Feeling lost

I haven’t written for a while….largely because I have been really chocca trying to get on with things. But the last week or so have been really tough and I’m really feeling lost and don’t really know why or how to cope with it all.

I don’t seem as able to cope with things since the summer and I find that all so frustrating. When I first got told it was time to start treatment, it was on the basis that my life would go back to ‘normal’ afterwards, but that just hasn’t happened. To everyone around me, things are fine again, life is hunky dorey, and I should be happy…..but I just don’t feel quite like that. I go through phases where I can cope….and then bang, it all seems to come tumbling down. And not always for any good reason. Recently, just trying to redo our bedroom has all seemed far too much. In the past I’d have thrived on this, but this time I just can’t cope. I can’t multitask. So trying to do the room, help at school, keep in touch with friends, and organise a ball has all just got on top of me. And I can’t deal with the fact that I can’t find what I want. I do nothing else all day, so feel it is down to me to find what we want for the room and when I can’t, I just feel like a total failure. And what makes it worse, is that I know it is only me that feels like this. Not Nick. He is brilliant and just wants me to be happy.

It’s not straightforward I know. At the moment I’m particularly sad as one of the guys from our ‘Under 50’ site, died over the weekend. I always find it hard when something like this happens as it brings home just how real my myeloma is and just what might happen to me. I’d just felt back on track mentally, and it has sort of brought everything crashing around me. I hope to dear god that my remission will last many years, and I have been living life thinking this, but when people die or relapse, you realise that what you wish for in life doesn’t always come good. I can’t stop thinking about her at the moment and I didn’t know her more than to write to. It just makes me feel so, so sad. God it’s all so rubbish.

Things are hard work these days. Nick thinks that part of it is that I have to learn to deal with being in remission. I feel like I should feel lucky to be in remission. There are people I know who have relapsed already, and god knows how they’d feel reading this – probably thinking that I should thank my lucky stars. But what do you do? I seem to be fine for a while and then things just build up and get on top of me. I don’t sit there thinking ‘It’s the myeloma’, or ‘I’m so unlucky’, but most of the issues we have these days come back to the fact I don’t really know whether I’m coming or going these days. I don’t know whether I have 6 months ahead of me, or 6 years. How do you live your life on those terms. With 2 kids, I can’t just go ‘sod life’ and do what I want. I still have the things I have to do everyday. And we still have the financial obligations. I want to go back to work if I’m going to be well for a long time, but not if I relapse this year or next. I want to enjoy the kids and have special time with them, but don’t want them to become spoilt or think that we can do that year after year. But I hate the idea with everything that I will assume/hope that life will be ok for ages, and that if I relapse I’ll look back and wonder why I didn’t take the opportunities when I had them.

Somehow with all of this I still feel obligated to so many people. Like I can’t let people down. Luckily my oldest friends are being really good…and I am very grateful to have people who I know in the main, take me for who I am. Now. But to so many people around, I feel I have to put on a bit of a show. Maybe we all do in life. It just really stresses me out now as I feel the conflict like I never did before. I want to be selfish and put Nick and the family first and foremost (and not care what the wider family and friends think). But I can’t do that. It’s just not me. I worry too much what people will think of me…or how little they’ll think of me. It frustrates Nick to pieces…..he just wants me to be happy again.

So, the question is how to get that back. I think I am happy when I’m busy…I feel like I’ve got it all under control. But then something seems to break me very quickly and I collapse. I don’t feel sad most of the time, but I think Nick is worried that I’m not very happy with my lot. I suppose it’s not really surprising but it must be so hard for him. How do you deal with it if you think the person you live with hates their life. Which I don’t. Not most of the time. But I do find it tough. And conflicting.

God, quite a self-indulgent post. But I really needed to write some of what is going through my head down. And hey, this is for me more than anyone else too.

More wine needed I think…….



About Deb Gascoyne

I am wife of one, mother of two and a person in my own right :-) I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling out....it is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-)
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7 Responses to Feeling lost

  1. Dear Debs you arent alone in feeling lost after your sct . I went through something similiar , I used to get so annoyed at not being able to do things lt were my responsibility and set impossibly high goals for myself The wondering how long will it last ? does your head in too buty its only natural to question that Eventually I learnt to accept the new me , someone who can do a lot of things just not everything I used to or at different times . I also learnt not to look too far ahead , take each day as it comes Today might be crap but tomorrow could be brilliant Although my children arent small I still feel the need to be here for them and my grandchildren and mum too Perhaps you need to chat to your gp as depression is quite common after such a gruelling time that you have gone through in the last year Above all else be kind to yourself , your family and Nick love for being you not because you can do things Hang in there Debs it will get better lots of love Bridget x


  2. I completely agree with Bridget’s comments above. Feeling low and not “jumping for joy” are SO common after SCT or at the end of any cancer treatment. You are NOT alone! You may find it helpful to read a book that I found helpful, called “It’s Not Like That Actually” by Kate Carr: http://www.amazon.co.uk/Its-Not-Like-That-Actually/dp/0091894808. I borrowed it from our lovely new Maggie’s Centre, where I also managed to get counselling, which might be worth considering – from someone who understands cancer. The other option of course is to get yourself some steroids… maybe Nick could get you some from work. LOL! They’re working wonders for me.

