Diagnosed In December with CLL at 52

Hi Lola2023 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and sorry to hear about your wife’s CLL diagnosis.

I am Mike and I help out around our various Blood Cancer groups. 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 Non Hodgkin’s Lymphoma 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.

I can understand the concerns you have. When cancer comes into a family the battle between the ears can be hard to control especially when it’s not treated…… “you must treat this straight away!” I hear you say……. but this is not often the way with slow growing blood cancers.

Active Monitoring (Watch and Wait) is often the first step in the treatment of these slow growing blood cancers. I was basically on Active Monitoring for 14 years before I needed any significant treatment although I was having skin treatments as my type of Lymphoma was a skin type.

I often talk with people on here and on another support site who have had little or no treatment as their condition has it had not developed sufficiently to allow the treatment to be effective.

I can appreciate the challenge around telling your children and family about this….. our 2 girls were in their mid to late teens when I was diagnosed. We just said it as it was…… and they dealt with it no problem.

We explained that I had an incurable blood cancer but it was very treatable as and when required and is more like a chronic health condition…… like say type 2 diabetes….. in fact type 2 diabetes is most likely more dangerous a condition compared to slow growing blood cancers…… I know that this will sound very simple but from my experience it’s the reality.

Talking can help a lot so do check out the Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.

CLL although it has the word Leukaemia in it, in Hematology terms actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say. This us why CLL, SLL and HCL have a group on their own.

Lymphoma Action run regular Support Platforms for patients...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

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

They also have a Lymphoma 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.

Hi

Hi Lola 

Sorry to learn about your news. I’ve just read your post and it has many similarities with the situation I found myself in last Christmas- I was diagnosed with CLL a few weeks before my 49th birthday. This was also picked up on a routine blood test for something else( a fungal toe of all things lol). 

I can totally relate to the shock and anger that you are experiencing, as they echo with the raw emotions I felt at the time of my diagnosis. The decision to tell my kids ( son,15 and daughter, 12) was an extremely difficult one, although having spoken to them, I’m glad that I did.

The main reason for sharing my news was the fact that I wouldn’t want them to think that I’d hidden it from them, and the fact that if I ever need treatment, it would be less of a shock. I obviously know my kids and felt that they would be strong enough to deal with it. 
I used the diabetes analogy, and also explained that in the last 10 years, the science and medical know-how has changed the landscape for treatment dramatically, if that is, I ever need treatment. 

Fast forward 12 months, and I’m definitely more accepting of my diagnosis. I’m definitely still a bit emotionally raw, and find myself getting cross in certain situations, or crying at the television more often ( note-  I used to do this before my diagnosis too!). The kids seem to have taken it on board and have decided not to share anything with their friends. They ask occasional questions and seem more inquisitive than anything else. 

The best advice is to go with your gut instinct with the children, but in relation to everything else, I’ve found that exercise has really helped. I’ve always been a competitive cyclist, so working on my fitness levels has allowed me to focus on something tangible. 

All the very best with everything x

Hi Crispin and a warm welcome to you. You can see the information I put up for Lola2023 

If you need further information or just want to chat I am always around,

It’s okay Mike, I posted on here a year ago, and you were very welcoming and helpful, thanks. 
All the best 

Hi

Thank you both for your replies! 

Been off the radar a bit struggling with coming to terms with this all. We have decided to tell the kids when they are all home over Easter. I’m struggling to be a normal mum and keep it a secret. 
Once I have told the kids I can then tell some friends as again it feels like such a big secret and making me avoid any  social interaction. I need their support!

I’ve had a cold that turned into a chest infection and also had to have some minor surgery to remove dodgy skin lesion, I question if this is the CLL telling me it’s there. 

I like your analogy  with diabetes.  I will use this to tell the kids.

we have also been looking at finances and pensions and it’s very scary not knowing if I’ll make retirement and how long for.  It gets me down.

I’ve started to listen to the McMillan  podcast whilst walking my dog. That does help.  But I would really like to go for a coffee with someone in the same boat. But there doesn’t seem to be anything local to me.  Scared for Easter but it has to be done. 

Hi

I am 56 and was diagnosed with CLL a year ago. Initially I was a watch and wait but started treatment in November when the consultants felt it had developed.

I understand all of the emotions you have expressed as it is not something you foresee for your 50's.

i told my daughter when she was home from uni as I wanted to do face to face. I explained factually but shared the booklets that Macmillan issue.

I think being factual helped her. Whilst all people are different, I do think being open with your children is important and they are ok if you are.

I didnt share with many after that as I felt, like with many other illnesses, you do not need to tell . Also whilst people do this from concern but I didn't want to keep talking about it. I just wanted to live my life as normally as possible but once I started treatment, I shared

I again used the booklets as this stopped others dramatising and googling.

I am treated with tablets and aside from tiredness and the odd reaction, I have been fine. I believe you generally only hear about the terrible stories of cancer treatment as opposed to the good ones. Research has progressed so far. Therefore even if you do need treatment, you do not have to be fearful. 

Hi again Lola2023 sorry to hear about your chest infection…… I actually have general antibiotics in the house that I can take at the first sign of a chest infection….. and they are on my repeat prescription as my GP trusts me to only use them when required.

As for ‘talking’ with someone….. where are you based?

The next best thing is the Lymphoma Action Buddy Service…… they have buddies for most types of Lymphoma + CLL and SLL where you can be linked up with someone who has walked the same treatment journey and you can sit on the phone or FaceTime and have a good old chat…… I am an LA buddy for my rare type of skin Lymphoma and Stem Cell Transplant.

When I was first diagnosed 24 years ago my great SCN told me to look past the end of ‘my’ diagnosis and look around at others who had revived other types of medical disorders…… I have/had a few friends who were diagnosed with Parkinson’s, MS, Diabetes……. Yes I have had treatments over my years but I am still living as good a life as any 68 year old can be living…. X my friends on the other hand live in a very dark tunnel that is getting darker as the years go bye….

Also over these 24 years I have other friends diagnosed with other types of solid tumour cancers (bowel, lung and prostrate)…… they unfortunately are no longer here…….. we all sat one night with a glass of Single Malt and agreed that the last man (family) standing would live their lives as a celebration of the others who were no longer there.

When it comes to blood cancer there is lots of hope ((hugs))

Hi Lola2023 I have just been diagnosed with CLL Leukemia. Such a big shock isn't it! I'm aged 57. I have 2 girls aged 23 & 25. My youngest is due to have a baby in 2 weeks and I was really worried about telling her the most. However I think they would have been upset & angry with me if I hadn't. I told them both as soon as I got home. Kids are really quite resilient! My hubby and the girls have been so supportive. I am not very brave when it comes to illness of any kind let alone Cancer :( I'm glad I told them so they can now understand what is happening and give support & I give it back to them as they are obviously emotional too. 

Do what you think is best as I don't know you or your children but don't leave it too long. Good Luck with everything! xx

Thank you for your reply, I’m sorry you are now in the same boat as me. It sucks! If you don’t mind me asking are you starting treatment yet or are you on watch and worry. 
it would be nice to have someone to chat to who understands totally. 
I have good days when I feel invincible and want to take on the world and bad days when I feel so low. 
I am telling the kids at Easter and wish I had done it sooner but I feel I’m a little stronger to do it now. My youngest is 14 I worry about him. 
I hope my 2 eldest support him. 
Here for you if you want to chat.