Hi everybody,

Having read your posts I’m sorry that you have not been well.

I fully agree with Maureen, I have had colds, coughs and tummy bugs in the last 20 years but no more than any other members of my family.

I do remember that when I was first diagnosed with ET and started taking the tablets my mind went into overdrive and it was all I could think about. It was a shock as I didn’t have any symptoms and had always been so well. After a few months this passed as I realised my platelets had come down to an acceptable level so reducing any risk of blood clots.

The best advice I can give you is try and live your life normally. ET has never stopped me doing anything and In May we are going to Disneyland Florida with two of our grandchildren (boys 10 & 8)!

Hope you feel better soon

Vanessa

Hi everyone 

feeling better not a nice thing to have very nasty stomach bug. The doctor told me I would have caught the bug either with or without ET and any meds I was on or not on no difference 

He did say he understood why I was worried and with time I would learn to cope more.

So like everyone says on here live life . Hope you have a great time in Florida Vanessa well done to you.

Booked up for Cyprus in the summer plenty of sun tan and plenty of exploring.

once more guys thanks for your helpful posts 

Michael 

Hi Michael

Higher up in the string of posts, Andnessb gave a bit of advice for when you are in the sun.

You need to be careful in the sun, make sure you always use a high factor sun cream as it can make you more prone to skin cancer. This information is not to worry you, but if you don’t know about it you can’t protect yourself!

So book up your holidays, but don't forget the sun cream.

Maureen

Hi all again 

Thanks Maureen I will use high factor sun cream better be safe than sorry 

Will be touring about and exploring with the family 

Thanks Maureen 

Hi everyone, 

I hope you are doing fine. 

My mum is diagnosed with ET about 3 months ago and she has been using hydroxyurea tablets, thromboreductin and aspirin. She has been doing fine and her platelets count has been normal until a few days ago. 

Suddenly, she started having nose bleed almost everyday for the last 4 days!

I would be very grateful if know anything about this and can advise me. 

Thank you MaureenV and everyone

Hello HMD

On rare occasions, I have had a nose bleed when I have blown my nose, but it stops when I put pressure on the nose and doesn't re-occur that day.  Whether my nose bled because I blew too hard, we were in a period of high pressure, or the wind was in the wrong direction - I don't know.  The internet says  'The most common causes of nosebleeds are dryness (often caused by indoor heat in the winter) and nose picking. These 2 things work together — nose picking occurs more often when mucus in the nose is dry and crusty.'  So nosebleeds can happen for a variety of reasons, but, if it continues to happen for a period of days, I would suggest a visit to her GP would reassure you and her.  I am sure he will refer her on if need be.

Your Mum is lucky to have you caring about her - roles beginning to reverse - I am sure she totally appreciates your love and concern.

Maureen

So good to read about just getting on with life. I'd been worried about infections etc, thinking that platelets may be lowered but white blood cells too if not under control - which it will be. All the same, had got this idea in my head.

Another idea - drinking loads of water - I'm doing so much more. Anything in the copper bottle thing, good for cancer, or rubbish? Rather than plastic bottles. Am keen to be as fit as I can by controlling what I can control, accepting what I can't (leaving that to my wonderful haematologist)

Hi Maureen, 

Thank you very much for your reply. We have done a blood test and her platelets number is high so we are seeing the doctor soon and let's see what he says. 

She is my world and I do whatever humanly possible and thank you! 

Hi 

Quick separate note. I had a spate of bleeds and mentioned to my haematology nurse. I was advised to stop aspirin to clear possible clog in my nasal areas. This worked for me

All the best