Support from family and friends

PDKonstan

This is actually my first post. About a month ago I was diagnosed and from there I was on fast track with appt.’s and surgery. My follow up to my surgery is tomorrow and mid April I will begin my radiation. Since I am new to all of this, I have to admit what I find very disturbing is who you think is going to be there for support turns up not supportive at all. I don't know how many of you have encountered this or not but I am quite baffled at it. I am usually a very private person and I continue to be to some degree, however, since my diagnosis I have reached out to those who I thought would be supportive and wham, I was in for a surprise. I have to admit that I just don't get it and I struggle at trying to understand. However, I can say that there have been some people who have really shown me their support and for that I am very grateful. Any of you encountered this? And how did you deal with it?

PDK

disneyfan2008

Sorry you have had this
Sorry you have had this happening to you. I am sure most of us have it to some extent! I have some who were wonderful (friend who lived in Vt and me NYS drove down to be with me for surgery and drove home same day) I have those who have tagged along to dr appts!

Then some who years later said to me OH YOU had cancer right? totally clueless...

Even if some are not there they may be scared and not sure how to deal! others may just be selfish but best to weed them out now..HEHE

Try journal!

Wish you the best...remember take care of yourself and if anyone offers to help you..take them up on offer. I now tell people dont' offer if you dont' mean it because I WILL take you up on any offer..

Denise

lauraof4

support from friends and family
Hi I was just diagnosed and I am getting a lot of support. Your true friends will stick by you. Some people don`t know how to be supportive.
They deal with it in there own way. Try to stay around people who are there for you. The ones that are not try to look at it as they dont understand. I know I will come across those type of people also. Just try to stay positive and take a day at a time.

Double Whammy

lauraof4 said:

support from friends and family
Hi I was just diagnosed and I am getting a lot of support. Your true friends will stick by you. Some people don`t know how to be supportive.
They deal with it in there own way. Try to stay around people who are there for you. The ones that are not try to look at it as they dont understand. I know I will come across those type of people also. Just try to stay positive and take a day at a time.

Clueless
Denise is right, some people are simply clueless. My biggest disappointment were 2 of my closest friends who found it necessary to tell me how to handle everything (basically forget about it and move on). In hindsight, they had my best interests at heart, but it wasn't what I needed at the time. Then there were those who I least expected to reach out to me who came out of the woodwork. And there were some who just plain seemed to avoid me. Having a cancer diagnosis is an interesting time in relationships (for an outside observer). Those people who I got the most emotional support from were cancer survivors. Maybe for me it was more than the fact that they understood, but they demonstrated hope which is so much better than "you'll be fine". And it was hope, an acknowledgement that something awful was going on with me and that I would get through it, and knowledge that even down the road, there's still some fear and anxiety. And it's ok!

I think the bottom line is unless you've been there, you simply don't understand. And not everyone wants or needs the same kind of support. I went through some significant emotional pain learning to avoid sharing some of my fears with these friends and it changed my relationship with them forever. I doubt they even realize it. They were, however, there for me every step of the way - in their own way. I appreciate what they did for me. I also recognize that while going through diagnostic crap and treatments, I was more than a little focused on cancer. It gets old to hear about I think.

I hope for you as time goes on, you can look back on this and accept and even appreciate those friends who are clueless. It took a really long time for me.

Come here. We understand.

Suzanne

aisling8

Double Whammy said:

Clueless
Denise is right, some people are simply clueless. My biggest disappointment were 2 of my closest friends who found it necessary to tell me how to handle everything (basically forget about it and move on). In hindsight, they had my best interests at heart, but it wasn't what I needed at the time. Then there were those who I least expected to reach out to me who came out of the woodwork. And there were some who just plain seemed to avoid me. Having a cancer diagnosis is an interesting time in relationships (for an outside observer). Those people who I got the most emotional support from were cancer survivors. Maybe for me it was more than the fact that they understood, but they demonstrated hope which is so much better than "you'll be fine". And it was hope, an acknowledgement that something awful was going on with me and that I would get through it, and knowledge that even down the road, there's still some fear and anxiety. And it's ok!

