The Roadmap to Survivorship - Anyone have one?

[Paris]

This has been bugging me lately and I'm hoping you wonderful ladies will be able to help! I am part of a support group and am trying to help those finishing treatment "find their way" in their post cancer world. I have talked to so many who are having difficulties functioning. It's unfortunate that the medical community at least in my experience doesn't focus enough energy on this very important part of our lives. Diagnosis and treatment, in many cases, lasts for a finite time. Survivorship lasts until we die, hopefully not from cancer. I just don't think enough is said about it. I see some articles about survivorship but it's not enough in my opinion. I'm pretty tough but cancer broke me both mentally and physically after I was done with chemo. It took several months to get the mental part back. The physical I'm still working on. If any of you have read Lance Armstrong's book you know what a hard time he had adjusting to his "new normal" and he is the poster child for mental and physical toughness. What does this mean for the rest of us?

So I would like to know, what do you or did you do to get yourself back on track? What do you think needs to be done in the medical community to help get others back on track after surgery/treatment ends? What would you ask you doctors for help with? Granted we know there are therapists and healing modalities out there but for the person who just can't cope how do we get them help?

Help me draw up the roadmap so that I/we can help others!

Jamie

[Joe]

Jamie,

I cannot give you any details yet, but our group is working on a life after treatment program.

Regards
Joe

[Yorkiegirl]

Oh Joe this sounds WONDERFUL. I know for myself I will be going along just fine and then wham there I am back at that place. I know I should be over this as I am coming upon my 3 year mark, but there are times that it just hit's me.

[Alice]

I also seem to be doing well and then it hits again. The worry, anxiety, fear of recurrance. I will be watching for your program Joe. I think it is an excellent idea. I also help at a cancer resource center and will look for anything that may be of help.
Alice

[Paris]

That is great Joe! Can't wait to hear the details.

The old feelings are never far from the surface. My brother in law has stage 4 lung cancer and I was speaking to my sister today about being ready for when he finishes treatment because it's going to be hard. Then later this morning I found out my ps's wife was just diagnosed with cervical cancer and they are reeling as she had no idea she had a tumor. So as more and more people are diagnosed with cancer there are going to be more people that will need help assimilating back to their old but forever changed life.

Never say die as Arlen Spector writes. I'll be sure to get this book!

Jamie

[goops]

When I finished Chemo I went into a little panic mode (even though I am now going through radiation and herceptin).

I decided that I need to change my focus from thinking of myself as ill - to thinking of myself as well. I decided to do what healthy people do - I joined a gym, and I am enjoying it.

[Becky]

I believe the process is about the same for everyone but each person goes through each gate at a different speed. I am beginning to think that getting a year of Herceptin helps the process. I am saying that because I was on the cusp of adjuvant Herceptin. I finished chemo and then rads. 2 months after rads (4 after chemo) I returned to get Herceptin which was then okayed (if you were 6 months from your last chemo (this was changed a month later to 12 months from your last chemo). Anyway - I went through that drought from the cancer center and then was pulled back in. By the time I was finished with Herceptin, I passed my 2 year mark (got 5 extra treatments to get me there as my onc thought - "why not?" as it wasn't as if I was getting a full second year. He figured it would protect me through the most vulnerable period). I was still nervous about being done but also grateful to be done because no matter how good you feel during treatment, you are still viewed as being ill.

The whirlwind of feelings when treatment is over can be overwhelming. One way to get through this is to plan for the future. First small steps (like joining a gym as Goops said) or deciding to walk or take up some sort of other activity - a pottery or yoga class or even a college or graduate course. Then you really need to plan out longer - a vacation for next year that has to be alittle more planned out than usual - Calgary Rodeo, 2010 Winter Olympics etc.

Before you know it, time has gone by. For example, when I found my lump we were just taking our oldest daughter to college (freshman) in a week or so and in May, she is graduating already and daugher #2 is a freshman in college. My youngest who was just entering 8th grade will graduate high school next year and no matter what could happen cancer wise, I will be there to see it. This is something I was not sure would happen.

