Hi, I managed to talk to clinical nurse other day she told me to send in some bloods, but my doctor’s have shut down until further notice so going to have to wait this virus stuff out, I’m feeling better though think i just needed to get some stuff out, and you and the other’s on your site listened so thank you all soooo much, i’ll keep in touch, thanks Michelle
It’s really good to hear you’re feeling better @chelle151, I hope you’re feeling OK todaty. It’s so important to be able to get some stuff out as you say and chat to others. Yes do keep in touch! This is such a supportive and friendly space.
Take good care of yourself.
Hi, I’ve just found your forum and joined, it will be so nice to talk to people that have a better understanding of how you feel.
I had a doctors appointment 3 days before March lockdown that culminated in investigative blood tests that came back flagging up several abnormalities, which then led to a referral to a Haematology Consultant, that led to 3 months of anxiety and waiting in lock down for CT scans appointments, bone marrow appointments and then waiting for the results. I kind of fell apart, chose not to tell anyone, couldn’t bare being in the confines of my four walls with the whole family worrying, would have made it too real. My daughter was waiting on what was going to happen about we A’level results, my son is a real worrier and I didn’t want to add to anyone’s stress. I chose not to tell my parents who are both 80 and I couldn’t put them through the worry when they live 250 miles away and I can’t see them in person. I speak to my mum everyday and it was so hard to pretend everything was fine.I stopped eating, everything else felt out of control and I lost 20 pounds that I didn’t need to lose. Paying the price now, my hair has started falling out in handfuls, I’m hoping that that part is something that is reversible, if I start taking better care of myself. I know things could be a lot worse for me and MGUS was a more favourable outcome than some of the other possibilities, I should be grateful.I feel guilty even saying I’m having a hard time, I have a friend with a grade four brain tumour and her strength is incredible. My mind just isn’t doing so good right now.
Hi @CJJ73, it sounds like you have been through a very difficult time during this very challenging time. It’s understandable you wouldn’t want to tell your family at the time of lockdown about what you were going through, but we’re glad you have now reached out to our online community here for support. It’s so important to look after yourself and its reassuring to know that you recognise this and will take steps to improve your health and wellbeing. It’s ok to feel and say you are going through a hard time, everyone goes through different feeling and thoughts about their diagnosis and deal with things differently. There is no right or wrong answer, you coming on the forum and experiencing your feelings is a big step. If you would like to speak to someone from the support service team, don’t hesitate to reach out. You can find all the ways to contact us here: https://bloodcancer.org.uk/support-for-you/talk-blood-cancer/.
Hi @CJJ73 a great big welcome to our forum, I am glad you have found us.
Well, you certainly have been unlucky with your tests and diagnosis coming at the Covid lockdown.
It is your choice if/when you tell people.
It must have been so isolating for you. As you very honestly say you kind of fell apart. I wish you had found our forum then as I find it very supportive.
I am glad that you realise that you have not been taking care of yourself, you are a very special person who has really been through a trauma this year. I find I really need to take care of myself to be able nurture myself and feel better and think clearer.
I wonder if you have talked to your medical team or GP about your weight and hair loss.
We are here to support you and if you would like to talk to someone you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at email@example.com.
Stay safe, take care, spoil yourself and please keep posting
Hi Dawn I refound this older post and was wondering how everyone out there is with their MGUS diagnosis.Im coming up to having blood tests in a few weeks and I’m trying hard to
distract myself but at the same time it’s difficult wanting to know have the paraprotein levels increased and if they haven’t why was I worrying .
What I would like to know if there is any consistency in the increase last 2 times its been same level increase so time will tell and that’s what the Dr’s are looking for I guess.
Just a few thoughts .
Hi @erica,thank you I’m still finding my way around the forum, its just I came across the question from Dawn from 2019.
I have overripe bannanas looking at me so a cake will have to happen soon.
I make gluten free for me add xanthum gum makes all the difference and ord flour got my husband and anyone who calls !
You never know !!
Hello. I also started tinnitus after cancer. Anyone experiencing this problem? I also have a lot of headache. Can a headache cause tinnitus? Or I want to ask, can tinnitus cause a headache? Thank you.
Hi @DawnBloodCancerUK, I was copied into a letter back in February from my Neurologist to my GP in which it stated I have MGUS. I’ve had absolutely no support from any medical professionals whatsoever and as a result posted on the forum ‘Newly Diagnosed And In The Dark’. That was the best thing I’ve ever done. The members on here have been my only support and my only sanity. My friends and family all say the right things but in all honesty I feel they they dont want to acknowledge it as that would make it a reality they don’t want to face. Subject matter changes very quickly. (does that make sense?). I have now had second bloods done but am still none the wiser. My GP has openly admitted he doesnt know anything about it and has commented that hes not sure if my 2015 ME diagnoses is correct or whether its been MGUS all along. I requested a referal and am still waiting for a Haematology appointment which I chased last week. I was told my case is with a consultant for review. I’m back at Neuro on 12th July. I find myself questioniing whether every new symptom I experience is MGUS and with no-one to turn to this forum has been my go to. Whenever I feel uneasy I hop on and have a little read, reassure myself and carry on with what is now the new normal. I for one would be lost without all you beautiful people so from the bottom of my heart I would like to say a huge thank you & please keep up the good work.
Hi @Kaycie I will copy your post to the nurse advisors @GemmaBloodCancerUK and @LauranBloodCancerUK for you.
Yes, you are part of our forum family now and we really understand how you are feeling and the Blood Cancer UK support line is there for you if you would like to talk to someone.