I think the bottom line is unless you've been there, you simply don't understand. And not everyone wants or needs the same kind of support. I went through some significant emotional pain learning to avoid sharing some of my fears with these friends and it changed my relationship with them forever. I doubt they even realize it. They were, however, there for me every step of the way - in their own way. I appreciate what they did for me. I also recognize that while going through diagnostic crap and treatments, I was more than a little focused on cancer. It gets old to hear about I think.

I hope for you as time goes on, you can look back on this and accept and even appreciate those friends who are clueless. It took a really long time for me.

Come here. We understand.

Suzanne

Hey PDK
My experience was similar to yours -- I actually had more people run from me than embrace what was going on. The weirdest one was my dental hygienist. She refused to treat me during radiation even though the doctor said it would be fine. I now have a new dentist and hygienist:)

The people who disappeared, I don't really know what their deal is. Fear? I know them now to be less than what I once thought them to be, but I no longer worry about it. They're just not in my inner circle. And yes, some people I'd never expect to showed up and delivered.

It was all very odd, but then we're human and who knows what's going on in other people's thoughts and hearts. I remain grateful for the good that came my way and thankfully, I stopped thinking about the weird stuff.

Sending you positive thoughts,
Victoria

camul

Like others here...
The ones I really expected would be here for me, couldn't deal with it for some reason. Possibly fear, others whom I never would have expected, would just show up with soup on really cold days, food after chemo days, or just stop by to play a game or visit.

Even some siblings can't deal with it. I have heard form others that say it is too hard for them to see me ill. When they do call they will ask how I am doing and then change the channel... immediately. I come from a large family and I only hear from about 4 regularly.

When I do run into really 'good friends who I haven't heard from in almost a year', I will be cordial and when they say we need to get together for lunch or a movie, I smile and think I don't think so and be done with it. At first it hurt but I heard from other pinks on this board that they went through the same. Can't force people to do what they have chosen not to do.

I still have a great support system.

Carol

PDKonstan

aisling8 said:

Hey PDK
My experience was similar to yours -- I actually had more people run from me than embrace what was going on. The weirdest one was my dental hygienist. She refused to treat me during radiation even though the doctor said it would be fine. I now have a new dentist and hygienist:)

The people who disappeared, I don't really know what their deal is. Fear? I know them now to be less than what I once thought them to be, but I no longer worry about it. They're just not in my inner circle. And yes, some people I'd never expect to showed up and delivered.

It was all very odd, but then we're human and who knows what's going on in other people's thoughts and hearts. I remain grateful for the good that came my way and thankfully, I stopped thinking about the weird stuff.

Sending you positive thoughts,
Victoria

Thanks
Thanks for all the supportive thoughts. You guys certaintly brought up some points that I didn't think about. And your right I need to come to you guys for support and positive thoughs!

Patty

ndsueaz

aisling8 said:

Hey PDK
My experience was similar to yours -- I actually had more people run from me than embrace what was going on. The weirdest one was my dental hygienist. She refused to treat me during radiation even though the doctor said it would be fine. I now have a new dentist and hygienist:)

The people who disappeared, I don't really know what their deal is. Fear? I know them now to be less than what I once thought them to be, but I no longer worry about it. They're just not in my inner circle. And yes, some people I'd never expect to showed up and delivered.

It was all very odd, but then we're human and who knows what's going on in other people's thoughts and hearts. I remain grateful for the good that came my way and thankfully, I stopped thinking about the weird stuff.

