Very sad: Evening All, I have had very sad news... - MPN Voice

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Very sad

Superwoman
Superwoman

Evening All, I have had very sad news today. My daughter of 39 has been diagnosed with Sarcoma, a rare form of bone cancer, it’s in her thigh.

I keep on thinking could it be my fault due to me having ET, just keep on blaming myself, so very sad for her, as she has a young family, all we can do is try and be positive for her, she has been there for me through my years living with ET along with my hubby, but this has truly devastated me.

Sorry just had to share .

Keep safe

Jean x

75 Replies
oldestnewest

Jean, I’m so sorry to hear your news. I know I can’t do much but I’m thinking about you and your family and send huge E hugs to you all.

What kind of treatment can she get? Perhaps, although extremely worrying, maybe her cancer won’t be as bad as you fear. Your world and hers has coming crashing down but maybe as the days go on, she will find out all the possibilities of treatment.

To be honest, I would feel guilty too, that’s why we are mums! But even if it was an identical illness, there is no way you could be responsible for it. Keep posting, I’m thinking about you and your family and I know others will reply to you shortly because we are all here for one another.

Lots of E hugs Aime xx

I am so sorry to hear this, it must be so difficult and frightening for you and all your family. Please don't feel any guilt though. I doubt whether there would be any connection and even if there was, your ET is not your fault.

Do keep in touch - we are all here to support you x

Hello Jean,

So sorry to hear your news, which must have been devastating for both you and your daughter. I hope they have caught it early enough to achieve a good outcome. I'm sure the thoughts of all of us will be with you both.

God bless

John

Hi I am sorry to hear about your daughter it’s the worst news parents could get thinking of you

Poppy x

Superwoman sorry to hear about your daughter but please do not blame yourself as it is not your fault you are not to blame why not have a word with your consultant and ask him if it is connected to you having ET it may well not be connected and if not you can be there for your daughter and you can be the the greatest mum by supporting her and will be a great weight of your mind knowing it was not you

that passed on to her stay strong stay safe

Scottish terrierxxx

Thank you my friends, just needed to share with someone in these strange times. X

alibick
alibick
in reply to Superwoman

Please be kind to yourself. As a mum I understand your mum guilt, though not in any way to the degree you're feeling now. I'm constantly guilty that my children can't get out of the house because of my condition. But our conditions are not our fault and your daughter s diagnosis is not your fault. ❤️You're an amazing mum, I can tell. Just you being there for your big girl will give her so much. Love to you all at this difficult time. Xxx🌈

Dear Jean and family

You have my heart and tears and sadly my understanding. We as mums would do anything to take pain and any difficulties away from our children. My advice is - one thing at a time. Confirm the stage of her condition and ask the oncologist questions, lots of questions. Then learn, learn, learn all you can about sarcoma, and hug your daughter and your grandchildren and ADVOCATE for your daughter. When my daughter got a chronic illness I found medical books and books for patients so useful. I purchased them from the Mayo Centre. It helped me all those years ago when I needed that understanding. Keep the faith, care for yourself and give yourself permission to grieve. Anna X

Hi Anna,

In a way my daughter is quite lucky being as she is a medical secretary for three top spinal consultants one who has an involvement at the Sarcoma clinic at the Stanmore hospital, where she will have to go, quite a journey from way down in Kent, but he has said that she will have the best team available team behind her which is encouraging.

Thank you for your kind wishes

Jean x

Jean

I call those things you described concerning your daughters place of employment as fortuitous and 'a hand from God'. It does matter where we are treated and by whom and it sounds like your daughter and your family are in good hands.

Some time today when you are a little at peace I'd like you to pour two cups of tea, I only have a little milk in mine. Then think of this lady from Australia who has you in her heart. Try and get as much help as you can, carers are so often overlooked. I think you broke a record with regards to the number of replies you received. May these messages keep you energised and never leave you in doubt that there are many strangers from all over the world who care and send their love.

Anna X

Hey Jean...

I am sorry to learn of the news of your daughter... That is a tough break to learn to have to come to terms w/ I am sure...

