“The I in illness is isolation, and the crucial letters in wellness are we.” – Unknown
I very recently learned a friend that I don’t talk to often has cancer. She has known a long time and told no one in her family. She is now undergoing chemo and had to tell some of her family. She is angry and bitter and no one is to know under any circumstances. Of course you know how this goes. Those who do know are so burdened by their grief they must talk to someone.
I was asked to speak to one of those sworn to secrecy and in pain and suffering for her loved one. Perhaps I could help on the research of finding the best treatment.
She has already started treatment so it will be somewhat mute, but I will certainly do what I can.
I can only call the other relative (the one who knows) after a specific time and we are in different time zones. I was going to call last night, but after our wonderful Tahoe trip this weekend, we were exhausted and I just didn’t feel that I would be able to really be together enough to make that call. You know me by now – I will give it my all but I know it will be a bit consuming and I wanted to make sure she has all of me when I pick up the phone. I have to mentally be there to receive her pain into my life, which I know is profound. Coupled with the cancer diagnosis of one she loves dearly, the added stress and dimensions of the anger and bitterness of the patient has compounded the grief tremendously.
Of course this is the complete opposite of all that I write about and all that I believe. You need to reach out, you need to ALLOW people who love you to participate in caring for you. As much for yourself as for them.
And of course, you don’t have to, I mean, no one can make you let your bitterness go and reach out to your loved ones who care. It can be a very, very solitary journey even when you do reach out. But it will definitely be a very lonely one if you choose to exercise such control over others in the midst of having NO CONTROL! Perhaps that’s what is going on… trying to have control over SOMETHING!
It is very painful for me to learn of this. She is very well aware of our journey. She was ill when Dave saw her last and he is struggling with why she wouldn’t tell him, with all that he has gone through, with all of her support toward him. She denied him the opportunity to reciprocate. It is all so personal. But what can you do?
I was talking to the one who called me (who isn’t supposed to know), and I suggested that the person that I can really help is the loved one who is in so much pain with the situation. There isn’t much I can do if the one who has the cancer has closed herself off from her family, friends and all those who have loved her all her life. Yes? Wouldn’t you agree?
It seems that there are those who reach out to many in their suffering and then those who take the route of the martyr. I find it is hard for me to say or write that quite frankly. It isn’t very complementary. But I don’t know quite how else to describe it. I don’t say it lightly or without genuine compassion. I firmly believe it is the wrong road to go in your healing process. Which makes me wonder if healing is something that the one taking a martyr stance believes isn’t possible?
I have not really sorted it out for myself, thus the rambling… Your thoughts on this would be quite helpful to me and perhaps others. What can you do? I can’t call the one with the cancer without causing turmoil for those in the mix sworn not to divulge this information. So for now, I will focus on those folks who are suffering and want to talk about it. What else can I do really…
I would say if you are reading this and you have cancer and you are keeping it all to yourself, it can have unintended feelings of cruelty toward those who love you dearly. Don’t do it, please. You may be trying to protect, you may be angry, whatever your motivations, it can only lead to hurtfulness on a fairly large scale.
When you have cancer it is perhaps the first time you have ever felt a lack of control in your life? And perhaps that is part of the lesson that is needed to be realized. Learning to let it go. Taking the ride you have been thrust on without your consent and holding on tight through all it’s twists and turns. Finding out that to not have control gives you control in areas you have never explored. To be stopped in your tracks and ponder things like love, honesty, viewpoint, faith, true importance, family, friends, the smell of a beautiful flower, the song of a bird outside. Discovering that your family, friends, and even strangers can and are willing do something for you – for a change… I don’t know the answer to these questions. I’m just pondering them out loud.
For those on this journey for awhile, don’t you sometimes feel like you have the secret to life? That you ‘get it’. The stuff you used to try to control and get others to participate in… you have learned to let it all go. To laugh at the muddy footprints tracked in on the mopped floor? To realize that you do need to ASK that the garbage be taken outside instead of expecting it to be noticed and handled by others? I find now that instead of being angry, I might get annoyed, but even in the annoyance it is one of genuine laughter, with a shake of the head, a shrug, what are you going to do? There is so much I just don’t care about anymore, and some of it I should, and I’m trying to get back to that balance of caring about it, but with less angst. Wouldn’t that be cool? haha
I’m still riding this wave folks!
And P.S., what is TT (Total Therapy)? Please forgive my ignorance on the subject
Lori
I have just started a tour around the internet looking for people who understand MM and involves young people.
