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Synovial Sarcoma - Online Support Group

My husband lost his battle April 4


#1

I can’t believe how devastating this is. I thought I was prepared on some level. I wasn’t. It happened so fast. I miss him terribly.


#2

We think we are prepared until it actually happens!!
It seems so surreal for a long time!
I lost my wife at age 33 on Jan 10 this year.
Synovial Sarcoma in her spine and brain.
My heart goes out to you and your family!
Stay strong.


#3

To the family left behind, I lost my 26 year old daughter on March 12th, 2017 and I still can’t believe it. So painful to watch her fight and lose to this monstrous disease. It seems that it’s indestructible. My thoughts are with you.


#4

Hugs to all of you! Life can’t be taken for granted :cry:


#5

I have been reluctant to post, since I don’t want to discourage those who are still fighting. The emotions you describe are all too real, and it’s probably of little comfort to know you’re not alone. We too lost our daughter, on March 9, 2017, 2 days after her 44th birthday. My son in law lost a loving wife, their two children lost a devoted mother, and the university where she taught lost a talented choreographer, dancer, colleague and teacher. We have set up a scholarship in her name, but are still struggling to find purpose and meaning in the aftermath.


#6

I dont think we will ever be ready when you lose a love one. I said goodbye to my mother last month. I knew the time was coming close last fall, i knew she was suffereing and for a long time I came to conclusion that she would leave me soon. However, when I saw that last breath the amount of time and consolation could never ease the pain. Ive came to terms that it will always hurt and the only thing you can do is remember always of the beautiful moments and words she/he said to you.

My prayers and thoughts will be with each and one of you.


#7

We are so very sorry about the loss of your husband. We will keep you and your family in our prayers.


#8

Mainemomof3

Our thoughts are with you and your children. Feel free to come here to connect with others who understand only too well what you have gone through, and are going through.

Seenie and everyone at Ben’s Friends


#9

i feel for you and hope your managing ok, my daughter ( 33 yo) is currently fighting this S.S. and know the ever present feeling of both hope, and possibility of such loss waiting around the corner. I think all of us who have loved ones going through this disease rejoice at the good news and share the loss when we hear of news such as yours


#10

This is my first post ever and i am one of those who read a lot on this website but are reluctant to post. Mainly because it is so painful and sad, and also because I do not want to sound negative - I do wish i would be one of those who can share good news, say ‘yes! It worked!’ But I can’t :frowning: I am at the parking lot of a supermarket in a small city in Co. Mayo in Ireland, 250km from where I live and 2500km from where I was born. What I do here? I am lost soul that is looking to reconnect with her dad that she lost to sarcoma so quickly that if feels more like he died in a car crash. He was diagnosed in Aug 2016 and we lost him in Nov 2016. 3 months… I am now running weekly races across Ireland in his memory, and to raise awareness about sarcoma + funds for sarcoma.org.uk. I am every weekend somewhere else, every corner of the country - looking for answers… for bit of peace… for reason why all this has to be happening to all of us. I cry my eyes out after every race - but I guess that’s a good thing - at least those emotions have a way out.

I hope we will have one day cure for this terrible disease and our loved ones will not be leaving us this way. I wish everyone on this site love, support and that we all finally somehow find a way how to move on and be in some sort of peace again. Giggi


#11

Love and hope Gigi. It is all we have - live each day like it is our last and have no regrets. I am sorry about your dad, just remember the good things!


#12

OMG, I’m so sorry for your loss, i can’t even imagine how hard is this, I’m so scared about this… especially cause this can happen, and you can’t do anything about it! :persevere::disappointed_relieved:


#13

My husband has stopped all chemo and is now relying on a pain pump for some relief. We had the “Quality of Life” talk and decided 6 months of OK is better than 6 months of chemo. It has been a month and they still have not figured out his “cocktail” for the pain pump for any relief. I pray we will have some OK time but I am very frustrated and angry that it may not happen. Prayers for all🙏🏻


#14

Tonya, I would be frustrated and angry too. May be you need a second opinion…


#15

We went for a second opinion at University of Michigan’s Cancer Center. The dr said the same thing his oncologist did. We tried to get into Sloan Kettering in New York as well. They are just out of options at this point and my poor husband is in constant pain. If his primary care Dr had ordered an ultrasound in 2011 they said he would prob be ok now. Damn dr ordered an X-ray. How you gonna order an X-ray for soft tissue?!?!?!!


#16

Primary physicians rarely see sarcoma, may be one or 2 cases in their whole career so they mess up most of the time. That being said, my first imaging study was also an X-ray and it did show something which lead to an MRI.
You can’t change the past so it’s better not to think too much about it. You can only ask yourself what you can do more now. Unfortunately, sometimes there is nothing you can do and you have to accept the fact you are powerless, no matter how hard it is.:cry:


#17

Tonya, I’m so sorry that your husband is enduring such pain.

My son’s doctor ordered an x-ray first which then led to an MRI. The mass was visible on X-ray in his case, so I don’t think it’s always the wrong call for them to order the X-ray first. I’m very sorry it wasn’t the best call in your husband’s case. My thoughts are with you both.


#18

Thank You for all support. I am in the medical field and this dr let this mass go for 2 years even tho it was increasing in size. Any Dr will tell you if you come in for the same prob 2 times it should be investigated further. I know Dr’s are human and they make mistakes just like all of us but this Dr has the God Complex which makes it even worse.
I know I need to accept whatever the Lord throws our way just really hard sometimes ya know😕


#19

When I said he was seen 2 times it was within a few weeks of each visit.


#20

Tonya, I do hope he is not his primary physician anymore. It’s unfortunate that you only find out how good a primary physician is only when you face significant health issues…