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Living with Illness Coping with disease, getting help, dealing with family, staying optimistic, quality of life, hospice care

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  #1  
Old Sun May 8, 2011, 03:10 AM
Julianna Julianna is offline
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Join Date: Feb 2010
Location: Victoria, Australia
Posts: 184
Finding support during treatment

I'm a single woman, who's starting to realise the reality of my MDS and future treatment options. My Doctors talk to me about finding support, even someone to care for me during transplant etc. I am planning to move back to Brisbane soon (in another state) to be closer to my family, but my Mum is the only one sort of available to help me. However, she also cares for my Dad with Muscular Dystrophy. He is now eligable for emergency respite if needed - he has "high care" needs.

I am really not wanting to burden her with all of MY stuff too. His respite has always been there to give her a rest. Not to care for me. Are there options for single people like me to get support during treatment? Community nurses may be able to help a little. Any ideas?

If I don't have enough support, would they not go ahead with treatment? They said I can't really do this on my own. I'm really not sure what to do. My last hospital visit has made me a bit stressed out about it. I need to have a plan, my Dr said.

Thanks for any input. Julie
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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  #2  
Old Sun May 8, 2011, 06:08 AM
Chirley Chirley is offline
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Location: Logan City Australia
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Hi Julie,

Sorry to hear you've been unwell.

On the support front....have you contacted the Leukaemia Foundation. Maybe if you email Anthony he can arrange for a support person for you. When I was in hospital recently my roomie for the first week had AML and they were from the country. They had a support person from the Leukaemia Foundation helping with all the logistics.

Good luck
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #3  
Old Sun May 8, 2011, 05:57 PM
Neil Cuadra Neil Cuadra is offline
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Jules,

If your Mum is like other mothers she will probably want to help you whether or not it's a burden for her to look after both you and your Dad. Rely on her if you have to. It's important to have someone else around when you're undergoing treatment. If you don't have somebody from the Leukaemia Foundation or provided by the treatment center (covered by insurance, perhaps?) I think you should ask your Mum to help you, at least to get through the hardest days. Caregivers deserve regular breaks but they can also summon stamina and strength when it's necessary. She might surprise you.

Today is Mother's Day in the U.S. and I think you just had the same holiday in Australia. Hooray for mothers! I hope you find other sources of support but you've got one in your corner already.
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Old Mon May 9, 2011, 12:03 AM
Julianna Julianna is offline
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Join Date: Feb 2010
Location: Victoria, Australia
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Thank you for that. Yeah I think the Leukemia Foundation is a good place to at least talk through some of these things. And yes Neil, you're probably right about my Mum. I really wish I didn't feel like such a burden still. I wonder if a transplant is really worth it. I've made a real mess of my life and now I feel a bit stuck with not many options for the future.

I've been seeing a psychologist and other specialists to try and help, but I've seemed to come to the end of answers. Thinking that whoevers marrow that I have matched, would be better used on someone else who would appreciate it more. But to be honest, I'm scared out of my brain at the same time, as to how this disease is going to progress.

I know I keep bringing up these same things all the time, but it still isnt resolved for me. When I fight this disease - to keep alive - I need a reason to fight for. And I just dont have one. I just feel like giving up, and that would be better for everyone involved. Thank you for listening to me. Not sure where else to go from here. A lot of these issues are longstanding, and hard to resolve.
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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Old Mon May 9, 2011, 01:09 AM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
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Jules, you sound so down. I wish I could help but I see you are doing the right thing and getting the help that you need.

How about this.....Day 1 of transplant is also day 1 of your new life. The past will be the past and your future whatever you decide to make it.

I don't know how much help I'd be but I could visit you in hospital if or when you come back to Brisbane for a transplant.

You have a lot to deal with on your own and it sounds like you're dealing with it the right way.

My thoughts are with you.
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #6  
Old Mon May 9, 2011, 07:38 AM
Julianna Julianna is offline
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Join Date: Feb 2010
Location: Victoria, Australia
Posts: 184
Hey, I am sure I have spoken to you before. I'm sorry I can't remember your name. Please excuse my ignorance. You are in Qld.

Thanks heaps for the encouragement. I am sure when the time comes all will work out. Just hope my head can find another perspective. I really appreciate you listening to me. I've talked to some of my family and some friends, and sometimes don't feel like they really LISTEN to how I'm feeling. But I guess we are all only human. I guess because I'm doing so much better out of hospital they think it's all over. And I'm sick of trying to explain my agony of the uncertainty of the disease.

Anyway, I will stop now. Thanks so much for being there. Never felt so lonely as I do at the moment. But your replies help. Jules xo
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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  #7  
Old Tue May 10, 2011, 01:33 AM
mscrzy1 mscrzy1 is offline
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Join Date: Jan 2011
Location: California
Posts: 103
Julianna!

You are definitely worth the donor's offering of his/her bone marrow!!! You are a strong woman!! Just look at what you've already been through!! You can and WILL make it through this, too!! AA and MDS can be so hard because we don't always look sick. It's easy for family members to think that we're feeling better than we really are due to that. And, strangers! Well, they have absolutely NO idea how sick we are just by glimpsing at us. It can be a blessing, and it can be a curse. But, I can tell you, being a mom myself, that your mom does not in ANY way find you to be a burden. She loves you and would walk through fire for you. Chin up, girlie!!! God will pull you through it. You are NEVER alone with God by your side. (((HUGS)))
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Angie

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil
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