired. There’s this really strong desire in me to find the balance, but what does this mean? Is this another way to tease myself? Is there such a thing as balance?
I fear that my life will never be the same again. I have a sneaking suspicion that my life as I knew it is long gone and has been replaced by something that is not familiar and not wanted. In order to keep moving forward I need to find the good, the hopeful, the light. I don’t know how to do this, but what I do know is that I’m not going to stop looking.