Skip to main content

Easter.......meh????

29th March

Easter ??????

For those of you that know my family you know I have a large one and celebrations like Easter are a huge. This year is different. Easter….who knows what will happen this year?

Today I had immunotherapy. But before that I had a meeting with my oncologist and we spoke about how I have been feeling.

The last few days have been tough…….really tough. I’ve experienced severe pain and nausea like I haven’t before. It’s been difficult for the family to see me like this. Yesterday I couldn’t wake. My head was pounding and my face was in a bucket vomiting the whole time. I was experiencing extreme pain and there was nothing the could do about it, was very hard for particularly Kane and Tahlia to watch.


So Gary has changed my pain meds. Instead of taking Endone I’m going on something stronger called Ordine (liquid morphine). It should be gentler on my tummy and stronger and help with the pain. I’m also on Fentanyl patches which is a patch that I wear on my body for 3 days and it is a slow release drug and will take place of Targin 30mg. I’m also on Leerikah which treats neuropathic pain, which is caused by abnormality, or damage to nerve.

All these pain meds should help with the bone pain. If they don’t I may need more radiotherapy. This is going to be monitored and Gary, who wants me to let him know how I go over the next few days, if there is no improvement I may need a visit the hospital to adjust meds and sort it out.

I also have an MRI and CT scan booked to determine if the treatment (including radiotherapy) had worked particularly in my brain.
Gary said the side effects I should expect to feel are:

-       Increased dizziness

-       Increased pain (for a little while until it kicks in)

-       Increased fatigue

-       Increased nausea

-       Said I need to take it even more easy and rest even more……arrrrghhhhh!!!!

But if things get bad then I have to go to hospital, hoping it doesn’t get to that. I feel good about the new plan and hoping to see a light at the end of the tunnel for the whole family.


After my meeting with Gary it was off to Day oncology to have my treatment. Unfortunately, have been losing weight and not keeping much food down, so I have lost 7kgs in 2 weeks. Need to start getting on top of this or they’ll put me on supplements which I don’t want.
The treatment was fine and it was time to go home and rest (as per usual).


There are many side effects to this cancer. I’m in isolation from everyone including my own kids sometimes and this has a massive effect on them.

The girls are used to me picking them up from school (I haven’t driven since last year) and doing fun things with them…..things are different now.

They are little girls and sometimes I think I expect too much from them.

Tahlia in particular is struggling and spoke to her teachers at school. They were very helpful. She spoke to her principal and she said that she goes to school as a bit of an escape because it’s really hard seeing me sick (like I was last night). She considers me strong and when she she’s me sick it troubles her a lot. Then she said that she finds its hard to see Kane doing all he is doing to take over at home and also difficult watching her dad get so emotional dealing with me.

The school was very supportive and told her she can talk to them anytime about issues she is having. My poor doll….she doesn’t need this, she’s too young. Hoping her friends see what she is going through at home and are supportive to her rather than making things more difficult…….just feel for my dolly girl.

This cancer has had it’s toll on our family, I can’t wait till we see the other side of it and things return to normal. I try and talk to the girls about when things are better and were in our new house and things are back to normal. They can’t wait for that day and either can I.

I think I forget how little they are and assume they are OK because they are smiley…..but that’s just how my kids are…they are gorgeous, smiley little girls who are carrying a lot on their shoulders.

The next few days may be up in the air for Kane and I because we have no idea how I will react to the meds but we will try and make it as fun as possible for them.

On another note I am surrounded by gazillions of amazing people who send me gifts, notes of inspiration, food, etc etc. Sorry for not getting back to you all. I love you and appreciate you sooooo much. You’re messages etc lift me and remind me of all the wonderful people waiting to catch up. Miss you all. Can’t wait to party hopefully when chemo is over in June!

#greatkids #newtreatment #excitedtofeelbetter #noeasterthisyear #kickitsass #lions #partytime


Comments

  1. Cassy my brave friend. Give Kane a hug for me. I am there to assist whenever required xxxx

    ReplyDelete
  2. Thank you for sharing cass. I have never met you but your story has really touched me , as it has so many others .. You really are blessed to have such sweet family around you and they are blessed to have such a beautiful brave mumma and brave sweet dad .. it’s really not fair what is happening to you and my heart breaks for you and your family .. I am praying for you, your hubby, family and beautiful angels and know that you will beat this and ahead are many great adventures to be had and future memories to be made .. As hard and unfair as this seems just think of how resilient and strong your little ladies are and will be even more so after all this . It really is character building that’s for sure .
    There is a saying that I say to myself and often think when I or someone is going through a tough time: it is :
    “ the most beautiful lotus flower blooms out of the deepest and thickest of mud”
    Sending you all more strength and positivity , light and healing thoughts everyday . You are all an inspiration .

    ReplyDelete

Post a Comment

Popular posts from this blog

A week a go today!

So I've been meaning to write a blog for sometime now, but recent incidents have pushed me into action. This blog will be about the good and hard times of living with Stage IV lung cancer. It's not a downer but it's real.  I'm hoping to live as full a life as I can, and treat this disease as something I can manage and live my best possible life. I hope to share tales of the fun I have with my family as well as some of the struggles we face too. I've called it "Makeup and meds" because what you see is all an illusion. What you see on the outside may not be what's really going on deep within. Hope you follow me on this rollercoaster ride!!!! Fortunately for me I live in the best country in the world and have access to amazing medical treatment and medication that keeps me going, and fortunately for me I've always loved makeup and dressing up....so everyday I put on my face and start! I may look better than what's going on beneath but some

Guest Blogger; Kano; Magical memories amongst hard days

The 11th May was my last update after we had secured access to Osimertinib (Tagrisso) with the assistance of Professor Ben Solomon from Peter Mac.   On the 14th May, we met Assoc Professor Gary Richardson, who indicated that without a significant response to Tagrisso, Cassy would have ~1 month to live.  Telling our children that prognosis was the hardest thing we have ever done, it shocked and shattered them, they cried uncontrollably. It was just terrible, you actually hurt in your chest. We just held them. Cassy, as always, remained defiant and was so strong.  16th May we did an early birthday celebration for Kiara and went to LEGO Discovery Centre at Chadstone. We had an amazing time, topping out with Kiara getting the ‘Disney’ Castle as her 7th Birthday gift. She was so excited!!! We had Mexican at Fonda... to which Harper created her Parody “lightning and the Fonda” which we’ve been hearing ever since!  We remained hopeful and Cassy commenced the Tagrisso, howev

quick one .......update on biopsy......treatment going forward

Friday 15th March Yesterday I met with my oncologist for my second round of Chemotherapy and to get the results from my recent lung biopsy. The news was not what we were hoping......I am not positive for T790M and I have less pld -1 than originally thought. This means I am not a candidate for Tagrisso (which we were hoping for) and we have to see if  immunotherapy will still be as effective in the brain. What does this mean for me? - It means that I will continue with Chemotherapy and Immunotherapy as the best option for me. - I'll get an MRI on my whole body (including brain) in about 3 weeks (to see if its working in the brain since radiation and immunotherapy - I'm basically starting all over again....(12 weeks from now) - more pain from chemotherapy in cancer areas.  - May look at other EFGR treatments (should this not be effective) Have to say the information was tough to hear because I was preparing myself for coming out of this and starting to feel better, n