So scared 😱

[Byrnebaby]

I’m really struggling with my diagnosis, I was diagnosed on 2nd December and lost my dad 18th December, buried him on 14th Jan and started uk RadarUk trial on the 16th, all I read are scary side effects and death, I don’t know who I am anymore, I looked after a sick dog until July an he died and I looked after dad, and now I’m disabled and terminally ill, and am very scared, someone on a forum said if there’s a cancer to get, it’s this one as there is so much help, but that eventually stops working too, I’m just so hurting and confused

[Ceri_BloodCancerUK]

Hi @Byrnebaby, I’m so sorry you’re having a particularly difficult day today. We are all here for you, and I’m so glad you posted to reach out for support.

I also want to gently mention - if you’re googling and reading worst case scenarios online, try to be careful with that. I know it’s so tempting when you want to understand everything, but it often isn’t helpful. Not all sources online are reliable, and your own clinical team are the best people to answer questions about your personal situation. I certainly find that turning to ‘Dr Google’ only heightens my own worries and anxiety.

Now, I’m likely going to reiterate some of the things I’ve linked/said before, I hope you don’t mind. I think it often is a good thing to be reminded of the help that’s out there.

Firstly, I’d like to link you to this Coping with myeloma - how do you do it? web page on the Blood Cancer UK site. It’s got stories from five people living with myeloma talking honestly about the emotional side of things - including someone who started therapy because they realised they weren’t allowing themselves to feel upset or excited about anything anymore. It might help to know others are grappling with similar feelings.

Then there are these pages around mental health specifically which might be of some help:

• How to look after your mental health when you have cancer
• Q&A with a psychotherapist answering some brilliant community questions

And, of course, I know you’ve been pointed to the support line before, but please do use it if you need to talk things through. Sometimes it helps to speak to someone outside of everything. We’'re on 0808 2080 888 or support@bloodcancer.org.uk.

As for those deep, important questions you’re asking - “Will I ever be me again?” when you maybe don’t even know who “I” is after years of caring for others - they’re really hard questions, and ones I suspect a lof of us in the cancer community struggle with.

I wish I could tell you it all magically gets easier right away, but that wouldn’t be honest. What I can say is that what you’re feeling right now - the struggle, the not-knowing who you are - is completely understandable. You’re allowed to be in this really hard place. But please remember, you don’t need to have any of it figured out right now.

We’re here.

Take care,

Ceri - Blood Cancer UK Support Services

[Byrnebaby]

Thanks Ceri, I have emailed, I’m just in a place where I can’t feel hope anymore, my husband is saying we’ll hit it, it will go and if it comes back, we do it again, and that’s not the reality, we run out of options, our bodies get weaker, we are on meds forever, I can’t break his spirit as he’s the one that has to riel a full time job, I just feel lost

[alisonnoble]

Hi @Byrnebaby, I just wanted to add another voice here to say how deeply sorry I am for everything you’ve been carrying. Losing your dad so recently, after already caring for him and your dog, and then being diagnosed yourself, that is an enormous amount of grief and change in such a short space of time. Anyone in your position would feel frightened, disoriented, and overwhelmed.

What really stood out to me is when you said you don’t know who you are anymore. After years of looking after others, and now suddenly needing care yourself, it can feel like the ground has gone from under your feet. That loss of identity is very real, and it hurts, but it doesn’t mean you are gone. It means you’re in the middle of something unimaginably hard.

You don’t need to be brave, positive, or “strong” right now. Please know that you’re not alone with these thoughts, even when they feel unbearably heavy. I also wanted to share gently, that I’ve been a carer for someone with a blood cancer, and I share lots of your thoughts.

If it feels manageable, you might find some comfort in the resources Ceri has shared above, especially the mental health pages and the support line, and reaching out to them if you’re able. Sometimes talking things through with someone outside of everything can help take a little weight off, even temporarily.

I’m really glad you reached out here. Keep posting when you need to, even if it’s just to say “today is awful.” We’re listening, and we’re with you.

Sending you a lot of care

[Byrnebaby]

My fear is every day is going to feel Like this, for the rest of my life, however long I’m fortunate to have I can’t get over I have a death sentence looming over me, just as life was supposed to get a bit gentler, I know I sound like a spoilt child on repeat, but I just can’t fathom ever being ‘wrll’ as up until taking the tablets I never felt ill, it’s such a mind game with this, and I am truly scared of my future or no future

[Duncan]

Hello there @Byrnebaby, you’re really going through it right now and I wanted to say well of course you are! How could you not be feeling all sorts while you experience all that you are?!

While I’m not a doctor, I do live with PTSD which you likely know is a stress disorder. It can present as panic attacks but more generally can be like a constant hum of anxious thinking. It really sucks and how you describe what you’re feeling reminds me of my anxiety.

For now, would it help to stop googling stuff and sit with your feelings instead? There really is so much generalised and inaccurate blood cancer ‘information’ online at the end of a quick google and it’s just not worth reading it. Maybe stick to official blood cancer organisations like this one.

Grief and feelings of loss will find a way to emerge even if we keep ourselves busy so I’d say feel it. After my diagnosis of Polycythaemia vera (PV) in 2023 I felt like I was grieving my pre-cancerous self and that I’d never be able to function again. I was already having therapy and still find it very helpful, maybe you might too? A diagnosis of cancer and losing a parent are two of life’s worst stressors, so no wonder you feel wretched.

If counselling is something you’d be interested in, your GP can refer you but please know that waiting lists tend to be very long and typically limited to 6 sessions of cognitive behavioural therapy (CBT) which isn’t for everyone (I hate it!). Macmillans and Maggie’s cancer organisations offer free therapy so check out whether you have those nearby.

But really I just wanted to say you’re not alone in feeling like you do, even though it can be terribly isolating. If my experiences of grieving are anything to go by then it does change into something more poignant, maybe even a sort of resilience, but for now just let yourself feel it as you’re going through a lot.

Please let us know how you get on, and do lean on your husband for support. Now is the time for you to let yourself be cared for @Byrnebaby.

[Ceri_BloodCancerUK]

Just popping back in to share a link to a podcast that I’ve had sent to me via our lovely Clinical Engagement team: The Myeloma Minutes (on podcast apps, Spotify, and Youtube, too). I thought it might be of interest,@Byrnebaby?

[2DB]

Hi @Byrnebaby

I have been living with myeloma for 8 years.

You won’t always feel like you do from treatment and although myeloma is incurable it’s very treatable. Treatments have advanced since 2017 and the Radar trial is having some very good results. The Internet will give you worse case scenarios from data but myeloma is very individual.

I think what’s happening is you have gone through the pain of death and you probably can’t see it being any different to yourself, very understandable. If I could suggest asking your consultant or clinical nurse for some help to process this life changing event you are going through. Giving yourself time to grieve for the person you were pre myeloma to accepting and moving forward as the person living with myeloma.

Lean on family and friends I know how hard it is to ask for help but I found mine were delighted to do something as they felt so helpless

My motto was well I can’t give this back so let’s keep going forward one day at a time.

As with a lot of medications they can make you feel worse to start with but once your body gets used to them it’s much more doable.

I found asking questions on how each treatment worked and why helped me to be in control.

Myeloma UK is a great source of information

You have got this and it’s ok to not be ok.

[2DB]

Brilliant podcast very informative