Having chemo but not cancer.

So where to begin…the start I suppose. The last 8 months have been an emotional rollercoaster. From being misdiagnosed to being told to expect the worse I really didn’t know how to act or feel. The “I’m fine” phrase became my catchphrase. Once having received a diagnosis just before Christmas I was elated. It was a rare benign tumour but not cancer. I was told I was to expect a date for surgery and that would be the end of it.

I’ll quickly (if I can) tell you about my diagnosis. For the last few years a lump in my left hip has grown to almost the size of a rugby ball and in the last year it has caused me paralysing pain and upset. The ‘rugby ball’ now has a name…desmoid fibromatosis, it’s a bit of a mouthful and causes a look of confusion when said to others. So what is it? Its a non-cancerous tumour that can appear anywhere in the body but causes a range of symptoms which can become ever aggressive. Apparently you can live with them but once they become nasty (and I think mine is rather spiteful) they like to treat them with some sort medication, surgery and/or chemo…

20th Dec 2016 arrives and so does a letter asking me to attend an appointment on 28th to discuss treatment. “Excellent!” I thought, “not long now and I’ll be back to active, non whingey me!”.

I arrive in Oxford on 28th Dec excited at the prospect of finally reaching the end chapter of what has been a gruelling and especially painful 14 months. I sit down and the Dr. explains she specialises in cancer but that’s not why I’m seeing her. “I know. It’s a desmoid firbromatosis”. She smiles at this response and continues to collect the history of me and my spiteful desmoid. She mentions chemo briefly at the beginning of the sentence but continues to discuss other tablet options to which I listen to and smile politely.

“But I think it’s best you have chemo”. ‘Crash!’ I’m back in the room. All I can do is reply “Ok, if you think that is the most logical treatment to use”. “I do” she says, with a soft smile and her head slightly tilted to one side. “We want to remove it, but at the moment because it is still growing, we don’t know exactly where it has spread to”. “Ok” I reply, feeling slightly bewildered at the proposed treatment.

So that was that! I was handed some information and given two weeks to digest the information. Now I have to be careful to not go off on a tangent here, as I don’t need to share every minute of those next weeks.