Survivors Guilt

As those of you who know me will understand, 8 years after my first transplant and 10 years after diagnosis, I KNOW that I am doing brilliantly. And this despite the fact that I have recently relapsed and will be starting treatment shortly.

To recap on my situation, when I was first diagnosed, the figures that were bandied around in those days were a prognosis of, on average, 2-5 years….if you were lucky. I was scared silly of what that meant for me, Nick and our young children. I genuinely believed that I wouldn’t be around today. When I did my fundraising, a big part of it was to hit hard with the figures that I thought were a reality.

But here I am today, fitter that I’ve been since I was 18, and despite the relapse, really well in myself! And even knowing that my treatment is about to start, I feel guilty every time that I hear about one of my myeloma friends going through a really rough time with treatment, or even worse, that their journey with it has ended.

It’s such a strange thing to deal with and it’s hard to sit here and try to put it into words. And I hope that I’m not tempting fate with my upcoming treatment in explaining how I feel, but I can’t believe that I’m the only person out there who feels like this. I have always used this blog to explain my feelings about my blood numbers, my treatment and my whole experience, but I now feel guilty when I post as I know that there are people out there dealing with things a whole lot worse than me!

The guilt doesn’t only extend as far as other myeloma patients. I feel bad that I’m complaining/ sad in front of family and friends of others who have lost someone with myeloma. I feel bad that my thoughts on my future treatment are a bit benign to someone who has been told their myeloma has become aggressive and non-treatable. I almost feel that having myeloma isn’t harsh enough and that to be a true myeloma patient, I have to be really struggling.

I know so well that I am a REALLY REALLY lucky person to still be here today, and to be so well with it. No matter what happens in the upcoming months and years, I AM lucky. I love my family, I love my friends and I love my life and I certainly don’t take it all for granted as without them and what I have, I would be nothing. But this feeling of guilt has a danger of overwhelming me sometimes.

Now don’t get me wrong – I feel guilt about lots of things that I shouldn’t do. It’s in my nature. But I find this one really hard. I think it’s part of why I fundraise and why I feel at a bit of a loss doing nothing for Myeloma UK at the moment. I think I need to feel less guilty. I need to find a way of thinking that me still being here is good for those people going through even more crap times. Mad really – I wouldn’t want anyone else to feel like this, to worry that their cancer wasn’t bad enough.

Until my relapse in November, I even found myself feeling like I had been a fraud! I worried that the people around me, family and friends, thought that I had lied to them. That I had told them I had incurable cancer to get attention. I even started questioning whether they would be right if they thought that. I was worried that my achievements with fundraising were because I’d spun my story to make it sound worse? Had I? Maybe I didn’t even have myeloma? Maybe it was all a mistake. How mad does that sound now that I put it down in words. I know that it isn’t the truth. I especially know that now that my myeloma is back.

I suppose the reality is that I’d rather suffer with survivors guilt than see my myeloma return aggressively (which it could do!). I’m scared of that. Better not me – but how selfish is that – and how guilty do I feel for the thought. Survivors guilt seems to impact in lots of ways. I’m interested in knowing how other patients deal with this? Do you feel it too? Do you get counselling? Am I just mental?

About Deb Gascoyne

I am wife of one, mother of two (& a dog!) 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 is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-) Diagnosed in 2009 with smouldering myeloma, I started treatment in 2010 and had a SCT in 2011. I’ve was on maintenance until November 2018 but my figures went up so officially relapsed. I have been on dara since 2019 and had my second transplant in September 2020. Still on dara and keeping fingers crossed.
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3 Responses to Survivors Guilt

  1. Chris Ratcliffe says:

    Big hugs hon. You are so inspirational and your feelings as you deal with all myeloma throws at you are so tough for you. I know you won’t stop feeling guilty as it’s in your nature, but believe you’ll find a path through your feelings at each stage of this awful disease. Love you. Xxx

    Liked by 1 person

  2. alexbicknell says:

    Have I felt like this in the last year, while my ‘eloma has been active? No. Did I feel it during remission? All the time. Nuts. Guilt – another symptom of a profoundly all encompassing, systemic disease.

    Thanks for writing it down. More said, less taboo.

    And don’t forget, there’s no quota of myeloma. You (or me) doing well doesn’t condemn someone else. We’re allowed to be grateful for our relative good fortune (which is always contingent anyway), without it implying any negative thoughts for anyone else.

    Stay strong – if your treatment is not too arduous, and it works, that’s 100% good. (Writing this on a sun lounger in Greece. Not feeling guilty about my good fortune, at all.)


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