Hi. I was diagnosed with smouldering myeloma nearly five years ago. I had an MRI a couple of weeks ago and my consultant rang last week to rush me in for a bone marrow biopsy. There were abnormalities, she said. I have the biopsy tomorrow.
I am v scared about it all. I kind of persuaded myself that I was going to get away without “proper” cancer so I am now so worried. That sounds so self piteous but I can’t help it!
Ever since she rang I have been having awful back pains, no energy, feel sick. It’s like it was a she pressed a button: I’d been feeling fine before that! Feel so grim tonight and just wanted to reach out to the great people on here and ask to think of me tomorrow.
And I will think of you when you need me.
Mark x
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Hello @md67. Thank you for sharing with us how you are feeling. I am sure many of us will identify with the emotions you express. I expect you are in a whirl and have so many thoughts going through your head! We are all here for you on this forum, so please keep posting and let us know how you are doing. Don’t forget you can always contact the Blood Cancer UK support team if you would like to speak to someone. Thinking of you very much and sending warm wishes. Willow
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Thank you so much Willow! Definitely feel like my head is all over the place. Lots of different emotions. It’s such a blessing to have a place like this to express it all
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I’m so sorry to hear this @md67 it sounds like such a worrying and uncertain time for you. We will be thinking of you today and we’re here on the support line if you want to talk anything through before or after your bone marrow biopsy. The number is 0808 2080 888. Please do let us know how you get on if you feel up to it.
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Hi @md67, yes, I know those feelings of scare, anxiety and worry.
I do not think medical people sometimes realise the effect of their words, especially on the phone.
Please do not think you feel self piteous, I think your feelings are very natural.
We are here to support you, we understand your thoughts and feelings and as others have said the Blood Cancer UK support line is there for you.
Mark, please let us know how you get on tomorrow.
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Thank you so much for the responses. I felt very supported. I don’t want to go into too much detail about this morning but suffice to say it’s been a very unpleasant morning. I had to ask for gas and air which I would advise anyone to do. They couldn’t take the sample (?) from one side so had to try the other. They “think” they got enough. But they were lovely and put up with my babbling on, crying and other random questions (some serious some less so). At one point I heard them talking about crumbly bones. It makes me wonder about watch and wait but I suppose they know best. Or I hope they do. I imagine I will be called in to see consultant in next few days. Feels like it will be a new stage in my journey with this thinf. At the moment I feel very much not brave, very much scared and uncertain. But I guess we are good at coming to terms with new realities. Whatever they are! I’m so grateful for the support from people who genuinely understand. It makes the world of difference. Mark
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Hi Mark, I think you are very brave and very naturally scared and uncertain.
You are posting how it really is for you, you have got through a very unpleasant, painful morning, you actually asked/agreed to gas and air, you asked questions and now you are going through the waiting game, which is so difficult.
I think perhaps you might need to be kind to yourself and spoil yourself, you deserve it.
We and the Blood Cancer UK are all here for you so please keep posting.
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Definitely be kind to yourself as @Erica says. This part of my journey was the most difficult for me and I think it’s when it all really hit home so and I really understand how you must me feeling. Please please take care of yourself and let us know how you are doing X
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Thank you so much Nichola, Erica and Alice, I cant tell you how much your words help. I am kind of ok today, sort of taking every day as it comes. I am in a lot of pain from the biopsy, they didn’t half give me a once over! Didn’t sleep last night as a result.
I suppose there are lots of things going round my brain and obviously lots to think about. I tend to catastrophise about most things so you can imagine how all this is affecting me.
My youngest son came back from school today saying he had to isolate because another pupil has the virus: thankfully it turned out to be a false alarm but we were preparing to isolate me. I am a bit confused that the govt seems not to have said anything about shielding but I guess they are not changing the policy.
Anyway, thank you again. I will keep in touch if that’s on. Should I just use this thread or go elsewhere?
Thank you
Mark
PS one of my big worries if I have moved from smouldering to active is telling my parents. I’ve kept it from them - they are 85 and 84 and don’t really need the stress of this. But equally I think they would want to know. Very hard!
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Hi Mark, It is always a dilemma when and how to tell the ones we love that we have a blood cancer. Nobody can tell you what to do but I thought perhaps it was rather telling when you say ‘I think they would want to know’.
I did the opposite and immediately rather blurted it out to everyone, I could have been more sensitive. I also told my son over the phone and in retrospect it would have been far better done in person.
