Hello everyone, my husband was diagnosed with both CLL and SLL just over two years ago and is still on 'watch and wait' so we are on the 3 monthly blood tests/hospital appointment cycle. He hasn't told his parents yet and we haven't told our two teenage daughters. Anyone got any advice on how to go about this? Our younger daughter has mental health issues so I am obviously nervous about that but also wondering if not telling them is making it worse in the long run.
Hi ballerina1980 and warm welcome to this corner of the Online Community although sorry that you had to find us and especially sorry to hear about your husbands CLL/SLL diagnosis. I am Mike and I help out around our various Blood Cancer groups. I was diagnosed way back in 1999 with a rare, incurable Low Grade skin Non Hodgkin’s Lymphoma so I do understand this journey rather well.
I totally understand the challenges of communicating this. It is hard to get your own head around, but having to tell other family and friends that a family member has cancer but it does not need treatment at the moment is a total mind shift.
When I eventually told my mum 14 years after my diagnosis she instantly thought I was going to die...... During those first 14 years you honestly would not have known I had cancer apart from some bad skin and I worked a demanding job in education for 12 of these years......... but mum's reaction was all based on her past experiences with many people who did not live long......... but these types of blood cancer are a completely different story.
Generally Lymphomas (CLL/SLL are seen in the same light as Low Grade Non Hodgkin's Lymphomas) are the 5th most common cancers in the UK after Breast, Lung, Colon and Prostate....... but a very high percentage of people have never heard of Lymphoma or CLL/SLL or CTCL!!...... so when you say cancer there is lack of understanding and this is the challenge - you need to educate family and friends.
Active Monitoring (Watch and Wait) or often folks call it Watch and Worry is initially a challenge as the mind says 'why not treat?'. It took over 14 years before I needed any big gun treatments (although I was having regular skin treatments as it looked like I had bad Psoriasis). I have talked with a good number of people with CLL/SLL who have never had treatment........ but most do go on to have some level of treatment.
Like my type of NHL (CTCL) - CLL/SLL is often seen as a life long condition, many consultants class it as a chronic illness. When I was diagnosed 23 years ago I have friends who were diagnosed with Parkinson's, Multiple Sclerosis and over the years a number with different 'solid tumor' cancers like Lung, Breast, Pancreatic....... the ones with the none cancer conditions are still we me but their quality of life has deteriorated with little development in treatments that can improve their outlook....... the ones with the cancer are no longer with me...... I on the other hand have been through a number of treatments (hit my community name to see my story) and even back in late 2013 when my condition become very aggressive and we were down to my last treatment........ 9 years on there are new treatment available if my condition kicks off again.
I tell that story to try and put this all in prospective. It's all about putting this into a picture that people can understand.
My two girls were in their late teens and had no problem accepting my explanation that this was a chronic illness that was very treatable.
The few (BOLD) links I have put up are taken from the Lymphoma Action website Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos that can help you understand this condition but also for family and friends to get an understanding.
Always around to chat at anytime.
