sarcoma in right leg

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Hello, I am in a lot of pain to put it mildly.  I cannot get comfortable.  The pain shoots up and down my leg when I stand up.   I have been given paracetamol and 30 mg codeine.  I am told that I cannot have a treatment plan until the biopsy results are back, which can take a few more weeks.  It was taken on 19 December.  Can anyone give me advice on how to get comfortable in a chair. Also, am I on the right tablets? I only speak to a nurse or doctor (GP) over the telephone - face to face contact doesn't seem to happen anymore.  The lump in my leg is bigger than a grapefruit and the lower limb is numb.  I am thinking that if it is several weeks before I am offered an operation this cancer will have grown and spread and the pain becomes more severe.

  • Hi  

    A warm welcome to our community I hope you find it both welcoming and supportive.

    Until we suffer chronic pain it can be very easy to underestimate how impactful it can be, my personal bugbear is ankylosing spondylitis a form of rheumatism in my spine.

    Cannot say as I have any great suggestions for you, my wife's sarcoma is different in it was of gynacological origin but for her with some chemotherapy the doctors managed to render it stable. Her route to diagnosis was long and complex though.

    The time befween diagnosis and treatment many feel it about the hardest part of the entire journey. The message we hear most often being the sooner treatment starts the better the outcome but it is perhaps worth reflecting that is more to get patients to their GP in the first place. It is generally worth making sure we get the best treatment and  that is what the doctors are likely doing now. 

    I know is is just another phone call but have you considered speaking to one of the staff on the helpline here, they may have some tips that might help and it is a free phone call too.

    <<hugs>>

    Steve

    Community Champion Badge

  • Thank you for the speedy reply.  Yes, I did ring the MacMillan help line.  The advise was very useful but no one can help me with getting comfortable.  Pain is so tiring as you know.  All my interests don't seem to matter to me any more.  I love to paint, I want to paint but sitting at the easel is a bridge too far.  Anyway, another week is over.  I hope I will hear soon from the hospital.  I hope that you find some relief, regards and best wishes to your wife.

    Mary

  • Hi Medie, I have to say I found the waiting and anticipation the worst part over all so far,and while we have to wait for results we cannot be given medication until they are certain what it is they are dealing with. For pain, I found elevating the area if its a limb, and finding a position to sleep that helps even if it is sitting up in a chair. It's hard to offer any help as we all suffer so differently but I hope this helps for ideas. I am due my rather large op on the 10th Feb but feel free to add me on here and follow if you want to ask anything or keep in touch. I hope you find the support on here that is needed. 

  • You are now 5 days away from the operation.  How are you feeling. I know I would be feeling scared and anxious.  But the operation is on the road to recovery.  I hope with all my heart that it goes well for you.  Everyday, after that, you will get better and better.  Thank you for writing to me.

  • Thankyou, I'm actually looking forward to finally getting the op done, I have had issues for years and missed out on so much. Like you, my interests have all been left behind because I simply couldn't do them or was too exhausted all the time. I have a long journey to go but I hope 1 year from now I may be somewhere close to getting back to work and some sort of a new normality. Xx