Recurrent MDS

Please post here your experiences of MDS as a patient, carer, family or friend

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joshua

Recurrent MDS

Post by joshua » 09 Nov 2013 12:24

Dear all,

I am Joshua. My dad's really tired these days. He sleeps a lot and he doesn't talked much and so i don't talked to him much. He was diagnosed with MDS sub type RAEB? some 5 years ago and was treated successfully with about 7 cycles of Decitabine.

He has been feeling weak and tired all the time for the past few months. He has had a bone marrow biopsy about a month ago. His recent Hb count was about 7. I assumed he didn't want to go to the hospital for another round of blood transfusion. He has had three rounds of blood transfusions for the past few weeks. As i mentioned he doesn't talked much. His daily routine these days has been sleeping, eating, watching tv and sleeping again.

He coughed a lot and two days ago, he has woken up with swollen lower eyelid. His doctor gave him medication to apply on it. My relationships with him hasn't been great because we don't share our feelings. I would easily became irritated and would raise my voice when we couldn't agree on a matter. That made our relationships worse. I wanted to care for him but at the same time i didn't have the courage to share with him my feelings.

On my part, i have Anxiety Disorder with Depression. I am on medication for that and i have learned to share my feelings and problems with my mom. She's very supportive of me. Earlier on this year, i failed in a major exam and i was expelled from university. I am unsure of what to pursue next, but i believe soon i would know what to do.

Back to my dad, since his recent hospitalisations, he has stopped working. He has been taking in a lot of supplements and medications. My mom has been his carer and i would try to help my mom with her daily chores. She's stressed too. She complained that dad doesn't talked much. My elder bothers would occasionally call him up and chat with him.

Finally, we are hoping for the bone marrow biopsy result to be made known to us soon. Honestly, i don't know what my dad is feeling or thinking. I wouldn't be able to know his feelings because i am not him.

I welcome any advice.



Regards,
Joshua

p/s: My dad's about 57 years old this year.
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Re: Recurrent MDS

Post by sophie » 10 Nov 2013 21:25

Dear Joshua,
sorry to hear about a situation that sounds really taxing for all members of the family.
There are several issues to deal with, which we will help with.
To start, you and us (so we can help you better) need to have a better understanding of what's happening treatment wise.
And we can help to explain to the whole family why your Dad may be feeling the way he does - why his low Hb will cause the need to sleep and him feeling so fatigued.
We can help to make sure that your family has access to the right benefits, care and support.
This may involve calling Macmillan Benefits Helpline, or contacting the relevant Nurse specialist or possibly a counsellor sometimes.

Please email me on mds-uk@mds-foundation.org with your telephone number.
I will call you to have a chat.
We will assess the situation and make some practical recommendations and suggestions.

This forum is great to receive emotional support from fellow MDS members, but it is really important the patients receive the right support from existing clinical sources and organisations.
We will help you to get there - just contact me in the next few days please.

Also well done to you to reach out, despite your own worries and situation.
You have done the right thing for your family to start receiving further help.

Thanks Joshua - look forward to hear from you very soon.
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
lynn1963

Re: Recurrent MDS

Post by lynn1963 » 10 Nov 2013 23:54

Hello Joshua, I also have MDS and I can honestly say from a patients point of view that I think your dad must really feel very Lethargic and Fatigued with a HB of 7. I have also been guilty of not talking to people when I feel like this as doing the most simplest of things can sometimes feel like a major effort even talking! I have a son of 21 also called Joshua who is at Uni and to be honest i try to avoid talking of my illness to him so not to worry him, could it be the same with your dad? I really hope you can resolve these issues very soon :D
joshua

Re: Recurrent MDS

Post by joshua » 11 Nov 2013 04:15

Dear lynn1963,

Yes, i would say that's what he is trying to do. I think he does not want me and the rest of my family to worry about him. And thank you for telling me that talking would be a major effort for a patient like my dad. That increased my understanding about my dad's condition and how it affects him. My mom would ask him lots of questions about his visit to the Clinic but he wouldn't say a word. So, my mom mentioned that my dad was disrespectful of which i agreed. My mom always complained that dad doesn't talked and expressed his feelings. His reply would only be of few words such as, "i'm ok" and "no, i am alright". My mom also said that my dad is being manly. Perhaps, i should be the one who needs to be manly and to be more expressive.


Regards,
Joshua
chris
Posts: 628
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Recurrent MDS

Post by chris » 11 Nov 2013 19:04

Dear Joshua

You have a lot to carry on your young shoulders at the moment - not only your dad's illness and how he is dealing with it - but also your own personal difficulties around your future working life and career and your mental health situation. I hope you can access some support outside the family to help you explore how your dad's illness is affecting you. It's good that your Mum is supporting you but she probably isn't in the best place herself at the moment, given her concerns about your Dad.

If your dad has never been forthcoming with his thoughts and emotions, it is unlikely to start sharing them at a time when he may be feeling totally exhausted and possibly wanting to protect you from difficult news. You can only open the door to communication and say to your Dad that you are comfortable with hearing about how his illness is affecting and ask if there is anything you can do to help him? If he still doesn't want to you know, you will have done your best and can concentrate on supporting your Mum with practical things as you are already doing.

Are you in the UK? I ask because your refer to your "mom" and your Dad is on Decitabine which is not usually used in the UK? So I wondered if medical costs were also an issue? If you are not in the UK, Sophie can put you in touch with other MDS Support groups?

Hope you can get the support you need.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
joshua

Re: Recurrent MDS

Post by joshua » 13 Nov 2013 05:33

Dear Christina,

I appreciate all that you mentioned. No, my family and i are Malaysians, residing in Malaysia. My dad has just returned home yesterday afternoon. He met with a hematologist who requested another blood test to further investigate his health condition. I wasn't there so i couldn't know more about it. I would accompany my dad to the clinic Friday morning to find out more.

On the other hand, there are unofficial results of his bone marrow aspiration and trephine tests. We were relieved to know about the results, for we have been very frustrated of waiting for the results to be released. Apparently, there was backlog of works for the pathologists in Sarawak. So, we were told that he has recurrent MDS without any subtype given. Further blood test was needed as mentioned above. My siblings are concerned and we educated ourselves by finding more information about the disease.

Sophie had contacted me and she mentioned that she would link me to other MDS support groups.
Yes, money is an issue for our family. Currently, we pay minimal amounts for my dad's treatment in a government hospital. The drawback for the service is its inadequate medical specialists especially hematologists. Private services would cost a lot and my dad is reluctant to spend his savings on them. I have three elder brothers who are working adults and one younger sister who is in university.I guess i am the most 'worrisome' child for my parents. :|


Regards,
Joshua

Dad, age 57, recurrent MDS?, based in Malaysia
chris
Posts: 628
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Recurrent MDS

Post by chris » 13 Nov 2013 16:22

Dear Joshua

I hope you are able to get more information on Friday and glad that you have been in touch with Sophie. Recurrent MDS is a strange term as, once you have it, as I understand it, it never goes away so, yes, it is always recurrent!!! Basically, they seem to be saying that your Dad still has it! What he/you really need to ask the haematologist on Friday is about the sub-type of MDS, his risk of it progressing to leukaemia and whether he has any chromosome abnormalities which are also used to determine the severity of his particular sub-type. You surely should not have to pay privately to be given this information?! Maybe your Dad does not ask questions when he sees the doctor? Some people really do not want to know so we have to respect that - hard though that is.

Even though you say you think you are the "worrisome" child, here you are taking a lot of time and trouble to find out about your Dad's illness and how you can be of help. I hope you will soon be able to see a way out of your current career difficulties and anxieties.

Take care

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
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