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Thanks very much for your suggestions. I don't think my wife is really capable anymore of activities like folding laundry. Sometimes her aides put on French music and that seems to perk her up. My real desire is to expose her to more stimulation, rather than just have her sit in a wheelchair all day. But I don't know what kind of stimulation will work best for her. Pet therapy is a good idea. We even tried a mechanical cat that purred etc, but she didn't seem to relate to that much at all. Possibly a guinea pig, which was a favorite animal of hers while we were living in Australia. My wife Christine was a very active person, who was a docent at the Melbourne, Australia Zoo, drove around the entire periphery of Australia by herself, was held by the Vietcong for a few days in Vietnam, etc. So it's sad to see her doze most of the time. It could be that she's not really capable of doing much anymore, but I want to experiment with more stimulation than she's getting at present.

I am a 60 year old caregiver for my husband who is 65. July 2017 he was diagnosed with Multiple Myeloma. In January 2018 he had an autologous stem cell transplant. He achieved MRD but was on maintenance lenalidomide from April 2018 until September 2019. In September 2019 he developed C-Diff and pneumonia and ended up in the hospital for 5 days. They did a bone marrow biopsy in October 2019 to see if he could discontinue the lenalidomide. He was then diagnosed with Myelodysplastic Syndrome. Another blood cancer. The doctors are pretty certain he got MDS from the chemo he received before his stem cells transplant.

He started treatment for MDS January of 2020. We are going through treatment on a clinical trial at Mayo clinic and also our local hospital/clinic. The first 3 cycles of treatment everything was scheduled and we proceeded just fine. He has just started cycle 7 but with cycle 4 thru 7 we have had delays because of low neutrophils and WBC. How do people handle the delays? The not being able to plan anything because you don't know when your next cycle of treatment is? How do you handle the anxiety of not so good lab results? Who do you talk to? It is hard to talk to friends and relatives. My husband looks great and feel good. If you look at him you would never know he is going through cancer treatment. So it is hard for people to understand the anxiety and emotional rollercoaster I am on. I have always been a planner. The more information I can have the better. I don't find a lot of information for MDS. This adds to my anxiety. If I knew what to expect, what to watch for, etc., I think I would do better. As a caregiver are you offered a social worker or someone that you can talk too? We have never been offered any of those services so not sure if they are available.

Any tips or tricks that others use to lessen the anxiety and stress would be helpful. I can tell myself to just live in the moment. That works some of the time. But then I start to worry again. So looking for resources and emotional support.

Kris

I am a 60 year old caregiver for my husband who is 65. July 2017 he was diagnosed with Multiple Myeloma. In January 2018 he had an autologous stem cell transplant. He achieved MRD but was on maintenance lenalidomide from April 2018 until September 2019. In September 2019 he developed C-Diff and pneumonia and ended up in the hospital for 5 days. They did a bone marrow biopsy in October 2019 to see if he could discontinue the lenalidomide. He was then diagnosed with Myelodysplastic Syndrome. Another blood cancer. The doctors are pretty certain he got MDS from the chemo he received before his stem cells transplant.

He started treatment for MDS January of 2020. We are going through treatment on a clinical trial at Mayo clinic and also our local hospital/clinic. The first 3 cycles of treatment everything was scheduled and we proceeded just fine. He has just started cycle 7 but with cycle 4 thru 7 we have had delays because of low neutrophils and WBC. How do people handle the delays? The not being able to plan anything because you don't know when your next cycle of treatment is? How do you handle the anxiety of not so good lab results? Who do you talk to? It is hard to talk to friends and relatives. My husband looks great and feel good. If you look at him you would never know he is going through cancer treatment. So it is hard for people to understand the anxiety and emotional rollercoaster I am on. I have always been a planner. The more information I can have the better. I don't find a lot of information for MDS. This adds to my anxiety. If I knew what to expect, what to watch for, etc., I think I would do better. As a caregiver are you offered a social worker or someone that you can talk too? We have never been offered any of those services so not sure if they are available.

Any tips or tricks that others use to lessen the anxiety and stress would be helpful. I can tell myself to just live in the moment. That works some of the time. But then I start to worry again. So looking for resources and emotional support.

Kris

I am a 60 year old caregiver for my husband who is 65. July 2017 he was diagnosed with Multiple Myeloma. In January 2018 he had an autologous stem cell transplant. He achieved MRD but was on maintenance lenalidomide from April 2018 until September 2019. In September 2019 he developed C-Diff and pneumonia and ended up in the hospital for 5 days. They did a bone marrow biopsy in October 2019 to see if he could discontinue the lenalidomide. He was then diagnosed with Myelodysplastic Syndrome. Another blood cancer. The doctors are pretty certain he got MDS from the chemo he received before his stem cells transplant.

He started treatment for MDS January of 2020. We are going through treatment on a clinical trial at Mayo clinic and also our local hospital/clinic. The first 3 cycles of treatment everything was scheduled and we proceeded just fine. He has just started cycle 7 but with cycle 4 thru 7 we have had delays because of low neutrophils and WBC. How do people handle the delays? The not being able to plan anything because you don't know when your next cycle of treatment is? How do you handle the anxiety of not so good lab results? Who do you talk to? It is hard to talk to friends and relatives. My husband looks great and feel good. If you look at him you would never know he is going through cancer treatment. So it is hard for people to understand the anxiety and emotional rollercoaster I am on. I have always been a planner. The more information I can have the better. I don't find a lot of information for MDS. This adds to my anxiety. If I knew what to expect, what to watch for, etc., I think I would do better. As a caregiver are you offered a social worker or someone that you can talk too? We have never been offered any of those services so not sure if they are available.

Any tips or tricks that others use to lessen the anxiety and stress would be helpful. I can tell myself to just live in the moment. That works some of the time. But then I start to worry again. So looking for resources and emotional support.

Kris

Hi. My name is Darin and my son is is on the liver transplant list. Just patiently waiting to get the call and have him feel better again

Hello @fordar Nice to e-meet you here Darin. I am sorry to read of your son's situation, but glad you found Mayo Connect! I am Scott and I was my wife's caregiver and know the times of waiting often were among the tougher ones.

Good to hear your son is on the list and there is a Transplant group here on Connect too. It is at https://connect.mayoclinic.org/group/transplants/

How long has your son been on the list?
Strength, courage, and peace

A few weeks here at mayo and he was on the list at penn state hershey since january. This psc came hard and fast after 9 years of pretty much little liver issues

Good morning @fordar It sounds good that he has been on the list for awhile now.

Does your son live close by?
Strength, Courage, & Peace