I can see how isolating metastatic cancer can be already.1
It has become hard for me to be around other people.
I find myself hiding as much as possible.
When I am in the company of others my mind wanders.
I can’t focus. I feel the need to retreat.
For the time being I just can’t relate to others’ lives which only 6 weeks ago were so similar to my own. Now… we are a world apart.
It’s not their fault. It’s just that circumstances make it so that I am selfish. I try to conserve my energy as much as I can.
Already I can see relationships suffering. There is a fine line between giving space and putting distance. Some are already dropping away, and we’ve only just begun. Others have risen to the occasion and helped more than I could have dreamed. Only true friendships are going to make it under these circumstances. Sometimes the isolation comes from being shut out. Sometimes it comes from locking yourself away.
Phone calls go unanswered, emails often do too. Thank you notes don’t always get written, social commitments get canceled or never scheduled in the first place.
I know that people cannot truly understand.
I don’t want a support group right now because metastatic cancer has a wide range of outcomes. I don’t know if I will be in a rapidly progressing group or not. I don’t know whom to look to that is “like me.” There is no way to know which group I will be in, who my peers are.
Right now I am very sensitive to death, to pain, to suffering. It’s very hard for me to see right now. I’m too raw. I just don’t think I’m ready for a group. But I won’t say I never will be. I need to talk to my oncologists about whether they have patients like me.
It’s difficult to listen to people complain about trivial things, normal things, things I was complaining about two months ago.
Now those complaints just annoy me, or make me sad.
I want to scream, “I want your problems!” And I do. I want that life back. I want to turn back the clock. I just don’t want it to be this right now.
One of the things that bothers me the most about this disease is the knowledge that the way I feel right now is the best I will ever feel for the rest of my life. It’s only going to get worse. That thought terrifies me.
When you feel crappy you want the time to go faster. You just want to get through it.
The problem is that what you may not have is time.
It’s a conundrum. You want the time to pass, but this is the only time you have.
I know so many people say, “No one ever knows how much time they have. You have to make the most of every day, of every moment.” I know that’s true. But the knowledge that there is something identifiable in your body that is a threat, is most likely to be that which kills you, bears a different weight. Of course the doctors don’t know exactly how much time it will be. There is no crystal ball.
Everyone tells me the stories of friends and relatives who were told they only had months and years later they are still alive and doing okay. I am told these stories every single day. I get it. I do. And I love them, they give me hope. But often those people’s diagnoses and particulars bear no relation to mine. Additionally, there are also stories of the people in the other group, the ones who thought they had years and didn’t. People probably have the good sense not to tell me those stories. But they are out there. It’s not that I focus on the negative. It’s not that I necessarily think I will be in that group. But anything is possible. On both sides.
The part that scares me: I’m only at the beginning. I hope that I will get stronger, gain acceptance as I get used to this diagnosis. But I’m not sure about that. I truly believe I could handle this better if I didn’t have so much worry about my children and what effect this will have on them. I wish I could protect them, shield them from this agony.
There are good days and bad days. I must do my best. But being the one everyone is watching takes a toll. Everyone will take their cues from me. I will set the stage for how my friends and family will deal with this: how I handle metastatic cancer matters. I am laying groundwork. I must do it right.
Some days that is an overwhelming task.
“Doing it right” doesn’t mean I have to be positive all the time. Doing it right means I have to be honest. It means I get up each day and do the best I can. For myself, for my husband, for my children, for others who may have cancer and those who will get it. It’s okay to be scared, and angry, and sad, and everything else.
It’s all part of this.
And for me, so is sharing.2
- I know these feelings are not unique to cancer [↩]
- continued thanks to everyone who has helped with errands and playdates and the like. I am grateful for your assistance every day. The isolation I feel is emotional… I am lucky to have many who offer their assistance even though it’s hard to take it. I’m getting better at it, in large part because some people make it so easy to accept. [↩]
Link to Twitter
Everything you do and say reaches a different person for a different reason, and you bear the weight of that with such grace. Please don’t worry about what we think. Share the moments in you that want to come out: the good, the bad, the beautiful… What you share is a gift to us. It is one I wish you didn’t have to share, and I pray that you are able to do so for years to come. xo
Thank you. That’s all. What you say and do matters and won’t be forgotten.
I will be with you every day. I don’t know if this helps. But you and your soul will never be alone, even when you are by yourself.
