ALL And being scared

Not long been diagnosed with ALL I’m a 63year old male .im on my way back to Blackpool hospital tomorrow for the second stage of my treatment and for some reason I’m scared stiff of going to hospital this time. I’ve not read up on anything related to my cancer I’m just scared .i was a fit man until this happened and knocked me on my backside.

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Hi @Carling57. Welcome to the forum. I hope you find some support in the group, both to support you emotionally and with regards to diagnosis and treatment. I completely understand how you are feeling. When you are well it really does throw you doesn’t it. I was the same when I was diagnosed with follicular lymphoma. I just remember being in total shock, disbelief and really not knowing what to do or how to feel. Lots of people here will completely understand what you are going trough. I think you’ve done really well not googling as that can add to the fear. Just write down all of your questions so that they are ready when you want to ask them. Treatment is scary at any time, let alone in the current climate. Have you got a good support system around you? Remember the blood cancer helpline. Always a listening ear at the end of the line, and off course this forum which offers so much support. You’ll be in my thoughts tomorrow. If you are up to it please let us know how you get on. Really glad to have you here, keep sharing and take care X

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Ah a bloke…

I was diagnosed 3 weeks ago with PV and although its not the same as ALL i know their is a chance my condition could head that way.

I cant begin to say how many times ive felt stiff and shocked as im 38 years old and healthy and no way look or appear to be ill at all… i know i should and can feel normal but theres times in the day when either my body or mind or both says otherwise.

My session at hospital appear to be weekly and i am next seeing my haematologist next month for a status update.

I have no idea what is going on, but feel there is a huge neon light about my head and i have no idea what it says or what to do with it…

That numbness And emptiness and void you seem to feeling Is something im feeling also…

Hope you feel better soon, keep us updated

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Hi @Carling57 welcome to the forum, really glad you found it. I’m so sorry to hear of your recent diagnosis, I can only imagine what a huge shock that must have been for you and how much it must all be to process. May I ask how you’re coping and if you have got much support around you?
Wishing you all the best for your second stage of treatment, really hope it goes as well as it can for you. It’s so understandable that you’re feeling scared, it must all still feel very new.
In case you want to take a look at any point, we have a booklet on ALL, which you can find here - ALL Booklet. We also have this living well section on our website which you might want to take a look at at some point - https://bloodcancer.org.uk/support-for-you/living-well/
If at any point you just want to talk things through with us or if there’s anything we can do to support you, our support line is only a phone call or an email away, as @Nichola75 has said.

Really glad you’ve found this forum and I hope you find it a source of support for you at this time and going forwards.

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Hi @Carling57, a great big welcome to the forum and others before me on this post have said it all, we and the Blood Cancer UK support line are here to support you.
Your world has been rocked so no wonder you have been knocked onto your backside. I also felt in a weird bubble and that I was the only person in the world in my situation and my thoughts and emotions were all over the place for absolutely ages.
I was diagnosed in 2003 and I still get anxious before during and after medical appointments.
I found writing down my questions, thoughts , feelings and practicalities helped me prepare for appointments and my CNS (Clinical Nurse Specialist), or similar name, was also a good point of contact.
Take care, please keep posting and let us know how you get on at the hospital.

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@Rammie18, you will find a few blokes on here as you travel around the forum, including a couple of male Forum Support Volunteers, and you are all very welcome. There is no discrimination, and we all respect each other, no matter if our views differ. That there are a lot more females may be down to the fact that we are more likely to share experiences. We look forward to reading more from you. Don’t forget that you can always chat to someone on the support line which is open Mondays-Fridays (10am-7pm) Saturdays and Sundays 10am-1pm Freephone 0808 2080888. Best wishes

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@Pisces56

Oh no I am so sorry if any offence or discrimination was caused that was never my intention… I’m still new to this forum and everyone has been lovely and it’s been useful reading how others have been feeling and their own experiences… my statement was merely stating I’m happy that a male particularly has opened up and shared a not so great experience as a way of reaching out for an ear and or relation to how they are feeling and advice or help. I don’t think it’s a sexist remark that males can be stereotypically timid regarding opening up than females are but again, if my making that remark has caused offence in anyway I sincerely apologise. I really don’t want to take away how carling57 is feeling and I will be happy to delete my post if that’s all that was interpreted.

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No offence caused. I just wanted to assure you that everyone is welcome. I only commented as you said ah, a bloke. I had a little smile to myself, and it is great that more men are finding the forum, and sharing their experiences. Please do not delete your post, and I apologise if I caused you worry or distress, as that was not my intention. Take care

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Hi @Rammie18, until you mentioned it I had forgotten that feeling of having a huge neon light above my head, mine was in the shape of a wide arrow pointing down on me, I also felt in a bubble with the world going on as normal around me. It is so weird as anyone looking at us would know our diagnosis, but it has rocked our world.
I also remember having no idea what was going on to or with me and a great big feeling of being out of control.
Looking back in my case I think the feelings of numbness, emptiness and void were a short term protection mechanism because I was in such fear, anxiety and shock. I went to practicalities and the feelings came out later.
Please keep posting as you are ‘putting so many pieces in my jigsaw’ of insight.

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@Pisces56

It’s all good fella… I know it’s early days but you support volunteers to a grand job not only with the words and sentiments but the speed of your replies too… (underrated attribute to an online conversation)

What you said was exactly what I was implying just you said it better…

No it’s cool… confusion on both parts easily made esp when writing and posting online… it’s a bit like having a conversation wearing face masks.
It’s hard to interpret beyond the words…

Keep up the good work :slight_smile:

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@Erica

I’m no expert trust me… I’m just typing what’s in my head and hoping it’s kinda making some sense.

Thanks for empathising and giving the belief that these feelings though unique from anyone in your bubble is felt by those who are the centre of their own.

I’ll be honest I posted a lot well content wise late last night and I woke up and I honestly couldn’t remember any of it…

I didn’t drop a touch of alcohol but I had just completely blanked it out… it’s pretty scary esp when you can’t physically explain why…

I think at the moment I’m feeling brain fog a lot… I don’t think it’s related to my diagnosis but maybe more my mind trying to deal with it… but it’s not intentional which adds to the scariness I’m not in control or stimulating what my brain is now doing…

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@Carling57

How are you and how did you get on?

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Arrived at Blackpool hospital.The usual test for covid .Waiting all clear and allowed onto the ward .Where you see familiar faces and soon put my mind at rest.I Had bone marrow taken from my hip.I was dreading it .But to be honest it didn’t hurt one little bit.
Any way on to better news.
I’m now in remission.So that’s a good point .Off to Manchester some time this week to see the stem cell specialist.Thinking positive

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Thanks for the updated @Carling57 It’s so good to hear you’re in remission! Glad you’re feeling positive - I hope your meeting with the stem cell specialist goes well. We’ve got an information booklet on stem cell transplants if you’d like me to send you the link? It might help you to formulate some of the questions you might want to ask.

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Hi @Carling57, it is always great to hear personal stories of hospital visits and tests, thanks. Yes, don’t familiar faces put your mind at rest. I am really glad to hear you are in remission and we await hearing about your appointment, at another hospital, with your stem cell specialist. Take care and look after yourself.

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If you are going to the Christie they are amazing there. I didn’t have my treatment there but know someone who did, and also spoke there last year for Bloodwise ( now BCUK). They have a Maggie’s nearby for patients and families and also hold Wellbeing events. Good luck, and let us know how you get on

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Sounds like a successful visit! Hope you did something nice afterwards!

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