CLL

[vdarr1]

I started looking for my cancer in 2012. It was discovered in 2013 after colonoscopy. Chronic Lymphocytic Leukemia. I try to remain optimistic. It is getting harder by the day:/

[liggo]

I was diagnosed with CLL in September 2015, a shock out of the blue to say the least, I started an 18 week course of Chemo, three times each week, which ended this January. I was having continuous Blood and Platelet transfusion until around last Christmas. I then went into remission and haven't looked back since. I feel that I still have a way to go but feel great and amaze my friends on how well I look. I must have looked bad before but no-one said anything. Stay positive and remain optimistic. I am now on watch and wait with regular visits to my consultant, these are now every ten weeks, I am glad for the regular checks but get on with life.

[LizofLondon Champion]

I have CLL too. A big problem is all the uncertainty. And those of us with it cannot control it. Neither do we know which way we are heading. So it's far from easy. My aim is to 'go with the flow', do as my consultant tells me and laugh as much as possible. I suspect that's not useful in any way. Good luck dear fellow traveller

[Kathp]

Hi and welcome. I am newly diagnosed in 14 Oct and these have been the longest 5 weeks of my life. I know exactly what you mean. Although on watchful waiting I struggle at times to grasp it all. I give thanks this forum and their wit and wisdom which helps me make sense if this conundrum. I am at Stage 1 next test in February - feeling in limbo but carrying on as normal.

Where are you on your CLL journey?

[LizofLondon Champion in reply to Kathp]

When first diagnosed back in Feb of this year, I was already stage 2/3. My consultant says I shall need treatment maybe as late as summer, maybe sooner.

I think we are in many ways fortunate to be checked: I feel absolutely fine and would never have gone to a doctor. I'm also encouraged by the huge advances in treatment over the past few years.

When I first heard, I was very much in that limbo feeling and still get it from time to time. Then a CLL person said how he had lived with the diagnosis for years and he treated it 'like a parrot on his shoulder'. I find that helpful. It's there but on the whole we can get on with living our lives. Not always easy.

The old adage of 'one day at a time' seems worth a try. And enjoy. 😊