Myeloma diagnosis

• Awww, it must be really frustrating for you.   Hang in there and just know we are here for you any time of day or night if you need to get anything off your chest.  Stay strong. X

Sorry to jump on your band wagon but I’m finding myself in a similar position of waiting now.  A second BJP test sent in and I see GP has sent an imaging request.  For me I just don’t believe there is anything else it can be, the aches in back, hips, jaw despite all blood tests being normal apart from some minor “observations” in monocytes, eosinophil.   This is the most scared I’ve been in my life.   Good luck to you. 

Hi Betty L. Sorry to hear you are going through this torment too. That's what it feels like playing the waiting game. Apart from the stress of it all I am feeling fine at the moment so it is hard to get your head around the diagnosis.

However the silver lining is joining this support group. It has been sooo helpful. I feel less isolated and know that I am not alone and others are going through the exact same thing. It is still scary but I feel supported. I can express my worries without upsetting my family members. I know someone will reassure me. It is going to be a long journey but we are not alone. 

I also had chance to talk to a councillor which was very helpful. It was for a limited number of sessions but I am glad I did it. Maybe talk to your GP about this. 

You take care of yourself. 

Hi Tess123

Just wanted to chip in too to say that I totally agree with everything you have said here regarding how much of a massive reassurance this group is for me also xx

I was diagnosed December 22 and I am still at the Smouldering stage ( for now). I thank god everyday that have not progressed any furthers as yet and feel relatively “ok” but my oh my, it is stressful there is no doubt about that. 

So let’s continue to be here for each other and try and be as positive as we possibly can be ♥️

Hi to any new or not so new group members.

When it comes to support there are many routes you can explore… but yes this group is a great place to get that support from people who have the ‘T’ shirt and the lived experience.

The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

Macmillan have also teamed up with BUPA to offer up to 6 free counselling sessions for people struggling emotionally because they are living with cancer. Clicking on the link will give you more information about this.

Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332

• Torment, that’s the word.  Dropped off my morning pee and totally broke down at reception with major anxiety.  Luckily I was shunted into my gp who calmed me down, explained she’s also looking at kidneys and bladder, despite function looking fine and gallbladder via ultrasound.   Looking also at possible muscular skeletal causes so she’s covering a lot.  
  All my blood counts have been normal but I think there are additional ones if she thinks they may be more conclusive.  
  The fatigue is challenging and the feeling of not being “quite right” is impossible to explain. At least I have some sleeping pills for a short while at least.   I can only say thank you for your support.    

Hi I know how you feel about the anxiety and fatigue the waiting does not help but at least your GP is being thorough  and will get  to the bottom of things the support from the group is great I am now  +70 days from stem cell transplant  for mm 

Yes positivity is the key. My councillor said put it to the back of your mind. Easier said than done when you are been checked every two months. 

I am focusing on becoming a great grandma in March. Something to look forward to and while I am well I will be playing a big part in the babies life. 

My six year old grandaughter has a friend at school with Lukeamia. She has lost her hair so we had a conversation that if I ever lose mine I will wear a purple wig. Watch out for me everyone. Take care x

Hi, I had a stem cell transplant last September and had lost all my hair. When we all got together at Christmas including 10 grandchildren,  one of my sons told me to take my chemo hat off. He said we all know you have no hair so I did.  The grandchildren just looked at me and carried on playing!!  It was quite liberating.   So you go for it, love a purple wig!! Take care