Hi
I'm a 38 female with 3 children 10 yrs 15yrs and 19yrs
Was diagnosed with Sarcoma following suspected night crapms, skin infection to a final discharge on me being adamant I would not leave without further tests. Reluctantly the emergency Dr ordered me a biopsy and advised me to cancel it as as after a massage the lump would go down
I awaited the call for the biopsy 1st march booked!
Chased results 15th March diagnosis over phone ewing sarcoma suspect and that I'd be referred to oxformard sarcoma unit 
Oxford= improper images received
Need further mri of thigh
Next pet scan
Heart echo
Kidney filtration
Chemo day 1 . Take 1
Pet scan shows external iliac lighting up so as it's deep need lapriscropc procedure. Chemo postpone d
Chemo day 1 take 2
April 11 liver levels not where they're supposed to be
Possibly chemo will be postponed
God will its started but amended altered etc to ensure safe
My protocol is vdc-ie 9 weeks then operate then 5 weeks. (But there's a risk of radiation in the mix due to lymph nodes lighting up!)
V was removed
Dc halved
7 hours before Chemo ended temperature spiked so Chemo stopped 7 hours early
What does this all mean
Lump is massive
Skin discoloured
Left left can't bear any weight
7.5mg oramorphine evey 3 hours
God knows what I'm asking for or if there's anyone having experienced something similar it would be nice to hear from.you x
Hi Hannahxafa,
My name is Matthew, and I’m from Macmillan’s Online Community Team. I’d like to wish you a very warm welcome to the Online Community, and to say thank you for sharing a little about your experience.
I was sorry to read about your diagnosis, and how it has affected you. It certainly sounds like you have had a lot to process in a very short space of time. It’s natural to feel a wide range of emotions when dealing with big life events like this, so don’t forget to be kind to yourself. Remember that it is ok to feel like you do!
It can be very helpful to connect with others who have received a similar diagnosis, and so I thought it might be helpful to point you towards this thread from community member, Lucy2503:
Ewing's-like sarcoma with cic dux4 fusion
While you’re waiting for some of our other Community members to share their own thoughts and experiences with you here, I just wanted to remind you that you are not alone, and Macmillan are also here to support you.
If you would find it helpful to talk to us about how you’re feeling, our Macmillan Support Line teams can offer emotional support, every day from 8am to 8pm. It’s a confidential space, and our advisers can point you to further avenues of support as well as simply being a listening ear.
To get in touch, you can call 0808 808 00 00 for free, send us an email, or use our live webchat service during our opening hours.
Don’t forget that as well as peer support, you can also seek support and advice on a range of topics over in our Ask an Expert forum. We have Ask a Nurse for medical questions, and Ask an Information and Support Adviser for questions around emotional support and general practical advice. There’s also Ask a Financial Guide for money questions, and Ask a Work Support Adviser for all questions relating to any work issues that might arise. After posting your question, a Macmillan professional will then aim to respond within 1 to 3 working days.
I hope you will find the Online Community supportive and helpful. If you have any questions or you need any support with using our site, please feel free to get in touch with us in the Online Community Team. You can either message us via the private messaging system, or you can drop us an email at community@macmillan.org.uk.
All the best,
Matthew
Macmillan Online Community Team
