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Someone just to keep me going

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Lindsaylou Total Reaction Points: 0
Hi, I'm lindsaylou and my husband is at the moment going through intensive chemotherapy and after we have found a donar, then a bone marrow transplant. I'm doing ok and he is but I don't know about other partners, but it's all so very lonely. I have friends and family but they really don't know what you are going through. Did anyone else feel this way, I miss my husband so much and I'm scared what the future will bring. He was very poorly, with his first lot of chemotherapy, so don't know how he will fare now. Sorry to sound so negative
Lindsaylou

Answers

  • HS17 Total Reaction Points: 7
    Fear and worry are massive concerns for patients and relatives alike . The doctors prepare us for the treatment and there is support available to help us work things through but we can never really be prepared for the amount of stress we will go through due to fear and worry. At times I've been scared to make plans for the future such as a holiday in case something went wrong. I'm almost 10 months post transplant and can say that I have learnt to deal with my fears and put them to the back of my mind. They are still there and resurface occasionally particularly if I hear bad news but they don't take over my life any more thank goodness.
  • janeoxford Total Reaction Points: 4
    Hi LindsayLou, I am in exactly the same position as you, in fact I could have written what you have posted. I agree with everything you say. What I have come to realise is that it's only natural to be frightened and lonely, so please don't worry that you are in any way reacting abnormally. It's a very long road and I think all we can do is take each day at a time and do everything that we can to make the whole process as easy as possible for ourselves.
  • janeoxford Total Reaction Points: 4
    P.S. LindsayLou, I've sent a message, please check your inbox.
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 297
    Hi Lindsaylou, I think like others have said it does feel very lonely place when you or a loved one is going through a transplant. The only contact you have is with the medical team who don't necessarily deal with the emotional side of the transplant, and with friends and relatives who don't really understand what you are going through.

    In the early days of my treatment it wasn't so bad as I was on a ward with other patients going through chemotherapy, so you could at least talk to others who felt the same as you. But once you get into isolation and beyond that contact goes and you do feel quite alone.

    A transplant is a massive thing to go through and nothing you can do can prepare you for it. We all go into it not knowing what to expect and probably underestimating what we will go through and how hard it will be on patients and relatives alike.

    Hopefully this forum goes some way towards helping as you can at least share your thoughts with people who understand how you feel.

    Do you have access to a clinical nurse specialist who you can talk to and perhaps ask for some support? We will always be here to support you however we can (though it maybe feels a bit impersonal), and you can always call the guys at Anthony Nolan to chat through things?

    Best wishes,

    Steve
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 80
    Hi Linsaylou

    Thanks for posting and being so honest about how you feel. It is very normal to feel the way you do, its a scary and daunting time for you and your husband. When I have spoken to patients and families about this they often say that the best support is from their peers, someone who has been through it and understand the challenges that you face. The posts so far prove that and of course you are also welcome to call us in patient services. You could also discuss it with your husbands team as they might have support available for you there or know of local support.
    Having a transplant affects everyone close to the patient and if you feel you need someone to talk to then you should definitely ask.

    Keep in touch
    Hayley
  • Lindsaylou Total Reaction Points: 0
    Janeoxford
    Can you please message me, I have lost your e mail address thanks
  • Lindsaylou Total Reaction Points: 0
    Jane oxford, could you message me again, lost my e-mails again! Just wanted to know how your both going on
    Love lindsaylou
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