Hi @Clovy14 - I’ve just sent you a direct message with a couple of suggestions for troubleshooting the issues with not receiving the notification alerts. Let me know how you get on - we’re more than happy to help and find a solution. Take care, Rebecca
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@Nichola75 @Erica Thank you all! You guys are too awesome. Christmas I have always found a melancholy time… I don’t know. So much family is gone- being a kid was great during this time but I’m always filled with such worry- about future of parents etc. it’s just a holiday that makes me sad. I lost dad 2 years ago, and he loved Christmas (and me snd my girls so much) so it’s extra heartbreaking I think. I’m an over thinker by nature- snd always for the worst- which is why MGUS is just not a good match for me. With all of you guys here I can settle that part of my brain a bit so I am so thankful!
As for school all I could say is YUCK! I teach 11-13 year olds and I get that yours are probably much better- these elementary kids I worry about the most.
Good luck with it all!!! I’ll think of you when I go back from break!
@Erica how is the Hubbie?
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Hi @Clovy14, yes this time of year is weird isn’t it.
I also find it is a time for reflection for the people we have lost along the day and the people who brought us together.
I find overthinking is the worst for me and this again is a time of year that it is easy to slip into it.
I went out for a lovely walk this morning adorning my pointy Santa hat and a garland and of course my mask and I thought I looked rather fetching !!!.
Hubby is fine and busy doing things in his study.
You take care and spoil yourself.
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Did you have your egg and chips for lunch @Erica?
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Oh, Nicola, we had a traditional dinner prawn cocktail, a chicken roast (the biggest plateful you have ever seen) and Christmas pud, custard and ice cream.
Then a nap in the afternoon.
Just after 1pm as I was serving up the mains and John’s niece rang from Germany. John always leaves me to answer the phone because he says it is ‘always’ for me, to be fair it is.
So I turned off the steamer and oven and chatted to her as she was feeling low. Well the sprout are traditionally overdone on Christmas Day.
The kitchen is now officially a help yourself area.
What about your day?
Sounds like a lovely day @Erica. I hope you managed to cheer your niece up as well? Traditional dinner and prawn cocktail for us as well! Totally over ate and lots of left overs! The girls are still managing to find space for sweets and chocolates though. Considering the challenges this year I’ve had a lovely day X
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Follicular lymphoma is not a good thing for me either. I like to be doing something to feel like I’m fighting it. Overthinking on watch and wait is a nightmare for me!
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Hi @Clovy14. Just wondering how things are with you at the moment. Its been a crazy couple of weeks hasn’t it!
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Just checking in with you @Clovy14. Any smow where you are?
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Hey!!! Again- sorry such a late reply- still not working this site right I don’t think! I’ve been super busy with school and kids and yuck lol! Shocked January is over- come on summer!!! We had snow a few weeks ago and expecting 4-8 inches Monday- praying for the 4!!! I’ve been grumpy as usual- just overtired I think! How is all going by you- where are you located?
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It’s lovely to hear from you! Same as you, super busy with working from home and home schooling. My youngest is quite anxious at the moment so that’s been an added stress. They are desperate for snow though! I’ll keep my fingers crossed that it falls for you. I’m exhausted to and as much as I love the snow I think I need a bit of sunshine to brighten up my days! I hope you’re looking after yourself?
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just been diagnosed with MGUS my head is in a tailspin i cant sleep just trying to get my head around it …you all sound so lovely and calm on here
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Hi @1Crocodile2 a warm welcome to the forum. It’s totally understandable you’re feeling this way. Gave you got much support around you?
In case it’s useful we have a factsheet on MGUS here but also we’d be really happy to talk it through with you on the phone if that might be helpful at all. If so our number is 0808 2080 888.
Hi @1Crocodile2, a great big welcome to our forum, I am so glad that you have found us so quickly after your shock diagnosis.
You say that we all sound so calm and I think that is because a lot of us are not newly diagnosed, I was diagnosed with a different blood cancer 17 yrs ago, but just reading your post brings those feelings you describe straight back to me.
It is so natural that your head is in a tailspin with thoughts and feelings whizzing around, I found that I could not get my head round it for a very long while.
How could I explain to others what I didn’t understand myself?
I felt in a bubble with the world going on around me, a new medical language I did not understand.
You now have a new family, us.
Perhaps start writing down a list of fears, questions, symptoms, feelings, thoughts and practicalities to ask your medical people
I would say just give yourself time, be kind to yourself, you are very naturally in shock and please keep posting so we hear more about you. Take care and @Alice_BloodCancerUK has given useful information as well.
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Hi @1Crocodile2 and welcome. @Erica and @Alice_BloodCancerUK have given you some great advice.
That diagnosis is so hard to process and your emotions will be all over the place.
We are a calm bunch on here but we have all experienced those feelings and understand what you are going through. I know I’m not calm all of the time and vary day today and I’ve come to accept that that’s ok.
Hopefully we can support you and be there for you when you need us. Be kind to yourself and take the time you need to look after yourself.
