In Remission-Now What Do I Do?

Lrbsvcs

Is anybody else out there struggling with this? I feel like I am finally starting to get stabilized with my health and now that I'm feeling better, I feel like I've just been left behind. When I got diagnosed with Hodgkin's Lymphoma in 2004, I had just moved from Atlanta, GA to Washington, DC and had just started a new job. Well 3 weeks into the job is when I got diagnosed with the cancer (all the details are in my profile). Well, 8 months of being in the hospital in Bethesda, MD,I decided maybe I needed to move back to Atlanta and so I did. But now I just feel like where do I begin picking up the pieces? I feel much better than I had but still my stamina and my energy are not what they used to be. I guess this is my "new normal". I am ready to get back to work and am looking for PT work, but I am not having any responses to my resume postings. I am starting to wonder if the gaps on my resume might be making potential employers a little leary. I am getting really frustrated with how things are in my life right now. Yes, I am grateful for being alive and functioning (for the most part) but I want my old (healthy) self back. Can anyone out there relate? If so, can you offer some of your words of wisdom, insight, advice, etc.

cupac

Hi

It does take a while to get back to normal life. I am 4 year HD survivor (33 year old). I eased back into life very slowly. My advice would be to do the same. A part time job is definitely a good idea - rather than throwing yourself into a full time job, you need to ease in slowly. I does take a couple of years for your energy to get back to normal. I started the gym when I finished treatment and am still a keen gym junkie 4 years on. I started off really slowly initially but am now as fit as someone half my age because I kept at it. Do not get too frustrated because you have been through alot and it is still quite fresh for you. Take care of yourself. Take advantage of the free time. I changed my life around completely and a couple of years ago undertook a Graduate Diploma in Education to become a teacher - that is something I have wanted to do for a long time. I graduated last year and am teaching this year and loving it. Take this time and the lessons from your experience to enrich your life. You beat cancer, you can do anything now!!!

Best of luck with everything and keep me posted with how you go. If you need someone to talk to you can always e-mail me personally.

Cheers

Joanne

Racht

Hi there,
I honestly know exactly what you're talking about. I only finished treatments last fall. and I have said almost those same exact words to the people in MY life ("new normal" - I did use that, "picking up the pieces"). I found some good articles on the web about this very thing..how cancer survivors go through times of uncertainty, post traumatic stress, feeling like you got lost in the shuffle somewhere. There is a FAQ page on what a cancer survivor should and shouldn't say when applying for jobs again. Yes, it IS normal. All you can do is take one minute at a time, set small goals for yourself, give yourself a lot of patience, find support. I don't know if you have many supportive friends or a close knit family but if not- you can find a lot on line. I have 2 that I talk to pretty regularly either thru YIM or email. You're welcome to add yourself to my short list of online cancer survivor friends. My church has been a great support to me- all during this whole thing. Most of all having a living relationship with God has carried me and continues to carry me through. The most important thing I think for us, is not to expect too much of ourselves at once or too soon. We've just endured trauma, pain, a life altering disease, a battle we didn't sign up to fight took everything we had and then some to muster the courage to fight. We can't run a marathon right away. Figuratively or literally. Try to give yourself time. You've got the gift of life. We both were spared. In those moments that perhaps we weren't even sure we'd make it thru- something like job searches weren't even in our minds as being an issue right? we just didn't know if we'd live to see another day. In a way- that gave us strength to push forward. So now just take it easy and slow. Taking too much on too soon will compromise the health that you have had restored. Your head is probably still reeling over all that's happened. I know mine is. I hope this has been some help and encouragement to you. I will contact you again with the sites where I found those articles I mentioned.
Take care, go easy. You're in my prayers.
Rachel

Racht

Hi again. Here are 2 links I thought might be helpful: http://www.lymphomation.org/cancer-journal.pdf (this is a journal/guide you can print out and work through your emotions with it) and this one: www.mayoclinic.com/health/cancer-survivor/CA00072
its specifically about relating to others but there are links to other topics on the article.
Take care.

darkhorse58

Two things can make you feel different from other people. First, you have gone through experiences that are beyond what many people imagine. People live in an illusion of perpetual youth and health. You have experienced severe illness and overcome it.