Lisa, there are days when I can’t imagine stepping outside and doing something as small as checking the mail. I find myself avoiding well meaning friends because I can’t bear another conversation in which I have to listen to them complaining endlessly about something the toddler did, or gossiping about a mutual acquaintance. Your blog is such a source of comfort for me, because it helps me to know that I’m not alone.
You write beautifully about such hard things to say. But I’m so glad you are sharing with us. I hope that writing continues to be therapeutic for you. (((many hugs))) going out to you and your family tonight.
Lead on, Macduff. (Yes, the misquote is deliberate.)
This could not be more honest, more gorgeous, more heartbreaking/affirming all at once. As my dear cousin says often, “Life gets life-y.” Everyone’s life-y-ness is different. I’m so grateful you are sharing yours.
I’m here, always.
I’ve never known any child who was damaged by being around a sick parent. The experience has always made them stronger and more compassionate. My sister brought my mom to live with her when she got sick. Her kids grew up around her. Recently, three of them wrote to her and thanked my sister for that experience
Wishing we could shield you from the agony with our love & concern.
Your words are beautiful honest, heart-wrenching and I can find no adequate words here to respond. But I just wanted to leave a footprint, to say that I am listening to you, learning from you and although I struggle to know what to say, many thoughts and much love are constantly on their way to you from the other side of the world. Big big virtual hugs and thanks, Philippa xoxoxox
I am a peer…there are lots of peers who “get it.” When you’re ready for a young mets support group, PM me. There’s an amazing group of women, but it’s also insanely painful to watch friends die, especially since they have the same disease. Thank you for being brutualy honest wih your feelings, I appreciate your ability to put in to words what I struggle with. Xoxo Jen
No platitudes here. Hated that when my life yook some tragic turns. You are doing this YOUR way, and that is commendable. I have a feeling that you will figure out what you need from others (or DON’T need) each day and have the guts to communicate this clearly to those around you who want to help.
Your children sound like strong, smart amazing beings and I know you will make sure that they will be okay. My thoughts are with you every day.
Lisa, Right now I can only be quietly here for you due to issues in my own family. Should you need more from me, I am here. I understand the need to write about it. When dealing with my mother’s declining health, my writing became what can only be described as a purge. There were times that it was my only release.
No one can completely understand what you are going through. And that singular knowledge does isolate you. But seriously, do not stop writing and sharing with everyone. There are countless people out there who may be helped by your words. They will feel less alone because they will understand exactly what you are going through. It is their story too, but they might not have the gift for writing that you do.
Hugs to you. Gentle hugs, with particular care for your right side behind the shoulder. I promise not to squeeze too hard. xo
Thinking about you.
Simply stated and beautifully honest. I don’t know you but I know your feelings all to well. They hit at the core of truth in life for you and I thank you for sharing your most inner thoughts. I will hold healing blessings for you and your family.
I met a man who came back from Afghanistan and said he couldn’t be around other people. Their problems were not his problems, he had nothing to say to them because they hadn’t been in a war. And cancer is a war.
Lisa, your mind and body are still in shock. It’s hard to concentrate when there is so much running through your mind. This is your journey and you have every right to feel the way you do and to say what you are thinking and feeling. I understand there are good days and bad days as well as such a huge change in the direction of your world. Your real friends are there for you every step of the way. I am honored I have met you through your blog and my sincere desire to be here for you in any way that I can even if I am just listening to your thoughts as you find your way through this maze. Every day I wake up my desire is to see an end to MBC and I am determined to work towards that goal, but your journey, your story , everything that you are going through…no matter how alone you feel I know that you are not. You have the right to choose where you are most comfortable as you try to get used to this new normal while there is nothing normal about this. I just really want you to know I am here to listen. Thank you for your honesty. Like Nicole I offer gentle hugs and I hope you know they are coming from someone who truly cares. XoXoXo-Susan
It’s so hard to find the words to respond to your posts. You articulate your feelings so well and I can understand completely why you’re feeling what you’re feeling. It’s such a huge battle that you face and you can only do what you can do. I can do nothing more than sit on the sidelines and cheer you on from across the ocean. I hope that helps just a little. My thoughts and prayers are with you. xxx
(And I am so going to editor hell for using the same word three times in one sentence)
I hear you 🙂
You are incredibly brave, my friend. Thank you, as always, for sharing all the parts of this challenge.
