Hello. I’m a new member.

Do you mind me asking what Leukaemia you have, I ask as I have CLL and have had it for 13 years. Don't have much knowledge of other types but plenty in relation to CLL.

I also have CLL. Physically I feel ok, it’s just mentally, I’m not great. 

Hi LYLea90f3 and welcome across to this corner of the Community. I am Mike and I help out across our blood cancer groups.

I don’t have Leukaemia, but I have been on my own journey for over 25 years with 2 very rare types of T-Cell Non Hodgkin’s Lymphomas, the first one is seen as incurable the second that appeared in late 2013 was very aggressive……. so I most certainly appreciate the mental and physical challenges of dealing with this unwanted journey.

What exact type of Leukaemia do you have?…… there are a number and each typrs has its own challenges and treatment journey?

My great CNS (Cancer Nurse Specialist) told me in the early days…..

Some things are outside your control.

Some things are within your control.

Spending a little time figuring out the difference can help you feel more in control.

The one main thing I found helped me (and my family)  navigate the journey was ‘talking’ it helped us define how we lived….. not allowing my cancer to define us.

You may find it helpful to call the Macmillan Support Line open 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.

For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups and the one I attend does have a few people with Leukaemia in it so worth checking.

Always around to help more or just to chat

Hi LYLea90f3 and JDTb698a5 (welcome to the group)

Although Chronic lymphocytic leukaemia (CLL) has the word Leukaemia in it, in Heamatology terms it actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say.

This is why we do have a dedicated CLL, SLL and HCL group as these three conditions are completely different from other Leukaemia’s.

Not having treatment and being on Active Monitoring (Watch and Wait)  is rather normal…..  your CLL…. like my CTCL of 25 years is very slow growing….. my consultant told me to see this more like a chronic health condition that is treated when required.

Ass you both have CLL you may want to check out Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos…… basically all things relating to your condition....... pre, during and post treatment..

Lymphoma Action run regular Support Platforms...... I highly recommend these groups as there is nothing better than talking with others who have walked the journey. I also volunteer for Lymphoma Action and regularly talk with folks who are living with CLL, SLL and HCL.

They also have a great Lymphoma Action Buddy Service where you can be linked up with someone who has walked the same treatment journey.

They also have a helpline on 0808 808 5555 where the team will be on hand to give you some support - open every week day from 10 till 3.

I am always around to help more, just to chat and to answer questions.

Yes was on watch & wait from 2012 until February this year when I needed treatment, due to spleen being very enlarged and multiple pneumonia over the last 2 years needing hospital stays. Fortunately the Venetoclax treatment has put it all back into remission so now back on watch & wait. However now battling Rectal cancer with liver metastases!!.

My Haematology consultant is fantastic so regularly see her for support as well as the CNS nurses. I am under Forth Valley hospital in Scotland.

However soon moving back to Lancashire England due to the new development to be closer to family as that's where we originally lived.

Good luck with it LYLea, good advice from Highlander, CLL is just something you get used to living with.

I was devastated when diagnosed, thought the worst, did take probably a couple of years to really accept that it really is not as bad as you first think. Having 13 years with just a few pneumonia bouts I have been absolutely fine. I am careful around anyone who is quite obviously full of cold/ flu but otherwise just go about my normal life.  Stay positive you will get your head around it.

Where are you based?