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Remission is not so easy

Pandorasbell
Posts: 1
Joined: Sep 2007

I'm a cancer survivor and have been in remission for almost two years now, I know I should count my blessings but I live under a cloud of dread weekly, if not daily. I'm finding it difficult to cope with a lot of things, particularly medical procedures and the chance that it could come back. Can anyone else relate?

TereB
Posts: 288
Joined: May 2003

Yes I can relate. There is no cure for my kind of cancer but it is slow growing. I have mets all along spine and many bones. I have several follow-ups during the year to check for new tumors or if the old ones are growing.

Tomorrow I go for the usual follow-up tests and I am already a little nervous about the results. I have accepted this as normal and it is the only time I allow myself to worry. I used to panic and needed a sedative when I had an MRI. It's been years since I needed a sedative and these days I fall asleep five minutes after I'm in the machine. When the tests ends, I feel relaxed and well rested after the nap.

I used to worry about everything but, even though it took me a while, I learned to relax and take one day at a time. If I worried about my tumors all the time I wouldn't be able to enjoy life. I just worry when I go for tests and for a week after that when I will see my oncologist and get the results. After I see my oncologist, if I don't need treatment, I put the tumors in a closet in my mind and do not think about that until it is time for follow-up tests.

I found that if I am relaxed and not under stress my tumors go dormant. None of the doctors knows why it happens and I think my mind has a lot to do with it.

Do not get ahead of yourself and worry about things that have not happened yet or that may never happen. Give yourself permission to relax so you can enjoy all the wonderful things that life has to offer, learn what is important to you and what is not, what your priorities are and not pay so much attention to things that have not happened, that you cannot change or do anything about it.

Perhaps because of the stress you are in, it is difficult to cope with many things. Try not to worry about the little stuff.

Maybe you would like to consider therapy. It helped me.

All the best,
TereB

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

That is great advice TereB. I have been in remission for a while now, almost 3 years and I can relate to your fears too. I have my 3 year checkup coming up here in November and although my logical mind tells me that everything will be OK, I am still paranoid. I try not to worry, like Tere said, we have no control anyway, except that thinking positive and staying as stress free as possible probably does have a positive effect on our helalth. Try to keep yourself occupied with exercise, work and other things in your life. It does get better with time. I know that sounds cliche, but it took me over 2 years before I started to really believe that I might actually be OK.
Best wishes,
Susan

Folks24
Posts: 97
Joined: Feb 2007

I am not a cancer survivor but have been diagnosed with lymphoma. I have a very early stage as #s are not high enough to treat and no intense symptoms yet - Thankfully!

But I do live with the anxiety. I was on a roller coaster w/drs for 2 yrs until they diagnosed me finally. I get a round of tests every year for monitoring. I have had a biopsy, numerous blood tests, MRI, CAT, needle aspiration, etc. I used to stress a lot over blood tests & needles, I've had soooo many tests now I don't stress about it anymore. I was also a caretaker to my folks before they passed so anxiety there too.

My advice is: Just don't let it take over your life. It is a part of your life, not your whole life. Deal with it when you HAVE to deal with it and don't when you don't. Try not to stress out as that does affect you. Good Luck!

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I am a 20 year survivor of NHL and early after my first courses of chemo were over I met a woman in a support group who had the same cancer as I did and the same treatments. I noticed though that there was a difference - she lived every minute of every day frightened that her cancer would return and although of course I thought about it for some reason I put it behind me and had the attitude that it was gone. From the beginning I disliked the term 'remission' since it implied that sooner or later it would return and I knew that some cancers can in fact be cured today, so why not me. That's the way I continued throughout my years after cancer diagnosis and here I am 18 years later and the docs now are admitting it is a cure. Now I ask myself what my life would have been like if daily I had stressed and worried my life away thinking it would come back and it clearly hasn't and won't. I am not saying that I have not thought of it returning, now and again, but I think the bigger tragedy would be living my whole life with 'fear' becoming the disease that cripples me instead. I dislike the word remission, today with all the cures and treatments available it can be cured, I am living proof, as are countless others, lets try and live each day with the joy it is gone, there is no guarantee of anything but let's look at the glass half full than half empty. I lived long enough to see my young family that I had at diagnosis grow and become self sufficient today, how sad if I had plagued them all those growing years with a negative and depressed Mother. That's just my 2 cents.

manna1qd's picture
manna1qd
Posts: 48
Joined: Dec 2007

No it isn't. I used to freak out when my oncologists office called to reschele my appointment after my labs were drawn. I figured it must be bad. I let the what ifs dominate my thoughts. I started to realize I had to have good reports to move further along the road of survivorship. So, I expected a good report knowing this was very possible. I did take medication to get the edge off though and took it for quite awhile after I was physically recovered. It helped.

nsquirrely
Posts: 50
Joined: May 2007

I totally relate to the fears that come with the word remission or in my case NED. I don't want to make anyone question their faith about not having cancer to deal with any more but----
Are you kidding me????? They might as well hit me in the head and say you are cured. What does the words No Evidence of Disease really mean to them or us for that matter. In my mind I'm thinking so you don't see it. Does that mean it isn't there? I've been NED for a year and should be elated by that news. Unfortunately, I keep thinking how much longer before it is no longer something they don't see but very evident. My one year appt with my oncologist has been cancelled twice. Once by me and once by the office. Are they going to look deeper when I do get to go or are they just going to look on the surface as they have in the pass then say you are fine. Will it continue to be a waiting game for the rest of my life? Who knows the answer to that question?

