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Does anyone have a spouse who is having treatment and is also caring for a young family?

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FGinn Total Reaction Points: 0

Hi all

I'm really struggling and don't really know where to turn. My husband who is 29 was diagnosed with Acute Lymphoblastic Leukaemia in July 2016, just 10 weeks after our little girl was born in May.


He went through phase one and two chemotherapy and went into remission in Oct/Nov however they found he has some rare mutation cells which meant that he needed to have a bone marrow transplant. We took the decision that this is the route he should take and in Feb this year the transplant took place. It went well and had a few complications but he seemed to be recovering well. However, we received the devastating news a couple of weeks ago that it looks like he might have relapsed.


People say to me that I do incredibly well caring for my husband and our little girl who is just over one now. But it just feels so difficult not knowing what is going to happen next and I'm so scared for the future. Whenever he gets admitted into hospital our little girl is massively effected as she is so confused as to where Daddy is. It can be so emotionally draining sometimes because I feel like a single parent caring for a adult and a child. It's so hard seeing him so poorly sometimes as well because he was so fit and active.


I was wondering if there is anyone else in a similar situation to me? We have friends and family but it's hard as I feel so isolated sometimes as I know everyone has to carry on with there lives, it's just we are living with it everyday and my mind can never be free from it as the cancer is always in our thoughts.


Thanks everyone


Fiona

Comments

  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 57
    Hi Fiona

    I am the nurse specialist in the patient team, thank you for posting on the forum. I am sorry that you and you husband are going through such a difficult time, there are probably no words that could describe how you both feel at the moment. Its very brave for you to be so honest about how you feel, in my experience feeling emotionally drained and isolated is very normal for carers of transplant patients but its just not said enough. Loved ones often have the responsibility of caring for the patient, other family members, keeping friends informed and to try and maintain some sense of normality to everyone's lives. Its incredibly stressful, difficult and unfair because you are struggling too. Clearly you are doing an amazing job being a wife and a mum for people to comment on it, but maybe you need to ask your family and friends for some support. If you are putting on a brave face, people might not think to ask but that doesn't mean they don't want to. You could also ask for some psychological support from the transplant centre, they will have services in place or if not they can signpost you to local support. You could also speak to you GP or look at the Macmillan website, it will have local support groups that you can attend. Both practical and emotional support for you and your husband is essential at this difficult time, please don't forget you are as important has your husband and it is essential to look after yourself too.

    You can always give patient services a call if you want to talk, our number is 0303 303 0303.

    I am sure you will get lots of support on this forum, please keep in touch.

    BW
    Hayley
  • TonyHTonyH Total Reaction Points: 10
    Fiona

    Obviously everyone's experiences are so personal but my wife and I can really empathise with your situation. I was 38 and otherwise healthy and active when I was diagnosed with ALL in June 2015. My children at the time were 6 and 4. I had a bone marrow transplant towards the end of 2015.

    I've always said it's been so much harder on my wife than me. She had to look after the children and try and maintain some stability for them whilst looking after me and trying to cope emotionally herself with what was happening.

    She's never been one to ask for help but she found during the process that actually people really wanted to help, but didn't know how. I appreciate what you say about other people having their own lives but you really must ask for the help you need and I'm sure they will willingly give it. My wife's approach was to keep everyone informed of what was happening with me and to ask for very specific help. It's so hard though as she was torn between wanting to be with me in hospital and at home with the children. Plus when I was at home she carried the anxiety of me catching infections from the children.

    I know your daughter is still very young but there is a good Anthony Nolan publication available online called 'Lucy and the good soldiers' which is described as "a small person's guide to transplant". It was published after my transplant but we have gone through it with our children subsequently and it's really helped them. It is understandable how affected your daughter has been, ours are still affected by it, and that just adds to the emotional upset for you all.

    There were a couple of days over Christmas where we feared I had relapsed so we can begin to imagine what you are currently going through. I wish you all the best and hope for some positive news and that you get the support you need.

    Tony
  • Julialind123 Total Reaction Points: 1
    Hi Fiona,

    Not quite the same but the reverse to you, I was diagnosed with MDS while seven months pregnant with my second son which then turned into an acute myeloid leukaemia shortly after his birth. I've been hospitalised twice, once for seven weeks and then again during my second round of chemo for the AML and I have just started conditioning for the BMT (on day 3 today). My husband has been the primary carer with help from grandparents / uncles and aunts while I've been in the first two times but now with thanks to the generosity of family we have been fortunate enough to hire a nanny so he can continue to work while I'm in and grandparents can continue to support on weekends whilst I'm in hospital. It's been incredibly tough on both of us and a huge strain. Emotionally of course even worse, particularly as their mother having to hand over parenting duties is very difficult. Our babies are now 1 and a half and 5 months old. Whilst the baby doesn't really know what's going on my older son definitely notices a difference between mummy being around and FaceTime mummy as you can imagine. We have however found a few things help like story time at bedtime (with duplicate copies of his favourite book so my husband turns the pages while I read the book over FaceTime), regular FaceTime calls (during mealtimes easiest as they are a captive audience while in the high chair) and as many visits as possible! I can only empathise with your situation and send you lots of emotional support as we're going through it too every day. I wish you both all the best and hope your husband is ok.

    Julia
  • KW86 Total Reaction Points: 3
    My son was 5 when my husband was diagnosed with AML; after two failed rounds of chemotherapy and a bone marrow transplant in 2013, he is in remission. Things that helped my son: clear explanation of where daddy was (in hospital, ill, but working at getting better), regular visits (at lots of different times of day and night) to the hospital, doing 'normal' things at the hospital (so playing favourite games, going to the Friends cafe and having tea [assuming that your husband is allowed]), doing something fun on the way to the hospital (visiting a play area, going on the bus [buses are fun when you are small!]); being as clear as possible when explaining things; decorating the hospital room/bed to look a bit like home (my husband was allowed to use the same duvet cover that we had at home so it looked more colourful and more homely). We didn't use technology much, but some great suggestions from Julialind123 above and I would if we ended up going through it all again. Friends and relatives will want to help - try and think of something that they can do. They can visit in hospital, cook for you, perhaps look after your little one for an hour or so, garden for you (I really struggled with cutting our hedges until it dawned on me to just ask the chap next door if he would mind, and of course he was more than happy to help). Looking after myself was something that I struggled with more - there never seemed to be enough time and I'm not entirely sure that I wanted the space as I feared that I would just sit down and cry. In retrospect I wish that I had gone to a weekly exercise class. Be open about the situation. I used to send round an email to all and sundry every 3 or 4 months to let people know what was happening and continually ask people to either donate blood or join the Antony Nolan database. Fundraising by my colleagues gave them something to do; and my husband's workplace had a blood donor drive. If you are lucky enough to be near a Maggie's Centre I can heartily recommend them to you and to your husband. Good luck to you all.
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