Hi Mark

You definitely sound as though you are getting there, putting ET as an important but minor part of you.  Like some other facts of life, it comes along with you as part of your journey, but does not stop you travelling.

Glad to hear you intend to go back to work in the new year and I am sure you know that you are likely to feel more tired than usual to start with.  Apparently, 'they' say that it takes as many work days as the number of weeks we were off, for us to feel 'normal' and on top of things.  Hopefully though not 30 days or so for you! - but the first week or so could make you feel a bit exhausted.

So keep taking the tablets, get on with your life and have a lovely Christmas.

Here's to 2022

Maureen

Thank you Maureen 

You are so positive, and have been a great help.

Merry Christmas to you.

Mark

Good Morning L 

I hope you had a great Christmas, we did.

My children must of been good as Santa appears to have delivered most things that they asked for.

I did respond in general to this group, but unsure when replying it flags up to all? 

If not I thought I would respond to yourself directly. As it was yourself who I first read about and contacted through this group.

I hope your tests in January go ok, keep me posted. Still unsure whether I will need further testing? Was diagnosed Calr mutation.

As Maureen mentioned to myself its like an allergy, can be controlled but not cured. Still a big worry though, just don't google anything. Was told by haematologist any questions speak to them. My haematologist is lovely, listened to my concerns and had a nice discussion. She even said that in the 20 years of being a haematologist she had never seen the ET progress any further. Which was so uplifting to hear.

Im still early days of monitoring, been up and down last few weeks. Not sure why so anxious, as grateful this condition has been found. Been so worried since my first blood test in December which resulted in high platelets 1200 and potassium 6.1. I then attended hospital couple days later due to tingling in right hand had bloods checked and platelets 900/ potassium (3. Something) so had reduced. But this scare really has knocked me, its made me more anxious.

Im taking Kalms on a daily basis now, which i hope will reduce anxiety naturally in time. As my doctor tried to put me on anti depressants. But with support of family and few friends I will beat this anxiety as naturally as possible. 

Unlike Maureen on this group, I am new to all this. But am happy to lend a listening ear or any help if required to yourself or anyone else on here.

May i wish you luck for your tests, and lets all hope 2022 will be a better year for all.

All the best

Mark

Hi Mark 

You sound so much more positive so presumably Father Christmas brought some good stuff for you as well.  I believe that we all can see any posts put on this particular ET stream and sometimes my computer 'pings' twice with two messages the same.  However, as always, better twice than miss something!

Happy New Year to all and keep safe from Covid.

Maureen

Evening All,

Hope everyone is doing okay, and your new year has started well?

Quick question regarding ET, anyone else suffered with itchy skin? 

Had it before in the past, before diagnosis. So was not concerned but am aware can be caused by ET.

But also coincidental that I been swimming this week, chlorine related?

I await your wonderful help.

Thanks

Mark

Hi I had terrible itchy skin mainly at night as soon as I lay down in bed.   This was when I was on aspirin only.   Now I'm on Pegasys Interferon I don't get it at all anymore.   It was horrible as I kept me awake at night so I totally understand how bad it can be.   Tell your doctor about it especially if it's affecting your quality of life. 
Best wishes 

claire 

Hi Claire 

Thank you for quick response.

I will keep an eye on it, only really been noticeable this week. Been on aspirin since October 2021 as low risk category.

Itchy forearms, thighs and torso tonight.

Just creamed up, to relieve it.

Did aspirin cause you to have a rumbling belly?

Ive noticed that lately, but suffering with anxiety.

So many anxiety symptoms, are identical to ET.

Thanks 

Mark

Hi I take the Aspirin 75mg Gastro-Resistant Tablets & I've never had a problem on them.   I've been on them since 2019 and on Pegasys since 2020.  Claire 

Thanks Claire 

In december I hit a wall of anxiety, this was due to first real time of ET monitoring since Tumour removal in August.

I was fine when I was having bloods weekly and on hydroxycarbamide, during my Pre op for Meningioma Tumour operation. Think this was down to my stress and worries regarding operation and outcome. Which was successful.

Now my mind is concerned about my new normal of living with ET.

Lately i feel tingles/prickling in hands, not sure if anxiety or ET symptom? Or my mind playing tricks.

Unfortunately I think im in a strange state, of accepting this new condotion and 2 monthly blood tests for life. I feel like my life is being governed by others and not myself anymore. Even that I know it's for the best.

It's hard to accept this, I am hoping with time this new normal will not feel frightening. I do not want bad health news again, like I did when being diagnosed with a brain tumour.

My real question is, how do you all remain positive and continue as normal living with this condition?

What symptoms do you suffer, are they normal for this condition?

Thanks 

Mark

I do understand.  This last year has been dramatic, upsetting, difficult to cope with and I am sure, at times frightening for you, BUT it is gone.  A new year, a new Spring, a summer to enjoy with your family, Christmas - plans for the future. 

I personally am so grateful that doctors have studied for years in order to learn how to keep me as well as possible for the rest of my life.  They are on my side and on yours as well!! 

I believe you have a treatment plan you understand with regular checks on your blood.  Perhaps you could think of these as a bit like regular dental checks, vision checks if needed., treatment for a bad cold, remedial exercises for a strained arm, in fact all the different 'things' that happen to us as we live our life.

If you experience persistent 'odd feelings', note when they happen.  In fact, keep a diary for a while and if they become very regular and upset you, mention them at your next checkup.  I kept getting a painful toe and discovered I had gout - that is for old men who drink a lot of port I thought - nevertheless, I was prescribed yet another tablet and no pain.  What would we do without dispensing chemists?

I was diagnosed over 20 years ago, at the same time as I was retiring, which is life-changing anyway.  However I felt safer with the knowledge that my ET was treatable, as it made the risk of heart attacks or strokes far less likely as I age.

Lastly, keep sharing with us - we do understand because we are there with you.

Maureen x