My 92 year old mum was diagnosed with Myelodysplastic syndrome (MDS) in November which was confirmed by a bone marrow biopsy. The consultant gave a prognosis of 3-6 months with no treatment unless she got breathless and then she could have a blood transfusion.
We’re now 3 months post diagnosis and her condition doesn’t seem any worse than it was in November. Mum doesn’t have another blood test / consultant appointment until April.
My mum lives with me and I’m a full time carer for her. She doesn’t seem to need any additional support at the moment but I’m scared as I don’t know what the future looks like or what support is available when things progress.
Is it normal to have a diagnosis like this and then not to have any follow up from any support services? My mum is in complete denial about her diagnosis and just says she’s got “old age”. I did contact social services for help but mum told them she was fine and didn’t need any help.
I think I’m more scared than she is.
Oh @Rachel3 I did feel for you reading your post, you obviously care so much for your mum and are her full time carer. I am so glad that you have found our forum and posted.
Perhaps you might ask your mum’s nurse or medical team.
I wonder if in your local hospitals you have a Macmillan Centre or Maggies Centre or equivalent or a Carers group where you can find what services are available.
Another thought is your local hospice.
Attached is a link to the Carers Trust
Carers Trust | Transforming the lives of carers
Perhaps you might like some help too, being a carer is being an unsung hero in my book,
so please do look after yourself as well as you do your mum and please do keep posting how you are doing.
Thank you @Erica I will explore those options.
Hi @Rachel3.
@Erica has given a great response and I to was wondering if local support services could offer support for your mum but also yourself.
She is lucky to have you around. It’s tough if she doesn’t really acknowledge the diagnosis to know where to go with that.
Active monitoring with planned blood tests is often the same for a lot of the forum members but does cause anxiety because you feel like something should be happening.
You could always give the support line a ring for advice.
Please keep us updated on how you are both doing.
Take care x
Thank you @Nichola75. I will give them a call on Monday and report back
Hi @Rachel3,
Thank you for posting here on the forum. I am sorry to hear that your mum has been diagnosed with Myelodysplastic syndrome (MDS). It is understandable that you have many questions and you are scared about the future.
It is good to hear that your mum is not feeling any worse since November and does not need any additional support at the moment. The way Myelodysplastic syndrome (MDS) progresses can alter from person to person and follow up blood tests and appointment may vary.
@Erica and @Nichola75 have already given you some great advice about support that may be available for both of you. You may find it useful to read through our webpage here - Looking after yourself when someone you love has blood cancer | Blood Cancer UK. It talks about looking after our mental health and ways of accessing emotional and psychological support. I have also included a link here to our information for carers which you may found helpful Blood Cancer UK Practical Support for Carers.
I would also encourage you to reach out to your mums Clinical Nurse Specialist if she has one and discuss your concerns with them. You do not have to wait until her appointment in April to do this. They might suggest referring your mum to the community palliative care team who can provide emotional and practical support for both of you. I have enclosed some information here from our colleagues at Macmillan regarding this Macmillan Palliative Care information
Take care @Rachel3 and please let us know how you get on.
Fiona (support services nurse)