Sorry, but I Cannot Stay: Hi everyone I hate to... - MPN Voice

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Sorry, but I Cannot Stay

jillydabrat
jillydabrat

Hi everyone

I hate to write this post but for my own sanity I have made the decision to leave the site. I have made such good friends here who have shown me immeasurable support, Hunter in particular and Pam who has become a dear friend plus many others.

Those who know me know how I lost my mum to Covid in March of last year. Since then you will notice that I kind of dropped out of posting and answering posts. It's been a hard 10 months and I am far, far away from being 100% well in my mental health which is why I had to withdraw from all the Covid questions.

I pray that there are not many on the site who have lost a loved one through Covid because the pain of not being with your loved one at the end of their life clings to you every day. It is a pain I would not wish on my worst enemy.

Imagine how I felt today when I saw a post about the Covid vaccine where I saw quite a large number of people will be refusing the vaccine. When I saw this I knew I could no longer stay on site and read such posts.

I know everybody has freedom of choice but to those who will not have the vaccine, do you ever think about the choice of the NHS staff who are on their knees trying to keep people alive in the most horrendous of conditions. Do they not see or hear of nurses and doctors being found hiding in cupboards crying their eyes out because they cannot face seeing one more person die alone, or trying to control their emotions as they phone next of kin to tell them their loved ones are lost. These health workers are suffering PTSD from treating patients! When was that ever in the job description, but they carry on every day and I just don't know how. A doctor being interviewed on Sky News yesterday said what he is battling today is incomparable to any war zone he served in.

We have all been told repeatedly that the vaccine will not prevent you from carrying the virus. That once vaccinated you will still have to wear face masks and keep your distance for goodness knows how long but what it will do is help you should you contract Covid minimising the symptoms so that you do not have to be put on a precious ventilator or occupy an equally precious ICU bed.

Yesterday, the Government scientist on the Prime Ministers briefing said that of the over 5,000,000 people vaccinated in this country, not one of them had to be hospitalised with symptoms. That statement brought me hope until I read what I have today.

I cannot read anymore about members not doing everything in their power to get this vile virus under control. It just saddens me to much.

I wonder if those who are saying no to the vaccine are on drugs such as Hydroxycarbomide, a drug that affects your body far more than any vaccine would.

One member, who I shall not name on this post, has chosen to take vitamins to protect himself/herself from the virus. Good luck with that one. I am sure the Government would have been able to save billions on vaccines and thousands of lives could have been saved if there was one ounce of truth to this treatment.

Before I leave I just ask that each of you reach deep in side and show compassion to your fellow man and, more importantly, help the emergency service workers who, because of those who refuse to comply with Government regulations, and now who refuse to take a modified flu virus vaccine, will make this a world that nobody wants to live in, a world where thousands more loved ones are cruelly taken before their time. Anybody who has an ounce of compassion surely will think again when offered the vaccine. If you don't then I hope you ask for forgiveness from the doctors and nurses who put their lives on the line to treat you because you wouldn't take the lifeline that was offered to you.

I pray your God keeps you well and safe. Take care everyone.

Keep safe

Jill

83 Replies

Sorry to see you leave. Every thing you say is so true. Hope you will come back when the time is right for you.

Sorry you've decided to call it a day Jill but I can fully appreciate why having read your heartfelt reasons and plea. And I'm sorry you're suffering over the loss of your poor mum back in March. I can't and don't want to know what that is like. My 85 year old Dad is thankfully recovering from the virus otherwise I might of found out what torture you're enduring. I think some of our brave NHS folk no matter what their role in this wont be able to continue on and sadly some will have breakdowns or worse.

Good luck going forward and I hope you find some peace in your life maybe through your art.

Regards Chris

mhos61
mhos61 in reply to JediReject

So pleased to hear your Dad is recovering Chris. You must feel enormous relief. Xx

JediReject
JediReject in reply to mhos61

Yes its a minor miracle as when he gets a cold it oft goes on his chest , he started with cold like symptoms but thankfully the cough though a little troublesome didn't get a grip as it has with many of our elderly populous. My sister and bro in law are also recovering though my Bro in law is the worse and is struggling with exhaustion doing minor tasks or going up down stairs and is still coughing. He may need to see his GP.

