Hi @Erica,
I will do, but it might be a long wait…
However, I will ring outpatient bookings to see if the referral has been accepted. If it has, I will let the secretaries know I am happy to take a short notice cancellation.
And yes, I do worry about it bleeding.at inappropriate moments.
Helen
Best wishes
Hi Chris
Welcome to the forum. I joined last year after being diagnosed with Chronic lymphocytic leukaemia (CLL) and have found the forum extremely helpful , supportive and informative. I’m on a watch and wait at the minute It’s a confusing surreal time after diagnosis, take your time and you have found the right place to express your worries and feelings
Hi Chris,
Sorry to hear this. I also have you have been recently diagnosed with MGUS and am also relatively young, 37, putting us in a bit of a rare category (so I am told). Having said that, I feel like more and more people popping up around our age bracket with this disease (not sure if it is considered a disease!)
Can I ask, what makes it high risk as you mention? Did you have a bone marrow biopsy?
You are right in one of your other posts, it is a blessing in disguise perhaps knowing in advance but also I understand the feeling of the heavy burden. I have days where I don’t think about it, but then dread the bloods taken and catchup with the haematologist (next week for me!) to see what my protein in blood is doing! I have stopped researching it as I just catastrophize the situation so now I tend to focus on “the blessing in disguise and that it yet isn’t Multiple Myeloma” and to live every day and not worry about the small things anymore.
Bryan, from Australia.
Hi@Chris,thank you for your response.I hear what you are saying about feeling isolated at times yes it can feel like that for me too .I sent MGUS fact info to my adult children and Brother but have had responses of" youre Ok because it could take years to go anywhere and MGUS isnt supposed to give you any symptoms!".My husband listens to me but I try not to go on too long. Ive found it hard emotionally so I have been doing lots of writing and reading CBT to help myself plus walking everyday and hydro pool ,swimming once a week.I hope that you can find time for yourself in the midst of your busy family life to keep yourself well ,something that works for you.Although it causes extra stress having the 4 month blood tests it is 100% better than being caught out as often happens .I keep telling myself that.
look after yourself.
Sorry ,and the 12345
Hi Chris
I’m sorry to read this but you are in the right place for information and support, I have found this site very helpful and it helped me to tell my parents which was something I didn’t want to do but with the correct non scaring information it made it easier . I feel more In control of my needs and wants when talking to the Gp and somewhere I can turn to . I wish you well look after yourself
Can I very kindly say that keeping things to yourself, pretending it’s not happening, thinking that friends and family can’t cope, don’t want to burden them isn’t very good for stress and anxiety levels which can turn into depression
I know we all react differently and I appreciate that.
It can be very comforting to have an understanding friend or family member
Family can be upset that they didn’t know and then come across as not caring
We need to talk about our illness whatever stage it is at and no stage is more difficult to deal with than the other
I often tell friends that when they are faced with a change in their well-being that I’m not worse than them because of cancer I appreciate that when you feel ill you feel the same way that I do.
There are no leagues for feelings they just are.
I also recommend counselling if you can get some as finding out you have an illness is a change and we want to stay the person that we are
Through counselling I grieved for the old me and then started to accept that I was still me but me with myeloma
Myeloma uk have booklets that you can hand out to friends and family
They can also be helpful in having that conversation you can look through the booklet together
The first step of discussion is always the hardest
Reactions will vary from interest to lack of interest don’t know what to say wanting to do everything for you want to make you better give you nutrition advice medication advice, distance themselves
And that’s ok because their reaction is their way of handling/processing the information that their loved one is about to die on the spot (they aren’t)
I said to my manager at the time why does everyone keep saying sorry I don’t want them to be sorry I want them to have a cry shout and then be positive I can get through this
He said, what do you say when someone tells you this sort of news
I thought for a moment and said errrr I usually say sorry to hear your news and he asked me why and I said because I didn’t know what else to say
Hi Chris
Totally understand your situation and it’s a hard place to be but you should try to reach out to your family too I know it’s loads to process but sharing does help and you will always get a kind or positive response from here.
Be kind to yourself and I send you my most positive and best wishes.
Hi
I was diagnosed with MGUS in 2014 when I was 53. I was put on watch & wait and had blood tests every 3 months. Following a further bone marrow biopsy in 2017 I was told it had progressed to Smouldering Myeloma. I was to stay on watch & wait 3 monthly but the Haematologist said that fully expected that I would need to have treatment at some point but couldn’t say when that would be. I am still at this stage but my paraproteins and light chains are slowly increasing and I have bad bone pain. I am awaiting blood test results again so I am very anxious at the moment. I would suggest you stick to Blood Cancer UK or Myeloma UK for reliable information. It is scary … I remember people saying not to worry but of course you will worry. I only really speak to my hubby but keep a lot to myself. Sometimes you just need to talk to get it off your chest though.
