The day started off really slow. I got the kids off to school, did some shopping and then I literally hit the wall. I am as flat as a flat thing. I am craving sugar, I feel sick, I’m so hot and bothered. To top it off, the pain in my joints is unbelievable.
I wanted to go for a walk, I know it’s good for me, but I just couldn’t do it. It’s a miracle though, I managed to cook dinner and we have Connect Group at our home tonight. I really don’t feel like I have the energy to see anyone, but I know it will be worth it.
I’ve never felt so empty, so drained, so emotionally numb. It sounds horrible but I almost wish my body was numb. It’s such a weird situation when your emotions are not there, you’re so tired you can’t feel anything but there’s so much pain and discomfort in your body.
I pray for anyone who goes through this treatment or any other type of illness where you are in such pain on a long-term basis. I really don’t know how you do it and you are my hero.
I’m awake at 7 am it’s Sunday morning. I feel like I’ve been hit by a truck. No church for me today, I lay in bed until 12. I was going to try and do lunch today with the conference, the VIP’s, but I’m just too tired.
Besides, I need to get ready for the school week ahead. My local paper is coming for an interview tomorrow. I’m so exhausted I need to manage my energy or I may get even sicker. One thing I’ve learned over the past few months is that the more tired I am, the sicker I am. And this can last for days.
I used to be so proud of how I could push through almost anything. This illness, and more importantly the treatment, has taught me not to push any more. I’m sure there will be a great life lesson in this somewhere.
I’m really keen to get through the really dark parts of the chemotherapy so I can truly begin to rebuild. I’m excited because this time once I get past the really bad part of chemo, I won’t be having another treatment to pull me back down again. That’s more exciting than I can put into words.
Today I have nausea, toxic hot diarrhoea, (what a pretty picture I am painting for you), headaches, bloating and such pain in my bones. Oh, plus the heat, this unrelenting heat.
So it’s my last chemotherapy treatment and I am on day 2. I have a professional development conference to attend. I’m not sure if I will cope but won’t know until i do it.
I slept like a zombie from 10.32pm – 11.18pm. WTF!!! Then I tossed all night long with hip and knee pain, I’m so hot and my tummy is so sore. I finally got up at 4.30 am. I just can’t lay in bed anymore.
We are in a hotel so I am aware of not disturbing Marc. Its really hard, there is nowhere to hide.
I feel fragile but okay. My head feels fuzzy, my hands and feet are really hot, my tummy is bloated and sore, but I am not too bad. I dose up on pain killers and anti nausea meds and I get ready to go to the conference. I make it to the lunch time break before I hit the wall.
It’s been weird – I’m with my business friends and none of them have seen me since before I was sick. They are all so supportive, but I feel like an alien. Like I am in this weird parallel universe. They all tell me I look great, but really, I am sure they are being kind.
We are staying on the site that the conference is in so I went up to our bedroom and lay down, sleeping until 6pm. We then went out to dinner. I took it very slowly. I felt quite weak and shaky and was waiting for the awful diarrhoea to hit. I’m almost scared to leave the safety of a bathroom within 6 feet.
I took it slow and it was pretty fun I guess. I’m in bed by 11 PM dosed with endone and valium let’s see how we go. Still not sure if i am overly optimistic or just stupid for expecting myself to do this……
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.
Despite being so exhausted when I went to bed last night, I was awake until after 1.30 in the morning. I had so much pain in my joints that I just couldn’t sleep. Even taking some really strong pain relief I tossed and turned until 5 AM.
An absolutely awful thing about today is it’s my honey’s birthday. Hip hip hooray!!! Yeah right……. I feel like one of those dying flowers in a vase trying to look nice but failing miserably.
I tried my best to spoil him before he went to work, he seemed to appreciate the quirky gifts we got him. He’s not an easy man to buy for, whenever he sees something he likes, he usually gets it so it is very hard to surprise him.
We had a nice morning and then I do the school run, go shopping, wash the loads of dirty clothes, and do more washing and ironing. I also did the kids sheets and made their beds with new sheets. Why I decided to do this after having virtually no sleep last night I do not know. I don’t even understand myself at times….
I am so exhausted that I feel really sick. I really have no one to blame but myself. I should have stayed in bed, the chores will always wait. Somehow my mother’s guilt got the better of me.