Second, the neurological effects of chemo can change the way we think. Chemobrain hits short-term memory and verbal areas like Broca's area, leading to partial aphasia, but at the same time other areas of perception may grow more acute. Maybe you've become a human lie detector, like some people do. When you suddenly sniff out B.S. like a blood hound, it can change radically the way you see others.

In the end, with the help of the higher power, all things can work together for good. You, like me and I do have chemobrain, may not be able to do some things as well. However, you may be better at music, at detecting falseness as many people with some aphasia do. I recommend reading "The Man Who Mistook His Wife For A Hat" to learn about some of the amazing rewirings our minds can achieve to overcome damage.

Surprisingly, I found that I was much, much better at managing my finances. A lot of noise and distractions just melt away. At the same time, since noise is what a lot of people are living their lives for, it can be hard to relate to those types. You'll find your niche.

ChiTownGal

darkhorse58 said:

Two things can make you feel different from other people. First, you have gone through experiences that are beyond what many people imagine. People live in an illusion of perpetual youth and health. You have experienced severe illness and overcome it.

Second, the neurological effects of chemo can change the way we think. Chemobrain hits short-term memory and verbal areas like Broca's area, leading to partial aphasia, but at the same time other areas of perception may grow more acute. Maybe you've become a human lie detector, like some people do. When you suddenly sniff out B.S. like a blood hound, it can change radically the way you see others.

In the end, with the help of the higher power, all things can work together for good. You, like me and I do have chemobrain, may not be able to do some things as well. However, you may be better at music, at detecting falseness as many people with some aphasia do. I recommend reading "The Man Who Mistook His Wife For A Hat" to learn about some of the amazing rewirings our minds can achieve to overcome damage.

Surprisingly, I found that I was much, much better at managing my finances. A lot of noise and distractions just melt away. At the same time, since noise is what a lot of people are living their lives for, it can be hard to relate to those types. You'll find your niche.

Chemobrain
Interesting. I just completed treatment (6 cycle ABVD) a week ago and I am finding that I am less tolerant of other people's BS and am being more inclined to back away from people who in the past would aggravate or even insult me, but because they were family, I'd stay low key to keep the peace. Rather than start "trouble," I've just been avoliding encounters with these people. Don't know if it's because in one way I feel I have fought cancer, so why do I have to put up with whoever's BS? Or if it's a physical change in my brain. My husband says I am just being mean and nasty, but at the the same time I am very grateful for all the good things in my life. It's just the things I used to let roll off my back really get to me now. If you have any insights, please share. Also, if there is additional reading material or links, let me know so I can read up on my own. Bottom line -- is this normal?

slickwilly

ChiTownGal said:

Chemobrain
Interesting. I just completed treatment (6 cycle ABVD) a week ago and I am finding that I am less tolerant of other people's BS and am being more inclined to back away from people who in the past would aggravate or even insult me, but because they were family, I'd stay low key to keep the peace. Rather than start "trouble," I've just been avoliding encounters with these people. Don't know if it's because in one way I feel I have fought cancer, so why do I have to put up with whoever's BS? Or if it's a physical change in my brain. My husband says I am just being mean and nasty, but at the the same time I am very grateful for all the good things in my life. It's just the things I used to let roll off my back really get to me now. If you have any insights, please share. Also, if there is additional reading material or links, let me know so I can read up on my own. Bottom line -- is this normal?

