People who just don’t get it
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April 4, 2011 at 6:52 pm #49146joolz822Member
After reading these posts I feel very fortunate. None of my friends/family have deserted me, in fact they are all making an effort to really be here for me.
Quite possibly the ones who have stepped away don’t know how to react/act with you. Cancer is a very scary thing and and some folks just don’t want to deal with it. That’s a shame because they aren’t the ones who actually have the damn disease. It’s a very selfish reaction.
Write a letter, send emails. Try just another time and if you don’t receive replies just shrug your shoulders. It’s their loss.
Good luck.
April 3, 2011 at 9:51 pm #49145marionsModeratorPersonally, I don’t understand it and I do not have much emphathy for those kind of people. There is so much to talk about. Since when is a person fighting cancer not able to communicate?
Ughh.April 3, 2011 at 4:07 pm #49144lisaSpectatorYou really do know who your friends and family are.
At first I felt guilty that I hadn’t died quickly enough before they ran out of sympathy. Then I found friends I hadn’t heard or seen from in many years so that was a blessing. I understand how hard it is to visit someone with a terminal illness. What do you say? as for myself I would rather talk about the other than myself and my boring life
April 3, 2011 at 2:11 am #49143mlepp0416SpectatorTo all:
Those ‘friends’ and ‘family’ who do not come around anymore? It happens to all of us and my take on it is that THEY are the ones who are the losers! They lose the time that they could have had with the person with CC. They lose a friend, brother, sister, mom, dad, uncle, cousin or whatever the patient was to them.
In the end all that matters is that the person experiencing CC will KNOW who their true family and friends are! It’s the person that stops in for a quick visit, who brings the paper over for you to read. It’s the neighbor who stops over with a dish of dessert that they know you like. It’s the person who NEVER stops caring just because you are sick.
As for the others, maybe your life is BETTER without the person who stopped coming around. CC patients need POSITIVE people in their lives, they need people who really CARE about them as a person.
Nuf said.
Margaret
April 3, 2011 at 12:52 am #49142lainySpectatorHello Simon and Bravo to Susan for doing the walk in June. What a brave and courageous lady you are married to. I don’t know if you have talked to the ONC about the nausea and loss of appetite but there are meds for both. If she defied the odds in a horrific car crash perhaps she will also be able to defy CC. I think I shall refer to her as Miracle Woman!
April 2, 2011 at 11:15 pm #49141stiMemberHi Susan, thank you so much. This is a very difficult journey, and just when you think life is just so impossible, people you have never met can be an incredible lifeline, helping to disolve that incredible feeling of isolation. But more than that, my CC family is teaching me new levels of understanding in humanity & compassion – I never thought I would be this lucky. Strange comment I guess given our predicament. Whilst my wife is planning to do a 5km walk for life in June, her veins are up much more now, her hair is a lot thinner & less than it was, and nausea is featuring, as is a much reduced appetite, pains in her stomach and up her body generally. This is a cruel, cruel illness. So sad that 5 years ago she defied all odds by surviving a horrendous car crash (the prognosis I was given was she would be at best a vegetable if she managed to survive), only to experience this – how much must one person do to prove they want to live?Simon
April 2, 2011 at 5:34 am #49140slittle1127MemberDear Simon – You are so right – some people that you think would be there to provide support are quite noticeably absent. Hopefully others step up to the plate and are there for you during the tough times – like us. We are your CC family and will provide whatever encouragement and support we can. We have walked this walk and KNOW what you are going through. We know what it’s like to be on a roller coaster and not enjoy it. Blessings to you. Susan
March 31, 2011 at 8:41 am #49139stiMemberJust to say it’s so good to hear I’m not alone in this. When my wife was diagnosed 2 years ago, my brother (who lives just 8 miles away) sent me an e-mail saying there’s probably a cure for this somewhere on the Internet, and I haven’t seen him nor his wife since, and I think my parents have been round to the house 4 times in the last 18 months. How true “the show must go on”, and it does. It is a shame some people just can’t cope with something like this, it’s just a shame they can’t rise above that and try to understand what we’re going through, living with this nightmare. What I would say from experience, look to your inner strength, trust it, and you will amaze yourself – I have.