Thinking of you. You have helped so many people by your nags and honesty on Twitter. Now we can help you by just saying we care and think about you often. Doing it “right” is not as important as doing what YOU need to do.
I wish more good days than bad for you. And, yes, no one who isn’t going through cancer can understand. You need to do what is necessary for you and your family. But am sure so many of us are grateful for any time you can give us.
I came here because Becky shared a link on her blog and I decided to take the trip over.
I am grateful for that link.
And yes, I can’t relate. I don’t have your diagnosis. I don’t have any diagnosis actually. But it doesn’t matter. Your words resonate. They touch a chord, they spark the embers of my belief that life must be cherished, celebrated, shared for as long as we can, however we can.
And in your words, I find that truth.
Your words have touched my heart. Thank you.
Lisa, You have helped me to understand how you are feeling and have given me a very tiny window into what it must be like to live with your cancer. I’m sorry that you feel alone but I am grateful that you are able to communicate your thoughts and emotions so eloquently. I will always be here to listen! Love you!
Sometimes it breaks my heart to see the weight of what you carry – not just the diagnosis, but your deep-seated need to do it right, to shine an unwavering light on this terrible fucking disease because your light helps others, people you know and people you don’t. What I wish for you more than anything are moments of rest. Weightlessness. I wish I knew how to give you that.
Dear Lisa. Admiration, love, and the same kind of gentle, loving hug Nichole Bernier described, to you from me. You matter so much to me. You matter more each time I read my way deeper into your experience because of your honesty and your gifts. I think of you daily. I think I understand the isolation you describe, because of how well you describe it. As a result of your strengths of generosity and of expression, you have a growing, gathering tribe who is here with you every day. I can’t remove the space between my experience and yours, no matter how much I want to, and I’m not near enough to provide practical assistance, but I am one of the tribe that circles you, cares, does not, and will not, drop away. Your words matter. You matter. Your meaning grows. You are a force.
Thank you. I hope you may find moments of joy and peace in every day. Do whatever you need to do to nurture yourself and your spirit. xo
Lisa, like many, I find words inadequate here. But please know that you are in my daily thoughts.
I “hear” you. Gentle hugs flying in from warm Florida. Loving kindness flying in as well.
Lisa, I am humbled by your willingness to share so honestly. I’m also grateful. Thank you for letting us in. I hope by letting us in, you feel a bit less alone.
I am a stranger to you, but yet I know you…..8 years ago I was where you are now, struggling with a diagnosis of Stage IV breast cancer. All that ran through my head was “I am dying….” I could not function emotionally, and withdrew from everyone except my husband. I now realize that was my coping mechanism and I was going through a sort of grieving process. There can be life, wonderful, exciting, joy-filled life after diagnosis. And I feel better now than I did at diagnosis. There have been some deep, deep valleys. But those deep valleys make the mountains so much higher! I am wishing for you time to grieve, and acknowledgement that grieving is normal. Praying you will soon be where I am now…..
Katherine Contreras
Lisa – You are never alone. You are in the thoughts, hearts, and souls of so very many for this special way you have let us into your heart and soul. Your words are a gift that will be treasured forever. May you find comfort and peace in each day.
Lisa,
Thank you for sharing. You describe so eloquently the experience of isolation that happens after trauma and tragedy. Sure, there may be peers who can walk with you and better understand the journey from the inside–but you will always be doing your own walk, carrying your own griefs. Your willingness to shine the light–even when it illuminates the painful, confused, hurt places–is a gifts. I hear you. And I will hold you in my thoughts.
Warmly,
Ann
Lisa – Write on. The truth – and pain in that truth – that you write of is simply devastating. All I can do is bear witness to that truth… Which I will do. You are one brave woman.
