Hi,
I've not been diagnosed but 3 weeks ago my GP called to say he was going to request an urgent appointment with the Haematologist as some things had come up from a blood test I'd had done for the Nephrologist.
He said I had "remarkably high levels of immunoglobulins" and when I spoke to him again a short while later, he said I had a "discrete band" show up too. I have stage 3B kidney Disease and recently had 6 B12 shots as I am B12 and Ferritin deficient. They made no difference to my poor energy levels.I have megaloblastic anaemia and 'sticky blood' as well as crazy heavy periods (4 in the last 7 weeks each lasting 5 days).
So the blood test envelopes arrived last week from the hospital and I looked up what each set of initials meant and I'm being tested for Myeloma and one of the tests is to gauge the stage. I had the blood taken today and now I have to wait till next Wednesday to see the Haematologist and get the results.
I live on my own, miles from my children and they're the only ones I have to talk to but I can't talk to them coz I don't want them to worry. I've had loads of thoughts about the worst case scenario and the thought of leaving my kids and Grandchildren is killing me!
So this is why I'm signed up here. I feel I'm going to go crazy or explode if I can't share what's in my head. Obviously it may be good news but I need to prepare for the worst just in case. When I get my results I'll be on my own and I'm going to need someone when I come away if it's bad news. Any suggestions?
Hi APat and welcome to the Online Community.
I am so sorry to read about you being tested for Myeloma but I do hope you will find the support available in the community helpful at this difficult and challenging time.
Talking with others who are walking the exact same type of diagnosis path will help you navigate this unwanted journey.
However I was actually diagnosed way back in 1999 with another type of incurable (rare) blood cancer so do understand the journey you are on but lots of hope out there as I have been successful treated over all these many years and I am still around, doing great playing with my four granddaughters.
The New to Community is like the Community Reception area and as there are many cancer types and experiences so likewise the Community has many dedicated support groups to connect into so can I recommend you start by joining our supportive Myeloma group as this will be a good place for you to connect with other folks who have been on the sane pathway.
Navigating the community will depend on the device you are using. To join a group just click on the green link above then scroll down and choose 'click to join' or 'join' on the page that opens.
You can then introduce yourself by putting up a post by clicking on ‘New Thread’ or ‘New here, say hello’ then hit the box with the X on the top right (phones).
You could just copy and paste the text from this your first post and you can also join in with existing ‘Discussions’ by clicking on 'reply'.
It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section.
Happy to help out more at any time.
All the very best ((hugs))
My journey has been long and completed (Hit my community name to see my full story)
So my two daughters have grown up (half their life), went through University, got married and now have 4 granddaughters between them so my cancer journey is just part of all our lives. From day one nothing was ever hidden - what’s the point as they would have noticed anyway so kept life as simple and honest as possible cutting out misunderstandings.
Our granddaughters were born during my most challenging part of my journey so far as rather ill at times but a good excuse for them to play doctors and fuss around grandad - children are far more resilient then we realise.
As you say you don’t have a diagnosis but I do think you made a good move reaching out on the community as it is a safe place to vent and talk with others who have an understanding.
You may want to hold back from diving into the Myeloma Group until you know for sure but this discussion is always open and I am always looking in.
((hugs))
