Would anybody be able to tell me please, following yesterday’s conference, what the guidance is for me - I’m newly diagnosed (just before Cornavirus took a grip on the world) ET JAK2+, taking only Aspirin, and I’m 47 years old?
I would watch it / research it myself but I’ve been suffering with really bad anxiety since my diagnosis, and although I’m better than I was, the word Coronavirus instantly makes me feel anxious and afraid. So much so that I’ve removed myself from all of the Facebook MPN groups, as they scare the hell out of me (my consultant did warn me of this, she told me to only use MPN Voice only, but I thought I knew better..... turns out I didn’t!).
I think ordinarily I would’ve dealt with my diagnosis okay, but then the bmb (which it took me a week or two of being on fb mpn groups to realise could actually come back with really bad results, diagnosing me with much worse than ET!!), and the wait (10 weeks) for my results and then Coronavirus taking over the world, just resulted in me becoming really ill for a few weeks - but now with medication I’m mostly better so long as there’s no mention of ET or Coronavirus...... I realise I must sound crazy
My partner and my daughter have been self isolating with me, but my partner is going back to work on Tuesday - and this frightens me. I think the only thing I can do is not share a bed with him, keep my distance from him (he will have one sofa, we will have the other) he will have different towels etc, and will shower as soon as he gets in. I’m sending him armed with lots of hand gel and wipes etc (he’s a lorry driver, so the only contact will be when he arrives and has to swap over paperwork etc). But any other advice that came out of these seminars would be much appreciated.
Thanks in advance, and apologies for such a long message!!
Jules
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Anxiety is truly awful, I have experienced it in the past, so I totally understand what you’re experiencing right now. If it’s not ‘nipped in the bud’ it can easily escalate. You have done the right thing to remove yourself from Facebook etc. I would also avoid the news whilst you feel the way you do. Stay with this site, we will support you.
I’m not going to say what was said in the webinar, not that anything negative was said, but for fear of any confusion or misinterpretation. I know how easily that can heighten anxiety. However, what I will say is, I genuinely felt it was all very positive. I get the impression that’s what others felt too.
I understand you’re worried about your husband going back to work. I know there are many people in the same situation, so you’re not on your own. As long as you’re sensible, which it sounds as though you are by the plan you have ready to put in place, I’m sure everything will be just fine.
By the way, it is important to remember that ET is the most benign of all the MPNs. Additionally, you are young and the beneficial effects of being on aspirin are all very favourable.
If you've been given a contact person at haematology, usually a specialist nurse, you could contact them for advice. What you are concerned about is something which is a concern for many. It's a good question to ask your health professionals.
To reassure you. You don't sound crazy to me. It's always good to ask advice and share concerns.
Well done for taking the positives steps of removing yourself from the groups, which are too much for you, at the moment.
Not crazy at all! Anxiety is something very many of us suffer / suffered with around the time of diagnosis. It can be an incredibly confusing, exhausting time and your head is probably all over the place. It’s very easy to feel overwhelmed. Add in Coronovirus which has probably unsettled every single one of us in some way and it’s a perfect cocktail for creating feelings of great anxiety.
On the positive side, you’re relatively young, you have ET and you’re only on aspirin. From the first MPN Webinar the takeaway message was you’re probably at no more risk of experiencing a severe response to COVID than the next person so follow the basic precautions.
The blood cancers message / categorisation is a bit of a blunt instrument. Certainly not all blood cancers and blood cancer patients are equal (even among those with MPNs).
The second Webinar is definitely worth watching. Like the first it includes world class MPN experts like Profs Harrison and Mead. They are incredibly knowledgeable and completely down to earth. It’s full of interesting, non alarmist information.
This webinar has a large segment on all the trials taking place to find a vaccine and treatments for COVID much of which overlaps with our understanding of MPNs. It also highlights how understanding of COVID is moving apace. So for example, while in the last seminar people were already flagging the link between emerging data about blood clots and Coronovirus it appears now that MPNers are actually at no more risk than anyone else. Only if you’ve already had a major blood clot that has damaged and may have compromised one of your major organs (which does not apply in your case) did Prof Harrison suggested some caution.
The webinar also highlighted all the sources of help and support available especially for anyone struggling to manage feelings of anxiety and the well being of their mental health. So please, definitely get in touch with your CNS, and check out both the MPN Voice website as well as Leukaemia Care (who facilitated the webinar) for sources of support. I’m sure just talking with someone would do much to alleviate some of the anxiety you are experiencing and help gain some perspective.
I would certainly take a look at the 2nd webinar as Ebot suggested. Profs Harrison & Mead are extremely knowledgable and could even put your mind at ease.
I think you're doing the right thing avoiding all the Facebook hysteria. I found that by educating myself about my MPN I feel more in control and talking to your specialist nurse (if you have one?) may go a long way to reducing the anxiety.
Everyone is different and reacts in different ways. I was never told that my PV is a blood cancer when I was diagnosed 11 plus years ago. I was told it was PV. My GP went through it all with me. I suppose, because of what I was told and I've never really worried about it as I just tell people I make too many red blood cells and maybe make too much light of it. Yes, things could get worse in the future but I believe that medical science will have moved on by then. Thankfully I have a good haematoligist who looks after me and never misses a thing, even other test that are not blood related.