It takes time to look forward and not worry that the arm you pulled doing a new exercise dvd is just the ache of an arm you pulled during a new exercise dvd (when you know darn well you pulled it doing the darn new exercise dvd) and that it is not bone mets! Time makes you more rationale and forgiving of yourself (much like growing up and becoming an adult). You stop wondering if you did something or if you didn't do something or what you could've, should've, would've done differently. Did you do a self exam the month before - you should've and the lump would've been smaller. You stop that stuff as time goes on. You do become more diligent. You do your exam. You go to your appointments on time but you might still postpone your dental cleanings as usual (oh well!!??). Time is what heals and gets you the mileage to hit the significant sights to see on the survivor highway. Plan your trip well and enjoy it.

[Barbara2]

The following website offers a lot of thoughts and messages of hope and healing. I have downloaded many of their affirmations and kept them in a file. Below is their website and an example of one of their affirmations which might offer guidance on "The Roadmap To Survivorship."

http://www.thecancercrusade.com/Canc..._survivors.asp

From this address you can receive their weekly affirmations:
http://www.thecancercrusade.com/Canc...blications.asp

Learning To Live In The Moment
Regardless of our diagnoses and prognoses, learning to live in the moment can remarkably alter the way we spend our remaining days on this earth, granting us joy and peace in the very time and place we believed them to be impossible.

The first step is to consciously let go of the past. Stop beating yourself up over what may or may not have caused your disease. We need to remember that in many cases, there are no answers to the riddles of disease. Many people who have taken incredibly good care of themselves all of their lives get cancer and other serious illnesses, too. We need to let go of the obsession many of us have with finding out "what went wrong." And if we imagine that it is something we did or didn't do,
we need to forgive ourselves.

Secondly, we must refuse to be overwhelmed by worries about tomorrow. This is perhaps hardest of all when facing a life crisis, but it can be done and you can do it, but it does take practice. Do you have surgery tomorrow? Chemotherapy treatment? Radiation? Other painful or frightening procedure or test? Focusing on it today will not put it off or make it go away, but it will rob you of the potential joys in today. Find them! I find joy in watching a favorite old movie for the hundredth time, going through family photos, indulging in cheesecake and painting with watercolors, but you are the only one who knows what brings you joy. Give yourself the gift of joy in the moments of today, and let tomorrow
take care of tomorrow.

We can take a lesson from those recovering from the illness of addiction, those who remind themselves and one another that we can only live our lives "one day at a time." There are even days when we can only endure an hour at a time, even one minute at a time, but the minutes and the hours and the days endured are victories in and of themselves. They are battles won, and they are to be celebrated joyously. These are the moments that add up to
the sums of our lives.

Resolve to celebrate every morning that you open your eyes, every contact with a loved one, every moment that you draw breath, the breath itself, every seemingly inconsequential thing or occurrence which, if examined closely, reveals a miracle.

When you temporarily lose your resolve, don't give up. Remind yourself that this is a new approach that requires practice, and gently return your attention to the present moment. If you can focus on this task and make it a conscious practice each and every day, its promise is that the joyful moments will greatly outweigh the sorrowful ones when
the sums of our lives are tallied.

Dear God, I've been awfully hard on myself lately, blaming myself for mistakes real and imagined, and convincing myself that they are the reasons I have cancer. I often obsess over what tomorrow will bring and how many tomorrows I have left. Please help me get past this harmful thinking. Help me in my resolve to build healthy new habits, to forgive myself for my old unhealthy ones, and to live joyously in the moment every moment for all the rest of my days. Amen

[Mary Jo]

Hello everyone,

I just wanted to add to what Barbara's post said about "living in the moment." I think that is what has helped me also.

Each day when I rise, I try to remember to thank the Lord for this day. I thank Him for my good health but more importantly I ask Him to lead me this day to what He wants me to do..........to spread His love and to live for Him. That helps me to stay focused on the "now." On "today."

I have come to the conclusion that I cannot live my life worrying about my tomorrow's - worrying about a cancer recurrence - worrying about how long I will live. I have always believed - but believe to a stronger degree today - that my life has been put here by God to fulfill a purpose. When that purpose is fullfilled He will be calling me Home to Himself.