My husband was diagnosed at 40, ten years ago and we just got “the talk” today about how the end will probably play out
After 10 long years I am alot more scared than I thought I would be. I am the picture of strength, People always commenting on how strong I am and how wonderful I am and really, I do not want to hear it. I am doing what I have to do because someone up there decided that was what was in store for me. I really hope that all the people that see me as “special” or “strong: would do the same if in my shoes. I choose to believe that, and that I am not special. My husband is special for enduring ten years of pain and suffering. After 4 operations, a stem cell transplant, 4 different kinds of chemo (currently on Revlimid), 10 years of side effects, 8 years of chronic pain, and 5 years of fighting the institution that contributed to this illness (benzyne exposure) and losing, he now finally has to sit down and face reality after all this turmoil. The quietness of it is wierd. He has commented in the past that the reason he keeps so busy is so the cancer can’t catch up with him. Well, it has now. He is ready fo this. His quality of life is poor but now his main concern is making evertything OK for me so I do not have a worry in the world. He will hang on unitl he accompishes that, of this I am sure, then he can finally let go and rest in peace. I try to tell him I will be fine and dont need him to stick around to fix rhings for me because I feel guilty that I am holding him back from a better place.
After this very long trial, I really thought I was looking forward to it ( I hope you understand that) but I am not. I am scared to be alone now. This has become a way of life for me and I am afraid of what wull happen to me when I no longer have my hubsand to look after and worry about.
I will keep this brief. If you care to hear more of my story please let me know and I will share now. I never enjoyed sharing before and I hope you also understtnad that and believe that I am not just jumping on a bandwagon to see if I can find some people that might be able to share some simillar experiences with me now that I am ready to share.
I will stay strong and “special” for my husband, but really, what is going to happen????and can I really handle it?
Thank you Angie. I learn from you too!
You are just such a great person Lori. I am so grateful that I found you when I needed to reach out. I learn from every post you make. And yes…I am very grateful that I have learned all those “so not important” things that “normal” people still get upset about.
Thanks for reaching out and helping others!
Thanks Hugh and good job!
I spoke to the family member last night. It went very well. She actually has a pretty good handle on things and the patient had had a good day. Anyway, offered a few tips and availability anytime she needs to talk or have someone listen. She appreciated very much my reaching out. I told her I was sad that we couldn’t all participate in the journey but that we would “honor” the wishes of the patient and not too worry about any of that. She just needs to work on getting well. It was a lovely conversation and I’m relieved.
I agree with your philosphy 100%. I have met more nice people, just discussing why I am masked on the airplane to my seating partner! And they have so many questions about stem cell transplant that they are glad to learn about the positive aspect of how much it helps so many!
Hugh
Thank you Sandy. All great perspectives. I appreciate very much your taking the time to communicate your very sane views.
I recall a similar situation in my life quite awhile ago. The individual that had cancer really wanted to punish everyone for prior neglects and hurts and took the martyr role in hopes of accomplishing that, I suspect. But, it was a nephew or niece who uncovered what was happening and caused a family reconciliation which was gratifying for all.
There is doubtless some earlier grief underlying the martyr/cancer patient’s position which has not been cleared out and what better time than now?
And quite likely serious depression, which should be addressed by the medical team.
Cancer is such an out-of-control disease, whatever kind it seems to be, that it is interesting that you address those precise issues of letting go of control, letting life take you where it will.
My relative who has MM once said to me, “I truly believe that this is a hiccup in my life – we will attack it, work with it, do whatever is necessary and I will come out the other side better for it and go on living.” The key phrase is “go on living.” Because until you are dead, that is what needs to happen.
However, depression is a critical aspect of any dis-ease, and also counseling. Getting a terminal diagnosis really is not something anyone should tackle all by him or herself. When you feel so horribly ‘out-of-control,’ besieged by challenges never dreamed of, and on top of it all feeling really ill, there are stages of coming to terms, and a counselor is a valuable asset for the patient.
So, although I don’t have cancer, I have had – and am having at present – some out-of-control experiences and financial challenges, one thing I know for certain is that trying to go it alone is as deadly as the disease being fought.
A long post, hopefully some help to you, and to those who might read it, about keeping silent about ‘things.’ Some subjects are indeed only for personal reflection and meditation. But in other cases, friends can help and even want to.
I guess the only caveat is that ‘unburdening’ on friends can be as harsh as staying silent if there is not some balance of sharing. I don’t know the individuals involved here but in summary my thoughts are that:
1) Patient should be encouraged to discuss everything with the medical team in hopes of getting various kinds of assistance to address all the issues.
2) Medical team, within HHIPA regulations, should share issues that family can assist in solving.
3) Medication and exercise can help a lot with depression which is both physical and emotional.
4) Patient can set up controls like (who can know about it, who can come and see me, what things can be done to help) to assist in managing that ‘out-of-control’ feeling, and
5) Counseling for the patient and/or family can help everyone to better understand all of what is going on… past, present and future.
Hope this helps…