hello
since my husband has been diagnosed last June the last few weeks my husband said he just feels upset like no spark in life no more like not excited to do anything or go anywhere. and It’s just always on my mind worrying about what can happen. I’m not sure what to do. I don’t want to speak to my family about it.
hello Green1988, I am so sorry to hear that your husband is feeling like this, it would be advisable for him and perhaps you as well, to speak to his GP about how he is feeling, his GP will be able to help and advise your husband on ways to lift his mood, and to feel better in himself. It might also help to speak to your husband's clinical nurse specialist at the hospital about how he is feeling. Best wishes, Maz
Completely empathise with you and your husband Green1988 . There is often a period of time needed to process an MPN diagnosis, some people process it quicker than others but whatever he's feeling, I'm sure it will pass with the right help and support. GP / MPN nurse is always a good first port of call but other mental health charities are available if your husband wanted a completely separate resource to tap into. I myself have found great use in the charity CALM, which specialises in men's mental health across a range of different areas: thecalmzone.net/. Wish you and your husband all the best
It is not uncommon to encounter anxiety and depression when dealing with a significant health issue. Suffering in silence is not a good way to handle things. Suggest finding a way for both of you to be able to express yourselves and seek the support you need. As Mazcd suggests, reaching out to your husband's (and your) care team is a very good idea. Your GP or Nurse Specialist can refer you to the appropriate source for intervention if needed.
Hi, I don’t know what your husband’s diagnosis or prognosis is but there are lots of us on here with MPN’s who were diagnosed 10,15,20 even 30 years ago and are enjoying life. Hearing the words, “ you have cancer” is earth shattering. But when I was diagnosed with MF over 10 years ago my doctors all said I was likely to die of something unrelated to my MPN. Many of us have to make some adjustments to our lifestyles is we have fatigue, etc but we’re still able to enjoy our lives. This cancer affects you too. Maybe you & your husband should see a psychologist if talking to your doctor doesn’t help. There are a number of us who have benefited from counseling & even anti-depressants (and anti anxiety meds) at various times. I’m so glad he has you to advocate for him. Good luck & don’t give up. But be sure to take care of yourself too. Katie
When I was diagnosed in 2005 I was in a mess, physically and mentally. I needed so many venesections which were so draining and then there was the confusion - how, why did I get this, and anxiety of extreme kind. My rational mind was inactive, I was in a swirl of misery. My local haematologist was kind and patient for which I am eternally grateful. I was able to have weekly phone conversations with a nurse counsellor who had to read up on PV! And gradually I calmed down. I was able to understand that this gene malfunction had to be managed so bloods could were in range. Then I went on interferon. But still needed venesections for some years. And I didn't tolerate interferon well. But! Time passes and the body and mind adjust and now having PV, while a constant in my life, is in the background. I share this so you can know that there is life after diagnosis and after the initial shock. Like others above I am now 18 years with PV and all is well. I hope these replies will help you and you can help your husband. And getting counselling to calm your worries would be helpful too. All the best.
Hello Mport thank you for sharing your story.I'm 23 years old diagnosed in 2018. I'm very uncertain about life. I keep staying in denial over this, recently my symptoms have increased. Like itching and night sweats. Did your journey so far to smooth or you too had symptoms on and off?
Hi Xuzy,I am sad to hear you are finding it difficult to come to terms with your diagnosis. It must be quite a shock to hear your diagnosis so young. You are still relatively new to it all after 5 years and the symptoms it brings and the swings in the blood counts.
My situation didn't stabilise for a long time. Counts would increase, I would have a venesection, they would drop, and then i would wait for them to rise again. I had a high colour and people would say you look so well. I look back in amusement at my crossness about this. Too many red blood cells caused it, not good health.
I never told people I had PV. I have a 'blood condition', i have too many red blood cells. I think this helped me be less focused on the bigger issues and words. And friends and relatives accepted that so I didn't have 'poor you' conversations. I think this helped me very much.
I think overcoming the itchiness is different for many of us. Some can only have cold showers to avoid it. I have overcome it by having hot baths. No cold water. Night sweats, well I can't answer that. I just get too hot and I have no idea why. They don't happen too often but I do keep room cool and try not to get too hot.
I was diagnosed at 57 and I am now 74. I never forget I have PV but it is low key, in the background. But I still feel weary the day after interferon injection.
I hope you too will be able to settle your mind and know you can live a long and happy life and that this blood condition is manageable.
