Still the waiting game..

[BrandyC84]

It has been about three weeks since I was tested for the Jak2 mutation. I have had bad anxiety since I heard that's what they wanted to test me for due to my labs. I did fine comfort in this blog page but I'm still anxious about the results..My GP stated all labs point to this but it's still unknown. I pray it's negative but then again it will be back to the drawing board. I'm tired I'm hurting and I feel like I have given up on life. I'm a mother of 4 beautiful children and a wife. And I feel I'm just barely being there for them. What would any of you do for this anxiety turned depression almost. All I do is work and sleep..while awake I think what the hell am I going to do if it's positive.. I'm sorry for this long paragraph.

[Raphael_UK]

We are all with you, we all have been through that, things will settle down, acceptance is the first part to recovery. Do you have someone local to talk to? Things like relaxing techniques really do help, but it takes time to get into it, things like yoga, tai chi, meditation and mindfulness. Sometimes its the fear that gets to us, eliminate that and this illness is a lot easier to cope with. If the anxiety gets too bad it may be worth temporary medicating so that you can think straight and then maybe counselling to help you cope. We are all here for each other. I wish you all the best - Rapahel

[BrandyC84 in reply to Raphael_UK]

Thanks for the response..I have a strong support system I just have not let everyone know what's going on..I want to be sure of things first but the unknown is killing me..My husband and GP along with the other Drs have been a lot of help. Some days are better than others that's for sure. Thanks again for reaching out

[Sanmob]

Hello brandy,

I'm so sorry that you are feeling as you do. Such anxiety is awful and difficult to get out of. All I can say to you is that I was diagnosed with PV 4 years ago and Jak2positive went along with the diagnosis. Since that time, I have had regular visits to a haemotologist, which have gradually reduced to every 3 months. I take aspirin daily and 1 hydroxicarbamide 5 times a week. Apart from itching, particularly after a shower, I have few symptoms and carry on life as normal. My children are all grown up now, and so I don't have those responsibilities, but I am able to enjoy life, knowing that I have a chronic illness which is well under control and where my life expectancy will be more or less normal.

I hope all that helps. Let us know when you get your diagnosis and come back to this helpful site whenever you need to.

Kindest regards,

Sandra.

[BrandyC84 in reply to Sanmob]

Thanks for the response..I am glad that this site is here. As soon as I receive them negative or positive I will post it. Thanks again

[Cja1956]

Hi, Brandy,

I was diagnosed with the Jak2 gene and ET 11 years ago at age 52. My hemotologist called it a blood disorder. He put me on anagrelide and hydroxy. You can lead a normal life for a long time if you monitor this closely. About 2 years ago, I was diagnosed with PV, as well. I just told my adult kids, now age 28 and 31, that it’s cancer but I’m taking care of it and not to worry. My worst symptom is fatigue and headaches from the new meds I am taking called Jakafi. I hope this helps. Good luck on this new journey.

[Aime]

Hi BrandyC84, I totally understand how you are feeling and have been on the same road as you, quite a few times, when waiting for different results. You must try and turn this anxiety into something more positive as you will make yourself ill. If the worst case is that you have PV or ET, it is NOT a death sentence. Many people on this forum have had these illnesses for years and are still alive and kicking. As long as your condition is monitored and you’re treated accordingly, you can expect a normal life span.

Yes these are cancers but they are far less aggressive and very treatable compared to breast and bowel cancer. Please keep posting so we can support you. Kindest regards Aime xx😺😺. PS have a look at the MPN Voice website, which has trustworthy information. Maz, our editor who monitors this forum, can provide a buddy for you if you have ET or PV.

[BrandyC84 in reply to Aime]

Oh thanks so much for this response..I am trying my best to do other things to help with my anxiety..which is how and why I found this site. It helps me kind of at ease my thoughts..and also my husbands.. thanks so much

[Jennifermcd]

Hi Brandy, did you ever get your results?