I made Marc his birthday dinner, I felt as sick as a dog. I feel like I’m going to lose it at either end any moment. Not a nice way to try and make someone’s birthday special. I’m so exhausted I really need to sleep. I feel so selfish at the moment. I’m so focused on how bad I feel that I’m unable to give anything to anyone else. I really hate this. I am determined that his next celebration will be much more special.
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.
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.
So today is day 10 post chemo. In chemo terms, I am past the worst of this round. I slept okay again, got up and walked again. I feel sore but I’m telling myself it’s a good sore.
It’s funny, after you’ve been through so much, had so much surgery, treatment, poking, prodding, poisoning, cutting, burning, slicing, the word sore takes on a whole new meaning. That’s why something as small as telling myself it’s a good sore is so important.
Today I met my good friend Chris at the markets; we had a really fun day. I’m exhausted after walking around for a couple of hours.
I bought some beautiful new earrings and a hat to hide my scone head.
It was lovely being out and about in society again. It’s amazing how you hide yourself away when you go through chronic illness. My bedroom has become my haven, my safety zone, my escape. Nothing can hurt me there, no one can laugh and there is no judgment, only rest and comfort.
For anyone else this would have been a small day, but it was a big day for me. Tonight I’ll have a quiet night at home with my pain and fatigue as my companions.
After not much sleep I’m up early the church today. I’m feeling generally okay just a little flat. The message at church was exactly what I needed to hear. It was a message by Ben Houston all about the challenges that comes from every angle when you begin to pioneer again.
I feel like this is a new and defining time for me, for my business, even for my outlook. This journey is teaching me how to redefine myself, to look at what I want for my future and my life, to define what works for me and what doesn’t. I don’t know if you ever noticed this but in my life each time I try and gain ground challenges come up. This is exactly what Ben is talking about.
It’s so important that as the challenges turn up they don’t throw us off course. In the middle of a battle it’s so easy to give up or change direction thinking that is the answer. I don’t know how many biographies I’ve read of successful people that have explained how close they were to victory when they almost gave up. I wonder how many people have been in that exact position except they have given up. I am determined not to be one of those people.
The enemy uses lies and deceit to throw you off course, however, my trust is in God. I know He has a plan and a purpose for my life and He is always with me. This journey of cancer is a refining process for me. A way of stripping off what is no longer helpful and putting in place practices and mindsets that will help me achieve what is in my heart.
After church Marc and I went to the beach, I took Betty (our pup), went for a walk and then read a book. It was so nice sitting under the shade of a tree with my cute little puppy just spending some time. It was nice to do something so normal for a Sydney summer but something that we have not done in such a long time.
It was a powerful reminder how getting back to basics and doing the simple things can bring so much joy. I want to do more of this, I feel almost normal like I’m not in the middle of this battle when I do things like this it is a welcome rest. I’m only four days away from my next treatment so I am beginning to feel good again. I need to begin to prepare myself for the next round of chemo.
This is just as much a head battle as it is a physical battle. I seem to learn and understand this more and more very single day. Some may say I’m a slow learner
I have read and heard this very wise quote;
“We are not Human Doings. We are Human beings!” LIGHTBULB MOMEMT FOR ME. We need to be able to be still, to find quietness, to connect with ourselves and (for me) with God. Just be….. Honestly, this really challenges me. I am not sure if I even really understand what this means let alone how to do it.
However, it is particularly important for me as a travel this winding road that I pause and allow myself time to trust God, to give him my cares and concerns. He has promised to carry our burdens.
I am so much a person who was wired to define myself by my works, Am I good enough? Have I done enough? Will I be enough? This journey is teaching me that this is not the case. God has already said that “I am enough.”
He is my stopgap, I just need to lean into Him and all will be well. I really needed to do this today. Shopping was a nightmare. So many people. So much frustration in the air.
Sam and I had fun, we usually do. I am so thankful that he has such a wonderful disposition and sense of humor. He sees himself as responsible for making me laugh each day. How utterly beautiful is that?
We get the school stuff, Sam has a hair cut and by the time we get home I am literally exhausted! I am in bed with aching joints and a lagging persistent headache that will just not leave me alone.
I took Endone to help me sleep. The wonderfully helpful and insightful Edward Zia wrote a blog, click here to read it, about Marc and I and our story that he sent out into the world today. That was so thoughtful. His words were too kind. He spoke of me as a warrior and being so tough. Honestly, I am just putting one foot in front of the other and doing what I think is best for me and my family. There is no toughness form my perspective,
Once again I find myself feeling so thankful for the people around us who just keep showing up and being there when we need it. Just amazing.