Thanks for your concern x

It's rare that a post brings tears to my eyes. I cannot begin to know what you went through losing your Mum that way, unable to be with her at the end. Honestly, what you have said here is the most convincing argument I have yet read for people to accept the vaccine. I really hope that you reconsider your decision to leave - in these times we need honest and heartfelt voices like yours. If you do go, I wish you the very best in your health and your life, Jennie xxx

Don't go Jill, just take a break. It is understandable you are still grieving from your mums passing away especially from this scurge that is Covid. Sometimes their comes a time when we have to switch off completely, whether that be from constant bad news in the media or on social media platforms. As you quite rightly say you have got a lot of virtual friends on here and what people do regarding their personal choice is their perogative but don't take it to heart. Come back when you feel you have had proper time to grieve. In the meantime, consentrate on your own wellbeing. Sending hugs.Tina.xx🤗

Doggy1903
Doggy1903 in reply to Tico

What a kind response. Yes come back when you can. Some peace and quiet will be needed but this forum is very supportive and we will all be here for you in due course. Take great care.

What a well written and heartfelt post.

I can't imagine losing someone so close, i feel grateful my parents (and me) have had or are soon to have the vaccine.

I too have found reading the long thread difficult it worries me that someone could be influenced not to have the vaccine from reading it.

I hope you can take some time out and reconsider leaving, dont let one thread take something away from you. If you do leave I wish you all the best and hope you get your vaccine soon and can look forward to some normality whatever that might be, as the year goes on.

Best wishes

Paul.

Jilly, I absolutely agree that all this Covid 19 pandemic has everyone scared and disheartened . I cannot imagine how hurt you are , loosing a parent in normal times is bad enough. People must wake up and take the vaccine, ok maybe not for themselves but for the sake of humanity. Here in Guernsey we have up till now, lead a carefree life as our Medical system and government officials have set very strict regulations on what we MUST follow. The whole population of our Islanders conformed, hence our lifestyle freedom , somehow the whole world has ignored us and how successful we have been in the control of this disease the past year we have gone about our usual lives, if only the rest of the world had followed our lifestyle pattern it might have been so different for everyone.

We were all very happy ,UNTIL today. last night 4 people on the island have been confirmed with C19. at this moment the health officials lead by the angel that is Dr. Nicola Brink have no idea where this has come in from. Lockdown worked . Now because some idiot has bought it in to our island, we are all in complete lockdown again. At mid-day today she came onto the local radio station and repeated the rules.

Everyone is already adhering to rules of lockdown , social distancing, wearing of masks , sanitising and getting the vaccine's offered , my husband is due for his on Monday ( heart patient) and has been advised to go ahead and get it. I am PV so waiting on my appointment. We both are ready and willing , as I hope the rest on the nation is, Please, please take the offer and take the vaccine that will save your life. Don't be a jerk and put everyone's life at risk . My niece, a care worker just had hers in the UK , my sister has just had hers too, as for you dear Jilly , take a deep breath and look after yourself and I pray for a full recovery for your own personal health, God Bless. June.x

Aime
Aime in reply to bordeauxgirl

Oh no June, that is rotten. Someone must have taken it to the island. Take care xxAime 😻

Take care

So sorry to hear that Jill. Take time to grieve, you know we will be here if and when you decide to come back. I guess everyone has to make up their own mind about vaccines but I’ve got my sleeve rolled up ready when my time comes. Take care, kindest regards Aime xx😻

Here, here Jilly, you have said what most of us are feeling, I am so sorry to see you go from our Forum, you have given me so much hope with your faith after my young daughter at the age of 39 was diagnosed with a rare Cancer called Sarcoma even though you were going through so much in your own life.God bless you and keep you safe.

Jean x

mhos61
mhos61 in reply to Superwoman

Hi Jean, hope your daughter is making good progress. X

Jilly,

I can only echo other people's suggestions that you do not leave this forum.

I notice that the perpetrator of the appalling thread has gone 'hidden'. I'd suggest that this indicates the strength of feeling of a significant majority of us.

I avoided participation in the thread because I couldn't trust myself to be polite.

We need to fight disinformation rather than turn our backs on it. Take a back seat for a while by all means but don't cut the ties entirely - we'll get back to helping each other out with our MPNs rather than agonising over a once in a lifetime catastrophe sooner or later.

My very best wishes.

Andy

So very sorry to read your post, Jill and I fully understand your feelings and agree with all you say. I do hope you might one day come back onto this friendly Forum . There are so

Many of us who will miss you as you’ve helped us with your input in the past. I am so sorry you are still feeling so much grief for your Mum but really do understand and I know how awful it was for you last March. Please come back one day and just take time off for as long as you need. Love and Prayers, Fran xx🙏🙏

I am sorry that you are going through this. I don't understand how people can be so short sighted when it comes to the vaccine either. It is hard to avoid them where ever you go (at least in the US), but it is especially difficult to hear in a support group.

