So, we have come to those forks in the road where you have to make life changing decisions with your loved ones. We have chosen (or for lack of choice- it has chosen us) to go down the avastin path. First treatment was on yesterday. My bank account will feel substantially lighter after it, although I would give every last cent for his health. I struggle to understand how in this day & age, our most vulnerable sick members of our community have to spend so much money to try to gain health. I am grateful that we are financial enough not to worry about it, but I am regularly think- WOW what pressure that must be on top of what I/we are already going through, to have to not have treatment because you can't afford it. Its quite sad. As a carer, I have had him well for 3 months & driving. So he has been so wonderful & has been helping out so much (driving my eldest to school, taking her to her activities, cooking dinner, & doing food shopping) We knew it wouldn't last, we both knew to take full advantage of those 3 months, and enjoy them. I'm so glad we did. Today has been my second day of back to full duty- & I have already had a hissy fit- I've got to get back into my groove again. Symptom wise, he is tired & fatigued, still up & about but you can see he is slowing down. Not being able to feel his left leg properly makes it hard for him to walk and that frustrates him. I'll end with a sad but funny story, when discussing the changes with family in front of our 4 year old. She told her nannie that she was upset that her dads "lump" has grown, nannie & I looked at each other sadly & went to comfort her- telling her it's going to be ok. She took a breath, & then asked "ok then, can we go out for dinner then" :D The innocence, and being so self absorbed is beautiful & refreshing. I hope you all sleep well tonight.
7 Comments
Minx
Contributor
I know how you feel, lucky you can afford it, sorry for those that can't and angry that we need to fork out the money in the first place. I hope the avastin does help him and give hime quality time with you all Xo
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purpleangels
Contributor
Hey Melanie! Sorry that you have to go down this path.....you do what you have to do hey!? I was told by the palliative care counsellor at the hospital that young children feel sadness in the moment (I am upset that dad's lump has grown) but then to move on so quickly is absolutely normal...... I have had a couple of my own conversations with my five year old....... "Has daddy gone to heaven yet?" My reply " no not yet but it will be soon" (2 days before he died) mr 5 " I'll be sad then won't i?" Me: "yes of course" mr 5 " well then I'll save my tears for then, what's for lunch?" Priceless....left me a bawling/ giggling mess........ Write down this stuff....they'll love to hear it later......... Take care of yourself!! PA xxx
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Melanie
Contributor
It's heart breaking & refreshing all at the same time hey! Nice to know that it's still so simple for them. Where as us adults tend to make it much more emotional :D I love doing a blog- it reminds me to write things down. Hopefully one day I'll read all these back & be reminded of the whole situation - & it also keeps me aware of the ups & downs that come along. Thanks PA
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Melanie
Contributor
Exactly Minx, I understand the logistics of it, but I just don't understand how it can be so expensive. Just buying more time!
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Deni_55
Occasional Contributor
We went down the Avastin road too....We were lucky we had money from insurance to pay for it. It was important we had the options. Good Luck...D
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Missing_Tin
New Contributor
Just to add...Kids are so innocent. My 4 year old and 2.5 year old knows that mummy is in heaven. I remember whilst in Palliative care ward. Christina has just passed 1 hour ago and we were saying our goodbyes, and the following is my conversation with my 4yr old: Mr 4yr old: Is mummy sickness gone? Me: Yes Mr 4yr old: Is mummy gone to heaven? Me: yes (ponders for a minute) Mr 4yr old: But how's the bed going up to heaven?? Me: smiling...then explains to him that her spirit and soul has gone to heaven....
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purpleangels
Contributor
Hi Missing Tin! Sorry to hear of your loss......but your kids will absolutely keep you going.....it will be a year next month (where has that time gone.......) since my husband passed and my kids have been a blessing....hard work at times....but a blessing..... The few times I've collapsed on my bed in a bawling mess, they have never failed to make me laugh/ snap me out of it/ made me realise how lucky I really am....... But we very much take it one day at a time!! Take care out there!! PA xxx
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