ChiTownGal
Hi. I doubt this is a drug induced brain issue. Many of us who have been through cancer get a different perspective on life. We tend to get rid of the people around us that cause stress as we really don't need it. We have enough stress in our lives. And it does not matter if its family or not as they should be understanding. We find the people that stepped up to the plate and helped or offered support. Sometimes friends we had for life suddenly disappeared when we needed them. We no longer have the patients to put up with petty bickering over things that really don't matter. People that want to add stress to someone's life when they are dealing with cancer or a long term illness are proubly pretty self centered and not the type of people I want to be around. Many family members don't understand what we have been through or the many emotional, physical and financial issues involved. They think once your in remission everything is solved. But the fact is we will always wonder when the next bomb is going to drop and each cancer check is a mental challenge. I think you are perfectly normal and your husband needs to be more understanding and supportive. Slickwilly

blueroses

The New Normal
Hello. I am a 20 year survivor of NHL and had a bone marrow transplant 18 years ago. I still struggle with tiredness and loss of energy but remember my treatments were a long time ago and may have been different in some ways from the treatments of today, haven't really compared them. Regaining energy levels varies a ton from person to person depending on many variables like type of cancer, treatments, age, general health before intervention, stress levels etc etc. No two people respond the exact same way from treatment/cancer, you must remember that. We can share our stories but best not to think because one person had certain symptoms you will too. However tiredness and loss of energy is one that many share, some only have it during treatments and then after only a few weeks it's gone and others carry the tiredness and energy loss issue on with them for much longer. It's interesting where you wrote "I want my old (healthy)self back" because many of us survivors have said that at one point or another. I remember, weeks after the transplant, I ventured downstairs to do my first load of washing since I had been sick and I could hardly make it back up the stairs with the basket of laundry. I looked up the stairs as if it were one of the worlds tallest mountains to climb - seemed impossible to get up those stairs with my zero energy level. I dropped the basket and said out loud "I WANT MY LIFE BACK", and started to cry. There were many reasons for the crying burst, all the emotions we all have at the diagnosis and all we go through with treatments etc and too remember that we have had toxins put into our body to fight the cancer but at the same time they are fighting the cancer cells they can play with our healthy cells and hormones as well. You reminded me about that moment when you talked about wanting your health back. Know that you aren't alone in these emotions, we all share energy loss to some degree. It's important to share your feelings, good and bad days, and on this site you can be totally honest about your good and bad days and no one will judge you. I hope you are able to get back to work but take it slow and you are wise to start part time, I'm sure something will come along. Blessings, Blueroses.

blueroses

ChiTownGal said:

Chemobrain
Interesting. I just completed treatment (6 cycle ABVD) a week ago and I am finding that I am less tolerant of other people's BS and am being more inclined to back away from people who in the past would aggravate or even insult me, but because they were family, I'd stay low key to keep the peace. Rather than start "trouble," I've just been avoliding encounters with these people. Don't know if it's because in one way I feel I have fought cancer, so why do I have to put up with whoever's BS? Or if it's a physical change in my brain. My husband says I am just being mean and nasty, but at the the same time I am very grateful for all the good things in my life. It's just the things I used to let roll off my back really get to me now. If you have any insights, please share. Also, if there is additional reading material or links, let me know so I can read up on my own. Bottom line -- is this normal?

Common
Hi Chi. Chemobrain as we call it is a well known phenomenon amongst us survivors. Hard to know if it comes from the treatments(at one time I know they didnt think that the treatments crossed over into the brain but not sure if that's still the case anymore) but one thing is for sure we all know it exists. I had a bone marrow transplant 18 years ago and had total body radiation as well and I know that my memory is way different - much poorer and my emotions have had different phases through the years of treatment. Some docs say it's just all the stress of the cancer and I am sure that that doesn't help at all but most of us feel it is much more than that. My hormones were affected by the chemo and I went into premature menopause at only 39 from the treatment so that shows you that hormones were affected, and what are hormones know for - mood changes sometimes - so take it from there. How are your hormone levels? Have you seen a gyno about your treatment and your condition now? That might help you to some extent. Don't let anyone call you down for your moods, you need input and help - not negativity. I don't know how bad your moods are but for sure if it is affecting your lifestyle and those around you then you should seek some advice from your doc, who knows it might be hormone levels or perhaps there is a depression there. I'm just guessing at all it might be but of course you need to check things out with your doc first. Hope some of this helps. You aren't alone though. Blessings, Blueroses.