Had my first appointment today with haematologist

So after 10 days of pure angst, today finally came. I set out expecting to be coming home with news of a myeloma diagnosis, but instead I don’t know! I’ve now been referred for a PET scan, and this will be followed by a biopsy. They explained that the lesion in my head and the paraprotein isn’t enough to make a call. There is also still a slight hope that both these things aren’t related, but I know that’s clutching straws! The haematologist did say that since the lesion has been there for a year, he would have expected a more aggressive growth if it is a myeloma. So now the waiting for the PET scan begins, and while my family are breathing out a sigh of relief for now, I’m a little bit more cautious as the paraprotein is still there.
But for now, I’m going to carry on with business as usual best I can. It’s hard to fill the gaps waiting, isn’t it!
Take care everyone


Oh @Emma13 the waiting and not knowing just goes on and on for you doesn’t it.
At least you are are having a lot of tests.to really find out what is going on…
This is the one place where you can really say how it is for you.
Business as usual. as best you can, is a really good philosophy, waiting and not knowing is a horrible time and as you say so well, it is hard to fill the gaps, isn’t it!!
You are only human, as we all are, be kind to yourself and please do keep posting.


Hi @Emma13

I really can’t begin to imagine the number of emotions you’re feeling. Sounds like your a bit of a puppet on strings with different ones pulling at different times with different strengths…

The lack of clarity makes it really difficult to know how to feel and how best prepare yourself for tomorrow let alone the future physically, mentally and emotionally.

Take some comfort, though it’s hugely frustrating that though you’re being referred with no one giving you and answers that they want to check for everything before giving you news that is likely to change the direction of your life in some form of capacity. You definitely want conclusions based on a wealth of tests and consistencies rather than on a whim or based on one persons opinion

I think while you’re powerless to do anything and things lie in tests and their results…continuing as you are as best you can is wise.

But don’t feel like you have to be in denial or thinking/preparing for the worse…

What you’re going through is big and you are worthy of support and expressing how you’re feeling and thoughts you’re having.

The support line and us here are, and hope you feel a bit less alone knowing we hear you and are here for you.


@Emma13 on my not sleeping and too tired moments, I am binge watching House. The one reoccurring theme or plot is the path to the diagnosis is as much about ruling things out as to what it actually is.
Much like us on our cancer journey, we are but Hobbits stepping out of our front door into the river of life, our cancer can take many hunts and turns before it is drawn out into the sunlight (wear sun cream).
It is frustrating, draining and like trying to find the missing bit of the 2000 bit jigsaw you have spent a summer doing.
I discovered that the way for myself during this period is to chat on here, look at others stories, read real science rather than Doc G and remember that some of these things are just like mist in the morning sun and disappear, the others require you just to stand still and listen to the world.
One word of caution, the PET scan, they fib, never saw a cat, dog or bunny rabbit at all :wink:


Thank you so much for your reassuring comments. Ive a few really excitung work projects id taken off the boil as i waited for today, so ive decided that tomorrow theyre going back on the boil and i’ll keep planning for them to happen rather than put my life on pause like i have lately.
I must also start watching House! Ive a concert too on 10th March that id kind of written off too so i can now look forward to tjat again, knowing my next big results day is 20th.
This forum has been a lifeline. Thank you so much x


That’s great that you have enjoyable work projects and leisure activities planned. I can actually “hear” a shift away from angst in the tone of your writing! Hang in there :people_hugging:


Hi @Emma13. So sorry you still have to wait. It’s so hard isn’t it! It sounds like you have some things to look forward to so try and focus on those. We are always here when you need to offload X