Dear Dianne,
I didn't read your reply to me until I'd finished writing the previous post about exercise.
I can tell you are on overload. Know how that feels, been there. I was in a carcrash in 1994, had a whiplash trauma that caused severe balance problems, memory problems, pain in neck and back, inability to concentrate and when I got too tired, I'd have headaches and nausea. During the recovery I accidentally got pregnant, gave birth to a premature little boy, who cried incessantly for 6 hours a day, 7 days a week, until we discovered he had food allergies. Subsequently found out I had severe food allergies and intolerance myself. In the mean time, my husband, whom I had met 2 weeks before the accident, lost his business, because his business partner became addicted to gambling. I lost my job, my house, many friends (I know what you are talking about) and was very, very depressed.
In time, though, I adapted to the new normal. We had moved to my husband's house in a different city, where I knew no-one. I just sat at home and was depressed. Did you realize that moving house is very traumatic? It's the second most traumatic thing in life, after losing a loved one.
And just when I was beginning to make some new friends (don't know where I found the energy to even talk to people), when my child went to school so I had more time to myself, when my husband was building up his business again, so we were no longer poor as dirt, and when the insurance company finally paid out after the accident, BANG! A cancer diagnosis.
So yes, I know how you feel. I know that when one goes through surgery and rads, and chemo (I avoided that) etc one is fighting the disease, one's mind is occupied. And then, when we have time to look around and take stock, it hits us: I HAVE CANCER and it can come back anytime!
It is so scary and we feel we have no control over this beast that blindsided us. And on top of that, nobody really understands what we are going through.
So even if we have good friends, those who stick around and aren't scared to address the issue, we feel so alone, so isolated. Cancer isn't just a physical disease, it also affects our minds. Many of us feel we no longer are able to trust our bodies. And no-one gets that. They want us to feel happy because we survived, but we aren't happy. We are scared or numb or upset or depressed, or all of these mixed together.
Yes, Dianne, I get it. I can understand what you are going through, because I've been there. All I can say is: It will get better. One day you will realise that you are smiling. Or humming a tune. Or laughing out loud, watching a funny movie.
In the mean time, it seems like a good idea to discuss your feelings with your doctor. He may be able to help you or he may refer you to a good therapist. These are major issues and you should accept all the help you can get. Even if it isn't specialized breastcancer counselling. Things can't get much worse than this, and you deserve to get the best care you can get.
Perhaps it could help you to try some of the things I did, when I felt very isolated in my new home. I started taking a course, so I would meet some new people. I did some voluntary work for the parents committee at the daycare centre. Through these I met some people who are now my best friends. One of them actually came with me when I went to my post-op appointment after my lumpectomy. She was with me when I heard I had cancer and I wouldn't know what I would have done without her.
About the tumor markers: Mine weren't elevated when I still had the cancer in my breast. They are notoriously unreliable and we don't check them here in the Netherlands unless there's confirmed metastatic disease. Then they are used to monitor effectiveness of therapies. But even in that context they can fluctuate and even a minor infection can cause them to rise. There is no 100% foolproof method for determining that you are NED, but when there are no symptoms, there's no reason for worry.
Oh, and don't buy that crap about positive thinking or diet or anything else that would keep you cancer free. There are no guarantees. I eat the healthiest diet in the world because of my allergies, and developed cancer anyway. I'm an optimist and stayed positive even though bad things were happening to me: I got cancer anyway. The only known thing that will improve your state of mind, your health and your sense of well-being is excercise. So perhaps you can find someone to accompany you on a daily walk? Going outside, getting fresh air, even when it's cold, is a good way of getting the endorphins floating through your body.
I know it's hard. So don't be hard on yourself. Just take it one step at the time.
Oh, and you do have a breastcancer group: Us.
I have another suggestion for you, that might help. There's a breastcancer list at
www.bclist.org, where people find support and hope and friendship. They have an annual gathering coming up in october in Tampa, Florida. They are an amazing bunch and if you can manage to go there, you will be welcomed like an old friend. They are such wonderful people and I wouldn't have gotten through this whole breastcancer experience as well as I have without them. Check it out! And if you write, you will find me there, and I will introduce you to them. They are my long-distance friends. I've met some of them, and they are great.
So, dear Dianne, you are not alone in this. We will help you carry the burden and you will get better and stronger with every step you take. It just takes time. This too shall pass.
Love and hugs
Jacqueline