Waiting for a diagnosis

I’ve had an appointment with a haematologist this week and have been told that I most likely have MGUS or smouldering myeloma, they’re fairly sure it’s not multiple myeloma for now. It was all quite a shock as I was having blood tests for other things and I’m only 40. I’m now waiting to have a bone marrow biopsy and CT scan to diagnosis which. I’m feeling a bit lost at the moment and wanted to connect with people who have been through the same thing.

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Hi @Loopykat and welcome to the forum.
I’m so sorry that you’re going through this, but I am so glad you have found us.
I have a different blood cancer but I know there are others with your diagnosis who will be able to share their experiences with you,
What we all understand is that feeling whilst waiting for test results and diagnosis.
I was 42 when I was diagnosed with lymphoma and it was a complete shock. It was a rollercoaster of emotions and I wish I’d found this forum earlier than I did.
The support line is a great source of support if you feel you need to talk things through.
The next few days will be tough and you just need to go with those emotions and don’t bottle it up.
Have you got people around you who can support you?
Share on here as much as you want to. We do understand and can support you now, and throughout your journey.
I wish I could give you a big hug and let you know you are not on your own. I’ll send a virtual one instead X

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Hi Loopykat,
Welcome to this supportive group. I do know that feeling of ‘No not me I am - too young- too fit - too strong’. They must have made a mistake etc. A diagnosis is always a shock.
I feel I was very lucky because I was sent to hospital by my G P expecting an appendicitis diagnosis and so everything, scan, a huge number of blood tests and the bone marrow sampling all happened within 24 hours. Listening to others in this group that was unusual and so the wait for each stage of the diagnosis is really spread out and therefore ramps up the anxiety. I have CML and so different to you.
I found that I was able to relax into it all quite quickly because the medication just made me so fatigued that I could not fight it. In a strange way that made me more chilled and all the little things like Spring and sunny days and phone calls and emails from friends ( I said no visits please but do call me please) and the Grandchildren etc lifted my spirits each day. My crowning glory has always been the love of a good man too. Try to let yourself find the good things each day and to my ignorant ears it sounds like you have been caught early. Your feeling will be confused and galloping around your head but as you calm and want to ask questions or just sound off then you know where we are.
Big warm hugs to you
Grandma Jo

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Oh @Loopykat ( I love that name) and a great big welcome to our forum. As @Nichola75 and @GrandmaJo have said all our situations and diagnosis might be different but perhaps we all share similar shock and anxiety amongst many other emotions and thoughts. I also felt lost and that I was the only person in the world in my situation, in a bubble with the world going on around me.
I was diagnosed 19 yrs ago at 53yrs old and again whilst be treated for something completely different, in my case gynaecological.
Perhaps all you can do is to write down any questions you want to ask at your next appointment and really look after yourself and be ever so kind to yourself.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Please keep posting.

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Loopykat was the first username I had when I started using the internet in the 90’s so I just stuck with it :joy: I’m rather fond of it now!

Thank you all :blush: it’s good to here from people in the same or similar boats. It was a shock to hear that there was no chance it will turn out to be nothing, it’s just finding out what I have. I’ve got a bit of a needle phobia so I’m really not looking forward to the bone marrow biopsy.

I keep fretting about how I’m going to tell people too, especially my children. My next appointment with the haematologist is mid April so I’m guessing I won’t have a confirmed diagnosis until then. My husband and a good friend know, my friend has a chronic and life limiting illness so really does understand. I’m lucky to have them. I haven’t told my mum as she really panics so I’d rather wait until I know for sure. That means I don’t really want to tell anyone else until she knows if case she finds out from someone else.

I’ll definitely start making a list of questions, I had to phone in after my appointment as I thought of things afterwards that I forgot to ask.

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Hi @Loopykat,
Welcome to the forum. I am so pleased you have found this space. I hope you’re doing okay today?
It is no wonder that you are in shock and somewhat lost. Often people find this part before diagnosis, such a difficult time as you only know so much. Once a full diagnosis is given you can really understand what this that means for you and how you move forwards.
Having a list of questions is a really great tool to ensure you get a chance to ask everything that has been concerning you on the day of your appointment.

Others have already given you brilliant advice and support but i will add that if you ever wish to talk anything through, please do know that our helpline is open 7 days a week- Blood cancer information and support by phone and email | Blood Cancer UK.

Take Care, Lauran

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Hi loopykat,
Needle aversion is not uncommon and I’m sure the nurses will be accustomed.
As for the marrow biopsy don’t fret. When you having the aspiration you’ll be on your side with a local

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Opps fat fingers again arghh!
Where was I ha
Your bum will be locally frozen, you can’t see whats going on and you might be offered gas 'n air
Be strong and if in doubt ask those who have been there, done it and got the T Shirt.

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Hi @Loopykat personally if I had a needle phobia I would tell anyone due to approach me with a needle about it and ask for all possible forms of pain relief before procedures. I have found that it really makes a difference if I say my fears and needs.
Look after yourself

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