Mds

Hello , I’m sorry to hear about your Mums diagnosis and her current stay in hospital, I’m sure you must be very worried about her. I wasn’t sure what MDS was I’m afraid so I used google to find the definition on the NHS web site. I’ve put the link below incase its useful.

https://www.nhs.uk/conditions/myelodysplasia/

You were asking if anyone had been through anything similar who could help or share experiences, I have had my cancer treatment delayed in the past because of a side effect but I am not sure from your explanation if that’s what is going on, I’m not a medic just a cancer patient. I wanted to welcome you to the site and help with where best to direct you for some help. 

For others who have the uncertainty that you feel and how they cope with that you may want to join the Family and friends - Discussion Forum (just touch the link I’ve put in and it will take you there). For info about your mother’s cancer type and experiences I am thinking you may want to put a question in Ask a Nurse for one of the professionals to reply or the Macmillan support line on 0808 808 0000 which is open from 8am to 8pm. 

To best direct you to the right cancer group I’m tagging in a volunteer on here called Thehighlander as he belongs to the General Discussion which is my best guess for the help you need. 

I think sometimes we hate to be in hospital but recognise that sometimes that’s the best place for us to stand the best chance of getting things sorted.

Best wishes

Thank you so much for your reply. 

Things are so up and down it's an emotional  roller coaster.

Thank you for the links I will have a look at them. 

Hi Leisa  and sorry to hear about your mum.

I help out around our blood cancer groups but as MDS is rather rare we don’t have a specific group for this type but we have a number of folks come on and post from time to time in various blood cancer groups with MDS.

Some of the treatments used are similar to those used for Leukaemia and even Stem Cell Transplant can be used and we do have a few folks with MDS posting in our Stem cell transplant group.

I am happy to talk more on this discussion until we get to know more about what exact treatments she is having.

What you can do is put MDS into the arch tool near the top and have a look at the past posts and if you want you can go in and hit reply and ask some questions.

Keep posting as we are around to help as best as we can ((hugs))

Mike

Thanks Mike.

Mum has had 2 hospital stays since diagnosis on Christmas eve 2019.

She started chemo injections (can't remember the name only it begins with A) this had to stop on round 5 as she got another chest infection and pancreatitis and was in hospital for 6 weeks. With covid we were not allowed to see her.

Last week after her bone marrow biopsy leukemia cells were discovered and her platelets were low so started chemo again but on the second one was again admitted to hospital with an infection.

She has now been n in hospital for 3 weeks. Unfortunately she has had to have 4 platlete transfusions and 2 blood transfusions in 8 days.

I spoke to consultant today and she was amazing. They are still trying to get mum home even if just for a couple of days. 

My dad is struggling emotionally and Im going to spend a few nights with him 

The consultant said she will be very surprised that mum will be with us for Christmas  The amount of transfusions she is having is quite worrying. 

The uncertainty is making me an emotional wreck but trying g to be strong for my children. 

Because of covid we can't go and see her and Dad when he takes things in waves from the carpark to her Totally heartbreaking 

Hi again but so sorry to hear how things are developing and the stress that you are all having to deal with.

Blood cancers like MDS once they become aggressive can have a significant effect on how the bone marrow produces platelets etc so the transfusions will be essential.

This is all very hard and as I have not been on this part of the journey you may find it helpful to talk others in our Carers only, Family and friends and Supporting someone with incurable cancer groups as you will connect with others supporting family through their difficult cancer journey.

It’s always good to talk, so can I also highlight the Macmillan Support Line on 0808 808 00 00 This service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00

Always around to talk and support as best as I can.

Mike ((hugs)) xx