Hi all, I’m a very confused lady I saw my consultant because my white blood cell count has been raised for over a year now apparently, she didn’t really say a lot and the last thing I expected was for her to say low grade leukaemia…!! Shock 
to date I’ve only had the one appointment I’m due at my local cancer center on the 27th feb, and have no idea what to expect, I’ve had some bloods done today to go to Birmingham but that’s it, I feel confused, nauseous,and to top it all my daughter refuses to believe there’s anything wrong with me saying it’s all in my head…… “help”……
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Oh @Bettieboop I am so glad that you have found us and you are now part of our forum family.
The Blood cancer UK support line is also there for you on 0808 2080 888.
I am not surprised that you feel confused, nauseous, perhaps in shock, anxious, scared and very isolated, especially if you feel your daughter refuses to believe you.
I really remember all those feelings when I was diagnosed, what I would say is to be very kind to yourself.
Work did not believe me either.
If your appointment is the 27th Feb it will give you a chance to write down all your fears, thoughts, feelings questions and practicalities.
Then you can make sure you cover them all at your appointment.
This might be completely out of the question but might you want your daughter to go with you or perhaps you have someone else that might go with you for support.
Just give yourself some time and we are here for you so you can say how it really is for you. I really look forward to hearing more about you so please do keep posting.
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Hi Bettyboop
I know how you are feeling, thankfully my daughter was with me whe we first saw the consultant and we were told I had Polycythemia Rubra Vera. It was shattering, particularly as I was put on watch an wait. Wait for what we wondered.
Previously I had been having difficulty in getting a GP to believe there was something wrong with me, admittedly I didn’t look unwell and all obs were fine. I couldn’t describe what was wrong. It is horrible feeling that someone doesn’t believe you. We all believe you we have all been through it.
This forum is very supportive and helpful, it is always there for you, like a big safety net it catches you if you fall into doubts, depression Loneliness or answering the queries you are bound to have. Gradually you will begin to find a level of acceptance, a way of coping, but there will be down days, we all have them. Let us know how you are doing. Marylin
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Welcome to the forum . Yes it is such a shock especially if like me I also had few external symptoms.
Once you get your confirmed diagnosis you will find lots of sources of information here. My doctor explained when we first thought I had Chronic lymphocytic leukaemia (CLL) a had type of leukaemia that it behaved like a long-term (chronic) condition that needs treatment from time-to-time to keep it under control. In the end I was diagnosed with lymphoma also a chronic type follicular lymphoma.
You will find lots of support and information here.
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Good afternoon
Thank you so much for your reply, yes all of the things you means at the moment upset I thought I could rely on my daughter for emotional support if nothing else but clearly not, I don’t understand why she can feel so angry with me and it’s not possible for her to attend the appointment with me has she works, so I will be going alone, hopefully I will come out less confused, has ive explained I don’t know what to expect if anything.
I feel so hurt and silly for saying all this I’ve never experienced so many emotions all at the same time……thank you
Kay Wilson
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Hi @Bettieboop
It is a shock when your told you have blood cancer
Your experiencing all the emotions that comes with this
Can I kindly say that your daughter maybe feeling the same way and scared that her mum is poorly
Mums are supposed to look after daughters and to find it’s the other way could be too much for her.
Perhaps find a time that you could both sit and talk when you have both had time to process what is happening
My boy wouldnt and still doesn’t talk much about my myeloma
@Erica always has lovely advice
Wishing you well on this journey
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Hi @Bettieboop and @2DB 20 yrs down the line and my husband still has his head in the sand and he and my son don’t talk about it!!
That’s one of the reasons why I find this forum so supportive!!
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Ahhhh bless ya, yes it’s so difficult I do feel un well but I have other issues also so I’m not sure what if any is related to this blood disorder, can I ask please on what test results do you get a definitive diagnosis…? I’m so confused and upset at my daughters reaction has she’s not speaking to me at all now……
Kay Wilson
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Thank you for you reply it’s much appreciated, can I ask with what tests do you get a definitive diagnosis…? I’ve had raised white blood cells for over a year it turns out only just come to light….
Kay Wilson
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Hi there, I wish I could talk to her, but unfortunately she’s adamant that it’s all in my head and refuses to discuss anything about it, so I’m at a loss I guess waiting until she can
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Morning @Bettieboop
This link from @BloodCancerUK has lots of useful information about the various tests . It all very much depends on what your medical team decides for you . No two people are the same. I had blood tests, CT scans , bone marrow biopsy’s none of which were conclusive. I had more biopsies still not conclusive it was only the final lot that were . This is why it can take what seems like a frustratingly long time, for us patients. For me this all took around four months. I know it is a difficult time. You got this, I’m six years on this year and doing just great.
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Hi @Bettieboop @Jules has given you a great response.
We really are such unique, special beings, perhaps like zigsaws, and specialists all put the puzzles together in their own ways to make a diagnosis…
As for your daughter perhaps just give her time and you might just send her a copy of your specialists diagnosis, either way, if you want to.
You are never alone on our forum so you have us around you and the Blood Cancer UK support line on 0808 2080 888
Please do keep posting and be very kind to yourself
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Ahhhh thank you so much if nothing else it’s all very isolating, well in my case for now, I’m hoping she feels she can be there with me through this as I’m pretty scared at present…. But thank you for being understanding.
Kay Wilson
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Hi @Bettieboop I think it is very natural to feel very scared, I know I did.
We are here for you
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