Dear Una and Gaylene,
Thank you very much for taking time to write thoughtful replies. Now I do feel that I absolutely must reply back to both of you, because of many reasons that will become clear further down in my post. But before doing that, I want to make to sure that you understand that all the pain and anger and other negative emotions that will come through have nothing at all to do with you or how I feel about you. You are dear friends to me here, just like a lot of other fabbers are. I trust that we are all grown up and mature enough not to take opinions and feelings like something against you. And I thank you and everyone else in advance for that. This is also going to be very long, a story if you want, so you have been warned. And there is really no need to read this for anyone not up to it, as it is very heavy.
There is one point that I do not think comes clearly enough through my posts: I AM ALL ALONE HERE! Unlike Una's friend's situation, where the husband with cancer has Una's best friend, I do not have a spouse. He also has family members, I do not have that either, not on this continent. Most people that suffer from cancer have one or the other or both. I do not and that is nobody's fault. It is just what it is. My friends are all aware of this very well. But that is what makes the involvement of friends, instead of beneficial but optional, like in Una's friend's husband situation; an absolute necessity. Without friend's help I do not literally stand a chance. So my situation is much harder that that of average cancer patent situation, which is already very difficult to begin with. Now of course, this brings us to the already mentioned point of what one can expect from people that are friends but not family, because at the end nobody really has to help, right? Everybody can say something along the lines " to bad for you, I feel for you, but I am just your friend and this is not something I should be expected to do as I am not your family. On the top of it this is making me feel things I do not want to feel so you are really nothing else to me than a big burden right now, so I am leaving this relationship." Have my friends said that? No. Have they acted like it - some completely, some to a certain extent. If I am horrible and selfish person to expect some degree of help from people I call my friends, since I have nobody else, in this horrible situation. then I guess I need to accept that about myself.
Now, Una's best friend was the main caregiver for her husband. I do not have one to to all that work for me. I do not even think that I had right to ask any of my friends to do anything of the kind, because they are not family, so I did not. Moreover, Una was also acting like a coordinator to help - again, I did not that have that either. Una, you know just how much work you had to do, that your best friend had to do, all the feelings that come with that. Now imagine that the cancer patient him/herself has to do both of those jobs in addition to actually dealing with the illness itself. Now that is my reality. My cancer therapist and many other medical professionals have told me that this makes my situation especially difficult but that I have to somehow try to to it all, because, really, there is no alternative. So i did, the best that I could.
Because of some particularly painful specifics about my cancer that I yet do not have strength to admit publicly, I have chosen not to make the knowledge of it public. I restricted it to people at work, for obvious reasons, and to about 7-8 people I thought I was closest with outside of work. I have asked those 7-8 people if they were willing to help, plus 3 coworkers I was closest with. I explained a lot what would that entail and that I would not take it against anyone to refuse. Nobody refused. So the circle and email list were formed. Everything started with a surgery in September which required me to have constant supervision for the next two weeks. Like Eliza earlier said, logistical help. So my friends were AMAZING for that. I will never be able to repay them enough for the help throughout those two weeks. Me being extremely hurt by the subsequent abandonment by some of them does not negate my gratitude for this help. A friend acted like an organizer, told me that I should not have to deal with that on the top of everything else, so he organized it. Everything went well after the surgery in terms of help. And I remember crying from gratitude and thinking that this whole thing just might not be that impossible to go through if I had such support. However, what happened later was very different. And such organization did not happen again.
My radiation treatment ( shorten to rads from now on) was set to start at the end of October. Throughout that month I have barely heard from anyone but I thought that they were busy with their lives, which they were, and saving their support for when it is really crucial, like when my treatment starts. My birthday was early October and half of them did not show up. My best friend did not even call me, she just sent a text message. Right before the rads, I have sent out a long email to the list, explaining everything that will happen, like I did before the surgery. I did all the possible research and did everything I could to make whatever I expected from them as easy for them as possible. I clearly specified what kind help I would need - with food/meal preparation and emotional support. I even spelled out what kind of emotional support - that all i really need is people to be there for me and listen without even expecting them to do anything else. I have also opened an account on a website for sick people where I could post, blog style, my progress. There was also a calendar feature for readers/friends to organize meals/whatever else was needed.
Now, before I go on, there is one friend, lets call her S, which has been so incredible that I will be indebted to her for the rest of my life. She is from the same country as me which might make the bond deeper. We were good friends, but not the best of friends, One crucial logistical aspect was that the rads required me to go, every work day for 6 weeks, to a different city an hour drive away. Now I do not drive but that did not even matter as I would not have been allowed to anyway with all the drugs I had to take. The drives were a huge problem. So she had her currently unemployed father come from a different state, stay with her in her tiny studio and drive me to rads every day !!! That kind of generosity is mind blowing. He would have stayed the whole time but I made them go back home for Thanksgiving and my coworkers took care of the remaining 7 rides. So whatever I say about people who opted out does not apply to her or two coworkers who were also very supportive.
