Don't want to know: I'm soon going to be 79, I... - CLL Support

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Don't want to know

flugel1 profile image
9 Replies

I'm soon going to be 79, I feel pretty good and creatively productive. I have my first 6 month vist coming up. If things don't look so good I don't want to know about it, even thought about cancelling appointment. If I started having symptoms I might feel different, or I might not take any treatment.

I went to my GP over 6 months ago, he ordered a blood test and I was told I had CLL, I wish I never had the test, if something doesn't feel quite right, "is it age, is it nothing, is it CLL?". I don't want to spend my time dealing with doctors and the medical profession.

Thirteen years ago my beautiful iwife died from Breast Cancer at the age of 48, from a little lump under her arm, her prognosis looked really good, 80% she'd be fine, she/we did everything the doctors advised, now she's dead! Maybe that's why I feel like I do.

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Newdawn profile image
NewdawnAdministrator

Perhaps it’s mortality itself you’re worried about more than the CLL flugel? I bet you go to this consult and find it to be a non event. Many people have CLL diagnosed later in life and it exists almost in ‘harmony’ with them never requiring treatment. Doesn’t matter what ailment we have, the same question as to whether it’s the health problem or age crops up.

My friend takes her mother for her 6 monthly CLL consults and at 82 she simply sees it as an afternoon out and a coffee and cake at the hospital cafe. She said she’s more concerned that her dodgy hip will stop her line dancing!

Just view it as a health MOT because it’s very different to your young wife battling a solid tumour at 48. You have a chronic blood condition. Ok it’s malignant which means it will march on but hopefully you’ll out run it and continue living your life until you naturally run out of steam! You’ll still be enjoying your jazz, being creative, having a few drinks and a smoke because that’s what you’ve said makes you happy.

Whether you know or not doesn’t change the reality. You have it and need to live well despite it. It means you can head problems off at the pass and keep yourself as well as possible and away from highly infectious people.

What is important is your attitude now. Adaptation without undue fear is the attitude you must adopt.

As this is your first consult, it’s unlikely to be eventful and the fact that you are having it 6 months post dx suggests the doc isn’t overly concerned.

Just keep on doing what you’ve always enjoyed doing flugel. There’s no suggestion at this stage that your CLL will be much more than a nuisance thought to you and I’d be surprised if it has you constantly at the doctors.

Let us know how it goes.

Best wishes,

Newdawn

flugel1 profile image
flugel1 in reply toNewdawn

Thanks much Newdawn, I think you are right on, good read on me. As Woody Allan said, "I'm not afraid of death, I just don't want to be there when it happens."

Newdawn profile image
NewdawnAdministrator in reply toflugel1

Funnily enough, that’s the saying I use too flugel! ☺️

Regards,

Newdawn

flugel1 profile image
flugel1 in reply toNewdawn

The other one is, "If I knew I was going to live this long, I would have taken better care of myself."

Joking aside, they say the biggest killer in seniors is loneliness.

Newdawn profile image
NewdawnAdministrator in reply toflugel1

It certainly is flugel so get yourself out and about meeting people and staying vibrant. ‘Stay young, keep your wheels in motion’ as the song goes 😊

Newdawn

flugel1 profile image
flugel1 in reply toNewdawn

I do, I'm out working playing jazz on my flugelhorn (warm sounding trumpet) 5 nights a week with guys half my age and less, here in beautiful Mexico.

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply toflugel1

Nothing like music to keep us young! My thing is singing classical choral music in a group directed by my former college choir director - 89 and I have trouble keeping up with him.

I suppose that at some point we all have to decide what we are comfortable knowing about our CLL.I'm more the give me all of the details and options type, some have a "designated other for that - spouse, friend, or whatever - and some just leave things in the hands of a trusted doctor and don't want details. There are no right or wrong answers., though I suspect that Newdawn is correct, that your appointment is likely to be basically uneventful, considering that your doctor has opted for 6 months since your last appointment.

I don't know that I've ever listened to anything with the flugelhorn standing out. Any suggestions for a good you tube or recording?

flugel1 profile image
flugel1 in reply toMsLockYourPosts

Art Farmer Live Jazz at the Smithsonian

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SouthFloridaLady

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