Hi everyone, I hope you’re all doing well. I feel like this has been the longest week of my life as today marks seven days since I was told about the abnormal proteins and bone lesion which would send me off to the haematologist on a red flag referral. As I’m sure most of you understand the waiting is horrendous so I rang this morning for more info and spoke to the consultant who referred me. He was very clear, although reluctant to diagnose as it isn’t his area of expertise. He said my serum immunoglobins are slightly elevated, and a paraprotein reading is at 10.3. That, combined with a bone lesion first detected 12 months ago which has since developed gives cause for concern, though until I speak to the haematologist on Wednesday nothing is definite. I’m the type of person who would rather know than beat around the bush, so my instinct is that it is fairly definite if there’s a paraprotein and a bone lesion though I understand they’ll want to build a bigger picture through discussing other potential symptoms I may have.
Counting down the days until I get a way forward. I feel there’s a rocky road ahead and I’m mentally preparing myself for a confirmation of myeloma and have cried every night - that’s when the fear comes over me the most I find. I can keep busy during the day, but at night I feel the dread of the future as much as I’m trying to stay in the present.
Hugs to you all. I’m only at the start of my journey I know.
@Emma13 I got on the road to discovering I had Polycythaemia vera (PV) via a car crash and a comment about having high blood count numbers as they booted me out of hospital. Referred to another hospital haematologist department, doc “why did they boot you out? You are a walking heart attack and the crash has saved your life” Followed by another discussion about symptoms and a throw away line as I was leaving about having Polycythaemia vera (PV).
No one’s journey to discovering the answers about their health is the same, the hard part is staying away from Dr Google or if you are going to look ( it’s a bit like the WET PAINT DO NOT TOUCH! sign, you will touch) be wary, look at the sources of the information, try to focus down and write things down so you can ask questions later on.
The hard part is the waiting and you never know, the answer may be a simple one.
A friend said, take up fishing, you can plan, get all the gear, the right location, but if the fish are ignoring you… learn to wait.
IF you have no one to talk to, do what you have to to distract yourself, jigsaws, book, box sets, walking, and learn that in this journey, being kind to yourself, starts at the first step.
Hi @Emma13 I am so glad that you have posted again.
I bet it is the longest week for you.
We are here for you to post exactly how it is for you.
Yes, I find the night time is the hardest, my thoughts and feelings can just go into overdrive and in the words of the Mama and Papas (and other groups) ‘The darkest hour is just before dawn’.
The waiting is horrendous, there is no getting away from that.
When you have your appointment perhaps tell them how anxious you are and that you are a person that wants to know exactly what is going on, the way forward and prognosis. Have your questions ready and make sure that you get answers.
We are about on the forum over the weekend and the Blood Cancer UK support line is there on 0808 2080 888.
Try and get some rest/sleep so your mind is thinking logically and be very kind to yourself
Thank you both for your replies. I’m very lucky to have a very supportive family and partner who have been helping me put each day in without being overly hopeful when we all know this is likely to be bad news. On a positive note, the doctor on the phone today was able to tell me there’s no high calcium levels and there’s no kidney damage. It’s the paraprotein and the bone lesion that’s pointing towards myeloma. I don’t want any false hope, under no circumstances so I just wish I could be told yes it is or no it isn’t. Some family members who work in a medical field have said it’s ‘fairly conclusive.’ I’m wondering has anyone else been in a situation and got news of monoclonal gammopathy of unknown significance (MGUS)? That’s probably the best I can hope for, but of course the bone lesion would suggest otherwise.