Best of luck to you and hoping the peace and healing will come to you in time.

I totally understand what you are saying Jill.

This site was a lifeline to me early in my diagnosis when I was given a booklet to read and told to come back in three months. I have made many virtual friends over the years who I e mail personally. But, I feel the site has, unfortunately, gone the way of other social media channels. I have decided to step back from posting and reading posts. I will still stay a member as I believe in MPN voice and the excellent information from Maz and the team and will still attend actual and virtual forums. I will still keep in contact with those virtual friends I have come to care for.

Take care Jill and lose yourself in your art.

Much love to you.

Judy

Tico
Tico in reply to piggie50

What a lovely reply Judy, said straight from the heart in these unfortunate times. I don't know about other social media channels as i've never had or wish to have a Facebook, Twitter or any other media outlet account. Hearing about them from my Daughter and a couple of friends is enough to put me off for life. Prehistoric I may be but an happier one for it! Tina.xx🤗 P.S. Have you heard anything off Mary lately Judy, I haven't seen her on here for a few days?

mhos61
mhos61 in reply to Tico

I is here Tina! 😘

Tico
Tico in reply to mhos61

🙂🙂🙂

You are quite correct in your assessment. Hopefully most people will choose to get vaccinated so we can develop the herd immunity that will be needed to contain this dreadful disease.

We will miss you on the forum, Hope to see you back someday my friend.

Jill - I felt like weeping at the rawness of your pain and your compelling and eloquent description of the battles fought on patients' behalf by NHS staff.

Your health is paramount, but consider returning in due course so that the cynical 'keyboard warriors' with anti vax propaganda don't win. Diana

Love to you . I echo all others and we are are always here , whenever ..... xx

Jill -- I understand and sympathize with how hard the loss of your mum continues to be for you, and taking care of yourself in the face of that has to be your first priority. I agree so strongly with everything you said and am deeply sorry that events have come to a point that means leaving the forum. I'm sad to see you go and hope, as so many have said, that you'll find this to be a place of comfort and friendship again some time in the future. Please take good care. I hope you are able to find solace in your art. Kim

Totally agree well said .

Hi my Lovely I’m crying reading this

I can only begin to imagine how your feeling

It’s a difficult time for you

let alone going over & over these posts

That are tearing you apart .x x

(A Pandemic & Loosing your Mum

Well if that’s not heading for disaster

I don’t know what is .

Time out sweetheart 💖

Always here for you

Love always Pam xxx

Jill,

I’m really sorry to see you leave, we’ll miss your valuable support. Take some time out, be kind to yourself, and hopefully we’ll see you back at some point in the future.

As for the ‘controversial thread’ unfortunately, some people adhere to a belief that is impossible to challenge, despite the scientific evidence presented. Likewise, they will reject anything that counters their argument. It’s a ‘mindset’ often fuelled by social media.

I was actually encouraged by the pro vaccine response in that thread.

All the best

Mary xx

Hi Jilly

Sorry to see you go. In the past you have sent me some messages that kept me going and I will miss you. I lost my auntie before Christmas to COVID - she died in hospital and I know that whilst we couldn’t be with her the nurses did a marvellous job. Roll on the vaccine - I’m fighting to get it! Take care and god bless. Jx

Totally hear you! I had same issue & sense of dismay when I replied to anti-Vaxer post couple of days ago. It’s mind boggling. You’d think fellow MPNers would get it & understand since we’re supposedly vulnerable, but clearly not. Think I may have to follow your lead & not read these posts anymore

I totally empathise with your thoughts and want to wish you good health for the future. I am Hydroxycarbamide and like you will take the vaccine as soon as offered. Good luck and health.

Hi Jilly, It saddened me to read you heart felt post, like yourself I’m struggling to read some posts within this group and on social media in general even the news somedays) it’s just too overwhelming. I work in the NhS and members of my team have been pulled from our day jobs (working with children in the community) onto covid wards to help, with no skills, the exhaustion of everything changing on a daily basis, raw heartfelt emotion burdening staff, patients and their families is all too much. In a years time we’re going to have an NHS that’s on its knees as a result. Most of us in this group have been told to shield and are doing so, protected from the chaos that’s out there, we’ve been asked to do one thing to give us a fighting chance, get the vaccine. Being frontline and CEV I got mine the first day they were available. We have to acknowledge that it hasn’t been “tested “ on our clinical group, but let’s face it if there was a drug that would iradicate our MPN’s then I’m sure we’d all be signing up for that clinical trial, this is the same in many ways.

