Hi, I was diagnosed with myeloma on Wednesday I’m so confused , worried can’t stop crying basically I’m a wreak , I’m booked in for a bone marrow biopsy on 4 th July then seeing the consultant 2 weeks later , I just don’t know how I’m going to get through the next few weeks and advice , Gill
Hi@Gill,a big welcome and I am sorry to hear of your diagnosis and how upset you are which is a natural reaction to your diagnosis plus the confusion.You have come to the right place for support .I have MGUS and found that the Myeloma UK helpline and all their on line info a tremendous help when I was trying to understand my diagnosis, plus then I found this forum and BCUK .I am sure @LauranBloodCancerUK or @GemmaBloodCancerUK will have some good advice for you if you give either support line a call.Do you know what the next step is for your treatment and do you have a Clinical Nurse to talk to ? Myeloma UK have a booklet and BCUK on Myeloma ,i am repeating myself but give them a call if you can to express your feelings about it all and get some support so you know better where you are. Keep posting and I am wishing you all the best with everything.
A great big welcome to our forum @Gill and thanks for being so honest about your feelings. I was diagnosed 18 yrs ago with another blood cancer and those thoughts and feeling come flooding back.
You have received a tremendous shock and shock is what you are experiencing.
I came home from my diagnosis and wrote my will and funeral music.
Do you have support from family and friends, anyway you are now part of our forum family and I have found no matter what our diagnosis is we often share similar fears, thoughts, feelings and practicalities.
You have now entered a world of medical terms and waiting for tests, appointments etc. and I find the waiting is the worst, my head just goes off like a washing machine.
@Bannanacake has given you a brilliant response and the best things I can say to you is to use us to say how it really is for you, if you would like to talk to someone the Blood Cancer UK support line is there for you.
Take this opportunity to write down all your fears, questions and practicalities that you want to ask the consultant.
Perhaps contact your GP if you need to talk anything through or help with how you are feeling. If you are into this the Blood Cancer UK website has some meditations.
To get through these next few weeks plan nice things for yourself, look after yourself and be very kind to yourself you are very naturally in shock.
Please keep posting I would like to hear more about you.
Dear @Gill, I am so sorry to hear that you are going through this. I must be so difficult to cope with all the feelings, information and anticipation. Please do call us if you feel able: How to contact Blood Cancer UK | Blood Cancer UK, I will be on the phones over the weekend and we are open every day of the week. Once you see the Consultant you will then be allocated a Nurse Specialist who will support and guide you throughout. Please be honest about how you are feeling and they will help you. Myeloma UK are also an excellent charity that specifically deal with Myeloma and related conditions. Please do keep in touch as we are all happy to help here on the Forum. Here are a few links that may be helpful when you are ready: Myeloma | Blood Cancer UK and https://www.myeloma.org.uk/wp-content/uploads/2018/05/Myeloma-UK-Infopack-for-newly-diagnosed-myeloma-patients.pdf. Kind regards Gemma
@Gill - I was diagnosed with Myeloma in August 2021. It was a massive shock and difficult to deal with, but rest assured you will find a way. Like others have said Myeloma UK and Blood Cancer Uk are great web sites lots of good literature to read and help you start to understand the condition, there is an understand Myeloma leaflet on Myeloma Uk which is a great place to start. DONT just Google there is lots of info out there that I don’t think are true facts and a bit miss leading.
Another idea that works for me is having a dedicated note book, write you questions down as you think of them so when you are with your Nurse or consultant you can run through the list and they I am sure will answer them for you to help, you can write down the answer then review it later as quite a bit of what they say won’t go in or stay in as it’s a lot to understand.
This is a great forum, I found it post transplant but there is a lot of people on here that had had different experiences so currently going through extensive treatment some pass that, some like you just starting the journey so there is a lot of help. Please keep asking the questions and various of us will chip in and help where we can.
Take care of yourself and best of luck
Gill, I was diagnosed with Myeloma in 2006 and am still very active so don’t lose heart. One thing that may help is to join a Support Group. Myeloma UK website should be able to help you find your nearest group. I run a group up here in the North West and I know people find meeting others is a great help.
Take care. Best wishes. Joan
Hi @Gill I was diagnosed with Myeloma in 2018 and I know how upsetting it must be to hear that you have it. I had never heard of it before a very young doctor came to my bedside and told me I had it. I just thought I had a back problem. Once treatment starts, you adapt and find strength you may not know that you have. It might not seem like it now, but it will happen. The treatment isn’t so bad and you can then move onto a great period of living life normally afterwards all being well. It might seem like a long way off and I know I tried not to think about drinking a pint of beer or sitting by the sea for a few months until it was nearer. I was also surprised at how many friends rallied round and came to visit me. They will help you no end and we here at the forum are always here to help too and listen whenever you need it. It’s ok to cry and be afraid, I know that’s how I felt. Hope you are able to work your way through this and do let us know how you are getting along. I’ve always found the people here a great help.
first of all I’m so sorry to hear about your diagnosis. I’ve recently had the same diagnosis and going through various procedures in preparation for my transplant. I can really emphasize with you and more than happy to share sone of my experiences so far. Please don’t give up hope and try to remember that the emotions you are feeling are normal. Please feel free to contact me if you’d like some moral support. Xxxx
Hi @Summer2022 I am so glad that you have found us, welcome.
