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Caregiver in a shark tank !!!

likefrogs
Posts: 2
Joined: Jul 2009

Hello all, I am fairly new here I have posted about my husbands itchy hives from ABVD but still can't find anyone else who has had it. He was dignosed with stage 3 A S Hodgkins, non sclerosing nodular type. He has had two ABVD treatments and is scheduled for this third on Tues. After the first one he got itchy hives all over and PCP said it was poison ivy,,,, go figured how did he get that laying on the couch, but we went with it and did the prednisone pack. Day after treament two, it came back, with vengence.. Onc. said it has to be the ABVD and probably the BLEO so were not having that next time.
I don't feel sorry for myself just feeling drained and worn out and just need to vent somewhere. you all seem so sweet and kind and hopefully someone , somewhere will understand. We all know cancer sucks really bad. This is so horrible, after first treatment he felt good the week after, this time he is still horribly drained and just don't feel good. I worry about everything, infection, worsening of his condition, just all kinds of things. I told him I felt like I was in the ocean and there were sharks swimming all around me and the water is over my head and murky and I can't see whats coming. He said he felt like he was in the water with me, and it was scary, but he was in a shark cage and somewhat protected. Does this make any sense to anyone else. I used to be able to see the future and look forward to things, children growing up, getting married, retiring, traveling, etc, now all I can do is wonder if I will raise the kids alone, grow old alone, or have him with me. There is such a great cure rate, but how does a person not think, except for me, we will be the one case that don't get better? Like, am I a mental freak, or does other feel this way. He had no symptoms other then some fatigue and was doing great, then they hit you with something that is supposed to cure you and it puts you on your butt.. makes no sense to me at all... Well I need to stop complaining if anyone cares to add anything here I'd appreciate it.. thanks for listening..
God bless,
Teresa

judyy
Posts: 19
Joined: Jun 2009

Hi Teresa,
I have non hodgkins and never had the itching Hopefully it will get better or else they can help you with it But I do understand the shark thing. It must be hard to be the caregiver. Being the patient at least you feel like you are doing something to get rid of the horrid desease. And the the blessing to him is he has you. He can count on you. That is a great blessing Do not forget that even if things are yucky !! It is so important to have someone to count on. But also take your breaks because caregiving is so hard on a person. I have done that so I know. You are still new to this but don't feel bad about venting.
Let us know if we can help
Blessings
Judy

vicken
Posts: 12
Joined: Mar 2008

My husband was dx'ed with Stage 4 Non Hodgkins in March of 2007. He has been in remission now since September of 2007. We did not have the hives to the extent that you are talking about, but he did break out with itching all over during his Chemo with Rituxin and it has continued periodically since. We mention it every time we see the oncologist, but they don't seem too concerned about it, since it isn't accompanied with a rash for the most part.

As a caregiver, I can relate to what you are going through. I explained it somewhat the same way. I told my husband I felt that I was in the ocean trying to make it to shore, and every time I thought I could feel the sand between my toes, a big wave of disaster came and washed me back out to sea. He would have a treatment, we would get through it, then something unexpected would develop, we would deal with it, then time for another treatment. Repeat the same cycle -- washing me back out to sea.

Like you, I used to look forward to future with my husband. I don't have children, so all of my plans were with him, retirement, travel, etc. I, too, have had a hard time making long term plans. But I finally realized that if I give into that, I will waste what time I have with him. None of us are promised that we will have tomorrow, none of us are guaranteed a future. So really this diagnosis hasn't changed anything. We all live for today, hope for tomorrow and plan for an eternal life. Heck, my husband could outlive me for all I know.

I realize it must be different when you have children and feel the weight of that responsibility, so I won't pretend I can fully comprehend that situation, but I will pray for you and your family. Please know that you are not alone. And please be kind to yourself -- what you are feeling, all of what you are feeling, is very natural and human nature. We never know how strong we can be, until we have no choice but to be strong. You will find that strength that you never knew you had. God bless.

LALB
Posts: 2
Joined: Aug 2009

Hi,

I understand how you are feeling. I think many caregivers do. When you're a patient there are doctors and nurses and lots of friends and family members worrying about you and doing things for you. When you are the primary caregiver you are doing lots and lots of giving not only to the person who is ill, but to the other members of your family. It is hard and I am sure that you are doing a wonderful job.

The first time my husband was sick our children were 9 years old (twins). It was hard because, while they knew he was sick, I tried very hard to keep everything as it had been for them. Unfortunately he has relapsed. The children are 14 and this time it is different in that they more realize the seriousness of the disease. It is harder to protect them and they have significantly more complex emotional needs.

I am trying to take one day at a time. I am also trying to remember to ask folks to help with specific things when they ask "how can I help".

Try to remember to take a little time for you if you can squeeze it in. I know it's hard, but you do have to take care of yourself first -- it's like the instructions on the airplane -- put on your mask first so you can help others.

Hugs to you.

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