There will always be those anti-Vaxer’s and extremists, but pleased be reassured that the silent ones who don’t post are likely to share your views. You need to look after yourself and do what’s right for you, but I sincerely hope you re join the group perhaps when this pandemic settles and your feeling stronger. Take care xxx

Jill, I’m so sorry that you feel compelled to leave the site because of a series of posts from (primarily) one individual who sought to undermine the integrity of this Forum.

Conspiracy theories and abuse towards other users and in particular the medical community, especially those MPN specialists on whom our future good health depends, have absolutely no place here.

Like others, I too hope that the thread is removed. It does not reflect the core values of this Forum - reliable and factually correct information, reasoned argument and compassion.

Look after yourself and please come back to us. Our strength is in contributors like you.

JediReject
JediReject in reply to Ebot

Yes well put I agree Ebot, , I abstained from that thread because I didn't feel the objective of it was appropriate and I fully expected it to be taken down as not in the true spirit of the Forum or being MPN related though I know we're all interested in how the vaccine will ultimately impact any of us given were all different. Fair enough in that context.

I guess as an Administrator one is between a rock and a hard place because you might be accused of silencing freedom of speech which sends out the wrong signal and might even strengthen their cause or case in some folks eyes.

Regards - Chris

Ebot
Ebot in reply to JediReject

Hi Chris

Just to clarify, I am NOT an administrator of this Forum! (I wasn’t sure whether that was what you were suggesting in your post :) ) That’s down to Maz, Prof Harrison and the team at MPN Voice. I agree though with your rationale.

I am however a long(ish) standing member of the Forum and value what it offers. I want to preserve its integrity as a safe space for people to ask questions and express their anxieties in the knowledge that they will receive reliable, up to date information and advice and benefit from a wealth of valuable experience.

That doesn’t mean that people have to agree with everyone’s else’s viewpoints or choice of action but there is a fine line to be trodden. The avalanche of posts by the original poster crossed that line - particularly when they challenged the comments made by the administrator (which I guess were written on the advice of the MPN team). What began as a ‘diplomatic’ thread (as someone put it early on in the posts) became a deeply troubling onslaught of misinformation.

Best regards.

JediReject
JediReject in reply to Ebot

Im sorry if I was unclear I know you're not an Admin (but im sure youd be a good one ) as I too have been a long standing member and like you want it to represent a safe haven without folk feeling influenced or intimidated in any way. Let's hope going forward that we continue to help one another and those newly diagnosed MPN.

Take care

Ebot
Ebot in reply to JediReject

👍🏻👍🏻

Dear Jill I was so sad to read your post. Well done for such a well written heartfelt plea on behalf of our wonderful NHS. Like so many others I can’t wait to get my vaccine. I am so sorry that your terrible grief for your lovely mum is overwhelming you and affecting your health so badly. You will be missed here but must do what is right for you. Look after yourself lovely lady and come back when you are feeling stronger. We are all here to offer support whenever you are ready. Much love to you, Karen xxx

I am so sorry you feel this way and please don’t leave! I saw the post too and I feel so upset and shocked and I honestly think it was someone with another agenda to stir things up! I told my husband I thought this was a safe space where we could talk about our MPNs but like every other stream of communication had been targeted and feel it is so dangerous! I am so sorry to hear about your mum and sending you lots of love! I am getting my vaccine on Friday and really do appreciate everything the nhs are doing for this country, I have a lot of friends who are key workers and hear what they are going through. Also from that post I saw a lot of people who will be having the vaccine! I really hope you come back to the group, take care x

Dear Jill,

Thank you for your brave words and for calling out the reason that the vaccine is SO vital for humanity. I feel deep sympathy for your loss and the additional distressed you have been cause by the insensitivity or lack of awareness of others.

I was really shocked and disheartened yesterday to read the dangerous and speculative views on vaccines & said to my husband that such posts undermine the reliability of the information sources on this forum - where so many of us have sought reliable information or advice about medical matters.

Were someone to express fear or uncertainty about the vaccines and ask what others felt, by way of seeking reassurance or clarification then that would seem more about seeking understanding and less about seeing to undermine. It deeply concerned me to see these posts in the same way that images of the NHS on its knees is heart-wrenchingly painful knowing parts of the community are not supporting the country's efforts to protect the NHS whilst they try to save us.