However, even if it is somehow related genetically, (which the jury is still out on), it would still not be your fault in any way, shape or size of excuse that you might try to claim... It's simply a natural response when we want to help those we love and care for, and there seems little we can do... especially as parents etc...

It is not as if you somehow ever possessed any control or power over your having an MPN... None of us can, in my view... It is so random, just as nature is itself...

Just love and reciprocate as best you can Jean... We are all here for each other...

And you do not need to apologise any in way at all...

I hope that her treatments all go really well for her...

Stay positive & focused Jean... :-)

Best wishes

Steve

Thank you Steve

Greetings from Fleetwood England.

You are not alone in this particular journey. When you dealt with your ET, remember what skills you developed over the years.

Hang in there.

It is the most natural response to feel the way you do now. So take heart dear one because of you she will take her strength and resilience from you.

Take care e highs from me.

Superwoman
Superwoman
in reply to wotan10

That’s what I like to think, I don’t get called Superwoman for nothing. 🦸‍♀️

So very sorry to hear that stay strong

Dear Jean, I’m so sorry to hear this devastating news. My heart goes out to you and your family. I hope your daughters cancer diagnosis is at an early stage to give her the very best possible outcome. Remain positive, that is always the best way forward.

The social distancing measures is a cruel irony in all of this, when all you will want to do is hug and be close to your daughter. As a Mum, I can’t imagine how that must feel.

I just want to share a positive story with you, in the hope it gives you some encouragement. My friend celebrated her 67th birthday in lockdown yesterday. When she was 26, she had osteosarcoma in her femur. It was a devastating time for all concerned. I will admit at the time we were not hopeful. However, here she is 40 years later; the tumour was successfully removed and metal plates replaced the bone. I hope this encourages you.

We’re all here for you.

Mary x

Superwoman
Superwoman
in reply to mhos61

Oh Mary, thank you so very much for your reply, I will tell my daughter.as you say we have to be positive for her.

Thank you

Jean x

So sorry to hear this Jean. Much love and best wishes to you and your family. Karen x

So sorry to hear that, thats dreadful. I cant see it would be anything to do with you. My grandad had myeloma and specialists have always confirmed there is no connection between that and my ET. All you can do is support her or even better give each other mutual support. It sounds like there is a really good success rate for sarcomas so please keep us posted on her progress.

Superwoman
Superwoman
in reply to Jenny_F

I will do my friend.

X

Mazcd
MazcdAdministrator

Dear Jean, I am so sorry to hear this news about your daughter. Sending you both lots of love and hugs. Maz x x

Superwoman
Superwoman
in reply to Mazcd

Thanks Maz, that’s all I want to do is hug her.

Jean x

So sorry to hear you’re awful news, what I can say from experience is stay positive. My daughter was given about 4 months ten years ago, we fought , she had 7 years of treatment and is still here getting on with her life cancer free. She has been diagnosed with fibromyalgia and has a 16 year old disabled daughter, she has such amazing strength of character and I think it’s what got her through. We were both determined she was going to beat it, so far so good. Stay positive, nothing is written in stone. All the best thoughts and prayers are with you and your daughter

Superwoman
Superwoman
in reply to Bield

That is truly amazing what a lovely story of love and faith.

Thank you

Jeanx

Hello Jean . So sorry to hear of your daughters problem .I fully understand your guilt feelings as its our son who has PMF, you think did you do something wrong or go somewhere you should not have when he was little but you didn't. The doctors are amazing with their treatments today Jean . Take care both of you. Gill x

Thanks Gill

Dear Jean

What a kick in the teeth this year has been for everyone, and now you have to suffer this as well.

Not only are our hearts are with you and your family, but also our hope that the treatment she is offered is successful.

Keep strong Jean because she will need all the support she can get.

Lots of love

Jill

Xx

Thank you Jill, how are you doing, hope all is well with you.

