Sarcoma - no cure - terminal

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Have lived through the last year with discovering sarcoma, all diagnostic tests and all calls via phone with oncologists. Had operation cancelled last June as apparently not fit enough. Radiotherapy end of July was palliative and to ease pain from sarcoma (in lower leg) and that’s it -Mastisised to lungs now. Can’t fight it.

Basically because of current COVID can’t do any travel, can’t see family or friends yet again. My prognosis is 6 months to 2 years  and yes, am pretty fed up now as time is precious as I am clueless how able I will be in 2 weeks let alone 2 months

My 3 monthly MRI is next week then a 17 day wait for oncologists appointment phone call with results. I live alone and this situation is really starting to get me down now. Don’t even get a well being call or email from GP or my ‘team’. 

Moan over.!

  • Hi

    That's not a moan, just a cry of pain and frustration. May I suggest you join us on the Incurables group as there is more activity and we are all in the same position in terms of dealing with incurable, but hopefully treatable illness.

    x

  • Hi I'm so sorry to hear of your situation,  please don't see this as moaning, you're in such a stressful situation and also having to try and cope with this during a pandemic is awful. This is the time when you need personal contact the most, I know you can speak to people on the telephone but it's just not the same is it. Is there any way you could videocall friends through Facebook or do a video call via Microsoft Teams? I find this better than telephone calls, although really not the same as face to face contact. Fortunately, by the end of March these restrictions will start lifting.  I absolutely hate scan time and there's always at least a 14 day wait for results. I really do wish the result time could be speeded up.  I hope your results will be the best they can be. Bev x

    1in1500
  • Thanks have put in request to join x

    Liposarcoma and practicing positive mental attitude 
  • Thankyou, scan done just 17 days to these results. Trying as per usual to distract myself and just enjoy the here and now xx

    Liposarcoma and practicing positive mental attitude 
  • Hi yes that's the best thing to do, it's not easy though is it. I try and keep myself as busy as possible before scan results. Bev xx

    1in1500
    1. Lilly, It's so frustrating and overwhelming at the same time isn't it. No one understands it quite like someone in your position. Like you I have incurable liposarcoma. Such a difficult one to treat. I've found talking to a counsellor has really helped and I also attend the local Sarcoma support group. Maybe worth looking into if you haven't already. Hoping things are looking up a bit with some of the restrictions being lifted x
  • Ah another sarcoma victim! Yes it’s a difficult and Rare one. Hard for family too, but all you can do is live with it. Out more now, hopefully you are too. At least I am able. Not considered counselling maybe will  look into that . Xx

    Liposarcoma and practicing positive mental attitude