Woke today with a massive headache and was taking pain relief as I got out of bed. Not a great start today….. Although I had acupuncture and then Im off to see the psychologist. It’ll be great to unload. I talked to Marc before he went to work today about treatment and what I need to stop if money becomes an issue. He agreed that we will need to stop the integrative treatment that isn’t covered by Medicare. As we simply cannot afford it, its either treatment or paying the mortgage……
I know he’s right but I’m so angry, this is the treatment that is actually helping me cope with the symptoms… with the pain with all the things that are causing me so much hassle. I’m not mad at Marc at all but that the situation; at the compromise that we are forced to make because we don’t have the money. And then I stop and think just how many other people do this on a daily basis????
How many women don’t get to have the best treatment for them because they can’t afford it? It’s really bloody wrong it makes my blood boil. The system is flawed. The insurer is happy to take my money then when you need them, they fight not to pay.
Acupuncture was fabulous and a psychologist was also great, I’ve been encouraged to meditate daily. Anyone who knows me knows that this has been an ongoing battle. Quieting my mind, has been one of my biggest struggles. Anyone else relate???
I got home to a phone call from our insurance representative. I took a deep breath and waited for the words to hit me. He said they’ll pay. I now will receive the income protection insurance that I’ve had in place until I can go back to work. Oh my lord I have no words for the relief….. I cannot believe the blessing.
Tears of sweet relief flow down my cheeks, I can still continue with he integrative treatment that has been helping me so much.
I started to Tamoxifen again today, let’s see how long it takes before I notice the toxicity. I also see the thyroid doctor tomorrow it’s time to try and get this hashimoto’s under control.
I woke feeling okay, feeling a little lost as I have nothing planned today ( but there is always lots I can do). I also am waiting to find out more about the insurance issue today. We asked our representative to fight the decision and take it to the very top as we just did not feel it was fair.
After a little research I found that the anxiety label came from me having a prescription for Valium while I struggled with IBS. My doctor unknown to me had written in the notes that stress and anxiety had caused my IBS ( Irritable Bowel Syndrome). Now while this may be true I’ve never been diagnosed or treated for anxiety. I’ve also never had a day off from work due to my IBS. It’s like everything else in my life I had worked through the pain. Until now I’ve always been able to work through it but not any more.
I’m feeling really unsettled, knowing whether or not we will have any financial support during my illness is hanging over me like a weight. I just need to know the answer. I ended up having a productive morning washing tidying doing some writing I made lunch and then ended up fixing this noisy fan. Turns out I put the blades on backwards lol. Then I hit that familiar wall I’m feeling as flat as a flat thing.
I had a headache and sick in my stomach knowing …. I’m just blahhh. I lay down and then as it got dark I got up and cooked dinner. I’m ready to bed now but I did have a nice night with the family. We had our baby girl ( aka puppy) Betty boo desexed today as well.
I slept fairly well, tossed and turned a little bit the new fan is noisy and it kept me up. Without it I would have melted into the mattress so at least I’m cooler.
Funny thing, I realised later that I had put the fan together backwards which is why it is noisy and also not very strong…… I suppose at least I realised :0
I had a meeting with a photographer today she’s really excited at helping me tell my story I also had lunch with a fellow cancer survivor was really great. We met in hospital just before we had a radioactive isotope injected into us she has had such a challenging time.
She ended up getting an infection with chemo and had to have a port put in her chest. During the routine procedure the nerve was cut accidentally and now she’s been left with a permanently damaged voicebox. She can hardly speak and it really hurts. Now she is in a legal battle with the hospital as to who is responsible.
Now who needs that on top of a cancer diagnosis?
It was so great just to sit with her spend time and share some of the weird and wonderful experiences you have on such a journey. I told her how I cope with acidic diarrhoea. She was so pleased because she’s been struggling with that and did not know what to do. Who’d have thought I’d be sharing this type of information?
No rest today, busy doing errands and catching up so have to have a quiet day tomorrow. It’s become a bit like that simple maths if I don’t rest one day it’ll catch on with the next day. I never thought I’d feel so frail, but what I need to focus on is the strength I have.
I woke at 430 this morning and spent some quality time with my lovely man. It’s so rare that we both are able to just connect, spend time with each other and just “be”. In fact, in general I struggle with the notion of “just being” I am a doer …. It’s a busy morning, doing errands washing putting new fans together for me and the family. It is a really hot summer, hot flushes certainly do not help.
I think I’ve worn out about three fans through my hot flushes one accomplishment! I also spent some time declaring sending some emails and by lunch I’ve hit the wall. I had a little sleep in the afternoon about 30 minutes and then did some Pilates. Don’t get excited it’s nothing special just gentle movement keep my body healing.
I suppose it was a productive day in many ways, I still struggle with the idea that it’s just not enough. But this is much true that me being enough regardless of what I accomplish. I had some pain relief at 4 PM as my bones are just aching I’ll also need to take tonight to because I won’t sleep without it but no valium tonight, small steps, small steps.
