Morning, I was only diagnosed 5 weeks ago and still coming to terms with it all. I think it’s been such a shock as I didn’t have any obvious symptoms and it was picked up on a GP blood test. I think I was a bit blasé after my first two chemo sessions but this third one has made me feel awful - shaky, tired and really just not me. Is the effects of chemo cumulative or will my body get used to it? And any advice on coming to terms with the diagnosis please
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I should have said the diagnosis is for Myeloma
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Hi @Maggie1 welcome to our forum and I am so glad that you have found us.
I would say give yourself time to come to terms with your diagnosis, especially as it was obviously such a shock.
It is surprising how many of us were diagnosed in your way.
A gynaecologist found my blood cancer via routine blood tests.
Perhaps have a chat with your specialist nurse or medical team to tell them exactly how you are feeling as they really need to know.
Everyone reacts differently to treatments.
The Blood Cancer UK website is there for you and so is the support line on 0808 2080 888
The main thing is that you are very kind to and really look after yourself.
Please do keep posting
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Hi @Maggie1
I was diagnosed with myeloma after visiting A&E with a gall bladder infection two weekends on the trot. I don’t recall symptoms only those I put down to the menopause at the time.
Basically I was diagnosed on the Wednesday and started chemo the following Friday I was blase about it all.
It was a whirlwind 6 months as I spent a lot of it in hospital then onto Stem cell transplant
It didn’t really hit me until after my Stem cell transplant and I wasn’t sure where I belonged.
You can feel worse the further you get into your cycles.
What regime are you on?
The usual seems to be DVD
I will be 8 years living with myeloma this month
Happy to answer any questions
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Thank you Erica, it’s been a huge shock to me and my family and I’m finding it hard - this wasn’t supposed to happen to me! I have a very close friend who was diagnosed six years ago and I think knowing what he has been through has coloured how I feel. Things have changed since then as he was originally told it was terminal.
Everyone keeps telling me I’m so strong and positive and I can beat this but at the moment I don’t feel either of those. I will get past this I know, but just not yet.
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I’m on the DVD - and so many other drugs. Week 4 chemo later today. It helps hearing about other people further down the line. I’ve also found a local group who meet monthly - talking to other people does help.
I’ve always been an active and busy person and this has really floored me. I know I need to get myself motivated - and stop being awful to my husband! He doesn’t know how to deal with it either.
I met someone who has only had it for a few years and is on palliative care, treatment didn’t work for him, and that worried me.
Do you know how soon they can tell if the treatment is working?
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Hello @Maggie1 I am so sorry to hear all you are going through. I think all you are feeling is quite understandable. The waiting and uncertainty is particularly hard in my opinion and you have memories of your friend’s experience too. I realise people mean to be helpful and encouraging but telling you that you can beat this and that you are strong etc can just add pressure and maybe make you feel you can’t really be your true self. I have a different blood cancer to you but I have had similar things said to me in the past. I just want to say to you “It’s okay not to be okay.” You are coping with so much and I don’t know what people really mean when they say we can ‘beat’ or ‘fight’ this? It sort of gives the impression that it’s all down to us and that if we are having a tough time, it’s because we are not ‘fighting’ enough! Please go gently with yourself and if you think it would help there are people you can talk to. Personally I have found talking with a Therapist extremely helpful. Warm wishes, Willow x
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Thanks Willow, I was just having a conversation with my husband on exactly the same lines and how I felt the pressure from the ‘strong, positive’ comments. I know friends mean well and I suppose they don’t always know what to say.
I can remember my Mum getting cross about being positive when she had breast cancer. She said if one more person said that she was going to scream! She said if made her feel as if it would be her fault if she didn’t get through it because she wasn’t positive enough.
I’ve spoken to the MacMillan support team and they’re going to arrange some counselling for me - I really think my husband could benefit from it too but he’s doing the strong man ‘I’m fine, I don’t need it’ x
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Thanks @Maggie1 for your kind reply. I am glad MacMillan are supporting you. Warm wishes Willow x
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Hello @Maggie1,
Thank you for your post.
We are so sorry to hear about your diagnosis of myeloma and that you have had some negative side effects from your treatment.
We would recommend speaking to your clinical nurse specialist/ haematology team about these side effects as it’s important to keep them updated on how you are feeling.
Could I ask if the team have said how they are monitoring your disease? This may be through blood tests, but we would advise asking them so that you can have some reassurance about how they are actively monitoring this for you.
In case it is useful, we have a page on different side effects that people may experience from treatment Side effects | Blood Cancer UK each of these pages explains what happens with certain side effects and ways that may help to manage these.
In addition to this, we have a page on Blood cancer: mind and emotions | Blood Cancer UK that may help with ways to support your well-being. It is understandable the way that you are feeling and it is important to be kind to yourself and not put too much pressure on yourself to be as active if you aren’t feeling up to it.
It’s good to hear that you have been speaking with others as this can help you feel more supported, but please do keep your treating team updated with how you are feeling so that they can try to help you as best they can.
If you would like to talk things through with one of our support nurses at any point, please do give us a call on 0808 2080 888
Take care,
Emma (support services nurse)
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Hi @Maggie1 as @Willow and @Emma_BloodCancerUK have said we are all complex unique individuals so comparisons don’t really work.
