Hell no...

Thanks for all your kind messages. I was upset earlier today & it can sometimes take a few hours to get back up again...

But back up I am - and I'm not going anywhere.

🔥

[BellaBee10]

Good on you. I was really happy to hear about your 12 yr remission after FCR.

Was the upset because you've been doing this really brilliantly on your own, then your curiosity led you here, then you felt overwhelmed?

Anyway, whether that was the case or not, none of my business.

I saw your reply to Neil re green tea and I think you would feel the same way about me and some of my views.

Maybe scrap over tea another day.

[Hidden in reply to BellaBee10]

A bun fight perhaps? 😜

[BellaBee10 in reply to Hidden]

I don't eat buns with my tea, but I'd take aim with shortbread fingers. Jonny, I can not tell you how supportive of us Neil is. You obviously did your FCR quite smoothly. I don't know what I would have done without Neil or others on here.

[London_Girl in reply to BellaBee10]

Here here !

[Peggy4 in reply to BellaBee10]

Oh my, I so agree.

Peggy

[AmericanRonin in reply to BellaBee10]

Neil is the man!

[Bubnojay]

Hooray!

pleased to hear you are staying with us Darkbagpuss. Yep dragging yourself back up again can be hard but we keep on keeping on, and good for us.

Good for you, and lovely for us to have you remain. We all count.

Bubnjay1

[ygtgo]

" Hell no... "

Now that is being positive !

ygtgo

[Peggy4]

Good to have you on board. This is a great place to come to. Some days we need support and other days we are able to give it, either way works.

Here we see the good, the bad and the ugly. I think all in all it gives us a good perspective.

Peggy

[Newdawn Administrator]

Good to hear it Jonny!

We need each other.

Newdawn

[ballyhoo]

Glad your back,Were all in this Journey together, this is a great site. I appreciate the noligable , kind and caring people here. keep positive.

[AussieNeil Partner Administrator]

Welcome back Jonny; I'm very glad you are staying. You've found a very supportive community as you've personally observed from the many kind messages you've received. To have someone like you join our community after such a long remission is extremely rare. That's very understandable, given the natural wish to forget about a cancer scare and get on with our lives, so don't ever underestimate the huge positive boost your story has on those just starting their CLL journey or starting treatment, particularly with FCR (which is what my specialist again told I would be receiving if I needed treatment when I saw her this week.) Those diagnosed at a relatively young age like you at 34 in particular appreciate the encouragement of reading your story. Could I encourage you to add a brief summary of your introductory post into your profile? healthunlocked.com/user/dar...

As you get to know me, you'll find I can lack tact at times. I was very tired from a 600km round trip to see my specialist and some concurrent issues didn't help. (I'm still in W&W and thankfully my CLL seems to have stabilised since I started on IVIG. Interestingly, like you, I also saw a large increase in the number and size of my warts soon after diagnosis, but now they are virtually gone. I suspect it was the impact of both the CLL and a CMV infection that caused that, but I really don't know.)

If you have access to your test results taken during your FCR trial experience 12 years ago, you might be able to confirm your IGHV mutational status and really be able to forget about your CLL. If you find you are unmutated, then your experience will even further encourage our members.

Irrespective, as you've seen from the many messages you've received, you are still welcome here.

Neil

[Hidden in reply to AussieNeil]

Thanks man!

i'll have to let you know about the trial results because my annual poke n prod isn't due until the summer & my folder has been split down and archived three or four times over the last few years.

I don't always get to see the head guy either, but I'll see what i can do.

Tried to edit my profile but it didn't work. I'm on my iphone though cos the wifi is down so maybe it's that. I'll try again in the morning if it comes back again.

You'll have to forgive me dude, but I'm not really up on the acronyms. I didn't really spend a lot of time reading about it back in the day cos I figured it'd be less for me to worry about. I left all the hard work up to the doctors & focused on having a good old time. 🚀 (they get paid loads of money for it. Thought it was only fair!)

[CLLCalifornia-USA]

So glad you're sticking around. I'm sure you have a lot to share and we can learn a lot from you. We don't always have to agree on everything but I love the discussions. Kindness, Sally (USA)

[Woky]

Brilliant keep positive! - we all have ups and downs and life can be a bitch ..... We just have to do the best we can. Life is good today I have my 89 year old mum with dementia with me and she's just loving the pink camelias coming out in the garden

One day at a time - don't worry be happy!

[Loves2walk]

Glad you're back. This is a great little group.