Emotional battle during treatment

Marylin

In looking back on my experience with cancer, I often think about the many emotional issues I dealt with, issues that were separate from my day-to-day struggle with the cancer itself. And, I wonder what I would want to change if I had to go through it all over again.

I believe that most of us going through cancer treatment experience some or all of these emotions --- We feel a loss of dignity and sense of “humanness." We feel a loss of control over our life as it was lived pre-cancer. We're concerned for our children and how we can keep their lives somewhat normal during this time. And, we wonder if our spouse or companion will still love us and find us attractive after being with us at our very worst.

I never discussed these things I was feeling with my daughter or husband until about 12 years after the fact. It is almost impossible for our loved ones to know what we are going through, emotionally, during this time. They are too busy concentrating on doing what they think is necessary to get us well again.

So, if I had to go through it all again, these are some of the things I would do differently and things I would want my caregivers to do the same or differently:

1. I would be more open about my condition with my 7 year-old daughter. I would not leave it up to my husband. I learned years later that he never discussed anything with her.
2. I would want my husband to let me know (tell me) that he was still "in love" with me and considered me attractive (even though I was down 40 lbs. From my normal weight).

3. I would want my mother to care for me again. She was absolutely wonderful! She
devoted a year to taking care of me. She always ”knew" I would get well and never allowed anyone negative around me. She cooked my favorite foods and rubbed my legs and feet every night to ease the nerve problems caused by chemo. I do not think I could have held up if it had not been for her.

My husband stopped working so he could care for our daughter and me during this time. It became apparent shortly after I started chemo, however, that he would be unable to care for both of us, so I made the decision to stay with my mother during this time. Although my husband outwardly supported my decision, I learned later that he was hurt and resentful. These feelings were, inadvertently, passed on to my daughter.

If I had to live this time over again, I would definitely NOT change my decision to have my mother care for me. I truly believe she saved my life. My daughter and husband now understand that I made the right decision.

4. I would want my husband to be available to me whenever I needed him but to stay
away when I was just too weak or tired to talk to him or be with him. He did exactly
that. Whenever I felt depressed, I would call him, and he knew exactly what to say.

I hope this has been of some value to the caregivers out there and those of you that are currently undergoing cancer treatment and feel some of the things I felt when I was in your situation.

God bless all of you.
Marilyn

kangatoo

Well said Marylin. I guess if we all looked back on the way we handled things there would be some changes. One of the most difficult things I came across was the inablity of some family, friends etc. to talk with me. Undortunaely cancer still has the big "C" connotation to it and many find it difficult to talk about. I think this stems from the fact that a lot of people still think "if you have cancer you are a goner"......which we all know is not true. The other thing is understanding. They do not undestand that those with cancer are effected both physically and emotionally. Many other illnesses can be treated and then the patient is usually ok to go on with their lives, maybe with follow up surveillence. Cancer for at least 5 years is an ongoing worry and that takes its toll. Personally, I tried to talk freely about my cancer and encouraged friends to join in. Not for sympathy but to help them realise the way I felt and the crappy stuff we have to go thru..literally!
Although after surgery and chemo we might look "fine" on the outside, the underlying physical/emotional things people don't see. Telling us to be positive is of some support and sure we all try to be that way rather than negative...the difficulty lies when family/friends etc. tell us to be positive and then leave it a that. They then seem to dismiss any other conversation. Maybe they dont want to dwell on the other issues, ie;....how we really feel. So, in a nutshell, I try to not to earbash them about my illness, but try to get them to be "open" with discussing cancer. Try to give them some "understanding".
Thank you for your post...great to see you have kicked some butt!
cheers kanga

Marylin

kangatoo said:

Well said Marylin. I guess if we all looked back on the way we handled things there would be some changes. One of the most difficult things I came across was the inablity of some family, friends etc. to talk with me. Undortunaely cancer still has the big "C" connotation to it and many find it difficult to talk about. I think this stems from the fact that a lot of people still think "if you have cancer you are a goner"......which we all know is not true. The other thing is understanding. They do not undestand that those with cancer are effected both physically and emotionally. Many other illnesses can be treated and then the patient is usually ok to go on with their lives, maybe with follow up surveillence. Cancer for at least 5 years is an ongoing worry and that takes its toll. Personally, I tried to talk freely about my cancer and encouraged friends to join in. Not for sympathy but to help them realise the way I felt and the crappy stuff we have to go thru..literally!
Although after surgery and chemo we might look "fine" on the outside, the underlying physical/emotional things people don't see. Telling us to be positive is of some support and sure we all try to be that way rather than negative...the difficulty lies when family/friends etc. tell us to be positive and then leave it a that. They then seem to dismiss any other conversation. Maybe they dont want to dwell on the other issues, ie;....how we really feel. So, in a nutshell, I try to not to earbash them about my illness, but try to get them to be "open" with discussing cancer. Try to give them some "understanding".
Thank you for your post...great to see you have kicked some butt!
cheers kanga

Hi, Kanga...You are so right about family, friends, etc. finding it hard to talk about cancer because most of them still think cancer is a death sentence. You would think, with all the medical advances we've made over the years, that people would look at it differently today. When I had cancer, 18 years ago, most people definitely considered it a death sentence.

