I'm sorry, this isn't going to be a very upbeat post, so if you're having a bad day, please move on!
I have MF, diagnosed earlier this year and at my most recent blood test things had gone wrong (platelets dropped, now got anaemia) and they got me back in for an emergency bone marrow biopsy. I'm now waiting for a treatment plan, once they've all got together to agree on treatment.
My main problem is that I can't stop crying. I make up stories to excuse it in front of the kids, and it's so difficult. I feel so incredibly sad.
I also feel hopeless, and keep looking up prognoses on the internet to find some hope, but not finding any.
It's so hard because it's so unpredictable - I suppose they could ring me with a prognosis of 18 months or a 'don't know' or I could go on for 20 years. I don't know if I'll get to meet my grandchildren, or if I should be preparing to go next year. I just don't know how to handle the uncertainty and the sadness, which is getting in the way of trying to make the most of every day.
I don't know if anyone has anything to say to this. I suppose it's just very lonely, being in this situation.
What's really terrible is that I had really bad depression for a long time of my life which all came down to hormones, and I'd finally got it all sorted with the help of a wonderful doctor. I had a couple of months of feeling wonderful and free, and then lockdown hit, and then I got this diagnosis. I feel so terribly unlucky and overwhelmingly sad.
Thank you for listening.
x
Written by
LuluCosson
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You don't have to be upbeat in this group. We all have terrified and tearful times.I also have Myelofibrosis, with low platelets (27 at my last blood test) and anaemia. I have very low days and have found that it's really best not to Google.
Is a stem cell transplant an option for you? I am in the early stages of being considered for it. It's a huge commitment and is risky but it offers hope.
Uncertainty is a dreadful thing and I and others are right with you on this.
I need to stay off google! I haven't spoken to them about a transplant yet- i don't really understand if they want to manage symptoms with drugs, or get in early with a transplant while I'm still relatively young (49). I suppose they need to watch me for a bit to see what's going on. But yes, uncertainty is the worst. I just don't know what I'm dealing with and it's a psychological game isn't it.
I’m very sorry to hear your in so much distressI can’t offer any advice as such , I can only offer my support .
Depression is awful and the uncertainty of things makes it worse .
I made the mistake of looking on dr google and then realised after some kind advice that it’s not always wise to do so as things have changed so much with all the research going on
I’m sure you will get lots of support here . I too feel very lonely at times and I empathise with you .
Let’s hope the new treatment plan will make you feel better , I wish I could help you feel better . Take care
Hi Lulu, I am so sorry that you are feeling like this, and as Jennie says, you don't have to be upbeat with us, we understand how you are feeling. I note from your previous post that you are under the team at Guy's, I would definitely speak with the team, particularly the specialist nurses, about how you are feeling, they will be able to help you and suggest ways to deal with these feelings, so do get in touch with them and ask for help. Kind regards, Maz
Hi, Lulu, I agree with the others. This forum is not only for knowledge, but its a support system for all of us. I have post ET MF, and when I first found out, I was on an emotional roller coaster for months. This is a wonderful place to vent and I hope you can find some one to talk to about what you are feeling. I know its tempting but try not to find information on the internet. Everyone is different and treatment plans vary from one person to the next. It sounds like you are getting excellent care and there is ongoing research with new treatments on the horizon. Let us know what the doctors say.
I am glad that you shared where you are at, though sorry to hear it is at such a low point. Please know that one of the most important things about this forum is to always know that you are not alone. There are plenty of people here who understand what you are going through. We have all hit low points in dealing with MPNs, particularly when we see progression. Know that we will all be here whenever you need to reach out and share how you are feeling.
Do know that there are still treatment options for the MF. Your care team at Guys can certainly help you review all of your options. I have a colleague who chose a SCT several years ago. He is doing well and is out biking many miles nearly every day. SCT is only one of your options. There are more.
Please stay in touch and let us know how you are doing.
Hi Lulu I can’t had much to what as already been said but we are all here to listen to you can you call the hospital tomorrow and chat to someone there are many treatments now and hopefully all that can be explained to you sending a big hug Poppy x
Hi Lulu, just wanted to echo what others have said here - this is a place for being open and honest with how you're feeling, good or bad, with a group of people who understand from personal experience what you're going through. Sending hugs x
I can’t add to the excellent remarks others have made but I can send you an enormous virtual hug! There is light at the end of the tunnel. It’s easy to fall back into depression when you’ve suffered from it before. Please talk to your health care givers I am sure they will be able to reassure you. Sending you best wishes for the future. X
Hello Lulu, I am sorry that you are having such a bad time. I think it is important that you not only share your feelings but talk to people who can help. Maz' suggestion that you contact the nurse at the haemo department is certainly the course of action I would take . I find the nurses are approachable,kind, and helpful. Your mental state needs to be taken into consideration as well as a treatment plan for ongoing treatment.Please stay in touch with us.