Very best wishes Mairead
Hi there, I am sorry to hear that you and your husband are going through a rough time and I totally understand this as I and my husband and even my daughters went through something similar when my progression was first discovered. It was strange for me going from the person that created fun and events in my families lives, to the person that was ill. I felt emotionally drained and panicked. I also didn’t know how to help my family come to terms with things. What has really helped me has been writing a journal. Getting my thoughts onto paper has helped me process them and I am encouraging family to discuss their feelings with friends that they trust. And we have all decided to just get out and find joy in everyday. I have just come home from a trip to Iceland. Nature is truly spectacular and heals me just by being in it. I only hope that you can both seek help with either trusted friends, family or professionals. You do deserve a fulfilled and happy life and this diagnosis has taught me just how precious this is. Sending you positive and caring thoughts . Penny
I did an online CBT course, it helped me get things in perspective, what could and couldn’t be changed. It was free. I think it was IEOS, I’ll check that.
could I ask what
CBT stands for please, Lizzie 🌸
Hi Green1988. As soon as I read your post I could see you have that helpless feeling I'm so familiar with. That "where do I turn for help for him". Although I am the one with PV, my boyfriend has his own health issues, and goes through these "low" periods. For him it seems to be because he was this very healthy guy who could do anything, then all of a sudden illness entered his life. Thankfully he can still do most things, but sometimes he gets so depressed I just don't know what to do for him to help him get out of the funk. All I can try to do is stay positive and share that positivity with him, let him know I'm right beside him through all of this, and continually remind him he is the only one who can control how he reacts to anything thrown his way.
When he's going through periods of depression and anger, I try to find something he enjoys doing and suggest we do it. This gets us out of the house and focused on something else. That usually helps get him back on track (at least for a while). Try to get your husband to focus on what he can still do in his life and see if you can steer him away from the negatives. Perhaps share with him all the positive stories from the folks here in this group. Maybe hearing how many people were diagnosed 10, 20, 30 years ago and have been leading very full and happy lives, will help him get more positive perspective. Get him talking about his feelings as much as possible and for yourself, find someone who can be for you what you are for him. It's so important for you to not feel like you are alone in this. I hope things improve for both of you.
I completely understand where he is coming from. I was diagnosed a little over 2 years ago. My daughter was 2 years old. And since I have discovered other things about my health, but I couldn’t survive without my family. The love and support is what keeps me going and somewhere in there I have found happiness again. My husband reminds me everyday to live in the moment and don’t think to hard about the future. Totally easier said than done but I realized worrying about what might happen I am missing my life, My doctors have said what everyone else says here this can be managed. It has changed my life in some ways for the better. I appreciate everyday, my faith is stronger and if I want to do something I do it! I know it is hard, but it will get better. And the people on this site are the best at answering questions and reassuring you. And medicine is changing! They are coming up with stuff all the time! I believe they may even cure PV as a result of curing another similar disease. I will add him to my long prayer list. He will be ok. All of us have our own journey with this. I also started a journal but it is for my daughter. I just jot down things as I go along. I hope this helps!
Hi, so sorry to hear how your husband is feeling, any health diagnosis can hit hard and we all process it in different ways. If you are in the UK and your hubby is open to it, many cancer charities offer counselling for free - Leukaemia Care is just one of them - leukaemiacare.org.uk/suppor... or you can self refer for CBT through the NHS, I personally found counselling really helpful when trying to get my joie de vivre back after diagnosis but know that it is possible to feel better, sometimes we just need help to find the blue sky behind those clouds. Sending you best wishes x
It is very challenging to wrap your head around this diagnosis and we all handle it in different ways. Last year was challenging for me due to another health issue and I did hit a low point. I'm 76 and wondered if I'd ever get my energy back, but I forced myself to get back into living with stepping up my outdoor activities. For me, riding my bike or kayaking does the trick. I think I'd fall apart without the outdoor time. Maybe consider starting with short walks in natural settings and go on from there. Personally, I'm a huge believer in the healing power of time spent in natural settings. It's a great way to rid oneself of "the bullshit of life". wishing you and your husband better times.
I’m 72 so a lot older, however I can understand how he feels. It’s a lot to take on board. I’m an actor and my work to me is stimulating and exciting and I’ve been able to keep going despite being ET Jak 2. So much depends on the treatment team, and how they deal with you. Are they positive and upbeat or full of woe and ‘No you can’t do that!’. The advice and camaraderie of this Forum can be so helpful, bouncing ideas back and forwards. Getting the right specialists who really know about MPNs rather than the regular Haematologist. Finding that thing that ignites the spark could be Painting - Computers-Music-Maths, anything that can focus or take the mind to another place. You had so much good advice from everyone here so I’m sure you’ll find the right path. Lots of love for the future which can be so rich and rewarding.
Paul
You have received good advice from all the responses.
Maybe start with your family GP and go from there. It could be something entirely unrelated to the MPN. I think we all tend to blame everything on our MPN but there is always the possibility of another issue. Good luck in filtering it all out. Best
thanks to everyone for your replies I appreciate it. ❤️ It’s just the not knowing really scares me.
It’s important that you both see a therapist. A few years ago I went to a therapist for a few months and I cried the whole hour each time. I couldn’t do that with my family, so it really helped put things in perspective.
Diagnosis of Essential Thrombocythaemia..Worrying
Hoping there's no need to worry.
Worried about symptoms
painful spleen, as me worried
