Moving swiftly on...

To quickly recap: Following a trip out of my front door in early June, several things were identified on the CT scan of my torso at A&E.  One of those turns out to be a potential GIST located in my duodenum.

I have been put on the '28 day pathway' and allocated a MacMillan nurse to coordinate my care plan.  I have had a gastroscopy with biopsies taken. The MacMillan nurse phoned me with the news that these have come back as 'inconclusive'.  

The nurse was very helpful and easy to talk to.  As no one had, up until then, used the word 'cancer', I asked her outright if that is what I have.  She told me that the pathologist who looked at the biopsies and the consultant who first identified the 'GIST' both think that it IS cancer and that I should be prepared for it to be confirmed following an endoscopic ultrasound, which is now scheduled for September 16th.  However, the results of biopsies taken during that procedure will take a few weeks to come back, so I'm not expecting to know much immediately following the procedure. The nurse warned me that I will possibly need to have the tumour removed.

I'm not in such a state of anxiety as I was when I first posted a few weeks ago. Knowing that the MacMillan nurse is there is a great help and has relieved me of the job of chasing appointments and information. I know that I can phone her if I have further questions.

I am amazed at how quickly appointments are being made, given the state of our NHS, and am grateful for all the medical support I am being given.

Of course, I remain in limbo - is it? isn't it? Will they find on 16th that it's something other than a GIST? Will I need an operation? Might there be a connection between the potential GIST and the upper lobe suspicious lung nodule that is also under investigation, albeit, with less urgency given that I'm not seeing the consultant again until the beginning of October and I have not been given an appointment for a repeat CT scan which I was rather expecting.

I'm learning to live from day to day, but it's frustrating.  I have other health conditions that limited my life considerably for several years until they were brought under control in two instances and 'burnt out' in the third. I've had a period of almost 18 months 'living normally' and now I'm back into wonderland ie wondering what appointment will be offered next and whether we'll be able to continue with our plans to visit family 400 miles away during October half term.

Lots of people are living with such uncertainties and I know I'll get used to it again, but I still wish it hadn't come to this. Yet, I am, without a doubt, glad that a simple trip has led to the medics finding these possibly life changing conditions.

Forgive me for rambling but it does help me to write stuff down. No need for replies, unless you'd like to, of course, in which case I'll be pleased to read and respond.

xx Moy