I agree with you that it's useless to tell someone who has cancer that they should just be positive and then leave it at that. I think they say this because they just don't know what else to say or do and it's kind of like they're leaving it in the hands of a higher power. If they only realized that they don't have to have the answers --- just be there for their loved one while they're going through their struggle with cancer. And, just listen.

You made a wonderful point about cancer being different from other illnesses in that you're never quite sure if it might come back, so you're on pins and needles for at least 5 to 10 years after you have supposedly been cured. You may look great on the outside (no sign of ever having been ill), but you continue to carry this emotional weight around.

I understand what you mean when you say you want to be able to talk freely about your cancer so you can share what you're going through, without having your friends think you're looking for sympathy. I'm not sure, however, that this is something most people, who have not experienced what you're going through, are comfortable talking about. I really believe it's because they feel so helpless. It hurts them to see this happening to you, and they just don't know how to deal with it. Also, they may be afraid it's something that could happen to them, and they just don't want to discuss it. That's why these forums are so great. It enables one to share things with those that are dealing with a similar situation. These are the only ones who can truly understand.

By the way, how are you doing? I'd love to hear some of your history if you feel like sharing it with me.

Marilyn

kangatoo

Marylin said:

Hi, Kanga...You are so right about family, friends, etc. finding it hard to talk about cancer because most of them still think cancer is a death sentence. You would think, with all the medical advances we've made over the years, that people would look at it differently today. When I had cancer, 18 years ago, most people definitely considered it a death sentence.

I agree with you that it's useless to tell someone who has cancer that they should just be positive and then leave it at that. I think they say this because they just don't know what else to say or do and it's kind of like they're leaving it in the hands of a higher power. If they only realized that they don't have to have the answers --- just be there for their loved one while they're going through their struggle with cancer. And, just listen.

You made a wonderful point about cancer being different from other illnesses in that you're never quite sure if it might come back, so you're on pins and needles for at least 5 to 10 years after you have supposedly been cured. You may look great on the outside (no sign of ever having been ill), but you continue to carry this emotional weight around.

I understand what you mean when you say you want to be able to talk freely about your cancer so you can share what you're going through, without having your friends think you're looking for sympathy. I'm not sure, however, that this is something most people, who have not experienced what you're going through, are comfortable talking about. I really believe it's because they feel so helpless. It hurts them to see this happening to you, and they just don't know how to deal with it. Also, they may be afraid it's something that could happen to them, and they just don't want to discuss it. That's why these forums are so great. It enables one to share things with those that are dealing with a similar situation. These are the only ones who can truly understand.

By the way, how are you doing? I'd love to hear some of your history if you feel like sharing it with me.

Marilyn

Hi again. I am fine here now. Have been NED for 18 months now...gee..the time sure goes quickly although back then things seemed slow doing chemo. I was dx'd stage 2, surgery then 6 months chemo(5fu/leucovorin). I had some problems with surgery, one being that the epidural I had did not work completely so I woke up in ICI with no anaesthetic above the belly button...charming that was! I had some complications with that. The chemo was no fun, especially the last 2 months. I had some heart problems caused by the chemo..or so they say, now doing ok. My main problem is fatigue and bad sleep although slowly improving there.As I said, we all react differently.
The best part about the last 2 years has been this site..without it things would have been harder to come to grips with. The group here and the wonderfull people involved are brilliant. You might like to read my profile...just search "kangatoo" on the member pages for more info. Thanks for asking. Good to see you here, it gives us all hope.
cheers, kanga(Ross) and Jen

jsabol

Hi Marilyn,
I was very touched by your thoughtful post. You are so right about the emotional consequences of cancer. There are powerful forces at work when we are diagnosed and going through surgery and treamtent; and the lack of a roadmap means we all seek our own path.
My treatment for stage 3 did not leave me as sick as yours did, thankfully, and my children were older (15 and 17). I think my life experience (my father died of colon cancer 3 years prior to my diagnosis) as well as my experience as a nurse in long term care gave me a leg up on some of the "intellectual" understanding, but the emotional aspects sure are different when I'm the patient.
I am now 15 months out of treament, with No Evidence of Disease, but still very aware that I am at a risky point in terms of possible recurrance. Most days I succeed in living my life without interference from that worry. I am so much more aware of all the things that I have to be thankful for. Having cancer, while a horrible experience overall, has, I think, changed me for the better. Hubby and I are celebrating life with a trip to Florence this fall, with both kids off at school and doing well.
Thanks for sharing your thoughts, Judy