I was diagnosed with MGUS 5 or so years ago and was totally in the dark. Scared wasn’t the word! And I couldn’t seem to find anything about it. It was found after a hospital visit for nerve damage requiring a blood test. I had a full body x-ray and now have an annual blood test.
The MGUS gang don’t seem to fit anywhere. We are not in the ‘don’t have cancer group’ and not in the ‘do have cancer’ group. Anyone who has the condition still need support. So I finally think I have found my gang. I really hope so.
My last blood test was showing irregular results and I had to go for another blood test and wait for the results. Well, I was petrified, expecting the worst. Although my family are really caring and always there for me, saying “it will be fine” wasn’t helping me at all. What if it wasn’t fine? I don’t know what I wanted them to say but that wasn’t it. As it happened they were right, nothing had changed and the results were great but I still felt really alone at that time. Perhaps it’s just me……
Anyway, that time is fast approaching for the yearly mental torture test so I expect to be not sleeping again, worried what might be. Just thought I’d share that.
Hi @4m4nd4 I am so glad you have found our forum and joined the ‘MGUS Gang’, yes, you are not alone and MGUS is classed as a blood cancer.
The Blood Cancer UK website has information on it under understanding blood cancers.
If you would like to speak to someone the support line details are above.
I have a different blood cancer but I really identified with your feelings of being scared, petrified, mental torture, not sleeping, worry etc.
I got those feelings at diagnosis and now I get them before and during appointments every single time and I was diagnosed 17 yrs ago.
Yes, my family and friends are supportive and their intentions are so good but as you write say ‘you will be/are fine’ or ‘oh, you do look well’ when I am feeling really terrible inside. As you rightly say what ‘should’ they say.
You are now not alone you have us to support you and please let us know how your appointment goes.
Look after yourself.
Hi @4m4nd4. I’m so glad you found us. It’s such a great place for support and sharing experiences. Although I have a different blood cancer, those fears around checks and appointments are there for all off us and we really do understand.
When is your next appointment? X
Hi @4m4nd4 everyone’s circumstances are different and don’t let anyone tell you that yours are less important. Always feel you can share what’s going on with you.