extraskelatel myoxide chrondro sarcoma

Hi Madge, yes, these rare cancers are incredibly lonely. Have you contacted Sarcoma UK? Both they and the Macmillan folks might well be able to point you in the right direction if they don’t have the information you want, and both have helped people I know. I’ve got similar problems finding out about myofibroblastic sarcoma - there just isn’t much credible information out there. 

Sorry I can’t be more help and good luck in your search,

Hi Madge,

I hope you find someone who can talk with you about your specific sarcoma. However I just wanted to say hello & send you love. If you ever just want a general chat there are always lots of friendly folk on here. I’m always checking in if you need to off load.

Sarah xx

Thanks Sarah

Its nice to know there are people other than your family to off load too, this illness affects them such alot i sometimes dont want to say things through fear of upsetting them. People in general try to be kind and say stuff like you will be ok your not going anywhere but think that is harder than just saying enjoy life while you can.

Madge

Good morning Madge,

I know it can be very hard to speak with those who love you the most. They naturally want to reassure & quash your fears. For you though that is not always useful when you are dealing with the reality & facts. I don’t know anything about your prognosis but I do think it is important to hold onto the positives rather than the negatives & as you say, enjoy your life to the full. I have found that throughout my journey I tend to dwell on the negative pieces of information & found it hard to muster hope. I am very lucky in that the negatives started to become more positive but I do believe that hope is very important & I try to put the negative things & posibilities further away than the positives in my mind as much as I can. I listened to part of the ‘You, me & the big C’ podcast & they spoke about thoughts being like trains & how you can work on being aware of thoughts coming into your head & ‘not getting on that train’. Basically it’s about trying not to let all your thoughts take you to dark places. Anyway...I found it helpful. It’s a free podcast that just came up on my IPad too so you could give it a listen if you’re interested. Maybe you could speak to your relayives or give them some of the booklets from Macmillan. My fiancé ordered some for himself when I was diagnosed & one was all about talking to someone with cancer. Hope you have a positive & happy day.

Sarah xx.

i like the idea about trains thanks as for my condition due to it being so rare it is terminal i have secondrys too but i will never give up i dont intend to die anytime soon i want to see my grandchildren grow up im 54 now and decided to medically retire from my job so i have alot more time to do things i have always wanted to am currently trying to book a surprise holiday for me and my husband to go and see the northern lights

Madge

Yeah I like it too! I think we forget sometimes that if we dismiss a thought we can avoid taking it further & letting our fears run away with us. The women on the podcast are all quite young and I just liked some of their to the point and down to earth points of views and feelings. The holiday sounds amazing! And yes that is the attitude to have! Look how many people live with secondaries and terminal conditions for many, many years. 

Xxx

Hi Madge

I have this type of Sarcoma. I was first diagnosed in 2010. I'm nearly 40 now. Its not been an easy time but my friends and family have always been there to support me.

I agree i haven't found anybody else with this type of Sarcoma and the information available is almost none existent. 

The last 12 months have been particularly rough but I refuse to give up. I have got a big decision to make at the moment regarding treatment and I am currently looking at all the options available worldwide. Hopefully something will come up but its not easy.

Lee