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  • Forum Post: Re: At my witts end help!!!

    Posted by
    Posted 4 days ago
    thanks I am greatfull for your help i found a chordoma site on yahoo and it helped but not much to do with Scotland mostly USA , well they do different ways than we do, we get sent to nhs docs whether we like them or not, the only way we can change our doc is to go private and sorry but don't have...

  • Forum Post: Re: At my witts end help!!!

    Posted by
    Posted 4 days ago
    thank you: Mal Thanks I went for a look at the chordoma site and it was helpfull and i was able to print out some of it for the family, I was given between 6-4 years that was quite a while ago as i am now on my 9th year, so glad they were wrong but what now no one seems to know. Which is no good for...

  • Forum Post: thank you for help

    Posted by
    Posted 4 days ago
    just a note really to say thank you to you who wrote back to me, I have had a look at chordoma site thank you but would like to stay here too ok with you i hope!!!!

  • Forum Post: Re: I thought I was forgotten

    Posted by
    Posted 5 days ago
    Hi Shell It is shocking how GP's can get it so wrong . I saw 3 different ones over the months at my surgery. They were all the same. One actually rolled his eyes when I went in I was crying with pain and he actually said what do you want me to do about it. One thought I was a hypochondriac . And...

  • Forum Post: At my witts end help!!!

    Posted by
    Posted 6 days ago
    Hi All i have been dignosed with chordoma and yes rare but no one has heard of it except in USA what about Scotland help please anybody !!!!

  • Forum Post: Re: I thought I was forgotten

    Posted by
    Posted 2 months ago
    Hi again Pat , I know exactly what that was like not being believed misdiagnosis etc . Mine started in February 2010 I had a pain in my back . Gp said muscle pain take paracetamol . 2 weeks later it was cocodamol the pain got worse checked urine ok it's muscle stop lifting . Couple of weeks later...

  • Forum Post: Re: I thought I was forgotten

    Posted by
    Posted 2 months ago
    Hi Pat I'm glad you are more positive and feel like you are fighting it , that is the best way to be , stay focused and really believe in yourself . The state of mind keeps you going. I know I lost mine the last few weeks because of the steroids but now they are greatly reduced ,I know it's...

  • Blog Post: The start of the nightmare journey

    Posted by
    Posted 4 months ago
    2012 I have always thought that Christmas updates had little use from our point of view. Most years are similar, we work, we rest, we go on holiday (sometimes to exciting places), our health is sometimes a problem, but we get by. Who wants to know about our side of things when we are all having...

  • Forum Post: Secondary Bone Cancer

    Posted by
    Posted 7 months ago
    My Dad has been diagnosed with secondary bone cancer (from Prostate cancer). There seems to be no desire by the medical profession to scan him to see the extent of this secondary cancer. In fact he has been advised by his Cancer Consultant that there is no further treatment available to him. My dad is...

  • Forum Post: How long does my friend have?

    Posted by
    Posted over 2 years ago
    Hello, I hope you don't mind me asking this question? Four years ago one of my friends discovered a lump and was diagnosed with breast cancer. She had surgery and seemed to be recovering well, but last January the doctors found it had come back and was in her spine. Since then it has spread...

  • Blog Post: WTF 2

    Posted by
    Posted over 4 years ago
    So, its apparently good news. I thought mum was 'doomed'. That was my initial fear. Its definately not good, but all is not lost. Mums cancer has spread to her bones, round her chest cavity, into her legs, her spine and into her head. Thats the joy of stage 4. When we were told on Sunday night...

  • Forum Post: Radiotherapy/spine ups and downs

    Posted by
    Posted over 4 years ago
    Just had a stressful two weeks. Admitted to hospital with back pain and numbness/pain in hip and thigh. Quick MRI (they can do these things so much quicker when you are an in patient) confirmed what we had suspected, which is Melanoma in spine, causing some pressure on nerves coming out of my Lumbar...