Hello

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Hi everyone.

My name is Lisa (my adorable dog is Jake!). I was diagnosed 2 weeks ago with Synovial Sarcoma large tumour in top of right leg. Got first appointment tomorrow miles away from my home (it’s in Stanmore) so feeling very nervous.

Unfortunately not my first ‘dabble’ with cancer as had breast cancer 4 years ago so was planning a 5 year get together as so far so good then this came along. Apparently they are unconnected and it’s just the one tumour at top of leg.

I have 4 kids & disabled parents and am Type 1 diabetic so Covid is a huge worry. I don’t feel I can be away from my kids for too long as husband works long hours. Just feeling very overwhelmed at the moment and really angry this has happened again. 
I have a (long) list of questions for Stanmore tomorrow but wondered what other’s experiences of staying in Stanmore was etc & what you recommend I take? Have any of you had to travel for quite a distance to get your operation & if so, how did you find that and cope? 
Just hope everyone on here is ok & keeping safe. 
Lisa (aka Jakes Mum). 

  • Good luck with your appointment today. Let us know how you get on. 

    Shackleton 

  • Hi hope your appointment goes well. It's a very strange and scary situation to find yourself in especially as you have already had breast cancer. I can imagine you are angry and nervous. I had an operation to remove a leiomyosarcoma from my thigh at Stanmore just over two and half years ago. I only stayed in overnight. I go for four monthly checks there too. It's a really good hospital and they are specialists in sarcoma so you are in good hands. Who is your consultant? I live just over an hours drive from the hospital. Me and my husband stay in the ibis hotel near the hospital over night. It makes it easier especially with early appointments. Here if you'd like to chat. Take care 

  • Thank you. It was a bit stressful as after a long journey there they refused to let my partner in but eventually agreed last minute. Wasn’t told until appointment I was having a vein grafted from one leg to other but I have a date for next Tuesday now. Very nervous.

  • Hello and thank you so much for offer to chat. I really appreciate that.. I have Dr Aston who was lovely. I now have a date for next Tuesday which was a surprise but just want it done now. So glad to hear it is a good hospital. Was a bit stressful this week as they refused to let partner in initially but finally agreed last minute. Thanks for tip re Ibis. To be honest we left way to early Tuesday (!) and arrived 3 hours early for appointment so will keep that in mind. I think Tuesday he will drop me off & go. Will let you know how it goes. 

  • Hi good luck for Tuesday. Glad you have Dr Aston. Good the op is being done quickly. Good they let your partner in esp for initial appointment.  How long are you staying in for? I am at Stanmore Tuesday for my check up. I am nervous as I know I have to do it alone. I hope the op goes well. Please let me know how you get on when you can. 

  • Hi K1968. 
    I have heard nothing but good reports about Dr Ashton from patients so that’s really reassuring.  I think 4 days stay but hoping not! Looks like we’ll both be there Tuesday! Hope that all goes well for you. It’s so horrible having to go in alone (Covid has a lot to answer for). Hope you will be okay & will be thinking of you. I’ll let you know how it goes once I can. Thank you for your support. Take care. 

  • You are in good hands with Dr Aston and his team. I'm very thankful for them. Hopefully you will be home ASAP. Nothing like your own bed. I'm very nervous going in on my own x keeping my fingers crossed my x Ray is ok. Sending you good wishes for Tuesday. 

  • Hi Lisa. How did your op go. Hope you are resting and recovering well. My appointment went well. Good news all looking OK. Take care x 

  • Hello! Glad all looking okay with you & appointment went well. That’s great. I got home yesterday- wasn’t a good experience so been advised to make complaint as there was a catalogue of medical/clThumbsup tone1al and aftercare errors made. Op was longer than expected & had to have 3 transfusions and stay for 2 days on High Dependancy unfortunately. But on plus side clear margins & all out. Radiotherapy Thumbsup tone1 but no chemo. Just struggling with mobility & getting around house now. Glad to be home though. Stay safe & take care. Really pleased you are okay Thumbsup tone1Thumbsup tone1. Xx

  • Hey. Glad to hear you are doing OK and they got clear margins at your op. Really sorry to hear you had such a bad experience. It takes a while to get over the op and get mobility going. Am pleased my appointment was OK. I am moving onto six monthly checks as it's coming up for three years. Bit nervous about that but it's the next step. Keep in touch. Stay safe x