What to say!
Comments
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Hi there @Hendrix - I just wanted to say hi/welcome to the Online Network and let you know that If you need any help, please just let me know. You can find anything that you have written in discussions or commented on in your profile, under discussions and comments http://onlinenetwork.bcna.org.au/profile/discussions/23448/Hendrix. I hope this helps, just give me a shout if you need any help with this at all.Hendrix said:Thank you Jane
i thought I did share my story..im having trouble navigating lol can you tell me where I can find what I wrote?1 -
@Hendrix normal normal normal. I think a lot of people cannot comprehend cancer can happen to anyone. If they acknowledge what is happening then they actually have to realize it could happen to them. (scary thought).
So you get be positive and it will be alright or .......not this is complete crap....Sometimes life is downright unfair....
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Hi @Hendrix
we all get it as we're in the nightmare, roller coaster or journey or any other naming word you can think of to describe the situation. Families and friends mean well and it is hard sometimes not to get frustrated by their response or lack thereof occasionally. I lost a dear friend of 40 years over this; turned out perhaps she wasn't so dear after all! She was driving me totally nutty, doubting my specialists et cetera Mind you she's never had cancer, critical of everything, even my hospital room, which I was happy and comfortable in and I found solace as I was recuperating from mastectomy. At one stage I said what do you want me to do get the yellow pages out and ring every surgeon.
The most important thing here is to have faith in your team. Remember your breast care nurse is your go to and we are all here; someone is always online to read and answer or give you a like or an awesome. You can vent away and or ask as many questions as you like.
I was put with a Counsellor the day of diagnosis, she shadowed me all day as I went through mammogram, ultrasound, meeting the surgeon and biopsy..................she was very very good to me! She suggested to my hubby that he be the gatekeeper and just keep the negative nellies out of reach. Surround yourself with positive people and have the gatekeeper keep the others informed indirectly rather than directly. You need your sanity, you need to be able to laugh or cry, stamp the feet whatever you need to do without a frown or a comment of be positive, coming your way!
Take care4 -
Welcome @hendrix, I hear you with the hundred questions problem.
My big family is very concerned, would love to help, be supportive and all that. They do however live an hour away and all work, so they thought that showing support was to phone me all the time and ask about everything.
I got exhausted with it very quickly.
I just messaged everyone and explained that treatment made me exhausted, and talking on the phone tired me out dreadfully, so I would keep them all updated by email, and thank you so much for all their understanding etc etc.
So I sent out bulk emails updating a couple of times a week, and spoke to my parents by phone if I was up to it and emailed my younger sister when I needed to meltdown as she was the one I could talk to when I needed to lean on someone.
That has seemed to work for me. Everyone feels included, I don't have to say all the same things time and time again and I keep the information fairly basic, but I don't sugar coat it either.
It probably helps that half my family are nurses, and many of them have watched extended family members deal with cancer of some sort too.
I hope you can find a way that takes the pressure off you to be positive all the time, and yet keeps them informed.
We are allowed to be tired, overwhelmed, unsure, confused, scared, fragile and just plain fed up.
I am finally learning that I am allowed to say it too.
I spent most of my life behind a smiling mask of "everything is all right" if anyone asked.
Now I do temper it a little for who I am talking to, but mostly I am bluntly real.
Hoping you can find a comfortable answer with your family too, Jennie
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Hi hendrix big huggs its a crazy world with how to manage diagnosis and treatment.
Perhaps choose one sibling as the one to communicate info to the rest of family...i even wrote out info for sibling to tell my older parent
Yes keep it simple...say now is not the time to keep asking questions..as you dont have all the answers yet.
Say...I will need your love and support as soon as treatment surgery starts
say you need space..a quiet time to deal with the next few weeks.
I am someone who has tried to be very calm and my way was not to tell a lot of family..this has worked for me as i have not had to have lengthy chemo or rads treatment
Be firm in asking for space and time to deal with this diagnosis...treat yourself as well.. massage and mind matters relaxation web sites are a valuable tool to engage with in your own time. All the best Bright
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Thank you everyone...I feel better reading your comments...it's not just my family lol0