I completely understand your need to distance yourself from debates that highlight a lack of understanding of what you've been through & which add pain. You've bravely reminded that the forum should be free of hysteria and should be a place of calm, reasoned advice - like every newly diagnosed MPNers' anxious concerns are calmly & kindly met with directions to factual information & advice to consult with experts.

Reading above there are many here who value your presence & I too have really appreciated your kindness when I needed support. Do stay safe & I hope you find the peace you so need. Xx

Dear friends, I have woke up to the most beautiful messages of support which I have always received from my friends on here. You are all so special to me.

I am so happy that I posted my feelings as it opened a platform for people to say “I am not going to listen to this anti vaccine rubbish”. When I read the post that finally made me decide to leave I was upset that nobody seemed to challenge the post but, then again, you can’t argue with STUPID.

I will return in the future, how could I not after reading all of your beautiful posts but for now I need to step away for my own mental peace. This doesn’t mean I won’t be thinking of you all and I pray that you all keep on fighting, keep on supporting each other like you have always done and most of all KEEP SAFE. See you all again, hopefully soon, love you all, Jill xxx

mhos61
mhos61 in reply to jillydabrat

❤️👏xx

You know what's best for you and I look forward to seeing you back with us when you feel able. Xxx❤

azaelea
azaelea in reply to jillydabrat

Look forward to seeing you back when you feel able. We’re all here for you. Keep safe. Love Fran xx💕🙏

Please just take a step back for a short while. I read that post and decided I needed to reply to it to say my husband can't wait for his vaccination. His consultant told him too have it, he also wrote to our GP to remind the surgery that my husband is clinically vulnerable. I don't reply to post much, only when I feel I need to, I have posted on here when husband was poorly in hospital and the support was outstanding. What ever forum's or pages we read there are alway someone willing to upset people, we all have our thoughts on things and are willing to listen to others on what they believe. Unfortunately that post just went a little bit too far. So like I said step back and take time out, then come back without people like you on here, the non believer will have won. I will say that I found this forum with the help from my husband consultant. So without people like you I would be lost. X

Hydrox
Hydrox in reply to Jean24

Don't let the anti vaxers influence you, that is their aim. By leaving they have won. Stay and give your opinion to help the people who are unsure, otherwise they will not have the vaccine by listening to the anti remainers. I saw the post and it made me more determined to shield more and have the vaccine as soon as possible. Please stay.

jillydabrat
jillydabrat in reply to Hydrox

Thank you for your lovely words. There are a lot of strong people here who will take those who are unsure under their wings. If they have any doubt about anything then I know Hunter will find out all he can to help. I will be back later in the year, I promise. I haven’t got it in me mentally to be much help to anybody right now. I am in quite a dark place so I need to step back, just for a while. I cannot believe all the lovely messages I have received. I hope others will find the strength to stand up against these Covid stirrers and stand up for our health workers xx

Hi Jill sorry to hear you are very much still grieving. I suppose like you said its a personal choice and everyone has their own reasons for getting the vaccine or not but I can understand why you are angry x

I have a friend who is a florist who dropped off some flowers for me on Tuesday. She said the bodies are stacking up at the funeral homes. Maybe these people need to see what their choices can mean. I keep in touch with the chaplain who was with mum the night before she passed. She is a broken woman but goes back day after day, night after night to be there when people pass on their own but she has to choose who to be with as there are so many. Surely to God they don’t want this for themselves or any of their loved ones. This community is here to help everyone with any questions on how to deal with their MPN symptoms not as a platform for Anti Vac or Anti Covid warriors. There surely is a community who would welcome them in their ideas but, as you can read above, this community is not one of them. I do appreciate you replying to my post. As I have stated earlier I am going to have a break and deal with my grief and my anger before I come back as I am no good to anybody the way I am now xx

I understand am sure people do realise I personally just think people have to make the right choice for them and you don't know what reasons that may be for. Am certainly not anti vaccine but I do feel people have a choice. Take some time to concentrate on you dont think about anyone else x

Dear Jill,I'm so sorry for the loss of your Mum Jill.

I totally agree with you about the number of people out there not wanting the vaccination.....what can one say except grow up and look at all the facts.

If any of them catch the virus and have refused the vaccine,they will be,no doubt,be there wanting NHS treatment to stay alive if needs be.

Please don't let this minority push you out of this site....we need each other at the moment.

Kind regards Lyn.

God Bless you Jill and keep you safe. Love from Elsie xx

Please stay after reading your post we need people to speak sense. If this reply doesn’t change your mind then lots of hugs xxx

This is such heart felt words and hope in time you feel peace of mind. It's is a crazy time that most of us do not comprehend but hopefully with the vaccines and the NHS and all the sensible people out there, things will eventually improve. Wishing you all the very best in times to come.

