CCL

Dear Craig, I am sorry to hear of your wife’s diagnosis, as a fellow blood cancer patient I can relate to her current state of mind. I think the word chronic is at the root of the problem, although cll is very treatable its manifestation in individual patients is very variable and this brings about a lack of certainty and how you come to terms with this fact will influence your state of mind and therefore your quality of life. If your used to being in control of most aspects of your life this is a huge culture shock and will take time to adjust. I am 16 months on from diagnosis and feel differently from the stressful early days and with your love and support your wife will learn to cope with her new normal. I no longer fret over many of life’s trivialities and feel strangely liberated, life becomes more precious and you can use these feelings to help you cope with the stresses and strains of a long term chronic illness. Remember this is a highly treatable disease with very good overall survival figures which is not the case for many other blood cancers so that is a positive thing. Give her time to process what has happened and try to keep things in your life as normal as possible as this is a good antidote to all things hospital related.

best wishes

Hi Craig  and a second welcome to this corner of the Online Community but sorry to see you joining us.

Like Jane , I have lived for 20 years with another of the very large number of various types of blood cancers. My journey started in 1999 and for the first 14 years I basically lived with a chronic illness that, once I got my head round it, I was able to live and work well but obviously having the regular clinics and for me, regular skin treatments.

Having had testicular cancer, you will have an understanding about the mental challenges that come with having cancer. The problem with a blood cancer like CLL can be rather hard to get a handle on it as on the whole - blood cancer can not be ‘cut out’ and indeed people can live a long life with the cancer.

CLL can be a long slow burn condition and there is often no quick fix, indeed one of our local Heamatology Support Group members has lived most of her life (she is now 69) with CLL and apart from regular check ups she has had no treatments. Like myself, she had positioned her mind to be living with a chronic illness.

This area of the Community can be slow but we do have folks drop in past who have CLL so lets look for them to pick up on your post.

We do have our ‘Ask an Expert’ section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply. In this section you will find Caroline - Macmillan Heamatology Nurse.

You may also find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

Watch what you look at online, do stick to recognised organisations that deal with this type of blood cancer - below are a few links that you may find helpful.

CLL Support

Bloodwise

A couple of questions to go on with:

When was she diagnosed?

What are her team saying about treatments?

If treatments are being proposed - what are they?

We are always around to listen and help out.

I agree with many of the previous comments than our CLL being ' Chronic ' is very difficult to mentally absorb.

' The Highlander ' as usual offers some excellent advice and I would add The Maggies Centres to the list of places where you will find much help.  Maggies Centres are close to, or near, many big hospitals and specialise in help for those with cancer.  Just walk in and explain your problem and you will find both a relaxing calm atmosphere and helpful people.

Also perhaps explain to your wife that cancer is not what it used to be.  I was diagnosed back in 2005, and still lead an active life with no hinderences to my lifestyle. 

Dick

Good shout Dick,

Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area and as Dick has said Maggie’s Centre are great - these folks are amazing.