I am in such a state of awe, you have said all those things I feel every day of my.life. when you first mentioned your friends falling away, I think that is what has hurt me most on this journey and it began when I was first diagnosed. I was taken completeky by surprise because one friend, a clinical nurse practitioner, was one that I never expected to leave my life – and so abruptly. I depended on her for my emotional support and my physical oversight, and one day I realized she was pulling away. It was a day I never believed would come and it hurt me so badly I will never get over it. If I had only known this beautiful lady, that I had trusted with my deepest darkest secrets and shared my hopes and dreams with when there was a BC time – ‘before cancer’ – was holding my heart in her hands and then one day she just stopped calling, stopping by, and my heart was broken beyond repair as thiis realization hit me — If she left, after all we had been through together – there was nothing in my life left that was a certainty and that frightened me more than words could ever express. I had trusted her with my final wishes, my thoughts regarding my spiritual strengths and weaknesses and I depended on her beautiful heart to carry through with the most difficult decisiions and to.protect me from harm if I became incapacitated. NOW, what do I do nexf? Alone, I felt my body aging quickly – not from the chemo or other treatments, but from sheer grief at this loss. What was to become of me? Who was going to advocate for me if my voice was no longer to be heard? I was, and still am, very frightened as I think about this.
My partner is of little support in any area, he had only been to one doctor’s appointment with me in a period of over five years. He thought he knew it all, needed no education, and is spiritually bankrupt. I cannot talk with him about the most precious thoughts that need to be heard by someone — and now HE is my support system? I am so frightened, words do not come to mind as I contemplate daily on the ‘what ifs’ that are breaking down my serenity because our beliefs are just so different and I dread the day I may not be abld to speak for myself and knowing the fear I will feel when he places a price tag on my survival the way an accountant decides what is fiscally sound in business organization.
Am I frightened and lonely? Yes, and my faith is the only thing that keeps me from falling off a cliff. I question the strength of that faith. But, in the end, some may say, what will it all matter. It matters so deeply that I am going to have to start over with someone, try to trust again, and start writing down my most innermost feelingz and desires – and hope I am not again so terribly disappointed.
There is hope, I felt it once and I must trust that I will feeel it again.
With gratitude for your patience …… Fran
God bless you both and heal you. I am sitting here reading and crying with all thecomments. I truly wish I could give you all a hug. Sending one thru the eithers.
I hear you. And, you will have hope again, that is the nature of this disease. You go into remission and you hope you’ll get years. You have progression and you become desolate. How fast or slow that happens for you, as you noted, remains to be seen. I know women on year ten with bone mets who feel healthy and still work. I know women who died on year two.
When I first heard I had mets, I thought that I would be one to get a long time. I had hope. I was offered a ground-breaking, life-changing liver resection to cut out the cancer. I knew that I would be the one to get a long life. But no, the cancer came back right away and is still invading my liver. I’m on my sixth chemo and nothing will kill it.
It is lonely. 2013 will likely be my last year. I really don’t have hope anymore, but it has been exchanged for acceptance. Now I have to teach my family how to get on without me. You are your own support system, as you cannot expect your partner or anybody to understand what this is like. Expecting understanding is asking too much, they can’t and you don’t want them to.
I hope you don’t get there quickly. I hope that you are one who has a very slow-growing form that is amenable to treatment and you can stay on easier treatments, like hormonals, for years.
Another true and meaningful post born out of agony. Lisa, I wish I had words, proper words, but know I am whispering a deep heartfelt thank you for each post. You are a brave and rare light in the terrible world of cancer ….the horrific world of cancer invading not only our bodies but impacting our kids lives, our friendships, our future, our nightmares, our dreams, our days n nights without rest, our hearts and thoughts. It’s a tumbly mess of horror some days, especially as shocking losses pile up. I’ve read enough of your blog over last few yrs to know that you are an incredible woman/mother of strength, grace, insight and realness. Your met dx still so shocks n saddens me, and yet you continue to be real and share truth in a way rarely voiced or heard….and so I whisper a very heartfelt thank you for doing it so bravely and truthfully with us.
We don’t know each other but I think about you and pray for you and I send you positive energy all the time. The fact that you are so honest inspires me, as does your wise insight on life. xo
This was beautifully written. I think your statement, “It’s difficult to listen to people complain about trivial things, normal things, things I was complaining about two months ago. Now those complaints just annoy me, or make me sad. I want to scream, “I want your problems!” And I do. I want that life back. I want to turn back the clock” can apply to anyone who is in the midst of a crisis. I have felt that way myself at times, like when my mother had a severe and debilitating stroke.
Thank you for continuing to share with us your journey. Your words and your expressions here help give me a bit more insight into what my best friend might be going through as well.
Love, hugs, and hope from Denver.
Lisa —
Beautiful, moving and honest, as always. I think of you every day — and wish that each of those days brings you happiness. Big and gentle hug.
xo
Kathy
Thinking about your and am encouraged by your strength and even by your doubts.