As for the words ‘beat’ and fight’, ‘strong’ and ‘positive’ yes, I get so cross too and @Willow has responded so well.
You also appreciate that people just do not know what to say or how to be.
My personal remark that really gets at me is people saying ‘oh, you do look well’ when I am feeling really yukky inside.
Really good news that Macmillan are going to arrange some counselling for you.
I have realised that my husband just reacts to things differently, he is a head in the sand type of guy, there is no right or wrong way x
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Hi
You will have blood tests and they will be looking for a reduction in your light chains/pp after each cycle of DVD. That’s how they can tell how you are responding to treatment.
You and hubby have had a shock diagnosis so naturally you will have all sorts of feelings going around your head. It’s ok for you both not to be ok and if you can sit down and tell each other your fears and hopes.
If it helps write down what you want to say.
Dex can make you feel angry/happy/crying/hungry
Just take one day at a time for now and concentrate on your journey and getting yourself to some sort of remission
Myeloma is very individual to each person so my journey will be different to yours as yours will be to the person who was on palliative care
There are more treatments now than there was back in 2017 which is great news
Good to see you have the offer of counselling
It would be good for hubby too so that he can have support to know what he is feeling is ok.
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It’s good to read all the responses with feelings very similar to mine. Like you said we all deal with it in different ways. Mine is talking about it but my husband is like yours and keeps it all in. He says he doesn’t need counselling but I’m hoping I can keep planting seeds.
I have lovely friends and with some I can be me as I’m feeling now but I find with some of my groupsI’m putting on the upbeat Maggie and that can be very tiring.
Thanks for responding x
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Oh @Maggie1 you can really be you on here and that is what we all value.
What i think of as ‘setting the seeds’ my husband calls ‘trying to control’, the games we play!!!
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I know if I go on at my husband he’ll just shut down so I have to be subtle.
I had a close friend who died of cancer nearly 4 years ago and another friend has invited us and the widower for lunch - she said she’ll prime the husband and send them out together to load the dishwasher! We’ll try not to listen!
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Hi Maggie1, 5 weeks isnt long, you’ve so much to come to terms with, and i promise you will, someone said to me you’re back to baby steps, and that is so true. My diagnosis is chronic myeloid leukaemia, i refuse to give it capitals!, in June last year. Im still reeling from it , but im living with it, and loads of medication problems, almost normally, almost! Use this forum, its great, we are all out there for you, and the shivery, shaky days will get less. Be happy , keep posting.
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Hi Maggie
This is my first time using this forum but your story and the thread has resonated so much with me.
I was diagnosed in December 2022, and on reflection had been struggling for a lot of years before being diagnosed with high risk myeloma at 59yrs
I am now 18 + months post my stem cell and consolidation and living everyday as it comes.
Some days are very challenging, and I too would get cross when people would say i was strong & would beat it ! and yes that feeling that you are letting people down if you don’t get through it still lingers at times.
I’m not good at pacing myself which is frustrating but have found that breaking things down in to bite size time periods has helped me.
I, like Willow share that the most beneficial thing that I’ve accessed is counselling/psychology and i’m really pleased you are being referred. Maybe in time your husband may be open to it.
It is very early on in your diagnosis …. be kind to yourself, take care
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Thanks, Sarah. I know it’s early days and it will get better but at the moment I’m finding it mentally very hard. My husband’s younger brother died unexpectedly a few weeks ago and the funeral was yesterday - that was a difficult day for both of us.
I think I need to start telling my closer friends how I really feel instead of putting on a front. Everyone is so used to the busy, energetic upbeat me but that’s just not who I am at the moment 
It’s always good to hear from those further along - I will get there, just not yet.
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Dearest Maggie My diagnosis came after six months of severe pain: private doctors sent me to top specialists who said I needed physio. I had 7 fractures in my back. went to top doctor who gave me myeloma blood test. Was seen by top haematologist and was put on RVD I was 74! He said that I should read everything I could about it which I have ever since.
Not one of my friends understands my cancer which has returned three times! but I am now 82 and live in London. Have been in isolation a great deal and have stress incontinence and walking is terrible…lost five inches in height due to compression through late diagnosis…rvd gave me cataracts etc! I am allergic to revlimid …etc!
I feel for you hugely and can understand what you are going through: But I read the Lancet, articles from the Mayo Clinic and ASH and it does help me to feel better. Please do chat with me about anything and laugh about the whole thing. i never had chemo, all immunology and I never felt ill but I am frightened by needles!
Dear Maggie never give up hope and tell the nurses/doctors that you feel ill and ask them why! ask all other patients too. Do let me know anything that bothers you at all and we will beat this disease! huge love Lucinda x just been told I cant use a swear word! stupid website they dont understand what cancer is like as well 
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Hi @SarahP a great big welcome to our forum.
I think we all have our personal hates of things people say to us. Mine is ‘oh, you do look well’ when I am feeling yukky inside.
I am also not good at pacing myself, I never learn.
I look forward to hearing more about you, take lots of care and yes, be kind to yourself
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