My brother was recently diagnosed with Myelodysplastic syndrome (MDS) and is in hospital undergoing chemo. He had 1st solution and wash last Friday17th June…another on Sunday and his 3rd yesterday (21st) and was in good spirits but he is now in lots of pain and taking Oramorph and paracetamol…
He was diagnosed about 10 years ago as diabetic but it now seems it was Myelodysplastic syndrome (MDS) as he had low white cell count…which was low but rose a little each time he had his blood tested. It was only over the last 3 years that they’ve kept an eye on him for a different diagnosis and came back with Myelodysplastic syndrome (MDS)…as you can imagine its been devastating news for him and all the family.
I am hoping to see him today and take him some cannula sleeve covers and I’m not sure if I need to do other things before I go in.
Do I wear ppe…I will be wearing a ffp2 mask and taking hand sanitizer.
I had a covid test yesterday and was negative which is good. I feel there’s more I should do but don’t know what.
I will also be testing to see if I can be a marrow donor for him…
HI @dogwalker,
A very big welcome to our forum. I am very pleased you have found us , as this is such a brilliant space for peer to peer support.
I am am so very sorry to hear about your brothers diagnosis of Myelodysplastic syndrome (MDS). This must’ve have been quite a shock to you all and certainly a very worrying time. Please do know that should you or your family ever need to talk anything through, we offer free & confidential support line- Blood cancer information and support by phone and email | Blood Cancer UK.
May i ask how your brother is doing with his chemotherapy?
It is great you are able to visit him as I’m certain that will help break up his day and be a great source of support. It does sound like you have considered everything really carefully in his risk to covid and other infections, as you are likely very aware, he will during this point be more susceptible to infections & viruses. So often the most important thing is just what you have highlighted- masks, testing prior to visiting, hand hygiene & not visiting if you are feeling under the weather.
We understand how difficult it can be on the side lines as a relative goes through treatment but please do be kind to yourself. Often it’s the simple gestures of just being there, offering new well wishes from others, small talk and small items which may help him with his time as an inpatient.
Please do let us know if you would wish any information on his condition or indeed if we can help in any other way.
Take Care, Lauran
Hi @dogwalker22 a great big welcome to our forum, what a caring, thoughtful sister you are.
I always say that carers are the unsung heroes, you go through all the shock, fears, thoughts, emotions and consider all the practicalities.
It sounds as if your brother is being cared for so I would say please look after yourself and care for yourself, especially if there is a chance you might be a bone marrow donor.
Have you got supportive family and friends?
As a carer, and even a blood marrow donor, most people don’t ask how you are, but you now have us as support.
I look forward to hearing more about you and if you would like to talk to someone the Blood Cancer UK support line is there for you.
Hi,
Sorry to hear about your brother’s diagnosis. Ive recently been diagnosed with Myelodysplastic syndrome (MDS) and waiting for a bone marrow transplant, luckily my brother is a match and I’m keeping everything crossed that you will be for your brother.
I do hope that you are able to get support as I know how upsetting and difficult it can be for family and friends of those who have been diagnosed. Thinking of you both. xx
Thank you all for your kind words and support, you make me feel very welcome 
My brother who is in hospital is tired and in pain… he’s not one for letting pain get the better of him so I know he’s struggling if he complains, he’s lost a lot of weight too and finding it hard to eat…I wish I could do more for him…
I am waiting on a call to go in to have blood taken to see if I’m able to donate bone marrow for my brother.
Getting a call Monday some time, I was hoping to be able to text as I’m deaf/hoh and find using a phone difficult but was told its quite a lengthy amount of information to go through. I just hope I’m able to take it all in and not get frustrated because its difficult to hear.
One of my brothers (I have 3 brothers 1 poorly 2 who could be donors) has already been for blood test so there’s hope one of us will be compatible…
Oh @dogwalker22 I can tell you are a wonderful, loving, caring support for your brother and perhaps that is all you can be and that is priceless.
The important thing is that your brother keeps his medical team aware of how he is feeling and doing.
I hope you get your phone call, but it must be so, so frustrating being deaf/hoh, I cannot imagine the stress you go through. If the caller knows your challenges it is fine to keep on asking them to repeat things till you really understand. Alternatively ask for the information/questions in a written form.
Your brother who has already been for the blood test might be able to help you as well.
Yes, let’s hope that one of you will be compatible, fingers and toes crossed for you here so please let us know how you get on so as I can uncross them !!
Be kind to yourself
Hi all…hope everyone is well and coping with life’s ups and downs.
I am going for blood tests for compatibility for my brother this afternoon 
so glad it seems to be moving now, fingers crossed 
I can help him.
Hi @dogwalker22 my fingers and toes are still tightly crossed for and we await finding out how it goes.
It’s scary for you too, so really look after yourself too. xx
Just had my results back. My other 2 brothers are a Half Match and I’m a No Match… I’m gutted I can’t help him. A very sad day.
He now has to wait on the Anthony Nolan register for a match to come up.
Oh @dogwalker22 you must feel so gutted and sad however if anyone can find a donor match the Anthony Nolan register can.
You did your best and that is all you can do.
Look after yourself
Hi @dogwalker22, I’m so very sorry to hear this news. It’s very understandable for you to be feeling disappointed as I can appreciate you were keen to help your brother. No doubt you are supporting him in other ways and are doing your best to be there for him, but I appreciate this must come as upsetting news for you. I know this has been mentioned already, but just to re-iterate that we are here for you if there’s anything we can do to support you- please don’t hesitate to give us a call if you’d like to speak to someone (0808 2080 888). Best wishes, Tanya.
Hi @dogwalker22 it sounds like you are doing everything you can do to support your brother when he needs you. He’s got some tough challenges ahead as has anyone with a blood cancer. I hope they are able to find a match for him as it must be very stressful waiting for that to happen. Keep us up to date with how things go for you all.
I am very sorry to have to say that my brother passed away on the 1st of December.
Still can’t believe he has gone.
Thank you all for you kind words and help.
Sorry for your loss
Will keep you in my thoughts
Oh @dogwalker22 I am so sorry to hear that your brother has passed away, you must be devastated.
This time must be so difficult for you.
Please be kind to yourself and this forum is always here for you.
@dogwalker22 I am so very sorry to hear of the loss of your brother. Do you mind me asking how you’re coping at the moment and if you have much support around you? If there is anything we can do to support you, please don’t hesitate to get in touch with us.