CLL

Hi Georgey

Sorry to hear about your dad on top of losing your mum. It sounds like you're on a rollercoaster. I don't have any advice regarding CLL, my husband was diagnosed a few weeks ago with a different type of Leukaemia. The only advice I can offer is trust in the doctors and treatment they give, and make sure you look after yourself too whilst supporting your dad. Sending big hugs Sapphire 

Thankyou love ,hope your husband recovers well and thanlyou for your lovely msg ,means alot xx

You're very welcome and I appreciate this is a worrying time. We can only reach out to those who have experience for guidance. I am also a member of a group on Facebook which has been extremely helpful. You take care x

Hi again Georgey and well done navigating across to this corner of the community.

I don’t have Chronic lymphocytic leukaemia (CLL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.

Has you dad been told he will be starting treatment as very often folks with CLL are put on Active Monitoring (Watch and Wait).

CLL is actually often seen in the same light as some low grade Non Hodgkin’s Lymphomas...... this sounds confusing but blood cancers are confusion.

You may want to check out the Lymphoma Action website.  Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.

They run regular Support Platforms both for patients with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

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

Always around to help more or just to chat.

Thankyou so much I am on fb too would you mind whst fb group called and I take a look , you take care xx

Hi all

My partner was diagnosed with CLL in Dec after routine blood test. Gregory, I know its such a shock, I don't think I have ever cried as much in my life. I'm so sorry to hear you are also grieving the loss of your mum whist coping with the news of your dad and his other difficulties. We have a second appointment tomorrow to hear the results of Phils diagnostic blood test to see where he is on his journey and presume your dad will have the same in due course.We are on watchful waiting unless tomorrow's results change this.

Other than this group there doesn't seem to be any other help groups I've come across. A search of FB groups has just shown USA groups which are  heavily religious based whilst I'm just looking for a practical UK based support group so I too would be interested in the FB group Sapphire_24 mentioned. 

I hope both of you are as OK as you can be and remember to take care of yourselves as well as your loved ones

Thankyou for your reply, so sorry for you two ,yes I'm sure my dad will be the same all they said to us was blood transfusion for now as he anemic , hope all works out OK for you both  big hugs xx

Actually there are many folks with CLL or supporting family who are supporting family in their CLL journey use the various Lymphoma Action  Support Platforms

Also check out for a local Maggie's Centre as these folks are amazing and each centre do run monthly Heamatology Support Groups most are online at the moment….. the one i attend does have a few folks with CLL in it so worth checking.

Thankyou I will look .

Thanks Mike I've been searching under Leukemia rather than Lymphoma. Very helpfull