I look back fondly on the days when I was only worried about having n MPN. In the past few weeks I developed a blood clot. That has led to initiation of hydroxyurea. Fortunately, I am tolerating that well and platelets are starting to come down. Then I asked that intermittent pain on my left side be investigated. An ultrasound revealed a very large mass along with a small focus on the liver. This past week I met with an oncologist who gave me hope that the tumor is benign. Subsequent bloodwork shows that all tumor markers are negative for cancer. Major surgery is in my futre however. Two MRIs are scheduled for tomorrow. One cannot make these things up and I still have difficulty believing I have all this going on at once. Prayers requestd. Beth
Update: I look back fondly on the days when I was... - MPN Voice
Update
Hope all goes well with you, Beth. Will pray for your speedy recovery!
May God give you all the strength you need recover soon.
At least platelets are going down Beth.
And sounds like medics are looking after
Let us know how you get on tommorow
A poem for you
When Things go wrong, as they sometimes will,When the road you're trudging seems all uphill,
And you want to Smile but have to sigh.
When care is pressing you down a bit,
Rest, if you must, but don't you quit.
Life is queer with its twists and turns,
As everyone of us sometimes learns,
Success is failure turned inside out,
The silver tint of clouds of doubt,
And you never can tell how close you are,
It may be near when it seems afar,
So stick to the fight when you're hardest hit,
It's when things seem worst that you mustn't quit.
Best wishes
Carolyn
I have been there and done that with issues piling up on top of the MPN. I had four surgeries from 2018 - 2020, including heart and brain surgery. It can be quite a lot to manage. Having a well defined set of coping skills and an active support network ifs critical. I am blessed to have good friends. family, and my faith community for support. And, of course, my MPN friends and family.
Prayers are headed your way. I say the Serenity Prayer every day. I sometimes add the following "Lord, I know you would not test me more than I can bear. I just wish you did not have so much confidence in me."
All the best my friend.
Pray that you will be given all the strength you need to cope with every issue you have going on and that those caring for your situation are granted all skill and knowledge to help you through.
sending you healing prayers . Penny
Sending love and strength your way. Wishing you well. Let us know how you get on.
thinking of you, Beth and sending love and prayers. Xxx 🇬🇧
Beth - sending thoughts and prayers and hope!
Sending thoughts and prayers x
Sending hope prayers and positive thoughts to a speedy recovery!Best wishes!
Morning Beth! What a time you are having! Please let us know how you get on. In the meantime, sending you hugs, strength, love and prayers for a speedy recovery.
sending prayers and good wishes 🙏
Thinking of you xx
Take care of yourself and thinking of you X
Sending, love, hugs and prayers: Thou wilt keep him in perfect peace whose mind is stayed on Thee, memorise this it really helps 🙏🙏
Wishing you a speedy recovery 🙏 for you.
sending prayers and good wishes Poppy
I’m sorry you’re going through to such a bad time. Keep positive. Sounds like you’re in good hands. Best wishes for a speedy recovery. Keep us posted. Good luck.
my prayers are with you. You will come out of this even stronger. God bless
so sorry to hear this Beth. I send you my love and prayers .may God be with you.🙏🙏xx
know we are all here sending you very best wishes for a good outcome. Let us know how you are getting on
sending healing thoughts to you Beth. I had a similar experience when they found a large mass on my liver too. Turns out it is a rather large benign Hemangioma I have. I do find it bizarre the similarities in people with MPNs as I’ve not only got ET, but I’ve also been treated for a rare eye melanoma too, which can metastasise to the Liver and that’s when they spotted my Hemangioma!! Well! You can imagine how pleased I was to get the results back from those scans, as I thought it had been the melanoma spreading!! Glad to hear yours is benign too xx
hi sorry to hear that. Where exactly was your pain. My husband has been having like a dull ache just under left shoulder blade.
Under my left ribs. Near stomach area. Pain moves around. If your husband has been having pain for more than a few weeks he should have it checked out. What's the downside?
🙏🏻 One day at a time, learning these health problems really do give us a jolt 😆
Beth, you have a lot to deal with at one time. I will definitely lift you up in prayer.
Just months after my son died of pancreatic cancer I was diagnosed with multiple myeloma. I was on chemo for that when, less than a year later, I was diagnosed with MPN. I was started on chemo for that as well. I had symptoms of both cancers and side effects of the all the chemo drugs going on, plus I was trying to learn everything I could about what was going on inside my body.
