I finally get to sleep by 1.30am with Valium, and am awake at 2.30am – WTF!!! I’m awake every hour and just don’t know what to do with myself. By 4am I’ve been watching the “Under the Red Dress Project” on my phone and am so inspired.
I thought about “behind the smile” as so many times people have said to me that I’m smiling, I must be doing things easily. How little they know.
My tummy feels really blocked and bloated. My thinking is slow and fuzzy. My tongue is small and dry. My hands and feet are swollen and hot. I find myself saying, “Your joy is my strength Lord, I will rejoice in this day.”
Seriously, without something bigger, a greater purpose and strength, it would be easier to just lay down and say,” No more” some days. To those struggling to get through the day, I send you strength and kindness. I am sorry you have to journey through this and I pray you are surrounded by love and support.
It’s another long day with a conference, and again I’m in bed by lunchtime exhausted. I really don’t know what i was thinking coming along. I have such FOMO, (Fear of missing out), yet here I am in my room just wanting to chuck my guts up 🙁 So have I missed out or not??
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.
I wake after an average sleep, today I see my Oncologist. In general my doctor is really happy. She says my white cells are low, but manageable. She explains that my body has handled the chemotherapy relatively well. I put this down to being so meticulous with my diet.
I’ve tried so hard to nourish my body with good food and rest. I haven’t been perfect at this but I’ve given it a great shot. Because I’ve handled the chemotherapy so well my doctor thinks we can move my second surgery forward to the end of April, instead of June. This means I will have my second breast removed and begin the reconstructive process at this time. I’m also considering having my ovaries removed as the tumours were oestrogen driven.
This afternoon we get more questions from our Insurer about my claim for financial support. They are questioning whether or not I knew that cancer was present before I put in a claim. We know this is the insurance companies job to question every aspect, but the idea that they are questioning my integrity really, really hurts.
All I can do is give this to God and believe that He has it in his hands. Tonight we were with our amazing Connect Group from church. It was such an amazing and supportive night. The importance of being surrounded by such positive, uplifting and supportive friends is beyond words. God you are so gracious and loving it is beyond my words to explain how much you mean to me. Your Love alone can move mountains. I am so glad I can share this very big, very ugly, very immoveable mountain with You.
So it’s my second day as a Baldy Fritz. I woke early and had no energy AGAIN! I spent most of the day in bed, my “To Do” list was not touched for another day 🙁
Today, Sam called me a “silly bald woman” and I responded with “that is your one and only chance to do that!” I can’t even remember of it was out of frustration or him being comical, either way, it’s a fine line hey.
We had our connect group from Church over to our place tonight. What a wonderful group of people they are. They are like family, they walk with us through the tough times and cheer with us through the good times.
This experience has really reinforced just who important it is to have good people in your corner. Man it just makes the world of difference to have people who you can call on for encouragement, rot listen, to make you laugh, to help out practically. It is really so humbling.
Tomorrow it’s back to school shopping for Sam and I. Can you imagine anything worse??? Shopping on a hot day in school holidays when every other parent s doing the same thing, with no energy and no hair?
I am beginning to get into the mindset for me next treatment which is only 3 more sleeps away. I have read and heard people say this is one of the hardest parts of the schedule. You just start to feel more energised, almost human again and you go back for more poison (sorry treatment 🙁 ).
Well it’s back to bed for me and my bald head. I must say one bonus? It takes me much less time to get ready to leave the house 🙂
I felt better today when I woke up, thank goodness the Truck had not run me over again! I am excited as I am meeting one of my best girlfriends for lunch and a movie today. We saw an action movie, I fell asleep half way through, sad but hey under the circumstances I suppose it is understandable.I felt better today when I woke up, thank goodness the Truck had not run me over again! I am excited as I am meeting one of my best girlfriends for lunch and a movie today. We saw an action movie, I fell asleep half way through, sad but hey under the circumstances I suppose it is understandable.
We had such a great day laughing reminiscing and sharing. We have always had a relationship where we thrive on each other’s energy and ideas. She has the ideas, I follow through, it is a great balance.
Friends are just so important. I know before I was diagnosed with cancer and I was seeing a counsellor for some stress management support. She asked me what I did to have fun and I couldn’t answer her. My world had shrunk to work, managing family stuff and more work. I was struggling with a unhappy relationship with a loved one and I was really stressed.
My cup was empty and I just kept expecting myself to produce more. I am sure I was on empty for many years. This journey has been teaching me how important laughter, friendship and prioritising me is. All work and no fun made Kylie a very sick woman.
So if you are struggling with something, whether it is health or stress of some kind, take an honest look at your life, at what makes you feel good. Promise that you will do more. Fill your cup so you can be there and be fully present for others. Letting yourself become run down comes from a dysfunctional place of self importance, (everyone needs me.) In fact, what you are doing is the exact opposite. You are being really selfish because no one gets the best you.
What a Big Lesson for me!!
I came home and had a lovely dinner with my boys and we watched a silly movie. We laughed and laughed. I noticed my head and scalp feel really tingly and sore. I wonder if tomorrow will be ‘D’ Day or ‘B’ day. Only time will tell.
Sam has not been well since he came back from Summer camp. He has a fever and a headache. I asked him to come in through the night if he needs me. I hope he isn’t coming down with something. No matter how sick you are a Mum never switches off. Makes me really miss my lovely Mum 🙁