I was diagnosed yesterday with Monoclonal gammopathy of unknown significance ('MGUS') and basically told that I will need 6 monthly blood tests and just to monitor my own symptoms. I have downloaded the Monoclonal gammopathy of unknown significance ('MGUS') diary for this which is helpful. I feel really strange about it all because it was just last week my blood tests came back and I was referred immediately to Haematology and they rang me on the same day and I was given the appointment yesterday. It was all done so quickly and with such urgency and donāt get me wrong I donāt want it to be a more serious blood cancer but I am just left reeling from all that just to be told go home and wait. Is that a normal reaction? They are going to do an MRI just to check because I have back and rib pain. Iām 67. I asked the Registrar if 6 monthly checks are ok and she said yes because I am at Stage 1 and it is a slow progressing condition. They are going to see me in 3 months at the hospital because of the MRI and I have to have blood tests again before that so I suppose the best thing is to write a list of questions etc for that appointment and not worry but I just feel odd about it all, especially as my symptoms of sweating and itching were dismissed and I just have to keep on coping with them!
Hi @Katiep
Itās no wonder youāre reelingāthat is a massive amount to take in over just one week. Going from an āurgentā referral to āmonitoringā is a huge emotional gear shift, and feeling āoddā or unsettled about it is a completely normal reaction.
Iāve been in active monitoring for a different blood cancer for over five years now; it felt very odd at first but, itās good to know that the regular monitoring actually means I can get support when I need it.
The MRI is a good, thorough step to check out your back and rib pain, and having a follow-up in 3 months is a great opportunity to raise your symptoms again.
ā¢ Using your diary is a great idea -keep track of the itching and sweating daily. Itās much harder for them to dismiss written evidence.
ā¢ Definitely write those questions down. It helps you feel more in control when you are at an appointment.
Blood Cancer UK: Managing emotions
Be kind to yourselfāitās been a whirlwind. If you need to chat, the Support Line is on 0808 2080 888.
Thank you so much glad to know itās normal to feel this way. Iām definitely going to keep the diary thanks again 
Hi @Katiep and welcome to the forum.
As @Jules has said, this is definitely a normal feeling. Itās a really difficult one to get your head around. However, active monitoring for me, has got a little easier as time has gone on.
I write everything down to. Questions, any changes Iāve noticed. Iāve found this really helps me, especially in preparation for my next appointment.
Try to look at active monitoring as a treatment in itself. It will take time but the good thing about the forum, you will find people who understand how you are feeling and can support you through it.
Nichola x
Hi @Katiep yes, I reckon keeping a diary of questions, events and symptoms is a really good idea as my mind goes blank every time a walk into a medical room and it gives me structure.
Firstly I was definitely in shock for ages after my diagnosis with conflicting thoughts and feelings whizzing around. The other thing I now realise I did was trying to second guessing everything a medical person said or did and what a waste of time that was.
I am also on active monitoring and I think the key word is āactiveā it is is a proactive action.
I was also referred back to my GP surgery to do this and they will fast track me back to haematology if anything is amiss. At first I felt a fraud, abandoned, bereaved, etc . but it is far more convenient as it is local. I have been on active monitoring for another blood cancer for 22 years.
I would say give yourself time. I found there is a lot of waiting and not knowing, be ever so kind to yourself and keep posting