• How to deal

    Asked by daddysgirl83 on Friday, November 21, 2014

    How to deal

    I am just not sure how to deal with the fact my father has refractory MCL, they are trying treatments that recently came off of clinical trials. I am the only child and my parents are divorced, so its just me taking care of my father. What are things you guys do that help you deal, or accept what is happening?

    9 Answers from the Community

    9 answers
    • barryboomer's Avatar
      barryboomer

      I drink a lot....only kidding. There is NO way to prepare for this. It's like dying....HOW do you have any experience at THAT. Just be there for him and Listen a lot. Don't offer advice unless he asks. Look up Nutrition and Cancer to help him. Keep him busy also. Good Luck and cut yourself some slack....Just do the best you can and that will be enough.

      over 6 years ago
    • cam32505's Avatar
      cam32505

      Ask for help if you need it. If you are the only caregiver, you will soon wear out. As far as dealing with it, as patients, we don't have any choice in the matter. It is our bodies, and our cancer. So, you as a caregiver will come to accept it because you have no other choice. We aren't strong because we want to be, we have to be to fight. So, you will need to be to help your father to fight.

      over 6 years ago
    • MsMope's Avatar
      MsMope

      It takes time to accept. First you have to get past the shock of it, then you have to get thru the work of managing treatment. If you feel overwhelmed, that's about right.

      I had to help my mother when she developed severe dementia. My husband drove me where I needed to go, but otherwise, I had to do all the work, make all the choices, bear all the responsibility. It was very hard. So my heart goes out to you.

      When somebody can help, reach out to them. People will offer help, but they're often waiting to be told what to do. If somebody offers help, take them up on it right away. Ask if they can bring over a casserole on a certain night, or take the garbage cans out to the road every week, or occasionally pick up something for you at the grocery store. Don't be afraid to ask. People usually like to help, and it makes them feel good that they did.

      Ask around at the cancer center for other people who can help. Where I went, there was a full-time navigator from the American Cancer Society. She had lots of things to offer - hotel rooms if you have to drive a long way to treatment, for example. Check in with the social worker, talk to the nurses. Just poke around to see what services are offered. There may be a caregiver's support group that could help.

      Be kind to yourself. The worst thing you can do is get burned out from helping. Being an only child is hard when a family crisis happens. While keeping her informed, I try to shield my daughter, an only child, from the worst things.

      Accepting is difficult. You have to work through that with your dad. Tell him you want to know everything. I think information helps us process better. Will you go with him to appointments? I was glad my husband was with me at every appointment. He knew everything I knew.

      Good luck to you and your father. We all just keep moving forward. What else can we do?

      -MM

      over 6 years ago
    • Hoping4ever's Avatar
      Hoping4ever

      Best of luck to both of you especially when you find out that acceptance is your only choice, so you can move on. But care giver's job is so exhausting , you will need all the help you can find to carry on this burden with you. I speak of experience, because my husband was my only care giver ,not by choice because i was far away from home and it was very tiring . I hope you pass this difficult time with all the help and info you badly need.

      over 6 years ago
    • Schlegel's Avatar
      Schlegel

      I am speaking as both a survivor and a caregiver. It takes a long time to accept a diagnosis of cancer. My brother was diagnosed with lung cancer in October 2013. Up to the end he did not accept it. The day before he died in May he told the doctor, "You're going to treat me until the end." The doctor replied, "This is the end." Sounds blunt, but knowing my brother, he had to say that. Advice -- listen, listen, listen and accept whatever feelings he has and yours too. Do not try to change his feelings. It is okay to be sad, angry.... He just can't take his anger out on you. Also, let him make the decisions regarding his care even if those are not the decisions you would make. And, yes, there will likely come a time when he chooses no more treatment.

      over 6 years ago
    • Jalemans' Avatar
      Jalemans

      Hi daddysgirl, my dad died of colon cancer when I was turning 20. I felt like he was all I had since my mother died when I was 10. My older siblings were grown & moved away & my younger sister was too young. Anyway, my point is that I made it through & you can also. Hopefully, the trials will have a positive outcome for your dad. Sometimes, we are thrust into situations we aren't prepared for. Come here for support if it helps you as there are many supportive people who will help to the best of their ability.

      over 6 years ago
    • jhale17's Avatar
      jhale17

      Caregiving for a cancer patient is a learning experience. My wife had breast cancer in 1991 and pancreatic cancer in 2006 that took her life after eighteen months of doing everything to prolong her time. It wasn’t until I got cancer that I understood what one feels when you are told you have cancer. Most survivors I talk with agree that the shock of being told is devastating at first and your life is changed forever. One is a cancer survivor from the day of diagnoses and for the rest of their life.

