[Donna]

Well said Lori!

Donna

[Donna]

Dear Jaggyone;

I certainly feel your pain – it’s so scary, to say the least. I think the best we can do, is one day at a time, get through each day as it comes, no ones knows what tomorrow will bring for any of us. For us that are not the ones suffering from the illness (directly) it’s difficult to know exactly what one is feeling, we have to accept be there to listen and validate their feelings. I wish nothing but strength and courage for you and your husband. Please remember to take care of yourself, your husband needs you, so take time for yourself when you can.

Donna

[Donna]

Oh Esme, Please find some comfort in knowing that Hans was surrounded by the love of you and the rest of the family. You were always by his side. He is now at peace and free from his suffering. Your love for Hans will always be a special part of you, Somehow, someway, we all find the strength to go on. The pain eventually will become manageable.

My prayers are with you and your family,
Donna

[Donna]

Hi Esme,
I don’t think I’ve posted to you before. I actually haven’t posted in quite some time but I do still read the forum from time to time. I must tell you how much I admire your strength and love for Hans, how lucky you are to have each other! There is nothing harder then watching a loved one go through such difficult times such as an illness. I lost my first husband in 1992, he was only 33, my kids were very young and my mom lost her battle to mds almost 2 years now (still feels like yesterday). Anyway, I’m not really sure what I’m getting at here, but I can tell you both Mom and my husband went through depression at some point of their illness, I couldn’t really pull them out of it, all I could do was listen to their fears, accept them and support them on all of their decisions. I’m not sure there is a magic pill. Although I do have a daughter that suffers from depression and has been on anti depressents since the age of 13 and without them would surely fall apart. With illness, I think it’s more natural to be depressed, if that makes sense? I think keep doing what your doing and accept the down days for what they are and hope tomorrow will be better.

All the best Esme to you and Hans,
Take care,
Donna

[Donna]

Hi Karen, I’m sorry that things are not going so well for your dad. I have to ask though, does your dad really not want to know, does he want this information kept from him??. Or – is it because of his depression that he’s not being told?. I know everyone is different, I’m just curious. With my mom, she was the opposite wanted nothing but the cold hard facts, nothing sugar coated and would never ever allow any one of us to speak with her Dr without one of us there, she would’ve had a fit!!

Mom was given 6 months to live, she lived for a little over a year, without any treatment, really I think she made the best decision for her I think had she decided to try chemo, that year she would’ve spent in the hospital sick from the meds, at least she was able to enjoy the year out of hospital, she went into the hospital the day before she died. Everything was done her way and for that I feel good.

I understand we are all different, I was just curious as to why your dad isn’t involved in his own care.
Perhaps I should read your other posts.

Take care,
Donna

[Donna]

Margaret,

I’m so sorry for the loss of your beloved husband. May you find comfort in knowing he is free from his pain and is at peace now.

Wishing you strength for the days ahead.

Donna

[Donna]

Dear Margaret,

Wishing you both strength, courage and peace. It’s a very sad place to be, I’m sure that Luke feels your love wrapped all around him.

Donna

[Donna]

Hi Karen,
I haven’t been able to post for a VERY long time, lots of computer trouble. Anyway, I’ve been trying to log in everyday.
I sure feel for you and what you are going through, it’s very stressful to say the least, anytime anyone is dealing with a life threatning illness. It absorbs every single ounce of your being.
I truly hope that your dad is happier with his new dr and things turn around for the better. I couldn’t stand my mom’s dr but Mom really liked her and valued her “bluntness” or as mom said ‘She’s very honest with me, I appreaciate that’. She never offered Mom any hope. As it was, I suppose maybe she was right, Mom progressed very quickly had she decided to try chemo I think she would’ve spent her remaining days being very sick, and yet I read postings from other members who are her age, have RAEB 2 and have had success with chemo. It doesn’t matter now, what matters is that Mom did what she wanted to do. Best of luck to you and family as you continue on this journey.

Donna

[Donna]

I LOVE Everyboy loves Raymond, in fact I’m buying all of the dvd’s. I think in life there’s a lot of things that are completely out of our control. I can relate to a little bit of what everyone has said. Everyone has a story. I lost my first husband when he was only 33 (aids) which was kept a secret from me, I had 4 children at the time, my youngest 3 months old and my oldest was 9, she is disabled. I thought that was the end of my world. Thank God the virus was not passed on to myself or my children.
I’m now remarried and have had a 5th child, who I homeschool.

When Mom was diagnosed everything happened so fast, diagnosed in April and she passed away in August, although I was accepting of her death, I knew the disease was going to win.
It has certainly hit me now. I can’t talk to her anymore, can’t call her when something is bothering me, kids can’t have Christmas Eve with Oma anymore, she was very young – 62. Anyway, I’m not sure what my point is here, don’t really think I have one and I’m rambling. Mom didn’t want to be treated any differently she wanted her days to be normal, didn’t want to seek any treatment just had her regular transfusions, she didn’t even want those (she hated hospitals and dr’s) we had to talk her into going.

All we can do is live each day and take what’s handed to us, you never know what’s going to come your way.

I apologize for rambling,
Take Care Everyone,
Donna

[Donna]

Hi Pauline,
Flashing lights in the corner of the eye indicate bleeding in the brain.

Donna

[Donna]

Wow Neil! – you are a walking book of knowledge. What a great help to everyone on this forum!. You mentioned the flashing lights in the corner of the eye. That sure strikes home for me.
Yes! – rush to the emerg if that ever happens. My sister in law saw these lights, ignored it, called the dr. to make an appointment for the following week. She died 2 days before her appointment. Not something you want to ignore.

Donna

[Donna]

Marie, I just can’t believe you’re going through this. I too would be very curious about the benzene exposure, I’m sure right now however that’s not high on your list of priorities. Wishing you all strength.

Take care,
Donna

[Donna]

Hi Fran, gosh I sure feel your frustration. I live in Canada, no where near a Centre of Excellence, my mom saw a hemotologist at one of our local hospitals. The closest centre for us would’ve been Seattle. If we were rich people I would’ve gone there but not having the money effected that decision. Could you try contacting the patient liason here at the MDS Foundation. I believe her name is Audrey Hesson? – maybe she can lead you in some direction.
My mom was only 62 when she was diagnosed and they told her she was too old for any treatment other than regular transfusions. Can you believe that?

Take care Fran,
Donna

[Donna]

Hi Ali, I can imagine your fear and worry must be unbearable. I’m sorry I can’t answer any of your medical questions, but I know there are many people on this forum who can and will offer you great advice.

Hang in there, think positive and stay strong.

Donna

[Donna]

Hi Sarah, I don’t think it’s uncommon to feel awful right after the transfusion. It would usually take a couple of days for Mom to feel better and perked up. It was amazing how much better she would feel after that 1st day.

Donna

[Author]

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