Bewildered

A very warm welcome to the group DDChops but sorry you have to join us here. I also have a soft tissue sarcoma, mine is endometrial stromal sarcoma. 

I am not surprised that the news hasn’t sunk in yet. The early stages of tests, and waiting for results is agonising, but we are here to support you every step of the way. 

Hi Chelle, thank you for replying. I am just in limbo at the mo as I don't even know what type I have. Xx

Hi DDChops, I have soft tissue sarcoma, radiotherapy induced Angiosarcoma. Diagnosed November of last year. This is just an awful time for you, you will be in shock. I'm still coming to terms with my diagnosis, I know you won't recognise this yet but I am crying less than I was. Having to chat with loved ones is still a very painful thing for me and generally always ends in tears. I wish you all the best with your treatment plan and please do keep in touch, they are very welcoming and supportive on the forum.

Hi Marie, thank you so much for replying to my post. I am still in total shock. I left the lumps on my foot for ages before seeing the diabetic nurse about them. I'm not sure which sarcoma I actually have until I see the consultant in the 18th by then I should have had my ct scan. I have stopped myself googling the various types it can be as I am scaring myself. Once I get the diagnosis, would you mind me keeping in touch as I am finding it hard to talk to my family about this. Can I ask you, and please say no if you don't want to answer, but have they actually told you that you can die from this, the cancer nurse told me there are lots of treatments around now but never answered my question. I'm just in limbo at the moment and struggling big time xxx

Hi, you're welcome, no problem. You will be in total shock and for a while yet. You did right not googling. It's only natural you would want to find information that would help to make you feel better but as you haven't had your diagnosis yet potentially you are just filling your head with scary stuff that doesn't even apply to you. Of course I don't mind you keeping in touch and I will help where I can. It's natural to feel the way you do about your loved ones. But I'm sure they will want to support you and in time you will hopefully find it easier to speak to them. Yes, they told me I was going to die but please remember this is for my diagnosis and applies to me yours may be something completely different. There are so many different sarcoma's and each one is treated differently in it's own right. You will be struggling you have only just received this dreadful news. I know it's difficult but try and rest as much as you can. Take care

Hi Marie

You sound such a wonderful person and I am just so sorry I have had to meet you in a site like this,but I'm so glad I did. Will let you know when I hear anything, and thank you once again. Everyone is so friendly on here, it's been a blessing to find you all xx

DDChops send me another friend request i do not have you as yet.

Hi i am really sorry i cannot get you up.

The forum was updated last week, and half of us have problems with it and they are trying to sort it out, we have half the things missing.

Hi Ellie, it says that I am already a friend on your page. Please don't worry about it we can text in here anyway. How is your Sunday xx

Welcome to the group DDChops - I'm glad you have found somewhere you feel able to talk about your diagnosis (and anything else of course). They are a very chatty bunch here (I can't keep up with them ).

I am stage four for duodenal cancer. I am very lucky in being able to speak about it openly with my partner and family. We (and this bit is important as it relates to family members/friends as well) live close to a great hospice and the support and (free) services we access there help so much. We have also accessed support via a Maggie's centre in Edinburgh and I would second eddie's recommendation on that front.

I also have a very supportive/understanding GP and that is making a massive difference as well.

Wishing you all the best in your journey DDChops .

mikel