Good luck and love to you all, this is a great family to be part of, I feel priveleged to be part of it. Simon
March 30, 2011 at 3:03 am #49138darlaSpectatorOk everyone, I guess I need to get my say in here, too. It may not help, but atleast knowing others are dealing with similar situations may be of some comfort. My situation is a little different. My husband passed 2 1/2 years ago and it has not been easy. I too have found that although many people were here for me in the beginning that has all changed now. They have all gone on with there lives and I am still alone. Without going into all the details, suddenly the past few months our younger son has cut me off much as your daughter has you Jamie. I also have no idea of why. I have tried what Lainy suggested by suggesting we need to talk just the two of us and got no response. I recently heard through family that his girlfriend was very ill and waiting for the results of some tests. He also has some health problems, so I emailed him asking how she is doing and hoping they are both doing OK and asking that he let me know how things are going. I got no answer to this either. After losing Jim, I know how precious our time is here as no one knows what tomorrow will bring. I feel I have done all I can to reach out to him and have finally realized I have no control over this and need to just let it go for now and hope that some day this will be resolved, hopefully before it is too late. He too may regret his actions some day, but that is something he will need to deal with.
I feel for those of you who are also dealing with these issues, especially those of you also fighting CC. You definately don’t need the added stress.
Jamie, Missy, Kevin and everyone else here, I am thinking of all of you knowing how much this hurts and how it affects us and hoping we can all deal with these people and situations as best we can. And quoting some of you, yes “life is too short to be an ASS” and for all of us “it is so damn hard”!
Everyone take care and God bless us all.
Love & Hugs,
DarlaMarch 30, 2011 at 2:35 am #49137missielwhotmail-comSpectatorThank you all! Jamie I pray that your daughter comes around. She will be sorry and that breaks my heart. I really get upset when people say that their mothers drive them crazy or they don’t speak to them. My mom died a week after I had my 3rd daughter it was a real blow to all of us she was only 44. You never get over a loss it just gets more bearable to live. Your all right I have to take care f Kevin and they will be sorry. As far as his parents I don’t think they get how real this is. We are going to see them in a few weeks I can’t wait to get away from the cold we really need this and yes all my kids are going with us!!Honestly you guys are the best you don’t know how nice it is to be able to talk to people who understand all of this crap. It”s funny how people care at the begining but as time goes on the one’s who care are always around and the one’s who don’t know how to care are never around. All I know is when my mom was sick with her Breast Cancer that I wanted to be with her always. She was my bestfriend and I do believe she is watching over me and Kevin everyday.
I guess all we can do is take one day at a time and keep our heads held high because we are all strong and we are living this everyday.Good night God Bless all my new friends
March 30, 2011 at 2:10 am #49136lainySpectatorHi Jamie. I found your post just heart breaking. If I may make a suggestion. I would sit down and write your daughter a letter. Do not be angry in it, just that you don’t understand why this is happening and mention what you said about the do overs etc. I would not dwell on the CC part either as this is more about why she is cutting herself off from the family. You know what to say. I feel you can’t make things worse and may even get through to her or at least find out whats up. Also the writing of the letter may help you release some of the hurt. If you don’t want to write perhaps inviting her to lunch just the 2 of you might work. Good luck, you sure don’t need this extra junk!
