Caregiver question – managing a job?

[Angela Elliott]

Hello all. My spouse was recently dx with MDS. I am currently on leave from my job through his second cycle of chemo treatment. His first stint involved 16 days in the hospital due to heart and infection complications, so he came home very weak.

We only recently moved to our current home and location less than 6 months ago, so we have very little infrastructure here (only a couple of friends and no family members).

I’m trying to look critically at how much caregiving my spouse will need, assuming the treatments continue and the response is effective enough to warrant a SCT (which of course we hope will occur).

What has it been like for those of you who are working outside the home? How are you able to juggle the two?

Thanks for any insight. I’m really struggling trying to determine if I need to resign my position.

sincerely and thinking of you all,
angela

[rar]

Every case of MDS is different. I had a SCT about 4 years ago. Of that time I absolutely needed a full time care giver for about a year and a half. Hope for a compassionate employer. Your spouses has to be the first priority. I wish you well. My MDS is cured but GVHD is still a major problem.

Ray

[Chris Ballmer]

I appreciate this question Angela. This forum should be able to talk about the real issues of this disease if it is to be helpful to people fighting for their life and quality of life.

I have MDf DX since December 2017. I am feeling very little symptoms, but very stressed. As is my spouse.

I am worried that though I will be taking drugs, and chemotherapy and possible SCT, I will be slowly dying. Does anyone want to share what the symptoms do as they become more and more and how does it finally take a life? I understand it to be secondary effects, like pneumonia or others.

I couldn’t see getting through this without someone who can commit to a long term care program, and even more so, someone that loved me.

[Allan Romriell]

Chris,
You just posed a question I have had myself. I was diagnosed june of 2017, been on wait and watch since then with only some tiredness and shortness of breath when exerting myself as the symptoms so far. So right now everything appears fine but as MDS is terminal I know there are worse times ahead. I just don’t know when they will start and how bad it will be. Having a good care giver, as my wife is does make a difference, and getting to go on these discussions to hear of others experience is comforting, but sometimes late at night, it gets a little scary in my head, wondering where the road is leading….. I hope all is well with you and yours, take care.

[Angela Elliott]

Thanks all, for your thoughtful and kind responses. I made the decision to resign my job so I could be here to hopefully assist my husband in regaining some strength (following his 16 day hospitalization) and to be here for his treatments, dr.’s visits, and hopefully SCT if he is a candidate. At the very least, if he is not, I want to be with him for as long as possible. Were we to live to 105, it would still not be enough 🙂

My thoughts are with you all,
angela

[Allan Romriell]

All the best to you both Angela, you are right, there is never enough time for those you love.

[Lee Snell]

Hi. I have just been through the end stage of MDS as the carer for my husband. He was only 45 years old. As difficult as his passing has been I feel I would like to share any info that could be of some help to any of you.

[Allan Romriell]

Thank you Lee, I am sorry for your loss, I can’t imagine how difficult it would be. I am doing fairly well now on a watch and wait routine and most days feel fairly normal, but I know that will not last and what the end game will be as there is no cure. I have seen 3 loved ones succumb to cancer and I imagine that is where I am headed as well. Any advise on what to plan on, any thing you learned that might be of help would be appreciated. All the best to you, thank you again for your willingness to speak of your ordeal.
Allan

[Lee Snell]

Hi allan, im am new to posting so bear with me. My journey with mds started 4 years ago when my husband had a blood test before his hip operation. Unfortunately he had osteoarthritis in his hips and the heamatologist noticed abnormalities in his blood tests. It took 4 years and 3 bone marrow biopsys to diagonise his condition. We only found out he had mds in november last year after years of being told that they didnt know what he had. He was only 45 and i only 39. Being slightly blindsided by the diagnosis and thinking we had alot more time then we did he started treatment with vidaza in feburary this year. Unfortunately this was way to late and it made his symptom worse.he was having blood in his mouth most mornings and was put on transamix acid which stopped it for a while. While on treatment he was given EPO and injections to stimulate his white blood cells. Because of his religion he refused to accept blood transfusions, which i could never understand as i am not religious.He got very tired. The final week of his life he slept alot. Thankfully he was eating small amounts and still takeing fluids. Eventually he had trouble standing and could hardly hold a cup to drink. This post is fairly long sorry about that but i thought i would give you some history first. I never know how far to go with the experence we went through, it is still quite painful to relive. I can only offer my point of veiw i am holding back a little.make a will,get your affairs in order, talk to your family about the hard things,like how you are feeling,what your wishes are, funerals, even what songs you want played.oh and look into bone marrow transplants. I wish you the best of luck with every thing.