That is how I "survive." One day is more than enough for me and when those doubts about cancer recurrence come I immediately try to put them out of mind as I concentrate on this phrase "God has put you here now - live for this moment."

Peace to each of us.........................

Mary Jo

[Paris]

Thank you Becky, Barbara and Mary Jo for your insightfulness. I will print out some of the affirmations and forward to some of the ladies in my support group who are having a rough time. I often wonder what is it that makes some people so strong in the face of adversity while others are overcome by it. I marvel at women such as Patti LaBelle, who when diagnosed with diabetes, refused to let it control her life. And the young handicapped man I saw on TV who was afflicted by a form of muscular dystrophy who had such a positive spirit. Unfortunately I also see alot of people who are angry at being diagnosed with cancer or other serious disease and the anger overtakes them.

I have to say the women and men on this site are much more positive than some of the people on other breast cancer sites.

Here's to today and many more today's!

Jamie

[KRISS]

my insurance company just gave me a book on this topic. I have not read very far but so far it has great insight and information. It's called LIVING BEYOND BREAST CANCER, A SURVIVOR'S GUID FOR WHEN TREATMENT ENDS AND THE REST OF YOUR LIFE BEGINS. by marisa c wiess, MD. The first few chapters are dealing with treatment etc. but then it goes into chapters like: copying with lingering side effects, care beyond treatment, and caring for your new self. It may not have all the answers but it does touch on some much of what we are thinking.

[goops]

I like this talk about living in the moment - The course of miracles teaches that principal but I didn't really learn how to do it until I got cancer.

[Ruth]

Jamie ~
I don't know if there is a standard roadmap to follow since so many paths differ. But I think that we all can help each other by websites such as this, talking to other survivors and being involved in all the decisions that our lives hold. I went to extremes by radically changing my life because cancer made me see how miserable I was and didn't know it. Cancer actually helped me find the greatest joy I have ever known. I used to volunteer for everyone else's passion, on numerous boards, committee's, homeschooled and owned my own business....basically wore myself out. After diagnosis I stepped back and thought about what is good for me? What do I want to do versus what do I think everyone wants me to do? And finally say "No, I can't help right now. I'm on a path to help myself." Frankly my diagnosis and recurrance risk was really lousy so I decided that I was going to make the most of whatever was coming my way.

I helped start a local BC support group for younger ladies (typically 40ish & under) since there are some things that differ in relationships, feelings and dealing with raising small children while having such a devasting thing happen to you. We talked about kids, spouses, working and how freaked out our close friends were about us getting sick so young. It takes TIME to grow from a cancer diagnosis. Some people think that after treatment is over that everything is OK now. But these are people that haven't been diagnosed with cancer! Our body heals into a new body (no, it will never be the same), our souls regroup and life has a new normal for us but it never quite goes back to "the way it was" because that time doesn't exist anymore. I know so many of us want to just go back to the way it was before...especially our bodies. I was so frustrated skiing a few weeks ago because I can't pull myself along with my arms - cross country. My radiated right side is so much weaker than my left that I have to accept that I can't do it like I used to. Having a child changes your body but you love the changes since it was a precious gift to you. Having cancer changes your body but you have to force yourself to love it because this was a change that you didn't want!

We may always ask ourselves why do we feel this way? Why does every ache and pain scare the crap out of us? But I think those questions are part of us now and we have to accept it. I think the greatest lesson to learn is that time helps, time heals, but we will never be who we were before cancer. I believe trying too hard to be the same person physically and mentally is like a kitten trying to catch its tail by going round and round and making itself dizzy. Enjoy who you are, do what makes you happy and know that you are not alone. None of us are alone in this.

We are a special group of people that truly appreciates life. I absolutely love myself now and my life.

I love this kind of topic. I probably am starting to ramble but I have so much to say on this! However, I have a sweet little girl, it is her bedtime and as much as I'd like my life to be all about me (LOL) it is all about my babies.

Hugs ~ Ruth

[Joan M]

What can I say but ...