Think of you every day and send you love & strength. xoxo
Your incredible ability to share, and to be so transparent, with your reactions and emotions is remarkable. I learn from you, each time I read your words. Always have.
Love you. xoxo
You have my number. You can PM me. You can email me. I will come sit with you. I will take your kids to the park, and you along with us if you wish. I will bring you lunch. I will take you to dinner. I will mow the lawn for Clarke so he can spend time with you. If I will benefit you more here in Lancaster… I will drive your parents to see you. I will check on your parents so you don’t have to, together and separately. I will take your parents to dinner so they have an outlet. I am one contact away. I always have been. After all, you’ve done so much for so many others.
I don’t ever want to be that friend who fades out on you. I am all for honesty and will remain by your side for any time you need to express what you are feeling to someone who cares so much. This may be a time, to take things day by day, hour by hour or minute by minute, whatever best agrees with how YOU are. So you may not be ready to join a group, you don’t have to join one if you don’t want to. We can make a group for you that you can hand pick and meet up on line to talk about issues you want to talk about. I have had to start living day to day lately to maintain my composure, energy and will. With a little bit of looking ahead, of course. Mostly,focusing on what I need to do, what I need to have, just for today. I has helped a great deal as far as removing most of the stress I put myself under, worrying about everything. Worrying about yesterday, today, tomorrow, next week and next year. I know how to multi task very well, so I can say I live day to day with my pulse and my eye on tomorrow and beyond, just enough to keep me going.. Just the right amount to not overwhelm me and make me want to give up and stay in bed. I too, do as much as I can every day, because I can.
I want to be your close friend. I want to be here to listen. I want to talk about recipes, parenting and all the things that you do so well. I just simply want a place in your life to be available for anything you choose to share with me. As you have done here. You have done a super human job handling this, and continue to do so. From the outside, looking in, you seem to manage your daily outreach to those with issues, writing, caring for your 3 children, husband, household, appointment…..on and on. I get a little dizzy thinking about.
I’m here Lisa. I want to make sure you know that. Another inspiring post for which I thank you.
Lisa–This is a beautiful piece of writing that has helped me to know how to be more supportive to a friend who has non-Hodgkin’s Lymphoma. Thank you for posting it.
Lisa, you rock!! This is such a powerful commentary on how all-around alienating having cancer (or any major illness) can be. You are amazing, and have such a gift for sharing your thoughts in an honest and understandable way. I relate to so many of the things you have said, but especially love this line: “There is a fine line between giving space and putting distance.” Indeed there is. {{{hugs}}}
Don’t know you, Lisa, but know many who I don’t relate to like I do to you. I have experienced some of the same thoughts you have had, and shared. While my ‘Big C’ does not appear to be so serious — I had surgery foregoing radiation, chemotherapy, and other treatments. But, having been through the cancer diagnosis and surgery, the thoughts you have are always on the mind. I wish I could offer some help to you — but may my wish to you for a good life forward — be a little sustaining.
Lisa..I don’t have cancer, but I understand alone all too well. Part is self-imposed, the other is that I really don’t know if being with me is out of sincerity or pity. I see the looks on the faces. Luckily I live quite a ways from everyone, so when the pulling start…the distance helps the physical aspect, but the mental/emotional psyches have been all but destroyed. I do have 3 that I can depend on, that if I reach, they are still there. I chose to have an amputation, not knowing the price of mental anguish and acceptance, is what I have traded for the pain. I happened to have stumbled onto your blog this morning, sitting at the end of my bed, continually looking at this prosthetic. I know my thoughts now are trivial in comparison. I just wanted to say God Bless you….you are helping far too many people than you will ever know. You are one of God’s chosen few….
As someone said earlier, you write so beautifully about such hard things. Your thoughts about support groups are similar to the ones my mother expressed when she had the same disease. I think this is a wonderful post to start your new column on the Huff Po.
Sending best wishes.
I’m not sure if this will be helpful to you but there is an organization called Imerman Angels that pairs cancer fighters and survivors up – people going through similar cancers in similar situations in life. (Imerman Angels carefully matches and individually pairs a person touched by cancer (a cancer fighter or survivor) with someone who has fought and survived the same type of cancer (a Mentor Angel).)
I’m keeping you and your family in my thoughts and prayers! Sending gentle hugs.