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Follicular Lymphomia since April 2002 - problems with family

Alice Payne
Posts: 6
Joined: Sep 2009

Hello. I am 63, will be 64 in October. I am new to this forum and very glad to have found a place where I can talk about things. My husband is now 73. My husband and I have pretty good insurance. I have always been a very physical person, we have show horses and I teach others to ride. I was accustomed to moving a bale of hay or a 50 pound bag of grain quite easily.

I am sorry; this is going to be long.

I was first diagnosed in 2002, with follicular lymphoma. I had surgery, chemo and then, after moving, radiation. I don't know what the chemo was. We did watchful waiting after that, with CT scans every so often. My husband and I lived in Georgia where he was a physics department chair at a university. He retired in August 2002 and we moved to North Carolina, to have a joint household with our daughter, son-in-law and grandsons.

Nothing showed up until the summer of 2006, when there were several nodes at different places. I had a CT scan in early June and then went out of town for two weeks. When I got back, my husband had not gone on a business trip with a former college. He wouldn't look me in the eye and started to tear up. We went upstairs to our bedroom and he showed me the letter saying the NHL was back. I held him while he cried.

We did watchful waiting for two years. Then in spring of 2008, something on my liver changed. I had a biopsy, it was a new type of lymphoma, I think called B-cell. I had eight rounds of chemo - the type called CHOP-R - from spring of 2008 thru fall of 2008. During this time I had a problem with both my husband and my daughter.

My husband could not STAND for me to mention any side effect. If I did, he immediately said that he had the same problem and it was due to so-and-so or to whatever, and then he changed the subject to another aspect of his health. I had chemo every three weeks, and was so tired I could hardly move. He would not take on any more duties around the house, even though I could not do anything much, so the burden of taking care of a house for six people, and doing all of the work with the horses, fell to my daughter Lisa. Perhaps the worst part of his behavior was that he was unwilling to pay much attention to my needs. I could ask for help, but he was not going to offer, must less think “Oh, she needs a drink, I should get her some tea.”

My daughter looked at me - I did not look sick, was not sick at my stomach, had no pain, etc. She denied the fatigue so much that I finally asked the oncologist nurse to meet with her and my husband to talk to both of them. My husband cried a bit and would not make eye contact with me or the nurse. My daughter sat in a chair, turned it sideways to the nurse, picked up a magazine and proceeded to flip thru it with angry body language. She would scold me over and over for being lazy. When the oncologist himself said, "Fatigue is the number one complaint of my chemo patients," she glared at him and said, "Yes, all mother does is complain about being tired." The oncologist now asks me, if my daughter is not with us, if she is being mean to me still.

Once the chemo put me into complete remission, I went in the hospital in Chapel Hill, NC, to have a self donor stem cell transplant. I got the stem cells back on Christmas Eve. I ended up with problems with my heart having atrial fibrillation. They had to shock my heart to get it into a normal sinus rhythm. I stayed in the hospital almost 60 nights altogether, before I got to come home and recover. My sister was my caregiver during my hospital stay and my immediate recovery period. I realize now that I could not have done it is I had not had her to take care of me.

I have recovered somewhat, but am still having problems. My cognitive abilities are not as good - chemo brain has lingered fairly badly. I just do not remember that I was asked to make a batch of iced tea, or take the roast out of the freezer, or put something in the washer or dryer. I have lingering fatigue issues, and do not seem to be able to find anything like my former level of fitness. I have peripheral neuropathy badly enough that I ended up having carpal tunnel surgery on my right hand, only to find out that there was no pain relief; the pain is due to the PN and also to arthritis. I had my first post-transplant CT scan in June and a very small node showed up. It is so small they are not sure that it is an artifact/blip or something more serious..

While all of this was going on, my daughter ended up scolding me so much about not helping enough that I lost my temper with her, and told her that I wished she would get cancer and have to endure chemo, and be tired from it, and have someone treat her the way she treated me. I am horrified that I said this to her, but it did have one positive result; she says that I would not have said that to her if I was actually pretending to be tired. However, she is starting to push me again about doing work in the house and at the barn.

My husband is still presenting problems, in that he does not want to face how serious things may be. He also does not want to help out any around the house. All he does now is load and unload the dishwasher. He doesn’t clean the sinks or empty the trash or anything else in the kitchen. When I asked him to help with the laundry, he told me he would wash his own clothing. We pay our granddaughter to clean our bedroom, but he won’t pay her to clean the upstairs bath we use, because other people also use it.

I have had issues with him about simple things. I repeatedly asked for a straw when he would get me a drink. He finally blew up at me and told me that I was just asking for the straw to see if he would obey me, that he didn’t use one and didn’t see why anyone else would want a straw. He’d better about this now, but his basic attitude is still not good.

I had a CT scan this week on Monday, Sep. 21. I still don't have the results. I am beside myself with worry about what will happen. I don’t trust them to be nice to me if the news is good, or if it is bad.

Is it “normal” for family to be like this with a cancer patient? Am I just unlucky with my husband and daughter? I am sorry this was so long.

lees1953
Posts: 20
Joined: Sep 2009

for you, your husband, sister and daughter.

I don't even know what to say...I've nursed my mom during times of her poor health and though I might of gotten aggravated at times I tried really hard not to show it. My brother was of no help.

