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Hi everyone,
My husband and I on day 4 of diagnosis of MDS and I just wanted to speak to all relatives how they coped in the early days. It's just really hectic and I'm struggling to get my head around it all anyway but the constant phone calls ( which is understandable) as well as all the prep for a BMT as well as looking after with my husband who is poorly, is quite demanding and although we are only in the very early stages, and I'm struggling on about 4 hours sleep a night. I obviously don't mind looking after my husband and I know it's natural for everyone to know everything, but I just wondered how everyone coped.
Thanks lindsaylou x

Best Answer

  • Accepted Answer

    I'm very sorry to hear about the MDS diagnosis, I was diagnosed with AML and to this very day I can remember the diagnosis which filled me with questions, panic, fears of procedures and then having to deal with everyone who was worried about me.

    Like Greg and Becky, I was a patient so it's hard for me to give a relatives perspective. As a patient, whilst I found great support from Friends and Family, I did find their need to be updated very trying emotionally. I set up a blog page and used Facebook to keep people posted, I also asked people to give me a little space and informed them that I'd tell them as and when things developed. It's an incredibly stressful time and everyone's need to know what is happening can be very stressful. I found giving family and friends things to do for me helped, they felt useful and part what I was going through. You might want to lean more yourself on family and friends, get them cooking up healthy meals, take in it turn to visit. etc.

    As your husbands primary source of support emotionally and physically I would recommend talking to him about what he wants / needs. I am very independent and for me it was essential to retain as much normality as possible and to feel in control of the situation. As much as your husband needs rest, you do too because it's a long and rollercoaster journey. Prior to consultant appointments come up with a list of questions you both have, take them in with you so you don't walk out and think 'I wanted to ask....'

    I think the most important message I can give you, it take one day at a time and believe that the two of you can get through this difficult time.

    We are all here to support you.

    Best Wishes



  • Hi Lindsaylou,
    I am the patient so I can’t really give you the relatives perspective, but I remember the first few weeks being a complete whirlwind. There might be shock, anxiety, grief, all sorts of emotions at play. I think it is important to look after yourself as your husband will need you to be well to support him. Can you get friends or family to help with chores? Could you set up a blog so you could update everyone in one go rather than contacting people individually? It might be worth exploring options to look after your own well being as well (eg, counselling). You’ll also need to carve out time for yourself. It may sound strange and selfish, but you’ll need that in the long run to keep yourself healthy.
    A BMT is a long process, so definitely putting some plans in place now is going to help because I can sense the pressure you are under already and it’s unlikely you’ll be able to keep that up for too much longer without making yourself poorly.
    Wishing you all the best,
  • Hi Lindsay
    I am also a patient but can understand the whirlwind that is preparing for a transplant, I agree with greg it is so important to make time and look after yourself too, whether you have close family or friends that can help with errands or do your shopping (an online shop is also a good idea and after transplant too)

    As greg said a blog can keep everyone updated or even a private Facebook group, if you explain that it is impossible to keep everyone updated by phone as you are just so busy preparing they will understand and even if it is just a quick blog entry or Facebook message it is a lot less time spent on the phone having long conversations.
    I set up a blog and a fb page and found people would look there for updates
    It is a long journey a notebook of lists and questions was always with us so you don't forget anything.
    I saw in your other post about taking a collage of photos this is a great idea, we did the same, although you will probably not have much room in the hospital you can take a couple of small nick nacks usually and also a blanket (fleece) for comfort as long as it is washed on a regular basis. your husband may not feel like it now but a cheap tablet i.e a kindle can also be helpful as you can use social media if you wish, read books and watch films and means it is there for you when you visit too
    Once you see your transplant team you will probably feel a bit better as you will have a plan of action so to speak and they will offer you help i.e counselling if you want it, sometimes it is easier to talk to someone you don't know
    Best wishes becky
  • Hi everyone, thank you for your so kind words and understanding, ive set up a private group on messagner on Facebook and it's really really helped, even managed half an hour at the gym today which helped a lot. You know, you are all great for helping me when you have all been through this before, I really, hand on my heart that you are all doing well and feeling better
    Lots of love to you all
    Lindsaylou xxxx
  • Lindsaylou

    Please don't hesitate to use the forum and ask any questions, we are here to help and hopefully make this difficult time a little less difficult or at the very least not such a lonely one.

    Rachel X
  • Hello Lindsaylou,

    Welcome to the forum. I have been trying to get round to answering your post for several days, but I have just returned to work, part time, one year after being diagnosed with AML and just over six months post transplant, so things have been a bit hectic (but that's for another post).

    I can sympathise with your trepidation about coping with the journey ahead as you both deal with your husband's condition. For some reason people sometimes tell me they admire the way I have dealt with the past year, but I always say the real hero is my partner. She had to cope with a busy job, the running of our house, two crazy dogs, and look after her elderly mother on top of visiting and taking care of me. By comparison I had the easy job.

    I think you will find that things may seem very hectic to begin with but after a while they will settle down into a rhythm. In the early days we certainly received lots and lots of telephone calls, visits, texts, emails and messages from friends, relatives, colleagues and ex-colleagues but these quickly tailed off until we were left with a small "hard core", if you like, who supported us throughout the rest of our journey, and indeed continue to do so.

    One thing I would particularly encourage you to do, is to ask people to phone or text ahead before visiting. He shouldn't feel obliged to receive visitors if he is feeling tired, poorly or just not in the mood. There were lots of occasions when I felt like this and being able to put people off for another day was a huge relief and without exception everyone was completely understanding.

    Anyway I do hope you will continue to keep us posted via this forum and I wish the very best to you both.

    Best wishes,

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