    As for your comment about “There are people I know who have relapsed already, and god knows how they’d feel reading this – probably thinking that I should thank my lucky stars.” From one of those people, I don’t have that thought at all. I felt exactly like you do before my relapse – that uncertainty of whether it would be a few months or many years and the “how do I live with that?” – even when you’re not thinking about it on a daily basis – it takes up space in your head all the time, in the background. I didn’t get an answer, but maybe in living that’s how we find the answer?

    I’d say give yourself a bit of a break. Maybe don’t do quite as much and allow time for wallowing. And go ahead, spoil the kids! What the heck. It’s quite likely you’re not going to be there for them forever and they’ll understand it all better in later years, that you did all you could with them while you could. That’s what I would do if I had kids and it’s what I do for the kid that is me.

    I have to say, I am constantly amazed at how much you do and I do wonder if maybe you push yourself too much. Perhaps the bedroom can wait? The ball, school and kids is much more than I was up for before going back on Dex.

    Big hugs to you
    Jet x


  3. Scott Haigh says:

    Debs, I wish I could sit and chat to you all day long about the downs and downs of Myeloma – there aren’t many ups are there! I’ve read your post twice and could apply so much of it to myself at different times – I’m sure most other cancer sufferers could too.

    ‘ I learnt to accept the new me’ Bridget’s words, and I really do agree. My mind is still energetic, my body doesn’t want to play ball. I have had to slow down, re-evaluate, and above all I have had to accept I can’t do all that I used to. Sure, I feel guilty if I sit around watching films all day or reading, and getting up at the last minute to cook tea and tidy up. I’ve come to understand that no one else is giving me an hassle about it – just me. Two days at university and a full weekend with children and I need a rest. That is not normal, I should be able to jump up on Monday morning and get on with another day. I can’t. I need a full day of rest, of just doing a few bits and pieces around the house and cooking tea. Early night too. Sound familiar?

    Somebody I hadn’t seen for a while said Hi to me a few days ago, and asked how I am. My first thought was to tell them I was still in remission. You know, they don’t even know I have cancer – isn’t that just typical of how it takes over, even when we don’t realise it.

    I guess reading your post I feel as though your are really beating yourself up, and I agree with Jet’s comment – give yourself a break, you’ve come through a really difficult time, the world doesn’t care if you do or don’t ‘put on a face for them’, not really, and I’m sure you know it is those close to you that matter. The rest, well if you fall short of their expectations, so be it.

    You and your family certainly do come first, spoil them, what does it matter, take those times and cherish them, it is those times that make the difference after a bad week….

    Best Wishes



  4. Hi Debs
    I agree with all the comments above and I too I have found learning to live in remission really hard which is partly the subject of my blog. When you are on treatment you dont have to make too many choices and there is a plan, when you are in remission post transplant you have to make your own plans which is difficult when you dont know how long your remission is going to last. i was quite depressed initially following my transplant and still am to some degree. I was really upset to hear about the under 50’s group member dying, even though I didnt know her, it brings home how fragile our remission is and puts more pressure on us to be thinking I should be doing this, I should be feeling this way I should I should etc. I am just trying to live in the moment, at least I am only responsible for myself and dont have a partner and children to think of too. I think Nick is right about learning to live in remission, it takes time and maybe you are doing too much and need to chill a bit more and not be hard on yourself.

    Take care
    Wendy xx


  5. ps I have the book that Jet recommended, it is well worth a read and am quite happy to post it to you if you give me your address


    • Deborah Gascoyne says:

      Thanks Wendy,

      Don’t worry about posting it.when I get a moment, I’ll get onto Amazon and get hold of a copy.thank you though 🙂

      All these replies mean a lot



  6. feresaknit says:

    You do do an awful lot of stuff that would leave some non-myeloma people pooped. Can totally sympathise with the lacking of ability to multi-task as well as previously. I can still do two, or three things even, at the same time but by the time I get to the third I can’t remember what the first one was! 😀


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