the worries of W&W

[Coatsee]

Hi - I am a 66 year old female from Australia. First diagnosed when I had a blood test for something else. I have been on W&W for three years now. At first it was very stressful, but am now sort of used to it. Compared to those folk with the full disease and having treatment I am very lucky so for. However, in the last couple of days a lymph node in my neck has become enlarged (small plum size). I do get tired a lot as well. I am guessing from what has been written in previous posts, that this is to be expected and not to panic. I don't have an appointment with my specialist until late Sept (when I return from OS). Reading the posts here has helped me to get myself back into perspective - thanks!

[Newdawn Administrator]

Hi Coatsee and a very warm welcome to you!

Good to hear you're keeping well and have managed to adjust to your CLL diagnosis. I might be inclined to contact my Consultant's secretary about the sudden, enlarged lump purely as a precautionary measure. If it's suddenly enlarged and as big as a small plum, he may send you for an ultrasound in advance of the appointment. I'm not sure how possible this is for you but I suspect I might do that in your situation.

Many members have experienced this and have found an ultrasound reassuring with confirmation that they're just enlarged lymph nodes. With an appointment in late September, it's a bit of a while to wait. Does 'OS' mean overseas? If so, it may be difficult to address it quickly but seek advice if it continues to concern you.

Best wishes,

Newdawn

[Coatsee in reply to Newdawn]

Thanks for the good advice Newdawn. I think I am OK and if the lump is still there in a couple of days I will call the secretary and see what he says. It is a bit hard to sort out an ultrasound here and the rotten travel insurance does not cover an existing illness so could be expensive as well :-(. However if I need to do it I will. Thanks again!

[Coatsee in reply to Newdawn]

and yes OS is overseas - France to be exact.

[mariemascio]

Hi Coatsee -

Welcome to the forum, I am very new here and I appreciate your perspective from three years on W&W. I'm very much in the "omg I can't believe this is happening to me!" stage three weeks after diagnosis. It's good to hear that it gets a little easier with time. I hope that you have the very best of medical care and advice when you go to consult with the specialist.

Take care,

- Marie

[Coatsee in reply to mariemascio]

Hi Marie - I know what you feel like. I was quite overwhelmed by the W&W approach after diagnosis - it was like waiting for some dreadful thing to happen. But I guess you get used to almost anything. I am very grateful to be at a stage of not yet requiring treatment. Somehow it feels like being a bit a of a fraud to be diagnosed but not really sick yet. I am very happy with my specialist and think I will be OK until I get home. Nice to hear from you and good luck to you too.

[roszika]

Hi Like you I was first diagnosed at 64 when I had a blood test for something else. I am also an Aussie. 6 years later I am almost at the point of starting a mild treatment but like you I find these posts so encouraging and there is a lot of useful information. I also have an enlarged lymph node in neck but my WBC and lymphocyte count have suddenly increased a lot more than previously. Anyway apart from tiredness I feel OK. Who knows. I help look after 4 grandchildren from age 6 years down to 14 weeks and even someone that has no condition would be tired with that. Anyway good luck

[Coatsee in reply to roszika]

It is good to hear from someone that is in the same boat! I am hoping that I can go on for a few more years without treatment - fingers crossed. And, as a grandmother myself who cares for a 4 year old twice a week, I reckon some of the tiredness at least must be from that :-).

[roszika]

right on !!!!!