ohilly
Posts: 446
Joined: Jan 2008

I had stage 1 breast cancer and am also BRCA 1 (I have the breast cancer gene). I had two mastectomies: one on the cancerous breast and another, preventive one on the other side. I just had the second one on Sept. 18. My doctors tell me there's a 90% per cent chance that the cancer will not recur, and until now that all my treatment is over, I have done a pretty good job of not thinking about the other 10%, but lately I've been consumed with thoughts that my cancer will come back and spread to distant organs and kill me. I should also add that my mother just died of lung cancer a few weeks ago, so her death is also on my mind although her situation and cancer were totally different than mine. If anyone has any secrets for coping with the fear of recurrence (and ultimately death) please let me know what they are. I'm at home now recovering from my surgery, and I think when I'm back at work and get busy maybe the thoughts will become less. At least I hope so. Ohilly

Eil4186's picture
Eil4186
Posts: 967
Joined: Dec 2007

I know what you mean I feel the same way a lot of the time. I am 2 years out from diagnosis of breast cancer and have a good prognosis but still am fearful of a recurrence. Cancer is always somewhere in the back of my mind. And I do find myself laying awake at night thinking/worrying about it. But we must ry and remember that life is short and try and enjoy each day because life is very short no matter how healthy we are. Mind over matter----now if only I could control my mind!!!

terato's picture
terato
Posts: 384
Joined: Apr 2002

Pandora,

I have been "clear" for 26 years and still imagine that every migraine is a brain tumor and every stomach ache is liver or some other cancer. The fact that I have an anomaly called "floating AFP" (a tumor marker that frequently tests above the normal range) adds to my anxiety. I have been repeatedly CAT scanned, MRI'd, and X-rayed, to find no physical presence of tumor. My oncologist even suggested that I go on to pursue a doctorate, just to get my mind focused on something other than my health, but working on my second masters only drained my bank account and brought on insomnia and migraine. Sometimes, I think chronic anxiety keeps me alive!

You bet I can relate!

Love and Courage!

Rick

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

Pandorasbell, I know exactly what you are talking about. I have been in remission for 17+ months from ovarian cancer, the supposedly "silent killer." I had a pap test done during my 3-month checkup (I have no cervix--that was removed) and yesterday found out they found some abnormal cells. Not cancer cells but abnormal ones. They will retest me in 3 months during my next checkup. That's in January! So what on earth am I supposed to do until then? Now I'm starting to imagine all sorts of things and also have looking things up on the internet like crazy. I was fine before though I admit the possibility of cancer returning has never totally left my mind but I try to have a normal life.

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Dreamdove. I am so sorry that life keeps throwing you curves. I have been in your position 3 times since my NHL and spent months trying to get answers. Each time things turned out ok but the many tests required were not a welcome addition to my life. I don't think there is anything normal about a life after cancer. Just fill out a medical form or ask about life insurance. It seems every Dr appointment is a cause for anxiety as the next bomb might drop. I have been reading your letters about your emotional struggles with dating and starting life over. I think at times we all feel we have less to offer anyone after cancer. But the fact remains that we are human and there are those that will love us for who we are. And I was really hoping you would find that person that would love you for who you are despite any medical problems. I am sure that person is out there as you are quite special. So don't give up and try to make the best out of life despite the doctors and test results. I wish you had that special person to hold you and tell you everything was going to be ok. I know how much that can mean when life is beating you down. So you will be in my prayers. Slickwilly

Dreamdove's picture
Dreamdove
Posts: 175
Joined: Sep 2008

Slickwilly, thanks for your kind words. I wish I did have a "special person" in my life but maybe I am a stronger person because I didn't have that. In Jan. 2007 when I found out I had stage 3 ovarian cancer my daughter was only 12. While in the hospital for a week I had to make calls to people to find someone who would take in my daughter; take her to school and give her meals. I found 3 different families and I will always be grateful to them for doing that. Since there is no temporary dissability, I had go work after 6 weeks. I work in a grocery store as a checker so it was a physically demanding job, especially when you are going thru chemo. I worked about 25 hours a week so it wasn't as bad as a 40-hour job. I continued my walking also. I like this website because people on here understand each other. You can't always find that in the outside world. Alot of people are afraid of cancer so they are afraid of you. I recently went to my aunt's funeral and I noticed that I had to approach most of my cousins, which I didn't need to do in the past. Most seemed uncomfortable and didn't know what to say to me. Only one, my cousin Bob, approached me. I think it's because he was a caregiver to both his parents before they died, a year between each other around the holidays. I don't want to be treated as a member of the "walking dead" but I take it in perspective and I still have my sense of humor. Which you have to have to survive.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I have a problem with the word remission because it kind of suggests that it's inevitable that it will come back and that isn't right these days. I am a 20 year survivor of NHL and although my experience is a bit different in why I never think of it coming back - long story, if I had worried about it coming back then cancer wouldn't have ruined my life or ended it - fear would have. Fear can cripple us and maybe even do more harm that we know. Of course we think about cancer coming back once in awhile but if it is a 'cloud of dread weekly, if not daily' it might be time to talk to a counsellor, a counsellor who deals with cancer specifically. I too have a fear of medical procedures but that's pretty common after having so many medical interventions but if you stop going to docs because of them, again you need to talk to someone about that. I see a counsellor from time to time to make sure I am still firing on all pistons after all my medical intervention then I feel better and I move on as best I can. You aren't alone in this at all. We all go through grief at loss of our health in one way or another but if you get stuck in anyone one of the grief stages such as fear then help would be a good move. All the best in 2009, enjoy your survivorship - be proud of yourself for getting through it and look around you at those close to you and try to go on for you and for them as well. All the best in 2009, Blueroses

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