Hello From Nigel In Cornwall.

[OwnedByCockerSpaniel]

Diagnosed with early stage CLL in October 2017.

The day my doctor telephoned me to advise of the 5th set of blood test results and confirmed it was CLL, happened to be the very day a very good friend of mine died of ovarian cancer.

GP was pretty blunt and unhelpful.

"Early stage. No need to worry. live with it." sort of thing.

How can you NOT worry?

Eventually saw a consultant Heamatologist at Derriford.

He was a bit more helpful, but it has still left me with questions and still a worry.

Recently renewed contact with an old friend in the USA who had CLL, was given chemo, but 6 years on, is not up for a bone marrow transplant.

All a bit depressing.

I am still not sleeping well.

Added to a year when three members of my family died, I have to say I am struggling.

[Cmac70]

Welcome Nigel. First thing I am sorry about the loss of your friend, that must have been a very difficult day for you.

I was diagnosed 2 years ago stage 2 Cll after a blood test that my GP ordered to check thing out because i was complaining of fatigue.

I just wanted you to know you have found a very good site here. The people here are full of knowledge and expeirence and very caring.

When i was diagnosed at age 45 I felt very scared and nervous of the unknown. So much that I think it was making me feel worse. Since then i have come to realize that i cant dwell o the "what if's". For the most part this disease seems to be slow growing and manageable for many. They are making new discoveries all the time. My only advice is to get a good team behind you and support system, try to exercise and eat healthier, and try not to stress to much about it and keep on living.wishing you the best.

Chris

[ap64]

just read your post and really it is hard to be uplifting given what you been through. However CLL is not the end of the world. I do hope you are going to take the time to read some of the excellent information you can access through this site and continue to seek our support and understanding. With time you will be able to see the diagnosis delivery you received from your clinicians in perspective. Unfortunately these doctors see people who are so sick when they come to give us our diagnoses they are often very matter-of-fact. This, I believe, is because they don’t see us as individuals but more like just another patient on a continuum of sick people and they don’t consider us too sick. They re right in one sense but they don’t know what it is like to live with this particularly in the beginning as you wrap your head around it. I have lived with it and have come to terms with it pretty well so far. I do think you will too but it takes time and knowledge. Try and watch Dr. Fegans videos from Cardiff. He is very down to earth and informative.

[Firefly14]

Sending you hugs at this awful time. Grief is bound to overwhelm you. CLL is scary but for many of us, stays manageable for a long time. Stay in touch, we are all here to support you x

[carnvellan]

Hello Nigel - sorry to hear about your experience. As a Cornishman living away but with family in Cornwall with experience of the cancer services there, I was particularly concerned when you said you were 'eventually' seen by a consultant haematologist. This should have been within two weeks of referral by your GP. Did this not happen? I don't think your GP is qualified to say whether you have CLL or not, or some other blood condition. This has to be done with sophisticated blood testing by the haematologist.

You should not have to worry like this. Did they introduce you to a clinical nurse specialist with whom you can discuss your worries? They should have. Macmillan have local support services and you should talk to them to.

Don't get depressed. I know it is hard but keep positive.

[OwnedByCockerSpaniel in reply to carnvellan]

First blood test was late August. Then again through September. First week of September, stand in GP Said "Anomaly in your blood test. Looks like CLL. We need more tests." With no further explanation.

Blood samples were done early morning to get them to Derriford for testing.

First week of October, after 5th test was when GP telephoned to confirm CLL.

Two weeks later I received a letter from the GP practice advising of a number to call to follow up.

I phoned that day and was told I would be booked in and receive a letter confirming an appointment.

Letter arrived three weeks later and appointment with Heamatologist was first week of December.

So long wait from my point of view. I realise after the talk with the consultant that it is not urgent and they treat it as routine, but it seemed like a long wait to me.

I have been effectively "Dismissed". Mid January I received a copy of a letter from the Consultant to my GP to do 6 monthly blood test to monitor the progress.

No further advice or contacts.

I know intellectually that I should not worry. Hard to really let go.

But thank you all for your comments.

[TheFrog]

Nigel, I just want to give you a reason to be optimistic. I was diagnosed in late1994 at the age of 39 and already at stage 4. I started treatment in 1995 and was in remission until 2007 when again I needed treatment. My second remission is still holding and I feel fine. I know I'm one of the lucky ones but with the new treatments that are coming along it is likely that you will be fine for years to come. You need to live life to the full and don't let this disease rule your life.

Jacques

[KL2018 in reply to TheFrog]

Thank you for your post. It is comforting to hear positive outcomes.