It was a great shock when I was given my diagnosis, so it will be to be the same for family member, so I think I should have asked them how they were feeling and if they had any questions.
Please have a look round our forum as there are posts on teachers and children in schools were someone is tested Covid positive and also telling children and loved ones about a blood cancer diagnosis.
It is up to you where you post on our forum although there are categories on the front page and Blood Cancer UK will move a post if they think there is somewhere more appropriate for it.
The main thing is that you post so I look forward to hearing more from you.
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Morning Mark. As @Erica said it’s just great that you are posting. I learn a lot from reading the other threads so they might be useful to look at. However, it’s great to hear from you wherever you are. Please just keep us updated on how you are getting on. I’m not very good at waiting on results!
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We hope you’ve been doing okay Mark?
It does sound like there’s so much going on for you right now, and as you say, there’s also that added worry as to how you tell people about your condition. It such a personal choice, and what’s also important is how ready and comfortable you feel Mark. I echo Erica and Nichola, we do really encourage you to keep reaching out for support, be it on this thread or one of our other threads too- the forum community will always be here for support.
Su
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Hello Su and all. Thank you for your messages. I am doing ok I guess - thank you. I am still really in pain from the biopsy: they didn’t half prod me about on Tuesday!
The hospital rang today to get me to go on on Wednesday next week to see the consultant. To be honest I would just like to get that over with so I can work out what happens next and how to deal with it.
I keep thinking that if my myeloma has gone active it is my fault: for getting it in the first place and then for not looking after myself as well as I should have since diagnosis. Then I get cross that watch and wait seems such a fatalistic thing but then I realise that what else can you do.
As you can tell I am babbling and thinking a lot!!
Thank you so much for being there for me: I am finding this so helpful.
Mark
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Hello Md67. My heart goes out to you. I identify with many of the feelings you express. I have felt the same, especially around the time of my diagnosis and for quite a while afterwards. I have a different blood cancer but a lot of the emotions we experience are very similar. Please try not to blame yourself because that won’t help you. Three things that someone said to me in recent years have released me from the burden of these negative feelings. They are … 1) It is not your fault. 2) You are not alone and 3) Share your story, ie, talk with others, like on this forum, don’t bottle things up and realise that it’s okay to feel these emotions. It’s okay not to be okay! Hope this helps. Warm wishes. Willow
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Good luck Mark. It’s an awfully worrying time for you. Please phone our support line if you wish to get some great advice and help. Looking forward to a good outcome for you.
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I completely agree with everything @Willow has said. Try not to give yourself such a hard time. I wouldn’t call it babbling - just expressing yourself and if you can’t do that on here @md67 where else can you do it! Be a bit kinder to yourself 
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Thank you again so much everyone. I am going to the consultant on Wednesday. I am trying to just focus on one day at a time and honestly I couldn’t do this without your support. I just want to know the position now so I can try to make sense of it and work out how to handle it.
I am still in a lot of pain from the biopsy.
But I had a lovely weekend watching my sons play football. There isn’t a feeling like it - the joy and pride of seeing them doing their best and enjoying it so much is so uplifting.
Just to give us a new challenge one of them though now has to isoliate because one of his friends has covid. So I am isolating from him and the rest of the family within the house. I did wonder about moving out to a hotel or something but I guess we can work it. 2020 really is a joke of a year!!
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So glad you had a lovely weekend after what sounds like a difficult week. Really hope your consultant meeting goes as well as it can on Wednesday and that you get some more clarity around next steps etc.
You may already have it but here’s our Myeloma booklet in case it helps you formulate any questions you might want to ask - https://media.bloodcancer.org.uk/documents/Myeloma-Blood-Cancer-UK-info-booklet.pdf
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I’m not in your place exactly but I had to chime in- psychosomatic pain is something I deal with after every questionable finding. But then my anxiety goes through the roof and that only makes it worse. I’m sorry you are feeling this because I 100% get it and it’s not easy! You are not alone!
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Hello everyone,
I have had my sobering session with the consultant. Sure enough I start chemo in a couple of weeks. Life changing day I guess. Feeling ok (but also in a pub 
). Lots to think about and there are going to be rocky days I guess. I’m almost relieved to at least know the situation. But also scared and worried and a little bit angry. So lots of emotions.
I suppose what I need to know is that there is hope and if I can hear that it will help.
Mark
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