Rose x

As you can see you have massive support on this forum. Nobody could fail to be moved by your last impassioned post. The vaccine question might be difficult for some but reading most posts here we are in support of it. It is terribly sad to think you are leaving this site but I can completely understand why you feel that way. Hopefully you will come back at some future date so we can once again show you the love and support that we mostly all show each other on this the best of forums. We will miss you in the meantime however so please stay well with your MPN and stay safe from this horrendous virus. Take care and we will welcome you back if ever you feel you need us again xxxx

Hey Jill, firstly I’m so sorry that you have lost you mum, totally tragic and heartbreaking times for you. I’m sorry that in order to protect your own mental health you need to step back from being a member of the forum for now, which is why your post is incredibly brave and echos my feelings completely. Regarding the vaccine thread...... my blood was boiling reading the posts, it has no place on this forum. Which was why I did comment in the end, at best it was factually misguided at worst was a blatant attempt to coerce vulnerable people.

Having worked in the nhs for many years and quite recently in the vaccination service I have come to realise the minds of the anti vaccine brigade will not be changed, however it is the vaccine hesitant that this type of ‘information’ is so incredibly dangerous for.

Personally Working for the NHS currently is incredibly challenging. More so than ever.

COVID is a worldwide health and economic emergency. Funding for these trials has been provided, Scientists all over the world have put all their efforts into developing these vaccines. Stages 1,2&3 of the trials have been run in conjunction. They have been tested and their efficacy has been interpreted. Stage 3 of the trials have in fact included 40,000 participants from multi country locations, which is far more than the majority of most stage 3 vaccine trials that may only include 1000 participants.

I have had my vaccine, I have had all vaccines I’ve ever been lucky enough to be offered. I remain positive that I have done the right thing not only for myself but also the wider community.

Sending you lots of positive wishes, take care

Nicky x

When I saw your post saying you would leave shocked me.... I thought why sharing this. But when reading your post I could better understand. I also get Mad, stressed out when I hear the excuses of People for not wanting thé vaccin.

And infecting others not to want thé vaccin...

I really understand you.

You lost your mum 10 months ago. This is not so long....you will need time to recover ... Take your time. I lost my mum due to a medical failure 6 years ago. Thé doctor sent my mother home.with saturation of 74. She died that night alone at.home in her chair.

After five years I could think of her with gratitude and less sorrow.....

Take your time .....hugh .from Belgium

Hi, Jill. As you can see, there are so many people here who will miss you, if you leave this site. You have always been so supportive and and a beacon of light to so many, I completely understand your reasons and cannot imagine what you are going through after losing your mom and not being able to be with her. Even this post shows how much you care. Just know that your mom will always be with you in your heart and if you ever decide to join us again, you will be welcomed with open (though virtual) arms. Take care of yourself.

Cindy

Dear JillI think that one of the hardest things in life is for a daughter to lose her mother. I cried for a year, after mine died. It takes time to heal. You will always miss her and wish that you could talk to her. I am holding a place in my heart for you and send you love and healing energy.

Don’t leave us, Jill. Not for good! Take a break for as long as you need and know that we are here for you. From one motherless daughter to another,

Kim

Hi Jill, sorry to hear that you will be leaving this forum for a while and find yourself in a dark place. If that place gets too dark then please look for help. We are all sorry for the loss of your mom and you know that everyone on this forum grieves with you. People who don't want to get the vaccine should know that the death rate for blood cancer patients who get covid has been reported to be as high as 28% while for the general population it may be in the 2% range depending on your country. Scientists say that the death rate for people who have been fully vaccinated and still contract the virus is near zero. Please do what you need to do and then come back, you have much to offer to those on this platform.

Dear Jill

So sorry to hear about your mum. Total agree with everything you have said and hopefully with time you can come back to the forum which is usually fabulous for all things MPN.

As an NHS GP and a member of a physician mum's UK Facebook group with over 20000 NHS members am hearing so many horrendous stories of what are amazing staff our having to deal with in hospitals and across the NHS. The sheer extent of the excess potentially avoidable loss of lives is so hard to take especially when the offer of vaccines is refused and lock down rules are ignored. If we all play our part the sooner the NHS has chance to recover and care for everything else non-covid related.

