Un pc thoughts
Comments
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Thanks everyone, waiting for the results, I’m sure it’ll be fine2
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yes biopsy is benign thanks everyone, relief!6
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Hi @MicheleR,
it is really tough hoping friends and family will “stay the journey” with you. I sent out an informative text a couple of months in, before I started on (neoadjuvant) AC-Taxol, requesting people get in touch, “but please, no questions, advice or stories” (I was quite overwhelmed with all the new info). A few people texted encouraging words back, a few rang me. Some didn’t.
I was/am half-way between miffed and quite relieved, because I find talking about it exhausting! Recently my sister told me it was my fault ‘people’ hadn’t got in touch with me because I didn’t give them enough info and ‘they’ thought the worst. I reject that! I told her c’mon! Who? “Well, I did” she said. She tends to think the worst, always. I have decided that it’s not my fault how others cope with my diagnosis.It is tough staring at ones mortality. It is also tough staring at your friend’s mortality. Steadfast friends don’t waver. I have a few of those.Someone wise said to me early on, “people often feel really helpless, so they may cope better if you can give them something to do for you”. That has been good advice. It has helped some people feel connected and less scared, I think.
The past 8 months in Victoria Covid has permitted social and physical isolation and numbing in everyone. I’m also taking that into consideration. Everyone’s managing as best they can, is what I say to myself... Including all of us women dealing with BC!3 -
Hi @Kiki_Dances60,
I sort of went the otherway and gave lots of info. I still post some stuff. I think people feel bad for you and dont know what to do with it when really what you need is people to listen. They also feel guilty sharing their stuff because there lives still go on and they dont want to winge. Just yesterday a friend of mine posted a there is always someone worse off post and she chose a man who had half his body amputated. She had said above it, we know you are suffering the worst if all of us. My response was its not a competition. Its all realative and acknowledging that being a parent is hard. Ive had to say sometimes listening not problem solving or offering postive words is all i need.
My brother rang me out of the blue yesterday for a chat. He has been very absent i realised he has some stresses i understood and we talked through them. Its a relief to help others with their issues.3 -
Sister said:Yep - vent if you want to - safe space here.
AIs? They suck. The cancer might be completely gone so you take them without need. You may take them and the cancer comes back anyway. You may feel so bloody miserable on them that you decide quality of life is better without, or not worth it at all. You may decide not to take them, be living a great life, and the cancer comes back to bite you. Where's the win? Damned if you do, etc...
Aren't I a little ray of sunshine?0 -
Dear @Dory65
I feel your frustration viz uncommunicative oncologists! I too feel like I’m supposed to shut up and accept whatever he thinks is appropriate for me. My oncologist is so reluctant to answer my questions, he doesn’t ! I wonder how he expects me to make an informed decision about my treatment without any fxxxing information?
He actually laughed while telling me he normally ‘jokes’ with patients when he sees them just before their final treatment : “oh, I forgot to tell you, you have another 6 weeks’ treatment!” Horrified (I’m 2/3 of the way through), I told him “that’s not even the tiniest bit funny.”
Obviously no empathy. Is it a power trip?
I’m wondering, why isn’t some of the cancer funding paying an honors student to look back over the results of every patient in the past 20 years who’s had 6 month AC-Taxol protocol to differentiate between high ki67 cancers, to see their 5-10 year disease free survival rates? To see if all the trauma is truly worthwhile.1 -
Sounds like a great idea for someone's Masters or PHD @Kiki_Dances60.2
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@Kiki_Dances60 I've churned through a few oncologists in the last 14 years. The dismissed have generally--according to my entirely unqualified assessment-- been somewhere on the autism spectrum.
Now, before anyone drills me about those on the spectrum, I fully appreciate the multiple and sometimes extraordinary gifts they can have but in my experience being user friendly and empathetic is not necessarily a strong point. And that is where I struggle with those individuals when it comes to them being my health care providers. I would really prefer someone who relates and is relatable. It's difficult, but ultimately we are the consumers and we need to be able to communicate.
My current surgeon is a difficult sod, but most of my interactions with him have involved me being unconscious. I think some of the sacked oncs might have been better suited doing complicated things to mice in a lab rather than dealing with real, live, kicking and squealing patients.4 -
....“oh, I forgot to tell you, you have another 6 weeks’ treatment!”.....
Bloody HELL, @Kiki_Dances60 - if my Onc said that to me, I'd bloody swear & probably THUMP HIM! Definitely power tripping. I wonder if he tells his male patients with prostate, that? I bet not!
I am onto my 2nd Onc as my first Male Onc was totally disinterested in me & my condition - so I swapped to a lovely female Onc.
Re someone collating all that info - as @Dory65 says - it SHOULD be done!! As it is, they are obviously not even collating side effects & Oncs keep perpetuating the lie that it doesn't happen much!
BTW - whereabouts are you? Town/state? We may have members nearby
All the best with your ongoing treatments and remember you CAN change Oncs if you want to!! xx2 -
I’m in Melbourne.1
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@arpie Yes! I was stunned. I agree with @Zoffiel: he’s not strong on empathy - and likely autistic. He needs an empath sidekick, but he doesn’t have one.
I wonder whether his choosing this particular regime for me is due to instinct/gut feeling? Or it could just be: it’s ‘the protocol” and it’s pretty bloody nasty and kills everything - this woman is healthy (apart from one tumour), so she should survive the treatment.I also wonder whether more might have been done to advance to less nasty treatments, if the majority of breast cancer sufferers were men?
I’m sticking with this guy for the time being as I like the hospital. As of next week I’m recording every appointment from start to finish, so he might consider what he says to me.3 -
Good idea to record it all @Kiki_Dances60. Is it a bigger hospital? Only the one Onc?! Take care ... whatever it takes!! Xx2
