Hi 
I feel silly I have no diagnosis yet I am on day 13 of the 2 week cancer referral due to bloods being deranged
Ruling out Chronic myeloid leukaemia and mpd.
No symptoms went for routine bloods for possible menopause!
Now all this, I have been signed off today for two weeks by my GP
I am a palliative specialist nurse
I’m thinking the worse and feel totally alone xx
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Hi @Karen3 a great big welcome and in my book you are certainly not silly and you are now part of our forum family so never alone.
It must be a shock suddenly being on the 2 week cancer referral pathway.
As you probably know that all tests are to rule conditions in or out.
Also many conditions have very generic symptoms so diagnosis takes time and perhaps (I am not a medical person) they just have to take it a step at a time.
I think that many of us always fear the worst and with your job I think it is natural.
You say you have 2 weeks off work, personally me and my head are not good news.
I need to try (and it is not easy) to divert my mind, perhaps do nice, enjoyable things
Many of us do not make 'patient patients.
Please do keep posting as I look forward to hearing more about you and I want to know how you get on.
The Blood Cancer UK support line is there for you on 0808 2080 888
Be very kind to yourself
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Dear @Karen3,
I am sorry to read what you are going through. I do hope you get an appointment to see someone really soon.
I am glad you have some time off as you wouldn’t be in the right frame of mind to work right now, I agree with Erica, lots of fresh air and nice things to fill the time, please don’t sit at home worrying.
You have our community now so no need to feel alone, do come and share your feelings with us anytime and if it would help you can always call us on 0808 208 0888.
Best Wishes,
Heidi J (Support Services Nurse)
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Hi everyone
Had my appointment last week, bloods taken, awaiting spleen scan, dr said be in contact in 2 weeks, I have 1 week left off work.
They said checking for Chronic myeloid leukaemia or jak2 mutation?
Both treatable with tablets?
I’m a mess still, not knowing and the waiting time this is my 5th week!
Meant to be on our dream holiday end September for my hubbys 60th and unsure if we need to cancel
Everything is up in the air, I’m still a nervous wreck, sorry to go on x
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Hi @Karen3 you are certainly not ‘going on’, we are here for you to have a vent, it sounds to me it is an anxious time for you, waiting is horrible.
Perhaps ensure your medical team knows your holiday date constraints, and then update your holiday company and travel insurance company.
Please do let us know how you get on and be very kind to yourselves
Hi
Had my diagnosis a few hours ago
It’s Chronic myeloid leukaemia
They have asked me to cancel my cruise as they want to do a biopsy next week and start treatment after results
Not sure how I’m feeling at moment, I am shocked I think x
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Oh @Karen3 that is not what you wanted to hear on so many levels and I know how much your cruise meant to you.
Perhaps you are in shock I was when I got the words Chronic lymphocytic leukaemia (CLL), 20 yrs ago, I saw them with bright zig zags around in my mind and felt in a bubble with the world going on around me.
Perhaps just give yourself a while to take it all in.
Don’t forget perhaps write down all your fears, questions and practicalities for your next appointment
Be very kind to yourself, and please do keep posting.xx
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Dear @Karen3,
So glad to hear from you again, I am sorry you have had the shock of a diagnosis but I am glad you are now on the right path for management/treatment.
I am sorry about your cruise, although perhaps you wouldn’t have been in the right frame of mind to enjoy it right now, perhaps you could delay until next year? This would give you something to look forward to rather than cancel completely.
I have attached some information on Chronic myeloid leukaemia from our website - Chronic myeloid leukaemia (CML) | Blood Cancer UK , the treatment options for managing this condition have really advanced in recent years and I think its really important to focus on the word ‘chronic’, its a cancer that is manageable and in time you will be living your normal life again. Right now everything is happening and it all feels overwhelming which is completely normal. Take one day at a time for now.
Remember you can call us if you want to talk the diagnosis through - 0808 208 0888.
Best Wishes,
Heidi J (Support Services Nurse)
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