As Erica says we all support each other as we understand how each other feels.
Take care
Yvonne xx
Hi Yvonne,I was glad to hear how you are since your last post and was wondering how you were doing .I am sorry to hear that the bone pain is persisting and it is a hard one to treat.
I heard that Jeremy Vine did his Medical Monday on Myeloma,I listened to it on BBC Sounds it was intersesting and someone came on talking about MGUS.
You say it is a worry and you are right and the prospects of it develpoing are ,“scary” .
Last November I asked for the Light chain test to be repeated ,first time 2020 I didnt have one so the Haematologist said it was “reassuring.”
This time its now an abnormal level so that is something new for me and the paraprotein continues to rise slowly .
Ive had a flare up of osteoarthritis so GP ordered X Rays so im hoping it just shows wear and tear.Its been painful and it gets you down but I keep on with the exercises ,hot/cold copmresses all help.
I dont know how you manage the bone pain so I hope you get a break now and again .
Waiting for results is the hardest so I am with you on that one.
I have my blood tests coming up and am very anxious. I agree with everyone’s analogy it’s like a licking time bomb. I get pain in my left ankle but then it’s goes and comes back a few days later and other joint pains - is this what people are describing or just my old age 59.
Hi @Gilly1712,
I have multiple joint aches and pains and other degenerative changes, have MGUS and am aged 63. I think it is best to get any troublesome pain checked out, if you can, as there can be many causes and correct management can prevent problems further down the line. I say “if you can”, because it has taken me twenty years of complaining of knee pain for a GP to finally agree to an Xray!
I think the big red flags for Myeloma are pain in the lower back and rib pain.
Helen
Hi @Gilly1712
I have just seen a message saying this is the first time you have posted.
So welcome to the forum, and thank you for posting. You raised a very valid issue:- when is this ache or pain due to ageing -when is due my blood condition.
Best wishes
Helen
HI @Bannanacake
If you dont mind me asking, how often do you do the hot and cold compresses and for how long? Cold compresses were recommended for me by my physiotherapist as well as exercises .
Helen
Hi @helenfwallace,I dont mind at all .I use ice wrapped in a tea towel to protect the skin but only for up to 10 mins at a time .
You can alternate hot/cold .
Www.versusarthritis.org
Are very helpful with advice ,exercises support.
I also have a long bean bag I microwave and slap on my shoulder /spine every morning ,then stretch .
Sorry you had such a long wait for your xray.
I was releived to get my xrays now waiting for the results.
I use voltarol gel when its bad .
Hope that helps.
Hi @Bannanacake,
I have used flexiseq during flare ups, but it is expensive. I currently trying paracetamol 2 three times a day.
Best wishes
Helen
Hi Chris,
Well done taking the important step to post, it’s not easy but I hope you will find, definitely worth it! I am on “watch and wait” for Chronic lymphocytic leukaemia (CLL) and whilst it’s a different diagnosis, I can relate to the fear and rollercoaster of emotions that come with a diagnosis but no treatment yet.
I am 45 and was diagnosed 8 years ago,
am grateful to not have something worse but also it’s ok to feel rubbish about it too, not everybody is going through something so big - and it is big, and it’s ok to admit that it can be daunting. We are here for you. Sometimes it’s easier to talk to strangers than to your nearest and dearest. I talk to a psychologist at my hospital oncology dept, I asked to be referred to him and am so glad I did, those chats keep me going. Might be a help to you, too?
Stay in touch - we get it!
Firefly x
Hi @Gilly1712 a great big welcome and you have raised a question a lot of us ask ourselves. It is easy for me to put all my symptoms down to my blood cancer, but sometimes it can be something completely different.
As a 73 yr old I think that 59 is very young to me!!
My rule of thumb is if it is a new symptom then I get it checked out with someone
medically that knows my medical history etc.
I also feel anxious till I know the reason for something
Please do let is know how you get on and look after yourself.
dude - they thought i had MGUS also but that it was ‘smouldering’ and might not develop…but then they changed their minds and diagnosed me with Chronic lymphocytic leukaemia (CLL).
welcome!
I am having symptoms and can’t get an earlier appointment at the doctors (2 weeks time) my diagnosis MGUS but I’m suffering with the following. Hot flushes, eyes jumping, fuzzy head, nausea, sleepless nights, change in bowls. Should I ring haematology my yearly blood test is due 29th of this month?