Hi @Maggie1 I found that good family and friends were more honest with me when I was more honest with them.
I reckon that slow and steady wins the race.
Be very kind to and look after yourself
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Hi Maggie, what you have to remember is that everyone is different and will react differently so take each day as it comes and dont fret about what might happen. You can get counselling referral which might help. I had a first session cos its hard not to be so anxious xx
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Im reading through this thread and ive had the same! ‘You look well!’ Like what did they expect i was gonna look like?!?
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Yes, I’ve had that too - never quite know how to respond. I know they mean well - if they could only see into my head!
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I’m in my sixth week of treatment But I still find the diagnosis really hard. I was so healthy and fit it came out of the blue. Sometimes I seem to be handling it really well and others my mind just goes down a negative route and it’s a real struggle to pull out of it
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Oh @Jonoula a great big welcome to our support forum.
As I read your post I remembered having similar oscillating thoughts and feelings to you.
I personally thought it was my shock process and I reckon my thoughts and feelings have been on high alert ever since my diagnosis. Sometimes they are not even logical.
Yes, I certainly think that it is far more difficult to get myself out of the negatives.
The Blood Cancer UK support line is there for you on 0808 2080 888.
Personally I would say give yourself time, be ever so kind to yourself and really look after yourself and please do keep posting.
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I’m definitely still in the shock phase - just had my 5th treatment and still trying to come to terms with it all. Some days I almost forget but then I get days when I feel so overwhelmed. Everyone keeps telling me how strong I am but I’m not really and I’m beginning to think I need to stop trying so hard to be the Me everyone knew before.
I’ve got three wonderful daughters but I’ve been doing the Mum thing and keeping how I really feel from them - which means my husband gets all the flak. They’re all adults with their own families but perhaps I should be leaning on them a bit more - at least that would give hubby a break 
Glad I found this forum
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@Maggie1 one of the hardest things I have found is to ask for and receive help.
It comes from childhood.
I have found opening up to my son has meant that he opens up more to me now.
Be very kind and really look after yourselves and please do keep posting
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How are you doing Maggie? Ive not replied recently as ive just had my stem cell transplant at Kings. Ive been home 2wks now. When i went in, i was more anxious then in fear or side effects to come and how i would be after. I cannot fault the care and attention i had whilst there. They are on top of everything. I was fearful cosi felt the hardesthurdle was at the end, i did have tough moments but i was advised to take it 24hrs at a time and i am through it now, home and far better than i thought i would be. Try not to compare to anyone else because what we experience is all different but you can get through it and come out stronger xxx
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Hi @MariaWatson,
I’m sorry I haven’t responded earlier but we’ve had yet another family tragedy, 2025 has not been a good year for us.
My youngest daughter was pregnant with her first child, which was a such a positive event after my diagnosis, but on 31 March she had a stillbirtth at 24 weeks. Her routine check up had found no heartbeat and she had to deliver her much wanted daughter knowing she had already died. It’s only now I can write about this and it still brings me to tears.
It has been such an awful time for us all. Her two sisters were devastated too and having to explain to their young children that there would not be a new cousin was so hard. It has taken some time for us as a family to deal with this and it pushed my diagnosis far down the list of worries. I’ve been more concerned about my daughter than my own illness.
I’m about to start my own transplant journey. I spent the day at Kings last Friday and am due to have the high dose chemo on 27 June with the harvest on 7 & 8 July. I’m not dealing with it all and it seems too much at the moment. I seem to be spending a lot of time in tears. My husband has to deal with it all as I’m trying to keep my cancer concerns away from the girls. I’m finding it really hard to find my usual upbeat persona.
I also wanted to say that I’ve just reread the posts and thank you to all those who responded.
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Just joined this forum & I too was only diagnosed with myeloma two weeks ago & my next bloods are in 2 months. Reading all these comments gives me two feelings, one of support & I’m not goinng through this alone but 2nd, worried to know what next. My family/friends have been fantastic, having a roller coaster of emotions (ups & downs) which I haven’t experienced before. Another thing I’m struggling with is losing control of my life/plans.
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Hi Maggie!
Apologies from me for my delayed response! How are things for you now? I can see you have been having quite a testing time. Was that your daughters first pregnancy? I’m so sorry to hear that story. Very devasting for her and everyone. One of my friends lost their child in a similar way and I think they did something to help her next time around.
Just reading above you may well have just been through your stem cell transplant as you said you were having the melphalan on 27th June? Or perhaps you are still in Kings? Personally i think about a week after the melphalan was when my side effects were worst, but once your neutrophils pick up you start to feel better again not too long afterwards. How are you coping with it? it is tough in there isolated but I just watched lots of series of programmes on my tablet, have you got anyone bringing you ice? An ice bag keeps in the fridge for about 2 days. That was my godsend.
Let me know where you are at, and I am happy to help you along the way. I’m 4 months post transplant now. It put me into remission and i’m coping really well.
xx
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We all react differently to treatment and a stem cell transplant can often be a complicated and miserable experience but my experience was similar to Maria’s. The worst side effects kicked in on week two when I was moved to my own room. It can be physically exhausting as you are constantly being monitored and sometimes have to have checks at unsociable times of the day. My advice is to try and have a little walk each day just so that your muscles are active. Also make sure you have some sort of entertainment, be that a kindle or a device you can watch TV on or listen to music. I was in hospital for three weeks and was discharged once my neutrophil levels went back up. I regained my strength quite quickly after that and was back at work a couple of weeks after discharge. Hope it all works out for you.
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