As I say we all react differently and deal with things in different ways, so don't feel guilty about being anxious. Only look at MPN and this forum- realistic and sensible information. Dr Google has lots of information that is wrong or out of date.
It's well worth looking at the Webinar as I found it very reassuring and not the daily propaganda that the politicians want you to hear. Stay positive. It helps to talk about your feelings, we have all been there and understand and everyone on here only wants to help and give support.
Hi Jules, try not to worry - I realise that it's easy to just say that. I am 53 and was diagnosed with ET when I was 27. I only took aspirin when I was younger so it sounds like you are fit and healthy. Every case is individual but I checked with my haematologist and I am still going out for walks and self isolating but not shielding as it didn't seem necessary. I realise that you are newly diagnosed and it's a worrying time but try to rest assured that there are far more treatments than when I was diagnosed and options out there and you should check with your haematologist about what you should be doing now. I try not to let my MPN define who I am and only my family and close friends are aware of my blood disorder which is what it used to be called. Good luck with everything and I hope this brings you some positivity. Lisa
Hi Jules Welcome to the mpn buddy world x What you are experiencing does not make uou mad Before my bone marrow around 10 yrs ago I cried for 2 weeks had bad anxiety, sadly I have always been a worrier about everything and everyone, after my diagnosis I suffered bad anxiety, my family especially my husband suffered too. Iam going to die, prepare for me dying, crying I dont want to leave you Honestly I was really ill with depression and anxiety and off work for weeks. I too made a mistake of googling my life was almost over everything I read was negative. Well Jules wish I could turn clock back 10 years I regret to say I wasted lots of times worrying about not being here I should have been living each day instead of looking int the future with negativity. What you are feeling is natural, it will get better, and agree this site is best place for support, it has helped me lots x I am on 3 hydroxy a day have been for a long time , I do have bad times but good too. I still suffer anxiety lots but over the years I have learnt to live with it a lot better x Counselling Reiki looking at diet etc Take care mpn buddy Here if ever needing to talk, we all are xxx
You have already heard the basic assessment, with ET alone - you are likely at no more risk than anyone else in your age group. Use due caution and care. Follow the recommended guidelines for your risk group.
I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. At age 64, still alive and kicking and have a good life. There have been some challenges of late, but not directly due to the MPN. These interesting learning opportunities resulted in my becoming far more educated about MPNs and other issues impacting my health. What I have found for myself is that knowledge is power. Feeling empowered decreases negative feelings like anxiety and fear. "Fear is the mind-killer" (Frank Herbert). After a particularly negative experience with one set of docs and a surgical procedure, I also became a strong and assertive advocate for my own healthcare planning. Assertive patients receive higher quality care. Passive patients do not. Despite a significant set of recent past and coming healthcare issues, my stress level is lower now than it was before I shifted my thinking and strategy related to my health.
The level of anxiety you are describing is quite dreadful to experience. Having been there and done that, I can assure you that you can change how you are feeling now and get to a better place. Do understand that this is both a state of mind and body. The mind-body connection is quite powerful and anxiety is a cyclic self-destructive trap that you have to break free of. By addressing both the physiological and cognitive/affective aspects of the anxiety cycle, you can get to a much better place. Please do seek out assistance with this as you do not have to keep feeling this way.
I was diagnosed almost a year ago, and while my MDS/MPN is not severe, when the diagnosis and prognosis sunk in, I became very anxious, so I think if you have been diagnosed that recently, it must be very frightening for you.
You are doing all the right things - you can't do much more, though if you are working, then (unless you work from home) you can't go back for some time. The only thing I can suggest, particularly if you are feeling ok otherwise, is to realise that your health has not changed. Until you had the BMB, you had no idea, and it is the knowing about it that makes the difference. It's this new knowledge and the thoughts and feelings you are experiencing about it - happening at a time when everything seems surreal and is bound to magnify what's going on with you.
It's easy for me to say because I'm retired and nearly a year has passed; I'm on watch and wait, and each time I have an appointment there's not much change. I'm feeling better since Lockdown because for some strange reason I am sleeping better, and now all I have to worry about is having a carrier come to the house one day and catching the virus.
So please try to see that it is not your condition, and it's not Coronavirus but your own thoughts and feelings that are frightening you. Then send those thoughts and feelings away, like clouds in the wind because they have no substance.
You don't sound crazy; you sound normal. You will have your work cut out for you now, with all the extra washing and reorganising of your home. I hope it all works out for you. Stay safe.
I'm (nearly) 46 and was diagnosed with ET JAK+ last year. Like you I'm on an aspirin only and I am familiar with how isolating and lonely anxiety feels. I remember finding a quote by a leading haematologist very reassuring when he said that we are more likely to die with ET than from it. This is a wonderful site, it always feels like a virtual hug and it provides a very reassuring context for our (quite understandable) fears. I am very happy to chat if you feel like having a buddy of similar age and situation.
Meanwhile please don't be too scared, as Gaithersburg noted, it used to be called a blood disorder which sounds much less frightening!
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