      I knew nothing in 1991 about cancer and assisted my wife in the same way I did for any other illnesses. Fortunately, a lumpectomy and external radiation gave her remission. Her 2006 episode demanded a far more reaching attentiveness as a caregiver; it went way beyond my previous understanding. Using online information does provide a basic understanding that allows the caregiver to develop techniques. The internet has information on most any topic; however it often does not include the latest data. It does provide the caregiver better questions to ask of the patient’s medical team.

      Over the years cancer patient treatment methods have changed. Infusion duration and dosage vary to better fit patient needs. Better premeds (pre-chemo) are given for prevention of patient side effects to chemo. More efficient detection testing modalities are now being used. Treatments have changed that result in improved outcomes. With more treatment options seeking a second doctor’s opinion may ease patient or caregiver’s mind. The primary care physician may be of help to give you an explanation of the overall treatment process.

      The treatment period is where you as the caregiver need to understand that the side effects of each chemo treatment vary. One doctor said the last treatment’s side effects are no predictor of the next treatment. So as you go through the treatments you may find the need to change things like what tasted good last time does not now. This can happen with other things like sleep patterns, resting, walking, and reading. When I was in my first chemo I could not watch the fast action of a football game on TV. My brain could not process the fast action on the screen. This is but one side effect that is referred to as chemo brain. My subsequent chemo treatments did not do this.

      Eating is an important issue to deal with as swallowing may be a problem. If the patient has periods of tastelessness where most things taste like cardboard, they will require an attitude adjustment. A friend of mine said it this way, “My Marine doctor told me, ‘If you don’t eat you die!’” My doctors told me to eat anything, just eat. Once I was sitting next to a survivor and he said he was happy because last evening he was able to eat a plain baked potato. Try a variety of foods to see if you can find those that come close to pleasing the palate. What tastes good this month may not be next month. If you do not eat one night it is not the end of the world and tomorrow may be better.

      Some doctors prescribe what they call “miracle mouthwash” to use for dealing with mouth sores and sore throat. The doctor mixes an RX of different things to soothe the throat. It numbs the mouth tissue to give relief plus it heals.

      Eating, drinking lots of water, sleeping and rest with some exercise in a daily routine usually helps.

      Do what you can and get help when you can not. As others have said there is help out there if you ask for it. I did and it all worked out.

      Best of luck to you and your father. Hang in there.

      over 6 years ago
    • Susieblue's Avatar
      Susieblue

      So many helpful answers. I am going to give YOU suggestion for you. I am the patient not the caregiver but I observe things. First, you need to take care of yourself. Eat, sleep, drink fluids. Lack of sleep clouds your judgement. When your dad naps, you nap. See if someone can stay with your dad and you go out and do something you want to do, like take a walk, get a coffee , go to a movie, anything. Every single day your day wakes up in the morning, tell yourself, yippee it's a great day, I have dad here! Celebrate every moment. Tell him you love him. Do you have a journal? I haven't written anything myself because I am telling myself I will beat this episode. Try not to think ahead too much. I met with a counselor and she said politely but firmly, that all of us will eventually die. That's true. But, I am not dying today, you are not dying today, and your dad is not dying today. We don't know what tomorrow will bring or next month, but today we are living.

      over 6 years ago
    • Ellie59's Avatar
      Ellie59

      It is a lot for you to Cope with Hon. I concer with everyone here. Live in the moment, breath and just do the next right thing. Make sure you take very good care of yourself. You can't be there for anyone else unless you do.
      You and your Dad are in my thoughts.
      Ellie

      over 6 years ago

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