Keep sharing X
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Hello all, I just wanted to let you all know of a study called OxPLoreD, who are looking for participants with MGUS. If you’d like to know more, you can find out about the study, here by clicking on the patient information sheet - Trial Information — OxPLoreD
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Hi everyone just got a mgus diagnosis and wanted to see if anyone could help me make heads or tails of all this info.
The doctor was really vague with his answer. I do know I do not have a lytic lession on the back of my head.
If someone could please help and not sugar coat anything thank you.
PATH
-1/4/21
FINAL DIAGNOSIS:
BONE MARROW, ASPIRATION AND BIOPSY:
- NORMOCELLULAR MARROW WITH TRILINEAGE HEMATOPOIESIS
- MONOCLONAL PLASMACYTOSIS WITH KAPPA LIGHT CHAIN RESTRICTION, PLASMA CELLS CONSTITUTE APPROXIMATELY 5-7% OF MARROW CELLS, CONSISTENT WITH PLASMA CELL DYSCRASIA (SEE DESCRIPTION AND COMMENT)
- MORPHOLOGIC FEATURES NOT DIAGNOSTIC FOR MYELODYSPLASTIC SYNDROME
- SEE GENETIC REPORT IN KP HEALTHCONNECT
COMMENT: Correlation with clinical, laboratory, and imaging features is suggested.
Chromosome
46,XY[20]
FISH
POSITIVE for the IGH-FGFR3 t(4;14) translocation (55% of isolated plasma
cells).
POSITIVE for monosomy 13/deletion 13q14.3 (28% of isolated plasma cells).
NEGATIVE for the following: deletion of CDKN2C (1p), gain of CKS1B (1q)
and/or gain of chromosome 1, gain/loss of chromosomes 5, 11, and 17,
partial deletion of chromosomes 5q (EGR1), 16q (MAF), and 17p (TP53),
translocations of IGH-CCND1 t(11;14) and IGH-MAF t(14;16).
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Hi @Curtis what I can do and would like to do is to really welcome you to our forum, what I cannot do is answer your medical questions. By the look of the length of them perhaps someone you are dealing with medically might be able to break them down for you, however you have now entered a parallel universe with a new language.
What I can reassure you about is that the length of information you have given is not necessarily in proportion to the severity of your diagnosis.
The Blood Cancer UK website also has a lot of useful information on there.
What we often seem to share on this forum is similar fears, feelings, thoughts, questions, symptoms and practicalities.
I certainly remember the feeling of complete shock, the isolation and feeling in a bubble with the world going on around me and it might be heightened for you as we are in Covid times.
Perhaps now is your opportunity to write down the questions you want to ask like what do these results mean and what are my options. Keep asking for clarification until you really understand and don’t be afraid of asking that follow up question to.
You might want to have a list of your symptoms, medical history, medications, allergies etc. to hand.
Monitoring might be an option and it is commonly called ‘active monitoring’ or ‘watch and wait’.
We are here to support you and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk
Please let us know how you get on.
Hi’ Curtis,
Im not regular contributor but do log on and browse a lot, today I have felt moved to respond to a couple of posts I’ve viewed. I note that Erica has already welcomed you and advised you about the parallel universe with a new language that you have found yourself plunged into.
It seems that patients are inadvertently sometimes given a diagnosis and then not always given sufficient information to explain the nature on the diagnosed condition. As you have illustrated you are left with medical information that you naturally cannot understand which serves to make matters worse even if they are not necessarily quite so adverse.
From my initial diagnosis of MGUS I have learnt that for my personal wellbeing I wish to know as much as I can about my condition and regular test results. This means asking all the questions that come to mind no matter how small (eg; what is MGUS) and if required write them down beforehand. If I’m told that my bloods are stable I ask for the individual results as, “stable at what levels” is now my immediate follow up question. I still leave my appointments and get frustrated with myself for not asking something I had intended, but the more I ask the more I understand and the less stress I feel.
From your test results and from what you have written its clear that you have a lot of things you wish to ask and discuss with your Specialist. The latter is best person placed to give you the answers you seek as general information although informative is simply “general” and does not necessarily apply to your medical circumstances.
Hopefully your next appointment isn’t too long away BUT if so phone up the Dept and ask to speak with a ‘specialist nurse’ and explain how you feel and your concerns.
Although you may not have got the answers you initially sought without the sugar coating (which I too dislike). I hope you’ve gained something positive and know that there are others that fell into this parallel universe with an MGUS banner too plus others with shared experiences who will take time to assist those such as yourself.
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Hi @Curtis and welcome to the forum. It’s great to meet you and I’m glad you have felt able to share your questions and concerns, it’s all very overwhelming isn’t it and so frustrating when you have the need to understand but not the medical knowledge to make head more tail of results. @Erica and @Shaka have both given great advice. I think giving the support line a call would be really useful - if only to talk through questions you may want to ask etc. Please keep us updated and let us know how you get on. Sending extra special wishes your way 
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