Hi LuluSo sorry you are having to put up with this latest journey through MPNs. You are right to bring this to the forum. We’re all here for the ups and downs. It’s a very supportive group as I found out of few weeks ago.
Hello Lulu I'm sorry you're having such a bad time. I think the advice you've had from others to contact the specialist nurses at Guy's is really the best thing. You aren't alone in this. You have one of the best medical teams in the country looking after you so try not to despair. Best wishes to you.
Hi Lulu. Sending lots of love and hugs. As others have said this is a group to support each other wherever we are and however we are feeling. And again, as others have said, reach out to your care team at Guys. Xx
Bless you I have mf to I was 24 when I was diagnosed just given birth to my youngest and I was a lot like you I read the doom and gloom on the internet I can tell you I have had mf for 12 years the symtoms your describing are common low platelets and anemia I take rux twice a day amd it did work for me well for some time none of us really know the future but I understand your fears I worry to we all do but in time you will find a way to somewhat accept it talking helps and having support is important your feelings are valid and it’s ok to feel sad there is always hope if you ever want a chat message me anytime your not alone xx
Yes, I'm staying away from the internet from now on! Seems to be really different info to on this site. Gosh, you poor thing being diagnosed with a new baby. Must have been intense x
Lulu, you've done the right thing. And believe it or not, reading all the responses has made me cheer up a little too! We've got everything stacked against us, and of course it can get dark and ominous. I'm bouncing around with lower platelets than you - generally below 20. But it means a lot to be able to share other people's experiences. We are not alone. And I firmly believe there is always something good to work towards. Smile and please feel loved.
Hi Lulu, Times like you’re experiencing are so awful. It’s hard not to feel hopeless periodically. But since you’ve had depression before your chances of having it again may be higher. A great many of us MPN patients have found that anti-depressants were both crucial & extremely helpful. I’m on them right now. It’s a large percentage of us on them. I encourage you to consider talking to a professional about this. You have what’s known in the US as “situational” depression because it’s caused by the situation you’re in. A short course of anti-depressants might really help you. As could regular meetings in person or by zoom with a therapist. Frankly, it would be surprising if you weren’t depressed. But the good thing is with help you can improve. Last, there are many many new medications to treat MF successfully for a long time and new treatments are being discovered all the time. So it’s too soon to despair that you won’t be ok. The uncertainty is unnerving & extremely difficult but with talk therapy & perhaps medication you should regain your equilibrium. And whenever you need a boost or affirmation, let us know. I will hold you close to my heart & think positive thoughts. Btw, if you’re at Guys you’re at the best place of all!! . Big e-hugs from me. Katie
Hi Lulu, sending love and hugs and echoing what all the others have said. We are all here for you and being able to put your feelings into words hopefully will help. Like others, I feel sure if you can phone one of the team at Guys and discuss your feelings they will be of great help. Please know we all empathise with you. Love Fran xx
Lulu - not a lot to add to the wonderful statements already made, but just to repeat that you have nothing to apologize for! One of the great things about this forum is that we are a group of people who "get it" and are here to listen as well as give and take advice! You are in great hands at Guys!!
Sorry that you are feeling so down. The team at Guy's are excellent and as others have suggested you should reach out and tell them how you are feeling. There should be options for providing support for you. And feel free to post here of course. Sending best wishes.
Anything like this can be depressing and terrifying at the same time and I have ( as. I am sure most people have on this site) gone through moments like you are experiencing. Mediations are one of the good things about Utube and some of the lessons and mediations have helped me get though these days. I have tired to learn how to really enjoy moments when I am feeling good and take n as much as I can during those times even if it’s just watching trees sway in the breeze. I do have a friend that specializes in late case cancer treatments who has told me she can see who is going to make it through treatments by their mindset coming in.
So glad you posted, this is why I love health unlocked. People in your situation need to be able to unload. Your head is a shed I’ve only got ET -calr. I hope people on this site with MF can give you lots of support and advice.So I’m sending you shed loads of hugs.