Today awoke at 530 in the morning and at 7 AM I get rid of the church. I’m feeling really tired but keen to go to church. With all the uncertainty around me at the moment I feel like being in the house is where I need to be. My body feels so tired and sore I feel like I need to stretch but I just can’t it’s like my muscles won’t let me do like a tightly coiled spring.
I didn’t take any pain medication today until 730 tonight and I feel like I accomplish something. I also didn’t rest today, which may come back and bite me tomorrow. I need to ensure that I stretch and rest for a little longer tomorrow to make sure that I am recharging. I’ve even gone to bed tonight with out Valium. I’m not sure if I’m being stupid but I suppose we’ll see tomorrow.
I fell asleep around 5 AM and woke at six. I feel like a truck has hit me but I refuse to let fear take hold. The enemy has planted this massive doubt in my heart. We have spent so much on alternative treatment I’ve stopped work so I can heal.
I’ve been so sick from the treatment the surgery and the medication that I just don’t know how I could work. I take my hat off to all of those women that continue to work through treatments I honestly don’t know how you do it I certainly could not have.
Being in my own business also means that everything falls on my shoulders. My shoulders and every other part of my body are exhausted. I need to trust more than ever right now that God has me in his hands. He has told me actually promised me consistently that He has me and that I will be okay that His provision abounds.
I suppose that’s what faith these is believing in those things unseen, digging in when it seems impossible. Despite the tank being more than empty I go the colour again today and every single speaker has spoken into me over me and filled my cup I am determined to hold on to the promises of God in this season and always. At the end of the day I’m tired and achy but I’m okay.
Today is day nine post chemo, I slept well but I woke feeling like that dam bus had hit me again. I have a big day at colour conference all day from 8 AM to 9 PM. I don’t know if I’ll make it but I will give it my best shot. I’ve packed healthy snacks and dressed the comfort.
I’ve come with an expectant heart and I was so blessed. What an amazing day my heart is full, I am very tired but my cup definitely runneth over.
I got home my lovely man had had a really hard day his face was sad. Anyone who knows him and knows this is not usual. He then said that our insurer had called and said they won’t pay our insurance. My heart sinks. If we don’t get financial help we are in real trouble.
They said that we did not disclose my entire history and I didn’t mention that I’d been treated for anxiety. This is news to me I’ve never been treated for anxiety I’m wondering what we’ll do. I refuse to let this steel my joy I decide to give it to God he is the only one big enough to handle this.
Its Day eight post chemo, I’m so pleased this was the last round. I slept well but I need more my muscles are feeling really tight. I have colour conference starting today! I’m so busy shopping, organising, emailing. Hit the wall at 10 AM that’s not a bad hour of productivity…
I got up at 2 pm and cooked myself some food and healthy snacks the conference. I’m tired but excited for all God has to offer his girls. I saw the oncologist today, having my ovaries removed is not the most important thing. Thank you for that miracle. I was so concerned about being stuck in this painful, hot haze of menopause I didn’t know if I could do it.
So now I can wait to have my reconstruction and implants done and then see how I feel. I got my script for Tamoxifen again today I won’t start until next week I’ve also confirmed with my plastic surgeon that he will work with my gynecologist when required.
The coordination involved in getting my specialist to work together and speak together is enormous. When you’re feeling at your lowest, when you have no energy and every part of your body hurts it’s a big ask to then be coordinating all of these specialists. It’s no wonder that so many people find this too hard.
I am so sorry I have not added to this blog for almost a year, I am so sorry but I have been on such a journey of discovering what works and what doesn’t. Firstly, as you can imagine this blog has been written retrospectively. I wrote it originally in a journal on a daily basis. This exercise was like oxygen for me.
I have since transcribed this to the blog. I was diagnosed in late 2013 and this blog represents my journey each day for just over a year. Late in 2014 I attempted to return to work. I returned to my business and worked on it starting part time and pretty quickly upgraded to full time.
Anyone out there have a bump in the road when they returned to work? I know for me that it was certainly bumpy…… I have never been great at starting slowly, in fact doing anything slowly is really a struggle for me.
So…. I over did it and CRASHED!!!! I became so sick, I was struggling with pain, fatigue and I began to get vertigo. I felt so bad that I felt like I had no control over my body. I felt that I could not predict how my body was going to react and that really scared me. I was then diagnosed with “post chemo chronic fatigue…..”
I felt frightened to book in work because I just could not predict how I would wake up, would I be able to get out of bed and show up or not?
So there has been a journey of discovery that I have been on, I will be sharing this as I go along. I am determined to share what worked for me with you guys. I don’t want any of you to go through the darkness and feel alone as I did at time. You don’t need to.
So I am back, the blogs will be regular. I am working on some exciting resources for you guys really soon. I have worked on my health and strength and am also only working the hours I can work. Progress hey! So please keep sharing, anyone you know that you believe would benefit from my experience, please share. Let’s not do this alone…… if you know a family or a couple that is going through this, please share.
Love, hugs and health