For the last 18 months I’ve had persistent raised white cells and raised amyloid and I’ve had a whole list of tests that haven’t come back with any particular cause. I was under an infectious diseases specialist who has now referred me to a haematologist, possibly for a bone marrow biopsy. I have really bad fatigue and pains in my legs and joints but put this down to possible long covid.
My appointment is in a few days and I’m really scared it’s going to turn out to be something nasty. I’ve done the worst thing possible and spent hours googling different blood cancers and scaring myself about what might be wrong with me. I’m only in my 20s and I’m terrified that I might have something that could kill me.
Oh @mogmam you sound so anxious and I am so glad you have found us.
For me your feelings are so natural because it’s the not knowing and it sounds you have had a lot of tests already. That is the trouble with very generic symptoms.
Yes, please do try and minimise your googling I have found the information can be very misleading.
One thing to remember is that all tests are to rule out as much as to rule in a diagnosis.
If you’re appointment is in a few days time it will give you the opportunity to write down all your fears, questions and practicalities.
I realise you are only in your 20’s, have you got any support.
I was diagnosed 20 yrs ago and life is better today than it has ever been. because it has given me the opportunity to assess my life and what I want out of it and with whom.
Please do let us know how you get on and be very kind to yourself.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
Hey there @mogmam, welcome to the forum, really glad you found us. Hopefully you’ll find it supportive here and your worries will come to feel not so terrifying. I’m so sorry to read of the fatigue and pain you feel and the long COVID. Those must be difficult to live with, so well done for getting it all checked out and ruling out infectious diseases. Now that you’ll see a haematologist you should get some more testing and hopefully some definitive answers. Keep a note of all your questions and symptoms, no matter how big/small they seem, and take them to your haematologist. I’d also say take someone you trust along with you to help take notes and be moral support.
For now, stop googling! You’re probably not surprised that there is a lot of outdated, inaccurate, and wrong information out there at the end of a quick search. Harder to find current data, but you’ve found Blood Cancer UK who base their information on actual blood cancer research. As it sounds like you haven’t been diagnosed with a blood cancer I’d say it isn’t wise to search for one that might match your symptoms. So many of the symptoms listed for various blood cancers can be explained by other less worrying ailments. Our blood can show up infections caused by issues unrelated to blood cancers.
Something that I can suggest as an older person wanting to give you a tip from over here in middle-age is to practice not worrying about stuff that can kill you at such a young age. Sorry to be blunt but anyone can die suddenly at any age. Some of us will reach old age. Something that may help take the edge of your worries about potentially being diagnosed with a blood cancer is that many of us diagnosed with them can still live to old age with some adaptations and actually pass away from stuff unrelated to blood cancers. I was diagnosed with Polycythaemia vera (PV) last year and was told I am more likely to die with it than from it. I would not recommend living day to day worrying about stuff that can kill you as it’ll be a long anxious life ahead of you! Again, I speak from experience of living with anxiety for many years.
Another bit of reassurance I can offer is to try not to worry about the bone marrow biopsy if you need to have one. Like you, I read all about blood cancer stuff prior to my diagnosis and saw some horror stories about BMBs. They can be as painless as a tooth extraction under anaesthesia, if you know that sensation. Do ask to be anaesthetised if you have a BMB as you’ll likely feel less discomfort that way. Don’t be embarrassed to tell them if you’re feeling anxious prior to the procedure. The nurse who did my BMB was so comforting and calm after I explained my anxiety that I felt relatively relaxed during the minor surgery. The BMB will be able to tell in minute detail what your blood cells are doing, so trust its results should you have a BMB.
Keep us posted about how it goes, @mogmam. You’re not alone in your worries so do please feel free to share them here as I’m sure you’ll find others who understand how you’re feeling. And stop googling!