March 30, 2011 at 12:04 am #49135jamie-dMemberBoy Missy your post really hit me hard. I feel exatly the same way. In the beginning people called, stopped by and now I hardly hear from anyone. What is the hardest is my own daughter. She turned 20 this summer, got married to a guy she only knew a few months, is expecting a baby any day, which was one of my goals to live long enough to see a grandchild (thought it would be her older brother). She has cut me off entirely the last 4 months. She wont call or visit. I dont know whether I will even be allowed to see my grandchild (in Dec/Jan I was so sick and hospitalized twice, I didnt even know if I would live to see the birth). She talks to her Dad when she wants/needs something but ignores her brother and I. Long story but I think the husband and mother-in-law have alot to do with it. But bottom line is I am her Mother and she shouldnt allow anyone to manipulate her into doing what she is doing. There are no do overs. She cant take back that they wouldnt come for Christmas after they had promised they would. That could be my last and they ruined it for me.. I cried most of the day. Everyone says that she will regret it someday. It hurts more than I can describe but as my son told me, I have to concentrate on the positives and staying alive as long as I can. I can’t do that if I am crying and depressed all the time. So I am somewhat at the point where I say to heck with those that choose to not enjoy my company while I am still here. They wont have the opportunity when I am gone. I enjoy those that are here and do care. Focus on the positives and what you do have not what you dont. I’m not saying it is easy, it took me months to get to this point and there are still days that I am disappointed and hurt. WHen I read other daughters taking care of their Mothers and missing them it really hurts. The cancer was really growing when I was at the lowest and now that I have started focusing on my son and the positives I had a more stable scan last time. Stress really does effect you. Even my oncologist said that the situation was having a negative effect on my health. Sorry to ramble on but I guess my point is that we cant control how others act. I feel like others have posted, that you are there for friends and family when they are in need. Alot of people run from illness or when the going gets tough. Give his parents the benefit of a phone call talking to them honestly. As a parent nothing would keep me away from a sick child, as a child nothing kept me away from taking care of my parents. Unfortunately not everyone feels the same way. Like others have said, they will regret it later.. but that will be there problem. Sorry again for the long post, but this topic really hit me hard. I know exactly what sadness Kevin is feeling. Take care and God Bless,
JamieMarch 29, 2011 at 9:13 pm #49134nur1954SpectatorThis is such a difficult subject. Some people just don’t or can’t deal with such an overwhelming diagnosis. I know for me — I would never have changed having John move home with me and his Dad so I could take care of him, but he wasn’t married and I guess things were a little different because of that. I agree with Lainy….don’t waste the energy on those things right now. And I think you are right, Missy, that those people will regret it later on. But there is nothing you can do to change that, so focus on Kevin right now. People do feel like they are intruding sometimes, so a phone call telling his folks that Kevin might enjoy a visit might help. It’s all so damn hard!!!! Thoughts are with you – Nancy
March 29, 2011 at 8:52 pm #49133lainySpectatorGirls, I most adamantly do agree. We were fortunate in that people didn’t seem to leave us alone, but I found out there is plenty of time to be alone later! If there was someone who was an Ass, I just wiped them from my mind as I needed my mental and physical energies directed only at Teddy. I am pretty good at doing that. Missy, I am wondering if the parents really understand his CC. Perhaps they feel they would be intruding on you. I know nothing in the world would keep me away fro my child. Guess we just have to grin and bear it
and that goes for the ignoramases as well. Like they say on Broadway, “the show must go on”!March 29, 2011 at 6:33 pm #49132andieSpectatorHi Missy,
I totally understand how you feel and my Mom even more so. When my Dad was first diagnosed and chemo was an option friends and family would phone and visit but once my Dad was told chemo wasn’t going to be an option and he had a few months left, the visits and phone calls off certain family members and friends became less and less. This upset Mom and whilst Dad never said anything only “I have everybody who I want here with me” you could tell at times this hurt him. I know people probably don’t know what to say or how to handle things, and perhaps the people who didn’t visit were worried Dad would think “they are only here because I am ill”. At the end of the day they are putting their feelings before the patients, yes they may feel scared, they may feel upset but how the hell do they think the patient is feeling!!
Now Dad has sadly passed away those people who didn’t visit have voiced how they wished they had visited or phoned more, but they didn’t want to intrude. Well it’s too late to turn back time and it’s something they will have to deal with.
At times Dad didn’t feel up to visitors or the nurses were due in and he didn’t want people there the same time as the nurses. People had to fit around Dad, and the people thay really understood did, nothing was too much trouble.
Perhaps when they phone you could say “It would be really nice to see you, I know Kevin would like to see a different face than mine, someone different to chat to would do him and me good”.
And yes life is to short to be an ass!
Keep strong xx
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