Hi

The way your feeling is normal when you get a diagnosis then told let's sit and wait or we will see what your like in a year i, I was diagnosed with a brain tumor last September was told they didn't know what type it is , I had to wait till June this year to have another MRI to find out if my life is going to change forever. So the waiting can get unbearable and every day you wonder will I be OK today am I going to get any symptoms today sometimes it really does get too much . I have seem to get my head round things by living for the day don 't look too forward take one day at a time and yes staying positive is all you can do cause if you don't what other option is there .just wanted to say your not alone the way you are feeling x.  Hope everything goes ok for you .kind regards    Deb 

Thankyou for the reply, I know there are a lot of people who are in a far worse position than I am and I hope everything pans out as well as can be expected for you.after reading some of the other chats in the different forums ,I am a bit more positive (if that's the right word).  And thanks again

      Tom.

Hi Tom.

I heard today I have CLL. From myGP. I'm now waiting to see haematologist /further blood test results / scan. So can empathise with you. I was told it would probably be wait and see. Have been reading all the info on proper cancer sites. Doesn't help. I can relate to what you say as I've always worked hard and long hours. How do they stage you? Just hoping mine is the bogstandard type as there are so many different types within this group of CLL . Jude.

Hi Tom,

I'm so sorry to hear abot your diagnosis. One of the frightening things about any cancer is that we never know when it, or something else, will take us. I have had two bouts of breast cancer and have lived with this possibility for 7 years now.

People tell you that life is short.  Having leukaemia makes you realise just how short it can be. While you are feeling well enough try and put all thoughts of keeling over to the back of your mind and concentrate on living from day to day. Make the most of each day that comes along. Life is precious, so live it.

So many people concentrate on the inevitable when given a diagnosis. You could have years left still, so make the most of them. I felt a rash of different emotions when I was first diagnosed. These varied tremendously and I often had several different emotions in the one day. Anger played a big part to start with, as did denial, depression, fear, worry for family and a whole host of other emotions.

I know that it's not easy to stay positive, but you'll find your life so much better if you can eventually accept what you've got and not let it tear you to pieces.

If you're feeling blue, there is always someone here to talk to. You will find this site a great help. Do keep in touch and let us know how you progress.

Kind regards,

Jolamine

Hi Jude,

I'm so sorry to hear about your diagnosis too. If you just got this today I expect that you are feeling shell-shocked at the moment.  Try not to read the Internet until you are staged and know exactly what you are dealing with. There is always a tendancy to look at the worst case scenario and apply it to yourself. This is seldom the case, but you can really scare yourself unecessarily by doing this.

I am not a medic, but as far as I know the staging is done with a bone marrow biopsy. Perhaps one of the nurses or moderators could confirm this?

I do hope that it is the bogstandard type that you have.

We are always here if you want to talk. Please keep in touch and let us know of your progress.

Kind regards,

Jolamine

Hi there .i was diagnosed with cll in September 2015 no symptoms at all .count went up so started treatment 11 months ago with the flair trial .ibrutanib and venetoclax and bloods and bone marrow are now clear.i have talked to people who have not had treatment yet after 20 years with cll and still don’t need treatment.best wishes .paul

Hi Paul,

Welcome to our forum. I am delighted to hear that your trial seems to have worked well for you and that your bloods and bone marrow are now clear.Here's hoping that this good news continues.

please keep in touch and let us know how you are getting on. We are always here for you.

Kind regards,

Jolamine