Other than the swollen abdomen and some pain that comes and goes, I am really very well. However I find myself on a journey that has rudely interrupted my daily life. Last week, week three from the first bombshell, included 17 hours spent in hospital over two visits, one by ambulance, 1 liver biopsy, 1 x CT scan, 2 x ultrasounds 1 x flu jab, 6 x other needles for various reasons, 2 x cannulas and a pain reading that exceeded my experience of child birth and has forced me to review my understanding and interpretation of my pain scale. I now have a cocktail of medication for pain at my disposal and have discovered that in A&E people dont like saying the word cancer out loud, I think they worry I might crumble into some crying, despairing wreck and dont how they will cope. I have also discovered friends and family suddenly feel the need/right to know my every movement, feeling, symptom and to know 'if I have heard anything more yet?'
I am still finding the whole thing really odd, how can I possibly have primary cancer (hepto bilary area (Pancreas, gall bladder, bile duct) still to be completely identified but there ish) with a liver packed full of secondary lesions? From what I can gather so far this is a life limiting diagnosis - how did this happen? As I sat yesterday in the oncology day unit ( 5 hours, 2 x cannula, new pills and an introduction to a Palliative care nurse)- the unit and people which was amazing BTW, I looked around and thought 'goodness these poor people all have cancer, with issues, what am I doing here?'
I find myself explaining to people I love that I have cancer and that there is no cure but hopefully treatment that will give me options - in return I get looks of disbelief that mirror my own feelings. I look at my 15 year old daughter and just cant understand I may not see her reach all those lovely normal growing up milestones, she may well be doing it all without me - how can that be right?
Whilst all the specialist staff have been very kind and are clearly amazing people, I cant help but think surely you should be spending time with someone who is ill?
As with this website there is a huge machine that wraps around this cancer business and navigating it with questions and without knowing what all the questions are is a challenge, however this cancer thing is huge, who knew? Even with all these resources it seems that there will continue to be some questions that may never get answered.
