I am on watch and wait CMML 1 Most anxiety caused by appointment system I never get my blood test form or telephone appointment notification at the same time I end up unable to organise blood test in time for appointment despite calling the appointment line and signing up for patient knows best . Could I request bloods form only and ask consultant to ring me if any action required My WBC has stayed aroun 50 for several months No treatment until 100
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My consultant sends me a blood form to do bloods a week before consultation
There is no reason why you couldn’t ask for this or ask for what ever you are comfortable with that’s less anxiety inducing
Consultants can be patient led
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Hi @GJCMML1 a great big welcome to our forum and It could have been me writing your post.
I am sure I never ever spent so much time waiting on medical appointments, tests and results and chasing for them.
Chasing medical matters is so frustrating and absolutely wears me out.
Yes, you can always request or ask for anything it is up to the medical people to say why it is not possible.
If you have any problems there is your hospital PALS (Patient Advice and Liaison Service) that you can approach.
Please let us know how you get on and look after yourself
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Hi @GJCMML1 and welcome to the forum.
I feel really frustrated for you and you don’t need this added anxiety. . Definitely make the request and as @Erica says, contact PALS if you have any more problems. Please let us know how you get on 
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Thanks all for your help I shall be more assertive when I have my next appointment Will try Pals if that doesn’t work
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Yes - please let us know how you get on. How are you doing in yourself?
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Will probably ring support line for a chat
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I think that will be really helpful for you. Take care
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I attended the zoom support meeting for CMML it was helpful , especially the long term survivors 15 + years but everyone seemed to have low blood (white)counts.I am confused as mine is too high and climbing !!! Also wondering about referral to a specialist ? Should I push for this now or wait until active treatment begins ?
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Hi @GJCMML1 I will copy your query to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses for you and I hope that someone on here will be able to share their experiences
My personal philosophy is if it is playing on my mind I need to always ask the question.
Look after yourself and please let us know how you get on.
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As @Erica said - ask the questions you need to otherwise it will okay on your mind. I’m glad the support group was helpful. Is it a regular group?
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Hello @GJCMML1
It’s really good to read that the support group was helpful, thank you for letting us know. And like you say to speak to/see people with 15+ yrs within the group.
With regards to the question about your blood counts being higher than other people’s, try not to worry too much. Everyone is individual, and your higher counts may be ‘normal’ and stable for you. When is your next Haematology appointment? You could ask your specialist/Consultant what their ‘parameters’ for you are, as they may be fine with your counts running higher.
Are you feeling symptomatic at all?
Getting a second opinion or a referral to a CMML specialist may take a little longer than it used to (staffing issues), so it might be good to consider this too. It doesn’t harm by seeing someone sooner, as they will best advise, again, on your specific blood counts and whether this is cause for concern or not. It will also be a chance to discuss possible treatments or options for the future.
You can get a referral either from your GP (they may ask you to find the name and place of who you want to be referred to) or via your current Haematologist, they may suggest someone, or again they may ask you if there is someone specific you want to see. You do not need to wait to see your Haematologist to ask for a referral (unless you want to), you can ring up the department and let them know you’d like them to make the referral for you.
Please get in touch with us in support services if you’d like to talk about this further.
Best wishes, Heidi.
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Hi and glad you joined our forum. As others have said, don’t sit an worry. It’s always best to ask what is possible and what isn’t so that you know where you stand. We all have the frustrating experience of waiting for medical bureaucracy to move on this forum so feel free to offload whenever you need to.
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CMMLGJ Just seen a new consultant who was great Lots of info and next appointment booked whilst I was there !!! Marvellous no more chasing up appointments Brilliant Downside white blood cell continuing to climb and suggested another bone marrow biopsy to check staging and what is going on
Just not sure if I want to know if I have changed stage and treatment required Very anxious re side effects and daily hospital visits
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Oh @GJCMML1 I am so glad that your new consultant was great, doesn’t it make a difference.
I am not surprised you are very anxious, we have entered this parallel universe that speaks a different language and procedures that sound scary. The unknown is scary.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888 and you have your forum friends here to support you and sharing their experiences
Be ever so kind to yourself and please keep posting
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Thanks Erica Still mulling it over The specialist nurse( newly assigned key contact !) is ringing me to see what I decide in a week .It’s all become sensible and civilised so must be serious 
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