Jean x

Jean, I’m so sorry to hear your news, sending hugs and prayers. Your ET is in no way connected to your daughter’s condition, please don’t blame yourself, be kind to yourself so that you can support your daughter. Raff

Thanks Raff

X

Oh Jean. I’m so so sorry. This must be devastating for you, your daughter and your family. Take care and look after yourself aswell as your daughter. Jx

Hi Jean,

So terribly sorry to hear your sad news. I hope and pray that she will get whatever treatment is required and a successful outcome. Your own journey with ET has probably prepared you and your family more than you realise to support her through this very scary time and your strength and patience will no doubt be an inspiration for her. loe and prayers to you all and especially you and your dearly loved daughter. with love and prayers, Elzbietta xx

Devastating! My best wishes go to you and all your family. I’m glad you shared. That’s why this sight is so important to us all.

Superwoman
Superwoman
in reply to Wyebird

I know I had to tell someone, and this is the best place.

X

So sorry your daughter has had this diagnosis - it will be a very scary time for your family, and I am sending thoughts and wishes to you. Anne-Marie.

Sorry to hear your news. Hope there soon is some good news with answers for her. Thinking of you.

Ah what sad news for you all. I'm sending you love and positive thoughts. Xx

So sorry to hear this. I hope and pray her treatment is successful. It is nothing to do with your ET but being a mother it's hard not to blame yourself.

XXX

So sorry Jean about the heartbreaking news.

When something happens to our children we feel guilty, because as mums we want to make it all well. Thinking of you both.

Please don't despair to much. I once diagnosed the same disease in someone who played in the same cricket team as me. Yes he had a hard time and eventually had part of his thigh replaced with a metal graft. He is now very well and able to do a manual job and walks normally. I hope your daughters treatment goes as well. Best wishes.

Superwoman
Superwoman
in reply to skodaguy

She is lucky she has the help of her spinal consultants behind her as the is a medical secretary, to three of them, one who is involved with Sarcoma Clinic at Stanmore.

Just such devastating news in someone who I class as young. But we all need to stay positive for her.

So thank you.

Jean x

That's such a blessing. She sounds like she will be in the best hands. As you know getting the best medical care is crucial.xx

No words I can find just hugs and silent support xx

When I read your name 'Superwoman', just know you will be 'SuperMum' too....along with all those others who have written to you, my heart too goes out to you...and prayers for your beloved daughter that she will come through this and be truly well again. May you be encouraged by all the love and support 'out there', not least from this community. Love to you and ongoing prayers for all your family. Tinkerbell

Oh thank you, , my granddaughter is very much into Tinker bell at the moment everything is about her. 🧚‍♀️

Sure your granddaughter is an absolute joy to you....when I was little, because my brother was called Peter, I was convinced I woud be able to fly and spent ages and ages leaping off my bed and couldn't understand why I landed on the floor every time. Thankfully didn't try going out the window! Special prayers for your daughter and may you be given wisdom and peace how to deal with everything, each and every day. Blessings for all your family, Tinkerbell

Hey Jean. Love to you and your family at this time. It is sad that you think in some way this your fault. It is such a mum thing to want to take the blame and the pain, I remember my mum thinking she did something wrong for me to have ET. She did not but it is lovely to have her love and support as your daughter will love and need yours.

So very sorry to hear your worrying news. I am thinking of you all and sending you love. Love and hugs to you.

I am so very sorry to hear such news , my daughter was diagnosed with breast cancer last year so I totally understand.

You must not feel guilty, it’s not as if you asked for a daughter with cancer. It’s just very unlucky and extremely upsetting for you all.

Wishing you both every good wish going, every happiness on the new journey and may you both come home safe and sound

Hugs

Regan

Dear Jean, I'm so very sorry to hear of your daughter's awful news. It must be so very difficult at this stage to look forward to better days when she will have treatment to overcome this disease, but I know these days will come and hopefully they've found it at an early stage. All our thoughts are with you, your daughter and family. Love and prayers, Fran xx

Jean so sorry to read your news. Keep great faith in the medical teams and remember these days, malignancy is not the end. The doctors are just brilliant at helping and treating all kinds of misfortunes our bodies through up for us.

Please do keep in contact and hope very much our forum will be a source of support for you.

Goodness. Never apology for needing to share bad news. That’s what friends are for. I’ll keep you all in my prayers.

So sorry to hear this Jean, must have come as such a shock for you all. Guilt seems to come along with the title of being a Mum. I so wish all good things for you and obviously your daughter. It's difficult to but try to find some hope that a successful treatment is out there. My thoughts and all good wishes are with you.

