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Pre -treatment

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Lindsaylou Total Reaction Points: 0
Hi I'm lindsay, my husband is Darrell and he had aplastic anemia twice but unfortunately this time it's developed into MDS, which is bone marrow cancer, and we were told on Wednesday he desperately needs a bone marrow transplant or he will only have 1-2 years to live. I have a hundred questions but the main one is can anyone tell me how you cope to see your loved one so sick and what will happen now? We are being referred to the transplant team, his brother was a match in 2005 but all his siblings have to be re -tested because it was so long ago. I'm just about coping with keeping busy and could anyone tell me if he would be allowed a collage of photos when in isolation. This is keeping me going, gathering loads of photos of good times, family and friends and I was going to stick all these on a big board as I thought it would give him something to look at and hope get better for. I know this journey will be hard. My thoughts are with everyone else going through this tough time
Best wishes
Love lindsaylou xxxxx

Best Answers

  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 291
    Answer ✓
    Hi Lindsaylou, welcome to the forum, though I’m sorry to hear of your hubbys diagnosis. I’m one of the online community champions and had a transplant myself for ALL five years ago.

    It’s a great idea to have some family photos in the room while he’s in isolation, I know I did and it helped me remember what I was fighting for. He won’t be in total isolation and will be allowed visitors but I’d suggest you keep it to a minimum and immediate family rather than lots of different people as his immune system will be low and he’ll be at risk of infection.

    Most hospitals have WiFi these days, possibly at a small cost, but it’s a great way to keep in touch with friends and family through social media or things like Skype, and allows people to keep in touch, find out how he is and support him without seeing him in person.

    I wrote a blog whilst I was in hospital too, which I shared to friends and family. It allowed me to keep them updated without communicating directly with them all, but it also kept me busy for an hour or so each day.

    There will be lots of questions as he goes through the process and his medical team will help with the technical ones, but as ex or current patients we can help give support too as we know how he will be feeling, so please post away with your questions and keep in touch. You need the support just as much as Darrell and we have other family members here watching their loved ones go through the same as you.

    All the best,

    Steve
  • nick63 Total Reaction Points: 5
    Answer ✓
    Hello Lindsaylou, and welcome to the forum.

    I am so sorry to read of the pain and anguish you and your husband are going through. Hopefully joining this online community will help in some way, we are always here to share our experiences and offer advise and support.

    I think making a photographic collage for your husband's room is an excellent idea and I see no reason why this would be a problem. My partner did the same for me last year when I was in hospital for five months prior to my bone marrow transplant and missing our dogs terribly. She printed off some photos of the mutts and stuck them up around my room which brightened up the place no end.

    I wish you both the very best of luck, and as I said do continue to visit this forum as I am sure you will it helpful over the coming months.

    best wishes,
    Nick.

Answers

  • Lindsaylou Total Reaction Points: 0
    Thank you Steve, that's very kind of you, glad I can have a project on the go now to keep me busy
  • Lindsaylou Total Reaction Points: 0
    Thanks nick, it gives me something to do and reminds me of happier times
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 80
    Hi Lindsay

    Thanks for posting, I am the lead nurse in patient services. I am sorry that your husband needs a transplant. It can be quite overwhelming when you are told that you or your loved one needs a transplant and it can be easy to want to find out everything all at once. Its a lot of information and really there are stages to the transplant and to the recovery. So my advice would be to take it one stage at a time. You will have an opportunity to ask your questions with your husbands consultant when he consents for the transplant so maybe start to write them down now. There will also be pre-transplant planning which your transplant coordinator will be able to talk you through what to expect. You might find our podcast on pre-transplant preparation useful https://www.anthonynolan.org/patients-and-families/get-support-us/listen-our-podcasts as well as the seven steps which you can download https://bloodwise.org.uk/sites/default/files/documents/stem_cell_and_bone_marrow_transplants_the_seven_steps.pdf

    Its really important that you are supported as much as your husband so make sure you talk to family and friends. Most of the time people feel a bit helpless so when they offer to help they really mean it and they are pleased to be able to support you. It's not always easy so try to not be worried about accepting help and remember you are doing a great job.

    In answer to your questions it would be completely fine to take a collage of photo's in to hospital with him and a lot of patients do, so starting to think about that is a great idea.

    I would be happy to talk to you if you have any questions and you are welcome to contact me anytime on 0207 284 8229

    Please keep us updated on his progress.

    BW
    Hayley
  • TonyHTonyH Total Reaction Points: 14
    In terms of photos rather than put them on a board I had loads of photos in something like this:

    https://www.amazon.co.uk/Picture-Pocket-502296312040-Pockets/dp/B01EWV5ZUW/ref=sr_1_18?ie=UTF8&qid=1520426649&sr=8-18&keywords=photo+wall&th=1

    It was easy to fold up and light to move and I hung it up in whichever room I was in.

    My experience was always that they were very supportive of making the room more homely.

    Best wishes for the future.

    Tony

  • Meerkat Total Reaction Points: 7
    Hello Lindsay. Forgive me for putting my two-penny worth in....... I decided almost at diagnosis that I didn’t want get well cards from people. Instead I asked friends and family to send me postcards of trips out, holidays etc. These built up very quickly and I really felt people were thinking of me a lot, which was both comforting and encouraging. They also made a great display and were a great talking point. And It meant I got lots of post too, which always made me feel better. My sister contacted all my friends and family members and asked them to send her copies of favourite photos of past holiday snaps etc that Included me. With the help of Bonusprint (or similar) she created a large poster with them, and this arrived on the ward on the day of my transplant. Another friend sent me a map of my donor’s country (Portugal), and another made lots of buntings which also went up on the day of my transplant. I think you will find friends will be only too happy to help and support you. Accept their help but do look after yourself too.
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