If you do want a balanced update of all things covid highly recommend MD in private eye who is a practising NHS Dr and gives a sensible overview of what is going on every 2 weeks across the globe. Also please trust in Prof Whitty- he is a frontline NHS Dr and colleagues who have worked for him can't rate him enough as a consultant and general decent human being. Sadly the politicians may not act on his advice but if you watch the COVID briefings he tries to answer the questions with honesty and integrity which sadly doesn't always happen with people stood next to him at the podium.

Anyway take care everyone especially you Jill- you are a very valued member of this group.

I will definitely take the vaccine when offered. I wish all the best with your health. It is so hard to lose a much loved mum, you don't get over it but you learn to live with it, eventually. I hope you can think of her witha smile in your heart XX

Hi Jilly, sad to see that you are leaving, but it’s your choice. I’m Jak2+, have PV and enlarged spleen, having had a confirmation of diagnosis 2 1/2 yrs ago via a bone marrow biopsy. I use the site mainly for information from real people who have the same symptoms as me. I also use it for mental support as well, knowing there are people out there just like me, ( and worse) who just get on with it!

I had my vaccine a week ago, other than a tender arm overnight, I’ve not had any problems to date and have every intention of having the second dose as soon as I’m called.

I figure that with all the deaths and full hospital wards both locally and around the world due to Covid, I would take any opportunity to not become one of those statistics.

I wish you and everyone here good health.

Stay safe

Andy

I am so sorry to hear what you have been going through Jill, I have close friends and colleagues battling Covid at the moment and it is a scary time. I hope you don’t leave the forum because of these comments as the majority, me included, want a vaccine and are following the rules in order to help the NHS and save lives.

Just take a break - remember TB ?-on no you are all too young !! I had a cousin who got a job in Switzerland way back -and his family had such a life explaining he DID not have TB and they were not going to infect all !

Most -nearly ALL of us- are sensible and so we will get through this virus .

Hi Jill, I'm so sorry to hear your news and how upsetting the vaccine posts have been for you. I'm really sorry if my sharing of the academic trialled reviews has added to your upset, I merely wanted people to see some facts rather than opinion. Personally, I have lost one person to this dreadful virus, the devastation to their family is impossible to put into words. I have been providing volunteer psychological support to frontline NHS since April, I find every conversation devastating and painful. My discomfort is temporary, they have to go back to their realty, which is pure hell. like you, I can not and will not ignore the level and depth of trauma this pandemic is causing in so many of our NHS and key worker communities. Simple as that. Take much care Jill, I wish you well xx

I am hoping to get the vaccine this week.....fingers crossed. Hard to read those who don't follow the science.....even my own son and his wife oppose us getting the vaccine....you keep safe and stay well.........and say a prayer for all of us

Mpncoda
Mpncoda in reply to kathymac52

Many have died CK Norway and Germany and ... 99.6 survival rate does not qualify an experimental rushed vac for me personally. Each person is entitled to accept it or reject it. All the best.

jillydabrat
jillydabrat in reply to Mpncoda

Please don’t spout your figures at me. Watch your mother choking her last breath and then tell me about survival rates.

Otterfield
Otterfield in reply to Mpncoda

Mpncoda please! This thread is a about Jill and we should all be supporting her at this time, not resurrecting yesterday's thread, which is what hurt her so much in the first place.

katiewalsh
katiewalsh in reply to Mpncoda

I don’t know how you can be so heartless. After reading Jill’s post you should be ashamed at making those comments. As Otterfield said it so well. Please don’t post that on this link. Katie

Sorry to read this (and I am in complete agreement with you re. covid-19 vaccines), but you are wise to do what you need to do for your own well being.

Hopefully you will return in the future.

Take care. x

Welcome to AI and I’m sorry for your loss.

I was so sad to read your post. Totally understand your need for time to grieve. I agreed with everything you said and have had my vaccine. I lost my aunt to covid just after Christmas. Will be thinking of you and look forward to you coming back when you are ready. Xx

Hi. It is rather a case for study why in "supposed" civilised countries, Britain, Germany and many many other, people refuse to accept and comply to rules and measures taken for their own safety! Don't they see what is happening in hospitals, the number of deaths all over the world and the dramatic change in our way of life???I can excuse illiterate and unprivileged people for lack of knowledge, education and critical mind. But it seems that they are the majority!!!! It is a lost cause to try and persuade them so if i were the prime minister i would demand a statement from all of them that they DONOT wish to be treated if sick, to rid the hospitals and medical staff of the burden of their miserable presence, and let them be in their own fate!! What's more stay where you are in your countries , don't you dare travel abroad and spread your infection to other countries which have kept the virus low by abiding to measures and by paying a high price one year now, in their liberty and financial state!!!!

