Follicular Lymphomia since April 2002 - problems with family

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.