Hi everyone.
I am new on here so please bare with me.
I had blood tests few weeks ago and got called back to the doctors as it showed too much protein in my blood, so in result my bone marrow isn’t working properly. This has scared me as you can imagine.
I had the blood test repeated, and the results came back the same, no better or no worse.
I have an appointment to see the Haematologist this Friday 8th November. I am very nervous and worried about what I might hear. I have never experienced anything like this before and I am very frightened.
Please anyone who can put light on this at all, I will be grateful.
Thank you
Kerry x
Hi Kerry Kezzie75 and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear that you are on the diagnosis rollercoster.
I am Mike Thehighlander and help out around our blood cancer forums. The fact that you are being referred to a Haematologist from my point of view, is a positive.
These are the experts in all things blood and bone marrow. You need to understand that there are many types of bone marrow illnesses that ARE NOT cancer. The only way to get answers is to work with them to put all the jigsaw together.
I was diagnosed with a rare type of skin Lymphoma over 20 years ago........ nothing ever showed up in my blood tests that would have said that I had Lymphoma so it is important to get to the bottom of this and find the truth.
I don't want to feed your stress and concerns so I am deliberately not directing to any of our specific group at the moment - but IF you find yourself on the blood cancer journey - it is all very treatable.
Try and keep clear of Dr Google - it is not helpful and will take you on a rabbit trail.
You may just want to talk with someone so you may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information and Clinical Information mostly open 8.00 to 8.00 but check the link.
On a practical note - you do need to be prepared for your appointment on Friday so you need to get a note book.
The note book is the place where you record EVERY question that comes to mind. The note book goes to all appointments and when the Consultant says ‘have you any questions?’ the note book comes out.
A lot of people freeze at this point and are overwhelmed by information. So you can say ‘yes we have some question’ you go through each question one by one, making sure you write down all the answers you get. If you don’t understand something you stop the Consultant and ask them to put into language that you understand and remember the record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'
The note book also helps your sleep!! As these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot and I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear. I would also recommend that you go have a cup of coffee/tea straight after the appointment and unpack what had been said so that a clear understanding is made and with this you can plan to move forward.
Come back on this post and we can help more once you have more information.
We can walk this with you ((hugs))