How are you feeling about the various procedures and the thought of a transplant, I would still be in shock from my diagnosis at your stage?
As you say all feelings and emotions are normal.
We are also here to support you and share our experiences and the Blood Cancer UK website and support line are there for you.
Look after yourself and be kind to yourself and please keep posting I look forward to hearing more about you
thank you for your kind comments. I’m dealing with things okay at the moment but obviously have up and down days. I always believe that it’s good to talk and have found that my local Maggie’s Centre is a good place to go if I need a face to face chat. I was due to have my bone marrow transplant on 13th July but have recently contracted Covid…having worked throughout the whole of the pandemic and avoided it…I’m feeling okay but just ready to get to the next stage of my treatment. My daughter recommended this site and I’m so glad that she did. Hopefully I might be able to offer something positive to anyone accessing this forum. Love to you all xx
I am glad that you have found your local Maggie’s Centre @Summer2022, I have heard good things about them.
Yes, I have found it good to talk too.
Please keep posting how your are getting on.
Thankyou for your reply, to be honest my head is all over the place , I have my bone biopsy next Thursday but they think I have light chain myeloma and I will have to have treatment I’m scared and confused I’d appreciate any advice or does anyone else have this
I remember the soul wrenching fear of diagnosis all too well. That was 4 years ago now, and I’ve been back almost leading my old life for the past 3 years since having a stem cell transplant.
Confusius once said that we all have two lives, the second one starts when we realise that we only have one. In that way my myeloma diagnosis was the beginning of my second life, a life that I cherish, consider and look after in a more conscious way than I did my pre diagnosis life.
Diagnosis is all enveloping fear, but we don’t stay in that heightened alert state , totally preoccupied by ‘myeloma’ forever, it does get assimilated into life. One day you will realise that you’ve not thought about myeloma for a few minutes, then for slightly longer periods, and gradually it will just become part of who you are.
Try to keep hope alive, there are people who are living with myeloma as a chronic disease for 10, 20 plus years. The leaders of my local support group have been living with it for 17 & 18 years respectively. Knowledge about myeloma has developed rapidly in recent years and new treatments, including new types of treatment are being approved- even in UK- very regularly. I was diagnosed 4 years ago- you will receive a better induction treatment than I had, and will be given the maintenance drug people like me were clamouring for just a few years ago. More people will live longer, healthier lives with myeloma than ever before.
hope you are managing to enjoy the sunshine today. I’ve had 2 bone marrow biopsy’s and I didn’t find them as bad or painful as I thought they would be. I was given a local anesthetic and just felt a little bit of pressure in the area where the bone marrow was taken. The procedure is over fairly quickly too. I’m hopeful that will be the same experience for you too. Thinking of you and sending you a virtual hug…we’ve got this xxx
Mgus? I’ve just been diagnosed with this, I’ve read post, I am really worried as most of the people go on to have more serious cancer.
A great big welcome @Gwen, as you are newly diagnosed with MGUS you must be in complete shock and I am so glad that you have found us.
What you might find is no matter what our diagnosis we often share the same shock, fears, thoughts, feelings questions and practicalities.
When I was diagnosed I came home and wrote my will and funeral music and I am still here 18yrs later. Also research and trials are going on all the time and new treatments coming out.
If you would like to talk to someone the Blood Cancer UK support line is there for you and so are we on the forum.
Do you have support from family and friends.
This time will give you the opportunity to write down all your fears, questions, practicalities ready for your next medical appointment.
Look after yourself, be kind to yourself and I look forward to hearing more about you.
Hi@Gwen ,hello and welcome .I have had MGUS diagnosis for 2 years and I get my bloods checked every 12 weeks till the paraprotein settles.MGUS diagnosis is alarming as you say you are reading of others going on to develop blood cancer.I t depends on a lot of factors so its not a given that you will.Was it detected in a routine test or was your Dr /Consultant looking for it ?Mine was picked up by my Neurologist and then followed up by my GP. Do you know the name of your MGUS and has anyone explained it to you.Myeloma UK have a very informative web site and support line as BCUK do snd as @Erica has said .
Its a lot to take in so keep asking questions and posting .
All the best
Thank you for posting and welcome to the Forum. I really hope that you find this space supportive and informative. Here is our information on MGUS Monoclonal gammopathy of undetermined significance (MGUS) | Blood Cancer UK and as you will read only a very small percentage of patients with MGUS go on to develop a blood cancer. I do understand your anxiety with your recent diagnosis so please do get in touch if you need to talk things through How to contact Blood Cancer UK | Blood Cancer UK.
Hi @Gill I have been thinking about you, how did your bone biopsy go?
Be ever so kind to yourself your feelings of being scared and confused are so natural.
I find writing down all my questions and fears really helps me otherwise my mind goes blank.
Please let us know how you get on and how you are feeling…
Look after and be kind to yourself.
Thankyou so much for your kind message , I’ve had the biopsy it went ok , Get my results on 13th July , I also received a letter from the hospital , and under diagnosis it said
IgA Early MGUS with lambda light chain , no idea what that means would love to hear from anyone else with this