Grace x

Very sorry to hear about your daughter. I don’t think you should be feeling any guilt about it though our emotions as parents are often irrational. Certainly you should not need to apologise to us for sharing as we are all here to support each other with the things life throws at us. I hope and pray the doctors will be able to successfully treat her. My thoughts are with you. Jan x

My thoughts and prayers are with you. I’m sure your daughter’s challenge is completely different from and unrelated to yours. You will be a tremendous resource for her.

Jean

My heart is with you and the family,my beautiful daughter,was treated forcancer 3 years ago at 34.

Im Sending

Love and healing for all of you

Marilyn

Xx

Thank you.

I am so sorry to hear this! Hoping your daughter will pull through this with good medical care!

We are saying lots of prayers.

So sorry to hear that but you must not blame yourself. She’s watched you over the years and seeing how strong you are so she also will be strong. It is not your fault. It sounds like you have a close relationship, so you can be there for her as she was there for you. There are many medical advances now. Sending prayers that she will heal with your support, as well as her family.

Jean - this is devastating news and I am so sorry. I'm sending you hugs and hope. As so many people have said, there's no connection between your ET and her condition -- and I know I'd feel exactly the same way if this were my daughter. Know that we're with you, and here any time you need anything. Take good care, Kim

Sorry to hear your daughter has such a tough piece of news. Thoughts and prayers headed to her, you and your family.

I do hope you can stay away from the blame game. Even if there was a genetic link, this is not something any of us can control. I have a JAK1+ PV as well as Neurofibromatosis type 1. Both of my kids have NF1, which for my son has created some issues. My daughter is also JAK2+ with a current diagnosis of ET. They do not blame me, nor do I blame my Father, from whom I inherited the NF1. Some things are simply beyond our control.

One silver lining is that everything you have both learned about dealing with ET may help you both in dealing with her form of cancer. You already know how important it is to get educated about the condition and even have a starting point to build more knowledge. You both understand how important it is to stay positive and be willing to give and receive support. You already understand how important it is to be clear and assertive in managing your medical care. I am sure you will be a huge resource to your daughter in this challenging situation.

All the best to both of you. Please let us know how things go,

I will keep in touch, can’t do without this forum, the last seven years of being on here has taught me so much, the different types of MPNs and how people cope with them, so hence my first port of call to the Voice with my worries.Take care of yourself and your family.

Jean x

I am so very sorry to hear that your daughter has Sarcoma. It is another rare cancer. I had a lyposarcoma 3 years ago and was treated at the Sarcoma Unit at Stanmore. They are the best professionals in the world for Sarcoma and your daughter will receive the best treatment and care. The nurses are amazing on the ward too.

I send my kindest thoughts & best wishes to you all. Xx

Love the name. I have not read about this type of Sarcoma, whereabouts in the body is that, and was it treated successfully. And are you alright now.

One of my Daughters consultants that she works for Hanny Anwar, plays his part at Stanmore’s Sarcoma unit so she is in the best hands.

Take care

Jean x

Hi Jean, I'm fine and it is fine now thank you. Mine was a tiny sarcoma within a lypoma (fatty lump) so it was removed, had a bit of treatment and all gone. I was under professor Tim Briggs who is the best. The ward itself all the nurses were so lovely. They had people from abroad as inpatients on some sort of trials. I have read up a lot about it though mine was different in as much as it wasn't in bone. It was at the side of my breast.

I send my love to you and your family which has been made worse by the current problems but I know your lovely daughter wouldn't get any better care anywhere else in the world.

Take care and keep us updated.

Julie xxx

So very sorry to hear your devastating news. It's sounds as though your daughter will have the very best care. Thinking of you all xxx

Sending you love and virtual hugs. It sounds like your daughter is in excellent hands. And that’s really what matters going forward.

Wishing you every strength. Superwoman by name and Superwoman by nature. But please, remember to keep recharging your batteries. ❤️

Please keep us posted.

Dear Jean, , I'm very sorry to read your sad news about your daughter. Your kids are always your kids no matter their age or have family of their own and I remember how upset my Dad was when we learnt I had MF age 45 which shocked me as he doesn't show his feelings. But he has supported me throughout in his own way.