Thinking of you. Stay safe and well. Will miss you 😢 xx

Mazcd
MazcdAdministrator

We are very sorry that the post from Surreygirl74/Hidden and some of the replies from other people have caused distress and upset to many of you. We hoped that the replies I posted, which came from the medical team, would counter the information but it seems that the post became very confrontational.

We have to allow people using this forum to have an opinion and realize that not everyone will agree, and in those circumstances we have to strike the balance of being fair and giving everyone the chance to express their views/opinions freely and leaving some posts/replies to stay on the forum and ask people to accept that we can’t all agree all the time. We have deleted posts/replies in the past that have caused people to be upset and make complaints to us, and we shall be doing the same with the post from Surreygirl74.

Once again, myself and the MPN Voice team would like to apologize to you all for any distress caused by the post.

JediReject
JediReject in reply to Mazcd

Thanks for letting us know your and your teams reasoning Maz , im sure everyone appreciates you got a tough job for the reasons you've outlined and do your utmost to be even handed. Thank You - Chris

Otterfield
Otterfield in reply to Mazcd

Thank you Maz. It was frustrating and alarming to read that people had been taken in by the pseudoscience which is so prevalent. You do a difficult job really well! X

Hi Maz, I have just read your private message and then your reply to my post. Thank you for both, they are very much appreciated. I have been overwhelmed with all the lovely posts from everyone. I had to laugh when I read my horoscope in the "What's on TV Magazine" today. It read "Friends and family rely on your advice and assistance. You're always quick to respond in times of a crisis or an emergency". Reading that blew my mind, not that I put much regard to horoscopes but with what has happened over the last few days it seemed very appropriate.

I hope everyone here knows that I will help anybody whenever I can but I won't stay silent when someone deliberately comes onto the site with the intention of disrupting the peace and well-being of the members. I am relieved that you deleted some of Surrygirl/Hidden's post. I am sorry that she thought that she could pull the wool over members eyes and angry that she had the audacity to challenge the EXPERTS regarding the safety and efficiency of the vaccines.

I have been struggling after losing mum in such horrific circumstances and I would be devastated should anybody else lose a loved one to Covid, though I read a post today where a member's daughter lost her boyfriend. I am so sorry that this has happened and my thoughts are with them.

I hope, given the circumstances of all the upset caused by this member, who originally supplied some very informative links but who then became confrontational when questioned to the point of bullying, that a close eye will be kept on the Forum.

I love this place and everyone I had the pleasure of meeting on here so if they don't mind I will sit in the background for a little while but if I see a post where I can help a member in any way then I will knock on the door and come in.

I cannot thank everybody enough for their support. Hugs (virtual) to everyone of my friends. Keep safe, love Jill xx

Please don't let what other people say you have the right to choose what is best for you there are no rights or wrong choices but you have to decide what is best for you but leaving healthunlocked is not a good idea we are all here to support each otherStay safe

Scottish terrier

My message to you jillydabratwas one sent to me Scottish terrier i

Hey Jilly... :-)

Really so very sorry to learn of the passing of your mum. That is very sad indeed, and I really do feel for you...

Over the past two (2) months, I have had to hospitalise my 85 yo mum three (3) times, and it really wasn't much fun at all... But thankfully, she is a stubborn old soul and not ready to leave just yet...

Jilly, there are some here who do have real apprehensions about vaccines that are untested, (for compromised & suppressed immune systems which can include the aged too), and especially so when there are many reports coming out of how in some cases being vaccinated might have tipped some of our aged loved ones over the edge...

Much of this is a learning curve for all of us here...

There is no denying the bravery of our medical & emergency workers, and all of them should be highly commended & be well-paid for their efforts of courage under fire, in my view...

Jilly very best wishes to you & your family...

Steve

ox

Dear Jill. I’m am so terribly sorry for your loss and continued anguish. Good for you to remove yourself from this forum for as long as you need to. That’s such a wise act & we should all be as compassionate toward ourselves as we are to others. Your words in your original post here are profoundly moving. If you ever feel strong enough please consider sending a letter to be published in your local newspaper. I think your powerful words can change minds. I’m very unwilling to accept anti-maskers & anti-vaccines people as their selfishness is so harmful to everyone in society but especially the healthcare workers. I think they should have a scarlet mark on their foreheads & if they catch Covid let healthcare workers refuse to treat them if they’re already exhausted, depressed, have more deserving patients. If we in society want the privilege of getting medical care we should be required to be responsible. I’m sending you a huge hug & lots of love. Katie

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