I was determined that today was going to be my last and final visit to “the mortuary”… but not before an open and honest discussion was to take place between myself and the consultants. With all the tests I’ve had over the past 18 months from CT scans, endoscopy, colonoscopy, gastroscopy and more ultrasounds than I could shake a stick at… I’ve had enough.
I’ve had enough of waiting rooms, endless letters, grumpy self-effacing doctors that don’t listen, being prodded and poked, having to find friends available to pick me up following any procedures, hospital car parking charges, and… ooh I could go on!
As someone with an NHS frequent flyer card, I’ve had over 24 hospital and GP appointments since my first ‘obvious’ symptoms ie blood. My first appointment was with my GP and he referred me to for an urgent gastroscopy – such a shame that this appointment at the hospital didn’t happen for some 7 months! Instead I was passed through many departments and had many more tests.
I will now write the posts that I should have written during my journey with this little ‘hiccup’. Until now I’ve felt let down, depressed, anxious and worried that the symptoms were in fact all pointing to a metastases of cancer… but without feeling as if any of the tests or people I was seeing were listening or really gave a monkey nut about finding a solution.
I’ve been passed from pillar to post and between three hospital sites that all (allegedly) are the same medical unit but really don’t speak to one another or share notes. I’ve had to remind all but 2 hospital consultants that I am also a cancer survivor ie have a history of cancer (apparently it’s been missing from my notes throughout… although I now know this to be untrue, just simply that they haven’t read my notes!)
All that said, today’s appointment went well. I met with a urology consultant who was kind, listened and ‘consulted’. He welcomed me to the consulting room. Apologised for the delay in being seen (a delay is a given in this hospital but this the first apology I’ve ever received!). He then quickly looked at the test results I had bought in from my last appointment at a different hospital – the nurse had given them to me rather than rely on internal post!
We then discussed my case. How I was feeling currently. Had the latest course of antibiotics worked. He also discussed the ‘theory’ that ALL these problems stemmed from an infection I received in 2009 following my 2nd Phyllodes operation. This infection not being treated and steadily getting worse and spreading to other organs. It makes sense. It also explains the earlier symptoms which were (amongst others) constant nausea, fatigue, sporadic pain and cramps… the worst of which were nausea and fatigue!
As the infection spread the symptoms got worse and led the additional external symptoms in the loss of blood and constant need for the loo.
The latest course of antibiotics were given to me for the infections discovered in my oesophagus and stomach. These appear to have worked (mostly). At least the blood has now stopped. The pain is much less frequent and the reflux pain can be managed with a regular swig of Gaviscon or chewing a Rennie or two.
So with consultation, we decided that we know what’s gone on. We know where the issues are. The symptoms appear to have faded or be improving. We also know I don’t want to spend a moment longer in hospitals, more tests or retests or with endless courses of antibiotics.
I chose today to be discharged from the hospital. The lovely consultant said he would be writing to my GP to explain that should I get any of the symptoms back, I am to have an emergency appointment with the GP for urgent antibiotics. And IF the blood returns, I get a ‘go straight to hospital card’.
I truly wish we could have had this conclusion some months ago. Or for the nurse that caused the problems in 2009 to have thought about the consequences and perhaps have given me antibiotics at the time. I’m saddened that I’ve felt so dreadful for so long and spent a great many hours worrying that the cancer had spread and it’s being missed whilst I skip from hospital department to another.
I guess today I should be grateful that it’s not more cancer.
(tomorrow I go to a different hospital for the results of my 6 monthly Phyllodes check – what joy!)