I really related to you saying ‘My friends and family all say the right things but in all honesty I feel they they don’t want to acknowledge it as that would make it a reality they don’t want to face. Subject matter changes very quickly.’
Yes, I have a husband like that he has his head in the sand.
I have realised I cannot change him after 40 yrs together !!!
This forum has been my saviour too.
My friends just say something to make me (and/or them) feel better.
Please do use us, especially when you really really upset or annoyed.
Be kind to yourself and please keep posting, I would like to hear more about you
Hi @hakanx a great big welcome and a really good question that I cannot answer.
It’s like the ‘chicken and egg’ thing.
I will copy your post to @GemmaBloodCancerUK and @LauranBloodCancerUK our nurse advisors to see if they can help.
It’s definitely one for your medical team as they need to know what you are experiencing.
Look after yourself and please keep posting
Hi@hakanx,that is great that @Erica has copied your post to @GemmaBloodCancerUK and @LauranBloodCancerUK who can advise you.I am replying as I experience tinnitus, not because of cancer,I have MGUS,however I had lots of investigations a few years ago via ENT for balance problems and get support from the Menieres Society ,I dont have Menieres disease but they support people with balance issues.They have info on line as well and cover tinnitus.
I have a brilliant fact sheet on tinnitus you can access really good info from BTA British Tinnitus Association 080018 0527
I hope that you can find something useful to help from them.
All the best
Good morning @Erica, thank you for your kind reply. I appreciate you taking the time to reply and copying my post for me. I’m sorry your husband buries his head in the sand. I think we reconcile ourselves to what is happening and become quite matter of fact about it. Sometimes I feel that is the worse thing we can do because others seem to pick up on that and feel we don’t need to talk about it. I will keep posting as and when as somehow its just easier to open up on a keyboard and screen rather than face to face. I also like to hear how others on this forum are managing too and if I can offer some words of reassurance I will. We all need to be a bit kinder to ourselves don’t we and I guess none of us are very good at that either. I hope you have a good weekend, take care of yourself. Speak soon,
Welcome to our forum. I am very pleased you have found us.
I really feel for you as i appreciate how difficult a condition such a Tinnitus can be to manage. May i ask, have you been able to talk to your GP or indeed your haematology team about your symptoms yet?
We understand that Headaches may not be a ‘typical’ symptom of tinnitus and may also indicate another condition or vision impairment. It is often a good idea to if headaches persist to contact a ophthalmologist for a review and also your GP to help diagnose and treat your headaches appropriately.
This NHS webpage offers some information about Tinnitus- Tinnitus - NHS (www.nhs.uk)
Also in case it is helpful this webpage offers support groups & additional information for those whom suffer from Tinnitus- British Tinnitus Association.
Please do know that you are also welcome to contact our support service team should you need to talk anything through- 0808 2080 888.
Do Take Care, Lauran
Hello @hakanx, welcome to the Forum and thank you for posting. May I ask what canecr you had and also what the treatment was that you were given? Here is some information from the NHS regarding Tinnitus Tinnitus - NHS. I suggest that if it causing headaches that you call your GP. It must be awful experiencing this so hopefully you will get some respite soon.
Dear @Kaycie, I am so sorry to hear that you haven’t had the support you deserve. I am very glad that you are chasing your Haematology appointment as this well help with your understanding of MGUS and give you the knowledge of when to report issues. Do you need any further resources from us as I am happy to send through to you but am mindful that myself or one of my colleagues have already sent them through to you via the Forum? In the meantime please call the Support Phone line if you need to talk: How to contact Blood Cancer UK | Blood Cancer UK. Kind regards Gemma
Good morning @GemmaBloodCancerUK, Thank you for your reply. I was very kindly sent the resources information when I first posted on the forum, they were an incredible help, thank you. I will keep in mind the phone line is there should I need it. Being able to talk makes a huge difference. Its not long now until my Neuro appointment and hopefully my haematology appointment will come through soon so feeling more positive about things. Although the weather is rubbish in the south of England today I’m feeling more appreciative about the people & things in my life so I’m going to take that as a win and enjoy my day feeling calm and relaxed. I hope everyone reading this has a good day too. Take Care & thanks again.
Hi @Kaycie I had a lovely sunny walk first thing, then went to meet a friend and it rained, but I soon dried out. Sun came out whilst we had lunch, we went to go home and it rained again so I was ‘forced’ to go inside window shopping, home in the sun and the weather can do what it likes now (the sun is out!!!)
Yes, keep the support line in mind, they are all lovely on there, yes, I find talking really helps.
The one bonus of my diagnosis is that I have rea-assessed my life and thought who is important to me, what do I want to do and with whom. I have realised the best things in life are free and actually I am a very lucky girl.
Calm and relaxed sounds good to me, I do not deal with what personally stresses me me well since diagnosis.
Take care and please let us know how you get on at your Neuro appointment.
Hi this actually my first post… Although I do read all the post and am very comforted by all the positivity and support. But back to kaycieis post… My GP rang me to tell me of my newly diagnosed MGUS a few weeks ago. She used the phrase “I want you to actively manage this”. I now know that translated to “I don’t have a clue about MGUS and you need to be proactive” I was already under the care of a dermatologist for unknown rash (still unknown) and also Orthopaedics for pelvic and hip pain… I asked both if they were aware of the potential connection to MGUS but suggested I needed Haemotogy referral. Not been offered that my my GP do you think I should push for this now or wait until after results of next bloods probably about a month or so away?