[Allan Romriell]

Lee,Thank you so much for sharing your story. I was diagnosed after having routine blood work during a physical last april. My blood counts were low and my doctor referred me to a hematologist who sent me for a bone marrow biopsy which confirmed MDS. I was fortunate that my doctors were on top of things and also that I have a low risk for of the disease. It was hard having to tell our children and my mother that I had a form of cancer, but I am much older than you and your husband and I at least have had time to prepare them and myself for the future. I thank you again for what you have shared. They say time heals, but I think time only helps you deal with the pain. I don’t think you ever really heal from the loss of someone so dear to you, you hopefully just learn how to live with the hurt. I don’t know how my journey will go only that it will eventually end, before I want it too I am sure. I wish you all the best in the future. take care.
Allan

[Angela Elliott]

Hi Lee, thank you for sharing your story. my heart goes out to you, i’m in a similar role now as the spouse and i have to wonder how much time i have left with my beloved. He is considered “high risk” in that the blasts were at 14% when he was diagnosed. he has just completed his second cycle of chemo shots. we were told by the oncologist that he would be tested again (bone marrow biopsy) after the fourth cycle.

So– here’s a question, and of course I’ll ask the oncologist this as well, but we wont see him for another couple of weeks. Who becomes eligible for stem cell transplant, those for whom the chemo is working (and who have SC matches?) I asked my husband why aren’t MDS candidates just immediately “fast tracked” into the SCT in that it is the only treatment that has the potential of coming closest to a “cure”? (Although I realize there are a host of issues within SCT and afterwards as well).

[Lee Snell]

Hi, i live in australia and unfortunately we seem to be a bit behind on knowledge about MDS. that is why i joined this forum as even the cancer council forum here has only basic info on the condition and no one to connect with. feburary this year My husbands haemoglobin was at 62, wcc 2.4, platlets 15, blasts 0.07. not sure if you if you record things the same way? he also had chromosone abnormalities with t(5;7) resulting in a loss of 5q and 7q and additional material detected on chromosone 16. IPSS score intermediate-2, IPSS-R high risk. originally they thought he had progressive anemia and thrombocytopenia. because of his age he was referred to a doctor in sydney who told us that he was a good candidate for bone marrow transplant because he was white (sorry to offend anyone but that is what he said to us). Because every thing for us happened so quickly we had very little time to look into anything in depth. it dose seem that over here you have to be high risk to be considered for bone marrow transplant. there are risks involved in this procedure as they pretty much kill all your cells and replace them with healthy ones. this involves months in hospital and a possibility that it won’t work. i have never understood the wait and watch approach but i guess as this is a rare disease that they are still trying to find the best way to deal with it. keep yourself healthy, eat well, we even saw a naturopath to see if he could help. i hope this has been of some help. i think it is helping me to deal with the situation a little better to be able to share what i know. best wishes to all.

[Lee Snell]

Hi Angela,
If you ever need to talk about your situation I will gladly listen and answer any questions you have,if I can. It is a difficult time for you and your husband. Look after yourself as best you can.

[Angela Elliott]

Hi everyone. I’ve not been on this board much since my original post on this thread, but just wanted to “close the circle” by posting one more time.

On the day that my husband (aged 69) was to have begun his 3rd round of Vidaza, his blood counts showed his WBC to be extremely high. A bone marrow biopsy showed that he had gone from 14% to 53% blasts, even with two cycles of Vidaza so he had progressed to AML. He began in patient chemo with Vyxeos and had some very serious side effects which almost cost him his life (10 days in ICU with severely infected skin lesions and respiratory distress and atrial fibrillation).

Long story short, at the end of 42 days in the hospital, we learned that at 30% of stem cells that had returned, 40% of them were leukemia. We brought him home on hospice where he lived for about 14 days, surrounded by kids and grandkids, and he died on July 5th.

Obviously, I’m heartbroken (as is all the family) but grateful that he died as comfortable as possible. He was responsive (lucid periodically, able to verbalize) until about 2 days prior to his passing.

I wish all of you courage and strength in your treatment. I still have doubts about if we did the right thing stopping his blood transfusions once we got home, but the cancer was so incredibly aggressive and he was so weak when he got home (after over 6 weeks in the hospital) it would have been difficult to get him to a clinic for blood work and then to an infusion center every week for a transfusion. I guess I will second guess myself for a long time, but ultimately, the AML was overpowering.

peace to you all
angela elliott, loving wife of Richard Vallandingham 1949-2018

• This reply was modified 5 years, 10 months ago by Angela Elliott.

[Wendy Brizer-Maciol]

I am so very sorry for your loss. My father passed away of MDS on May 24th. We have to try and be strong. You did the right thing.

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