Soft tissue sarcoma

I found out in February that I had sarcoma the tumour had grown so big in a matter of months I was in hospital from February till may and then transferred to a different hospital for amputation of my left leg right from the top so I can’t use a prosthetic leg, I finally cam home in the middle of July but I’m not coping very well I’m in constant pain still and I don’t like depending on everyone, I still don’t know a lot about sarcoma just what the nurses have told me and today I found out I’ve got mrsa in the open wound from my surgery. Everyone keeps telling me I’m lucky to be alive but atm it doesn’t feel like it and I know I’ve got to stop feeling sorry for myself but I just feel so down 

  • Hi Angie73, 

    Oh poor you - how awful that you had to be in hospital from February until May and ended up having an amputation of your left leg. All this must have been so hard to bear. I am glad you were finally able to come home after so much time spent in various hospitals but being in so much pain must be so tough and you must be feeling a little bit lonely at times. On our website you will find information on soft tissue sarcomas including on living with soft tissue sarcoma which will give you information on coping with how soft tissue sarcoma can affect you physically including if you have had an amputation. 

    I know you mentioned you don't want to feel like you depend on anyone but sometimes it's worth reaching out and getting all the support you can have. You will find on our website information on support at home for you and your family. I am so sorry you were told you have also developed MRSA from the open wound from your surgery. It's normal to feel so down after everything you've been through and I just wanted you to know that you are not alone here on this forum and I hope that you will get to talk to others who have been diagnosed with soft tissue sarcoma and who perhaps had an amputation like yourself. 

    I've had a little look around the forum trying to find others who have been diagnosed with soft tissue sarcoma and I would like to mention for example  who posted this soft tissue sarcoma thread about their diagnosis only last month so don't hesitate to respond in their thread if you would like to do so. This is just one recent example but I hope that I will be joined by other members of our community who have been affected by soft tissue sarcoma in a similar way. 

    Being in constant pain can't be easy and it might be worth talking to your medical team about this so that they can give you the right kind of pain relief so that you don't have to suffer too much on a daily basis. 

    Should you have any questions for our cancer nurses, feel free to get in touch with them on this free number 0808 800 4040 - their helpline is open Monday to Friday from 9am to 5pm. 

    We're thinking of you during this difficult time and I hope that you will gain a little comfort from talking to others on here who understand what you are going through at the moment and who have also had a similar diagnosis in the past. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • I am so sorry you have been through such an awful time. Lucie has given very good advice.

    I had a liposarcoma which is soft tissue sarcoma. I do send my support and hope that you can get the support where you are that you need. Keep in contact here to let us know how you are.