Just read from Maz’s reply you are under Guy’s that should give you a huge boost of hope. If they offer you counselling take it. Sending you even more hugs and kisses xxxx
Hi Lulu - I have only just seen your post and all the wonderful support you are getting. I too have MF diagnosed at the beginning of the pandemic. Ruxilinulib was prescribed, and it was like a miracle over night. I began to feel so much better. So, after a year the dark days are still there, worrying more about my family than myself, and praying their will be a cure for us all one day.
Never give up hope, the forum is the best place to get advice and a boost -
Being overwhelmed and scared is all appropriate. So glad you reached out as what you are feeling is a reflection of what we all feel. So, it is a gift you've given us in speaking freely to us. Holding on as you're going through diagnosis and treatment considerations is tough. For me it has worked to think only of the hour before me, to "chunk' my day hour by hour. you only have to get through this hour. Slow deep breathing each hour will give you a few moments of respite. We're all pulling for you, you'll get through this and however you do will be ok.
Hi Lulu Am very sad and sorry to read you are really distressed and can fully understand where you are coming from. I sadly cannot add anything to everything all the others have posted and think it is amazing there is such wonderful support out there from this group to help you, advise you, cheer you and support you. You have been given great advice here and am sure you will now feel hopeful that you can make the next step forward by taking up their suggestions to try and help ease your mind and anxiety. It is never a bad thing to share all the downs as well as the ups and hopefully it helps to be able to at least ease the burden. The biggest hug . Evie .
So sorry to hear this I can totally understand how you are feeling.You have come to the right place for support.
My husband was diagnosed with post PV MF three years ago we were absolutely distraught I couldn't function I was like you googling looking for answers.
Anyhow my husband went on to ruxolitanib it's changed his life he's loads better bloods are all in normal range now.
He's been to see the stem cell transplant team they said he's nowhere near needing a transplant and may never need one if medication can control his MF.
He's got 9 unrelated donors on the register which we were so taken back by this as sometimes they struggle to find 1 match.
My husband has been on ruxolitanib two years gone February it's really change his life the fatigue and exhaustion at time was terrible now he's got no exhaustion .
He does suffer low moods and anxiety but I think it's more work related than his diagnosis.
I hope you can be sorted with medication which will help your MF .
Please don't Google things try to be positive I know it's easier said than done.
We've stopped worrying about transplants now as my husband is doing really well he's working full time . He's 49 next week he started off with PV when he was 41.
In all he's been ok apart from two years before he went on the ruxolitanib.
I hope you are getting some comfort from all the people in this group . It's a great place to come to for support
Hi Lulu, I am so sorry to hear of your situation. I can not imagine how frustrated you are feeling.
One of the things that made me happiest about this site was that it was a place that I could go to when I wanted to vent and feel miserable without putting too much of a burden on friends and family who, though sympathetic, just may not want to hear it all again.
Here you have many shoulders to cry on and though we may not have answers at least we have a glimmer of how you are feeling.
Your story reminded me of a friend who was going through a rough patch. Normally she was pretty upbeat but life was just handing her garbage and every time she started to break free something else landed on her. So she went to a therapist and after telling the therapist about everything the therapist's response was something along the lines of 'Depression is a perfectly normal response to the situation'.
With all that you've had to deal with and the uncertainty of the future, you have every reason to cry.
I have never had depression due to chemical imbalances and I am very happy to hear that prior to this diagnosis your depression was successfully treated. That at least hasn't changed.
When I was younger and couldn't get my mind out of a bad patch I would go to nature, as much as I could find anyway and just sit and watch the insects and the fish and the birds go about their business and I would realize that as part of a greater whole, I was rather small and my concerns, though important to me were also small. And for some reason that made me feel vastly better, though one might wonder about my sense of self worth.
🙂
But regardless of my sense of self worth, my worries would abate and being slightly detached from them I found I was better able to deal with them. I can't get to those ponds and forested places as easily now, but I carry them with me in my heart and when things start to go bad I find a quiet place and visit them in my mind. Sometimes I have to make that quiet place only withing the confines of my mind as I sit in a doctor's offices, or stand in the grocery store line, or sitting in a car waiting for someone to show up.
Perhaps there is a similar place or thought pattern that you can go to when things start piling up too much.
Dear Lulu, please don't think this is flippant, a therapist once told me when you can't stop crying to drink 2 pints of water straight off, it helps! Best wishes Jo
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I was diagnosed with PV in 2016 and live in North Yorkshire
just been diagnosed E>T
Now something else to contend with 🤪
Suggestions to help manage fatigue