I understand how overwhelming it gets with multiple appointments for tests and doctor visits. It can be hard to take in all the information you are now learning. I found it easier by taking a trusted friend or relative with me to the doctor to take notes and write down instructions the doctor gave me. I finally asked my doctors if I could record our visits and they were ok with that. My grandson showed me how to record on my iPhone! I go back and listen to our discussions whenever I want or need to. These ideas have been very helpful to me.
Often times it’s the not knowing that has given me anxiety. I have a strong faith so prayer has helped me immensely. My prayers and others prayers help. I learned to live one day at a time without worrying about tomorrow. And I began to realize that taking care of myself by saying no to things I would have done before has been important. It has gotten easier to say no as time has gone by.
I found out through my own experience that these blood cancers and the breast cancer I had in 2007 are very different. Just as cancers are different so are people’s experiences with cancer different. Folks mean no harm (generally) when they share their own, or someone else’s cancer experiences, with us, but try not to think you will have the same experience (especially negative ones). That can be a needless source of anxiety.
I wish you well Beth. You are in my prayers
Pam
prayers will be said. Xx
praying for you Beth.
I have had issues too. Less than 3 years ago I assumed I was a healthy young woman. Then diagnosed with PV and 6 mos ago MS. Odd because I don’t have symptoms of either. I just know how it feels when it all gets piled on at once! Feels like you can’t breathe! I know my two are related somehow since both are treated with interferon. And a lot of us on this site have experienced this, the piling on of health issues. I think Hunter said it best lean on friends and family. Try to live everyday and enjoy the beauty of today. And the serenity prayer does say it the best. I will add you to my prayer list. Just know we are here to support you.
Thoughts and best wishes to you. Xx
prayers for you
Beth, it sounds as though you are being very well taken care of by the medical staff which is very reassuring. I know you are worried but your body and mind are strong and will work together to help you recover fully from this invasive surgery. Sound like you won another very rare health issue lottery, no problem you will adjust and thrive. Sending you healing thoughts and prayers for a speedy recovery. XO ❤️❤️
Sending prayers! 🙏🏼🙏🏼🙏🏼
Prayers and sending love and best wishes and hugs
Beth, Beth, Beth. What a curve ball has been thrown. But there is some good news in the diagnosis - other than the need for surgery, it will be cured. You have a huge base of support here and rest assured we are all saying prayers for you and a speedy resolution. Stay positive. This too shall pass. Prayers and love, Saltmarsh
Just when you thought life was going well something else jumps out and bites you on the bottom, it's an uphill struggle. BUT! at least you had the presence of mind to get that occasional pain checked out and now it is being actioned....result. My ET was discovered after I asked my GP for a free health check (at 60 years old I had never had one). I am very glad I did, they found ET, no symptoms and I guess I would only have found out when I experienced a clot. So some would say unlucky but I feel lucky that for some reason I wanted that health check. I hope it all works out well for you.
sorry to hear you are having such a bad time and send you very best wishes from across the pond. Hope all goes well.
Beth, that really is a lot happening to you at the same time! I hope your surgery goes well and that you recover quickly. Godw bless you./
Thinking of you Beth, what a truly difficult time you are having. We are all here for you, our special MPN community is behind you and wishing you all the very best. You are stronger than you think. X
🙏❤️💪
every good wish and prayer coming your way Beth.
Praying for God’s peace and His healing hand upon you!🙏🏻🙏🏻
Prayers for the courage to keep fighting! 💖
Water thins the Blood, most importantly before sleep, NO HEART ATTACK.
you are in my prayers, have faith in God🙏🏻
Lord, I pray for You to be present with Beth in the midst of uncertainty. Lord, give Beth courage and strength when the burden of surgery feels overwhelming, and surround her with Your abundant love in her recovery and restoration. Lord, please hear our prayers.
will be in myprayers....🙏🙏🙏
Sending you my love and prayers and I hope that your tests are proof of the doctor's insight.... As you mention about looking back fondly, I do many times count my blessings with the MPN, thinking that although it is far from 'ideal', it has been a helpful nudge to working less and loving myself (and life) more.
Sending love and best wishes 💗
Hi Beth,
I'm sorry that this reply was so late in coming- I haven't been online much lately because we were caring for my M-I-L, who had a serious and protracted illness.
She's with the angels now as she passed at home in her sleep on 3/23/23. at the age of 87.
God be with you and yours, and you'll certainly be in our thoughts and prayers as well.
Remember to breathe - especially to take them in deeply and slowly, and then hold it in for a few seconds each time.
This triggers natural stress relieving neurotransmitters and calms the understandable, but unhelpful fight or flight stress hormones and improves your quality of life whatever outcome develops.
Best wishes and regards,
PA
