I have Spindle Cell Rhabdomyosarcoma. It's rarer than I thought. I haven't met one person my age with it. To date I've had a surgical biopsy, followed by a wide local excision, PET, MUGA and CT scan, EDTA test and bone marrow biopsy all in the space of 7 weeks and all at the fantastic RMH Sutton. I wish I could have chemo at Sutton as I've made good friends there but I'm not allowed. Now everything lies in the hands of the marvellous people at RMH Chelsea. Hip feels ok now after minor surgery yesterday and wound from second op is healing nicely. I think I am just about ready for chemo now, which starts in a week or so. I'm tying up loose ends now and I'm bracing myself for what's to come. I'm meeting my team next week to discuss results of all the above scans and tests and to get a prognosis because the first one I got has changed somewhat.
It has been an exhausting journey since my first MRI scan last november. I never thought this would happen to me 34 years into my life. Now the fight really begins. What I hope is saddening me, will hopefully strengthen me. I will give it all my power and strength to fight this for my babies, my family and my friends. I will get through this. I have met some amazing people along the way from surgeons, physiotherapists, nurses, to the staff who served me lovely cups of tea in hospital and who hung around to chat when they could sense I was down, fellow patients who shared their stories by my bedside and at art therapy, my macmillan nurse who I met today, and to everyone who I've met on this site. I thank you all from the bottom of my heart for listening to me at a time when I couldn't feel any more isolated if I tried. x
