I am new here (well sort of)
I have been lurking in the background for a while trying to find information and relating to lots of you all, i look after my mum, she is low risk Myelodysplastic syndrome (MDS) diagnosed 2 and a half years ago but we suspect she has been living with Myelodysplastic syndrome (MDS) alot longer having had sideroblastic anaemia for years and being her own Dr! And never actually going to her own Dr and battling on! So here we are transfusion dependent every 2 weeks hbc around 78 palliative care, we were given a life expectancy of 2-5 years, she is 81 she is amazing and i love her to bits, and as her daughter and her carer I suppose i am here to try and find out and be prepared and it breaks my heart to ask the question, what will actually happen at the end? Can anyone help me as I can’t actually find any information?
Thank you x
Hi @Lucy1 a warm welcome to the forum.
There will be lot of messages of support from others in similar situations who will provide great support and advice I’m sure.
In the meantime both of these organisations offer amazing support that can help for palliative care.
Marie Curie(We’re here to support you | Marie Curie)
Macmillan Cancer Support (https://www.macmillan.org.uk/cancer-information-and-support/treatment/if-you-have-an-advanced-cancer/end-of-life)
And of course don’t forget the support services of Bloodcancer Uk Blood cancer information and support by phone and email | Blood Cancer UK
Take care and sending warm wishes to your mum.
Welcome to the forum and thank you for honest post about your Mum. It sounds like you are a wonderful support to her and I understand that you would like to be as prepared as possible. @Jules has sent you some great resources and I would echo that you are most welcome to call us to talk things through. Does you Mum have a Clinical Nurse Specialist you can talk to at this time? Often this can help with managing symptoms and planning ahead.
Thank you for your replies, i am so grateful, i had read the macmillan info etc, and various blood cancer charities on the internet, its hard as i know everyone’s experience with this type of illness is different. Mum had a brief spell in hospital back in March 22 with a chest infection for 2 weeks which we were told she would be prone to she was also found to have heart failure, its very hard as she is coping very well at the moment she is very stoic and tends to bury her head in the sand when it comes to her health we live week to week on blood test results, her consultant speaks to her once a month by phone, she basically can get up and dressed and sits on the sofa all day and thats it no energy, she eats very little, but she never complains, and i find myself looking at her swollen feet and ankles thinking, what will happen next? Its awful, i’m so sorry to be a dolly downer but i feel so helpless for her
Hi, thank you for your reply no she hasn’t got one only a consultant she speaks to once a month by phone but basically she just says yes i’m ok and never asks any questions! She’s scared she’ll say something she doesn’t want to hear i think
Hi @Lucy1, it may be worth asking your Mum consent to ask the team some questions next time they call? I would expect that she should have access to a Nurse Specialist but perhaps, as she is being stoic, that they are not in contact? I am sure there is more support that could be accessed for her and you. Often there is local support and if you would like to message me directly we could look into this? Often Maggie’s – everyone’s home of cancer care (maggies.org) have local services which you can search for online.
We could also schedule a call with you if that would be helpful? Just email us on firstname.lastname@example.org
@Lucy1 thanks so much for having the courage to write such an honest post.
You are obviously such a brilliant carer.
@GemmaBloodCancerUK and @Jules have given you great advice that I will not repeat.
You ask a million dollar question that perhaps so many people would like the answer to. Your mum’s medical team might be best placed for that one.
Your GP or palliative care support might help with ideas for chair bound exercises that you could do together, I find music helps make it fun…
I am also concerned about you, being a carer is a really hard role, who asks about the carer?
Please look after yourself as well as you look after your mum.
Take care and be ever so kind to yourselves.
Please keep posting, we are here for you both
Your Mum is very lucky to have you around. I was diagnosed with Myelodysplastic syndrome (MDS)/MPN overlap at the end of 2020, although I think that I had it a lot longer. Like your Mam, I was in hospital in June 2022 with pneumonia. The lack of oxygen left me with heart failure also. I am very lucky with face to face appointments with my haematologist , excellent clinical nurse on the end of the phone and a wonderful GP. I am on water pills and sit with my legs up whenever possible and try to keep moving my legs when just sitting My water pills have just been increased and my legs are much less swollen now. I am 79 and live on my own. My two daughters each live 200 miles away, but ring me most days and come up to see me when they can. I have been looking at adverts for circulation boosters, but am not sure if they would be useful. I hope that your Mam will get the help that she needs. Keep in touch. Kate S x
Thank you for your reply, its so nice to hear from you it feels so isolating at times you almost feel you’re the only ones going through it all! She is also on water tablets and she does her little walks up and down the lounge she was such an energetic lady upto a few years ago you couldn’t make her sit still! Her gp is useless i’m afraid where we live if you’re over 80 then you’re just a statistic (i speak from job experience) we get through each day making sure shes happy which she is and at the moment pain free so thats all we can wish for x
@Lucy1 it sounds as if you are such a caring carer for your mum, but as you say it is such an isolated role.
Happiness and pain free sounds a good aim to me and making exercise and things fun.
Please keep posting it sounds as if you are doing a brilliant job, but please look after yourself as well. x
Hi Lucy. Your Mum sounds amazing! Mine is 94 and had trouble with swollen legs and feet for years. So much so that they felt so heavy and made it difficult to walk. She doesn’t have any heart problems but was prescribed diuretics (water tablets!) of differing strengths over and over again by GPS with no improvement. Then, last year, she broke her hip and several weeks in bed in hospital made the swelling even worse. We persuaded her to get one of these “magic” electric chairs which can help keep your feet elevated higher than your hip (this is really important -not just a normal footstool!). After just a few days of ensuring that she spent several sessions each day with feet elevated, her ankles and legs became amazingly slim and her walking as a consequence is so much better!! It’s because as people age the valves in the veins don’t work as well to stop the fluid from pooling in the lower limbs and feet. In my view, getting that chair was a revelation!! Mum loves it!!
As to your question about how the disease will progress, that is a bit of an unknown with Myelodysplastic syndrome (MDS) but the important thing is to ensure that she gets her transfusions at the correct frequency and dosage to maintain a decent quality of life and this is something to discuss with your Mum’s clinician if she will consent to letting you do this?
Hope this helps
There are some great hints and tips here on being active:
I find yoga really helps me , bit of all rounder can be super easy or very difficult. Chair yoga is great.Any little movement can really help improve physical and mental well being.
This lady on you tube has tonnes of videos for all different abilities, areas of your body , for targeting specific things etc
Has been my daily go to since my diagnosis five years ago. The difference between what I can do now to when I started yoga is massive.
This video for example is aimed at healthy blood flow.
Love to hear how you get on.
Hi @Lucy1 just checking in to see how you are both doing, look after yourselves.
Hi thank you!
Yes we’re fine, mum had to have 2 bags of blood last week she hasn’t had 2 for a little while but she seems to be coping ok at the moment