Recently diagnosed with Myeloma & having to wait 2 months for next blood tests. Whilst we are just getting our heads roubd it, Any tips on how to get to grips on having to wait every time for results, hearing it becomes the new norm?
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Welcome @AFrank to the forum and thank you for posting.
Yes certainly regular blood tests do indeed become the norm and having big gaps too is expected but early diagnosis can be anxious as after all it can now be as simple as a blood test to tell you that you have cancer.
I know it’s very easy for me to say now being diagnosed to coming up to 5years but I find understanding the purpose of your blood test, what to look out for, understanding the numbers and knowing what’s your normal and things to be concerned about i find really helpful.
Sometimes specialist and doctors will look at certain things and everything else is low down the priority list but whenever you see the words low, high abnormal it can very scary.
Results tend to be pretty quick and you can access these through your clinical nurse who can teach you how to read them and what to focus on.
The gap between tests can be monthly+ but it’s about discovering a normality for you as it’s unique per person. It’s also important to have gaps so big decisions are based on consistency rather than one off events as lots of factors (some sinister but some minor) can effect levels so it’s important to have those gaps.
An example my potassium levels were high but though it was a concern it was because I was having bananas in the morning after the gym, cut it out and it was normal no treatment change needed
So don’t feel you’re being neglected or there’s a concern. Brief chat to your nurse sometimes and most often makes all good and puts you at ease
Also check if your medical team go on the mantra that “no news is good news” or they will only contact you if something is up!
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Hi there
Are you recently diagnosed?
Where are you on your myeloma journey?
I’m 7 years into mine and 3 years post second transplant
I have my bloods done every 12 weeks now before Zometa
I like to know my blood numbers as they are markers of progression
I get a little anxious before my consultant call and a little sigh of relief when they are still stable.
Having bloods done is part of myeloma life and they just become part of my routine.
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Diagnosrd 2 weeks, next check in 6 weeks & who knows next. It’s early stages & unknuwn when it may progress & then what treatment. Main thibg I’m feeling is tiredness & I’m not my normal bubbly self.
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Hi @AFrank,
Welcome to our forum. I am sorry to hear about your recent diagnosis of Myeloma. I can only imagine what a huge shock that must have been for you and how difficult and overwhelming this time must be.
Have you been given the contact details of a Clinical Nurse Specialist? They are your main point of contact for your myeloma care at the hospital and can explain about your blood tests and what they all mean. It is natural to feel worried when you are waiting for your blood test results, but hopefully it will become a little easier in time for you. Distraction and doing things that you enjoy whilst you are waiting for your results can help.
I have enclosed our information on Myeloma which you might find helpful here. It includes how to get extra information and support when you are newly diagnosed with myeloma Myeloma Blood Cancer UK
If you want to talk things through with us, at any point, please don’t hesitate to call us on 0808 2080 888 to speak to one of our specialist nurses over our free and confidential support line.
Please let us know how you get on
Take care
Fiona (support services nurse)
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@Fiona_BloodCancerUK - thank you for taking time out to respond. I do have contact with the nursing team & am waiting for an initial review/assessment, I posted this message when I was on a bit of a low point which I seem to be having. I am also aware, many people around me are affected from Cancer. Joining this group has given me a realisation kick & need to understand the new me.
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