Now the rads started and nobody called. Nobody came. Nothing happened at all. After two or so weeks of waiting I started panicking and was not sure how I am going to deal with food as i was feeling worse. So I signed up for meal delivery by a local charity organization who caters to people in need like me. I am still incredibly embarrassed by it but I simply had no other choice. S's father was taking me grocery shopping too but it was becoming difficult to make food. Food issue solved, by me. All that was left was emotional support which never came. A week before Thanksgiving I could not even go to work anymore for those couple of hours that I did. I was so slow - it took me five weeks to complete a project that would have normally taken me one. I sent a new email explaining to my friends that I am too sick to go to work and would be staying home , and if they would like to visit this is when I am home. Still nobody came or called. And the rads finished. I spent Thanksgiving alone, just as I am spending Christmas alone. ( I did receive invitations from S and some other people to go spend both holidays with them and their families in other states, but that required traveling that I was not in condition to endure.)
To be fair, I did do a couple of going out activities like a dinner or brunch with a couple of friends during early rads weeks. There were few text messages here and there. Those are the ones that I consider semi-opted out. But throughout the whole 6 weeks of treatment, I had total of two visits towards the end, one from S and her father who were already doing so much and one from a neighbor. There were at best two phone calls a week, from either other friends who lived far away or YLF members. I was and still am completely crushed. Few of my friends even read that support/blog site. Nobody organized or did anything to communicate.
So what was I supposed to do, make a schedule of who is supposed to call me or visit me when for emotional support? I was and am still feeling like a beggar for every act of help I did/do receive. It is incredibly humiliating and difficult to be in this situation. Depending on others is an absolute nightmare. Especially when you have no choice and the others are not your family. To make yourself vulnerable enough to ask for something that is absolutely necessary fully knowing that you might get rejected. And I did, both ask and get rejected. And I only asked when I really had to. To illustrate this, for two months I needed to go to physical therapy , which was at a location not that far. It would take 10 min drive, or over an hour with a bus and walking to bus stations. No matter the weather or how bad I felt, I have never asked anyone to drive me there. I went myself using the bus. I DID NOT ASK FOR ANY HELP UNLESS I ABSOLUTELY HAD TO.
So Una, yes I know that people have issues and their own problems. I actually happen to know very well who of these friends were having some problems because guess what, I was usually the one helping them with these issues before i found out I had cancer. In my head and heart, none of those justify not picking up the phone once every two weeks for 15 min after all my emails and blog posts that said how much I would like visits/am depressed etc.
S even told me that I went a bit overboard with those and that it is more than clear what I am asking for and that if people are not doing it that is because they can't or won't, not because they do not know what I need. I did have such care pages like you mention and since I already took care of the rides and food on my own all i asked there for was emotional support. Of course I did not say : "pretty please come visit me because this loneliness is killing me and I am so scared and so alone and falling deeper and deeper". I posted something more like " I am so worried about this depression. I am depressed about the upcoming holidays. etc". Most of my friends did not even read those pages despite being invited to. What else should/could I have done??? I felt like I did not ask for that much, but maybe I did. Maybe I am selfish and self-centered because I expected these friends to occasionally call or visit as it suited them.
Gaylene, I did not drop that friend, I thought I made that clear. Quite the opposite, we are giving it a try. Against my better judgement and everything Sharon, who has been through his as well, warned about being vulnerable around people who were already careless. And the friend herself warned me she might not be there for me again when I need it. And I am pretty sure that will happen indeed and I will be crushed again. The friend herself expressed the same worry, how she herself thought we should not even try because she is pretty certain she will hurt me again.
I did not drop anybody. I will give yet another chance to everyone who wants it. I do know that the same thing will probably happen again. Some people do not want me in their life anymore at all, period. Despite me not saying a single word to them about abandoning me, they are ignoring my emails asking them how I can give them their Christmas presents. As I have also already said, I MIGHT HAVE ANOTHER, DIFFERENT CANCER. The first cancer might come back or it might not be even gone. I will still need lots of help, either logistical or in best case just emotional. My cancer story is not over. I can not even start thinking about picking up pieces of my life.
It hurts me tremendously, like Sharon already said, when I am supposed to understand and excuse and support them, my friends, for how they are feeling about me being sick or how they are not being able to step up. It is just to much to ask of me in this situation. I am already the patient and my own caregiver and organizer and I do not have anything left emotionally.
The purpose of this whole thread for me is not to understand why my friends left. I know why, I am actually not that stupid. It doesn't really help me at all, that knowledge. The purpose is really twofold, to deal with it by typing my words on this screen as I still can not find a therapist, and to see what can I count on from now on. Because what is done is done. These people are gone and they either do not want to be back or do as long as I agree to accept crumbs. But I just can not settle for crumbs of friendship anymore.
So yes, I am learning to accept that all I have are S and those two coworkers. And I am super careful not ask anything of any of them too often because I am terrified they might be gone too. I will find a therapist. I will find a local support group.
And now excuse me while I go cry for hours again.