And I know you will be there for your daughter through the hard times ahead drawing on your own experience.

Please brush all thoughts of any blame to one side and have no doubt that she is lucky to have a mum like you in her corner in her times of need.

Love and best wishes going forward to you and your family.

Regards - Chris x

Thanks Chris, that means a lot coming from someone who has been through so much himself.

Jean x

Hi Jean,

I’m so sorry to hear your news, having read all you have written I’m so glad your daughter has a good team caring for her.

She will get the best care possible and to know this from one of the Consultants she works with, is fortuitous and will ensure she has the very best treatment..

Take positivity from that sentiment, I understand how you are feeling with regards to ET etc..

You haven’t contributed to the Sarcoma truly...

It’s sadly one of those things that’s happening to your girl.

It’s a normal response for us mum’s to fear, “ it’s our fault”...

I’m a mother to two daughters and my youngest has been through the mill with health issues and Surgery..

If I could have undergone all my girl has been through, I would gladly.

You need to stay strong for your daughter and grandchildren, stop beating yourself up over the if’s ?

She will get the best care, age is on her side and she has you in her corner fighting with her.

You nurtured her as a baby and raised a lovely daughter, with your love, support and understanding that’s all she needs from you...

Let the Experts take care of the rest of it...

She is in Safe Hands and that is a Blessing..

All easier said than done I know, but she will need your strength and assurances in days to come..

There is nothing quite like the calming words of mum saying, ‘all will be okay’...

Save that strength for the days ahead, don’t waste anything on thoughts of blame, I say that as a Mum and Nurse..

My thoughts are with you and your daughter and her family.

Take Care All.

Maria xx

Thank you Maria for your so, so kind words. She had her biopsies done this morning, and I hasten to add without sedation just numbing of the area, she said that it still really hurt, well some of the words were a bit expletive 🤪but she wanted to have her wits about her when she gets home with the children.

They were pleased that she is made of strong stuff, which will set her up for the long road ahead, she was a swimmer and swam for Kent Ladies and Bromley and Beckenham, and the training was hard early morning starts at. Crystal Palace, so has always kept very fit which will stand her in good stead for the journey ahead. She now has such an amazing team around her, from nurses to top Consultant Surgeons, so keeping our fingers crossed and staying positive for her.

Thank you once again Maria.

Jean x

Jean,

You are very welcome, today was a big day for your daughter..

I believe she was entitled to a few expletives bless her..

Really good to hear your daughter is made of strong stuff, brave lass and wonderful mum. Ensuring she is fully with it, for her children once she got home.

All her training will indeed put her in good stead.

I can relate to all of that training journey, our youngest daughter is a Swimmer and trained relentlessly, mine swam for the County etc etc throughout her learning years.

Early mornings and evenings etc, I remember it well.

Like your daughter mine is fit and a tiny size 6.

Mine maintains her fitness levels at all times and it has served her well.

She has undergone extensive Hospital Treatment etc.

Like your daughter I was present when mine had Two (2) very difficult and painful procedures without Anaesthesia.

A former colleague of mine commented on how my daughter had two procedures without being knocked out, whilst other ladies had one (1) procedure with Anaesthesia.

I replied she is a tough little cookie and I believe your girl is the same..

Well done to your daughter today and you too, I know what you are going through...

Be strong Jean and I totally understand your need to break lockdown to help care for the grandchildren..

You will simply need to be careful and vigilant.

Your daughter will feel safe knowing her children are in the best hands possible, with you..

That will allow her to concentrate on getting herself through this..

Swimmers are a tough breed full of determination and stamina, have faith Jean..

All the Best to You and Yours

Maria xx

Oh thanks Marie, swimmers are indeed made of strong stuff, like your daughter she keeps very fit, Yoga, Pilates, running , lots of walking and still swims, but only with the children not competitive anymore.

Did you daughter get over her problems alright. One of her consultants called after the procedure and blew a gasket when he found out, and said what are you mad, she just said, I needed to get home to my family, and this was the best way. That’s daughters for you.

Jean x

I've only just read this thread and send my best wishes to you and your daughter.

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