I am not far enough along in my own cancer battle to know how to respond.

But don't be sorry you lashed out; sounds well deserved.

God be with you, Sheila

Alice Payne
Posts: 6
Joined: Sep 2009

Thank you, Sheila. I just don't know what to do or where to turn. I am scared about how things will go.

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Lois_daughter
Posts: 9
Joined: Oct 2009

Dear Alice,

I am sorry about your cancer diagnosis and that you do not have good support from your family. I have recently lost my mom to cancer, her diagnosis was only a week but she had a back injury 1/2 years before which gave her a lot of pain. I would have given anything to take away my mom's pain and was completely devastated when we got the diagnosis of cancer & she died 1 week later. I did everything around the house and tried to take care of mom as best I could. I did have to go to work during the day. Yes I was tired but I never thought that it was mom's fault. I just wished she could get well so we could do things together again. Not sure what you could say to your husband or daughter to make them understand. I do think you were justified in what you said. My mom always told people how it was, she was not afraid to stand up to people, I and her many friends loved that about her, however, my sister and some other family members were not so fond of that. My sister is completely unsupportive, I don't talk to her now that mom is gone.

Maybe your sister can help or least be there to be on your side. Seek people that will be supportive of you and know what you are going through. My friend has lymphoma too and has completed chemotherapy but has alot of side effects including chemo brain. Please let us know how you are doing. Hope your CT scan is completely normal.

kelly

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

Alice,

I'm so sorry that your are going through what you are. I know what it's like to deal with an unsupportive spouse.

I was diagnosed just 6 months before my 1st marriage. I had offered her a "free out" as I felt I wouldn't be able to give her the "storybook" marriage due to the uncertainties of cancer. She chose to stay (for whatever reason).

Over the next 12 years, in a small 2-bedroom rancher, was a lot of silence. Not just momentary, but weeks, especially towards the end. She never wanted to talk about her feelings, and got upset with me, whenever she heard me talk to anyone about my situation. "Why can't you just move on? No one wants to hear it anymore. You're done with it." And so on. We spent a lot of time, doing things on our own. Fortunately, we had no children which would have made things more difficult.

Recently, I tracked down my medical team from 20 years ago. I decided to pay them a visit, to let them know what they did for me. My current wife was not around for the 1st half of my survival days, but I asked her along with me to meet up with these people. My first wife never even saw the hospital but my current wife got to meet the staff that cured me.

One other short anectdote because it may be relevant. My dad and I had a talk about 10 years ago, why he never came to see me during my cancer diagnosis and treatment days. He initiated this. It turned out that when he was younger, he had been told his mother was in the hospital for gall bladder surgery. She passed away. But he would come to find out, it wasn't that at all, but cancer. And he remembered what she was like at the end, and he could bare to see me possibly looking like her, or losing me as well.

Just because a family member lives with us, doesn't mean they will have that instant connection. There is a fear, because they are not always privy to the direct information that we as cancer patients get. We are the ones on line, discovering other survivors. We hear about stories by people who struggle with lingering side effects, especially psychosocially. We have to deal with the fears that it may come back.

Then again, some may see a cancer diagnosis as an unwanted detour in the relationship, and there could be resentment Or it could be fear of their own.

The last place I though I would ever find myself, was in a marriage counselor's office. I didn't do it with my first marriage, and hadn't planned on it during my current. But DW and I had a problem communicating. And it wasn't just about words, it was method, posture, respect. To have a nuetral third party doesn't mean there is an end to the relationship, nor is it someone who is going to take sides. But rather it's someone who is an arbritator or mediator who can hear what the other is saying, and when the other doesn't express themself clearly, this person helps to keep things focused.

Of course, I'm saying this as I deal with DW and her own health issue. While she does not have something as severe as cancer or heart disease, she is ill nonetheless. But the two of us are two totally different patients. And I know that I have gotten impatient with her, and have even accused her of not wanting to heal. And I know she is sick. But her being home from work for almost a year, has put such a stress on me, taking care of house, family and so on. I try to keep being the optimist that she will get better which I think is the only thing that keeps me from getting darker with her. On top of her physical ill, she is dealing with severe depression because of it. Fortunately, she is going back to the counselor we used for marital. She worked for us. And I'm open to return with DW if need be. Which is what I think makes the difference in my marriage.

Would you consider going to a counselor either separate (initially) or as a couple? It doesn't even have to be a psychologist, it could be a clergy from your church. It's just someone who is nuetral and can hear things that the two of you may not.

Just a suggestion.

Paul E. (Hodgkoid2003)
HDIIIbNS
rad
MOPPABV
cured 19 years without a relapse
4/08 2x CABG
other lingering side effects

Alice Payne
Posts: 6
Joined: Sep 2009

My CT scan in Sep. showed that I am still in remission.

I have an appointment with a therapist - a family counselor sort - this Monday at 1:00. I am hoping that talking to someone will help me feel better. I still cry when I think about what I ended up saying to my daughter. I also cry when I think about the future.

Have any of you followed Dana's blog about cancer on the New York Times web site? He talked about being about nine months out from this last treatment and wanting to 'nest'. If I had the energy to do anything I wanted, I don't know what I would want to do. I find that sad.

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