Sending you positive thoughts,
Victoria

To Aisling 8 about Dental Hygienist
Please don't be too hard on your dental hygienist. She probably just had your best interest in mind when she declined to treat you during your period of radiation. Some people don't realize the hazards of having the teeth cleaned as it seems so harmless. In fact, bacteria from beneath the gumline can be quite "potent" and as the teeth are cleaned some of this bioburden can enter the bloodstream through the gums. It can be quite a problem for some, especially those whose immune systems are undermined. Not a problem for most people but those with immunosuppression should be aware and very careful. I have a feeling that she figured that your dental cleaning, although not an elective procedure, it was at least easily postponed for 2 months until your body has a chance to build up a bit. As far as the doctor approving it, I don't know if you meant the dentist or your oncologist. Dental Hygienists have a responsibility to do what is best for their patients, and sometimes that means not treating even when a doctor has approved it. It can be a legal matter and it might just be that the hygienist was wise to withhold your treatment for a while. On the other hand she/he should have explained all this to you thoroughly so that you understood the reasoning behind it.

My personal feeling is that if you need a cleaning, have it before your cancer surgery, chemo, or radiation begins. And then, have it repeated after you are feeling better following all your treatment. Of course, problems do arise that need immediate attention and that should be discussed directly between your dentist and oncologist.

I hope you are doing well now and have the support you need. I have been cancer free for 3 years now (triple negative IDC). Had bilateral mastectomy, chemo-ACT, and 33 radiation treatments. Kudos to you for taking care of your dental needs at a time when they would be so easy to ignore. People with poor dental health really put themselves in a position for poor outcomes when they encounter other medical problem, namely cancer and heart problems and diabetes.

Best to you and I hope this didn't come off as a lecture. It isn't meant to be. I was a hygienist and was unable to practice effectively after I was done with treatment. I did try for 6 months but it just took too much out of me. My memory seems impaired and the neuropathy from chemo bothers my hands and feet.

Hugs,

Sue

New Flower

PDKonstan said:

Thanks
Thanks for all the supportive thoughts. You guys certaintly brought up some points that I didn't think about. And your right I need to come to you guys for support and positive thoughs!

Patty

How did I deal with it?
Patty,
I moved on and forgave them. While I am not a friend with them anymore, I do not have any feeling or emotions about them , however left me wondered. Since my diagnosis I have taught myself not to be upset about minor stuff, continue moving forward and enjoy life.
Good luck with your treatment.

carkris

camul said:

Like others here...
The ones I really expected would be here for me, couldn't deal with it for some reason. Possibly fear, others whom I never would have expected, would just show up with soup on really cold days, food after chemo days, or just stop by to play a game or visit.

Even some siblings can't deal with it. I have heard form others that say it is too hard for them to see me ill. When they do call they will ask how I am doing and then change the channel... immediately. I come from a large family and I only hear from about 4 regularly.

When I do run into really 'good friends who I haven't heard from in almost a year', I will be cordial and when they say we need to get together for lunch or a movie, I smile and think I don't think so and be done with it. At first it hurt but I heard from other pinks on this board that they went through the same. Can't force people to do what they have chosen not to do.

I still have a great support system.

Carol

This is so common I think it
This is so common I think it should be put on the chemo papers on what to expect during treatment. I dont know why people do this but it has made me want to be there for others more. My best friend did not call once this last time and I was VERY sick. I have forgiven her but will never feel the same. it has affected our relationship permanantly. There is a person at work with lung cancer and i send her things periodically even though she wasnt particularly supportive of me. My way of paying it forward for all the awesome people who were there for me. We are here and will understand, try not to let it affect you as it isnt YOu its them.

Cinkal

I think that it is quite
I think that it is quite common. Some people do not know what to say or how to react to cancer patients. The people who meant the most to me were by my side through the entire journey. There were others that were initially there, but drifted away. Because I handled chemo and radiationw well and pushed myself, I appeared to be fine and not need help. I was uncomfrtable to ask for help. My true friends gave me support and help throughout. Some people just don't know what to do to help. I now wish I would have spoke up and accepted help when offered.
Some people would ask me how I was and then immediately change the subject. That would irritate me, but maybe they ddidn'd know what to asy.
Good luck to you and stick close to your true friends