Hi @Kevin1,good to hear that it sounds as though things are moving forward for you.I like the sound of phone calls and MRI scans (although not the sound they make )! 
.
All the best
Bannanacake
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Hi Kaycie ,my message was a bit random ,I’m sorry it didnt make sense to you or didnt look like anything on your results its taken me a while to work everything out I must admit.
I used to ask the Myeloma UK Nurses for explanations ,then of course BCUK.
The fact sheet on MGUS helps.
I hope that your GP has written that letter to the Haematologist by now ,its all a waiting game isn’t it!
I’m sorry to hear that your cognitive
Function is impaired that just adds to everything ,how does it affect you,?
So lets hope you dont have too long to wait for your explanation and thanks for posting 
Bannanacake
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Its all happening jeez,next Tuesday chest x ray aswell.
Thanks kev
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Many thanks, next Tuesday afternoon chest xrays.
So hopefully all well be in touch.
Thanks kev
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Definitely those MRI sounds urhh, will close my eyes ,try to think nice things
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Hi @Kevin1 I will be thinking of you next Tuesday afternoon when yo have your chest xray.
Look after yourself and let us know how you get on.
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Good morning @Bannanacake, thank you for your support, hopefully I’ll hear something soon. With regards to my cognitive function my brain just has to work harder than most. I’m not as quick on the ball as I used to be. Fatigue makes it worse. I have trouble word finding (I call the fridge the washing machine etc) and when using the computer my brain thinks my fingers are typing the correct things but the screen can be full of ‘gobbledegook’. I have to double check & cross reference everything I do. My background is primary education but I now work for my partner in the logistics industry 24hours per week. I work from home which has pros & cons, We are 24/7 365 days of the year company but it does mean I can also rest when I need to and am free for the many hospital appoimnents we all need to attend. I do miss working with children though. I’ve also been on crutches for the past 3 years (I have nerve damage in my upper spine too & plantar fasciitis) so not practical in the primary setting. The odd thing is in 2009 my headteacher told me she thought I lived with ME. In 2015 a GP diagnosed it as a result of an appointment for something completely unrelated. I’m still not fully reconciled with myself that my body is now not what it used to be and to be honest probably not as good as I could be at helping myself. I think this is why the MGUS diagnosis hit hard as there are already so many other things going on. On the plus side I am still here and very lucky to have a beautiful family & lovely home. I’m very conscious life could be a lot worse. Thanks again for your support, take care.
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Thanks @Kaycie for being so honest about your complex challenges.
I bet you miss working with children so much.
Yes, a beautiful family and lovely home are absolutely priceless aren’t they.
Take lots of special care of yourself and please do keep updating us.
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Hi @Edwinam69 I have been thinking about you and I wondered how you are?
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Waiting about a month to see your test results in print probably isn’t untypical. I normally get a summary of mine with the copy of the letter that summarises my meeting with the consultant. It must be a very anxious time for those of you waiting, one I know well but in the meantime I find it’s best to do as much with life as you can and make the most of things in case there comes a time when you can’t for a few months. Try not to worry too much and be kind to yourself.
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Hello@Kaycie,thank you so much for explaining your difficulties and for sharing your experience .I can understand what it must be like for you having to give up your career a huge loss and children in primary are such a delight but its great that yiu are able to work with your partner and that you have the support of your family and as you say can enjoy your home.I was listening to radio 2 ,Jeremy Vine medical Monday on "stretching"and the subject of plantar fascilitis and how having a tight achillies tendon can make it worse so my ears pricked up and I thought of you.It must be a hindrance having to use crutches,I walk with poles when im off for a walk for exercise but I sort of manage in town although i often feel as though the floor is moving under me !The Neurologist named my condition "multifactorial impaired balance "which sounds quite a mouthful because I have 3 things going on ears ,eyes,spine affecting nerves,(lower spine) but im ok with the eyes now as I have a prism in my glasses so i do know what balance problems are and I was lucky to have an expert balance Physio who helped me enormously and really understood ,so I exercise every day for all if the above to keep me going.Re the MGUS I really hope that you have heard something by now although having been the bank holiday …It is just another thing isnt it @Kaycie and not surprised it hit you hard it takes a lot of coming to terms with and especially as you still dont know your results.It must be frustrating as you say if the wrong words come out and as you say write "gobbledegook "and I explained in a previous post somewhere that if you have balance and cognitive problems your brain is working extra hard all the time i think that causes a lot of fatigue and I get cross with myself,plus you have the ME .Ive been rambling on ,I hope you had a good weekend and keep posting .
Bannanacake
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Hi,
Sorry MRI results were not in last Thursday due to the specialist that reads the full bone marrow mri being off. A new appointment is made for tomorrow at 2 pm.
Edwina
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Hi @Bannanacake, thank you for caring, it means a lot. I’m still waiting for an appointment at haematology but promise I will update on here as soon as there’s something to report. Having the bank holiday was lovely but it seems a distant memory now lol, can’t wait for the next one. I’m off to physio today so hopefully that will help. Sorry to hear you have many complex issues too, sometimes life can be so cruel. If does sound like you’re making the best of it though, well done. This forum has helped me so much. Talking to lovely people like yourself who just ‘get it’ makes a huge difference to daily life. Its so good to know we’re all here for each other isn’t it. I hope you are having a good week, take care of yourself.
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Good morning everyone, I have just received a text message from my GP (the one who said haematology probably wont see me!). Apparently they feel the need to convert his request into a formal referral and will be sending me an appointment to be seen in the clinic. I’m so relieved that I’ll finally find out what’s going on.
I’d like to ask for your help please so I go fully prepared. What questions should I be asking and what should I expect in regards to leaving this appointment fully informed on this condition please.
Thank you in advance for your help.
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Hi @Kaycie what a good question.
The easy answer I think is that you should leave the consultation feeling satisfied that you have asked all your fears, thoughts, questions about your diagnosis, the options for treatment or not, possible side effects, the prognosis, how your lifestyle might be impacted etc.
I am sometimes slow to ask those follow up questions, but they need to be asked.
I would say write everything down on the above, plus your symptoms, your medical history, family medical history, medications, allergies etc.
I am aware I have not given you actually medical questions.
Also if the consultant uses medical terminology ask for clarification or for them to put it into plain English.
Don’t feel pressurised, ask for time to consider issues and get back to them.
Ask for a CNS (Clinical Nurse Specialist) contact details so you can always contact them with questions.
A consultation is two way process, go for it.
Look after yourself and be kind to yourself
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So back up here again today and the special list is still off. So now I am still waiting for results.
Kind regards,
Edwina
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Oh @Edwinam69 we never stop awaiting on tests and others once we get diagnosed with Blood Cancer and waiting is so stressful and anxious making.
Try diversionary tactics like doing nice things.
We all await and be kind to yourself.
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Thanks it’s a new type of bone scan I got apparently so the specialist is off so my haematologist is chasing it. Apparently if the bone marrow is showing off it’s a bone cancer. I am totally confused I thought it would be blood cancer 
anyway just a waiting game as usual the results were meant to be back last week as well 
Edwina
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Hi@Edwinam69,I amsorry to hear about the delays esp as you thought it would be this week too and after all the build up ,least the Haematologist is chasing it for you.I guess once its been checked you will have a clearer picture of what is happening hope its not too long for you
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Hi @Erica, thank you so much I shall note down everything you mention. You make some very good points!
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