Personal Experiences as an Ex-Patient
29 June 2019
The Manor Hotel
Weston on the Green
Why I am stood here
I was asked to give a talk today on some subjects like, Oncology, Dieticians, Fundraising, etc. So I thought the best way to cover these subjects would be talk about my experience of finding out I had Cancer of the Oesophagus and all that followed. Please feel free to ask questions or make comments.
How it all Started
I was having regular Endoscopies as I suffered with Barrats Oesophagus, which is how they discovered this had progressed, and the biopsies came back cancerous. I was referred to Mr Maynard at the Churchill Hospital and came under another consultant Mr Marshall.
My first meeting with Bob Marshall
On my first meeting with Mr Marshall, he explained exactly what I would have done and that the operation was a Major, Major operation. More major than open heart surgery. My reaction was OH SH.....sugar (that was my shock NOT me referring to Mr Marshall. He is nice but I wouldn’t call him sugar!!!!)
As for the Oncology side of things, I think I was relatively lucky as I did not have a tumour so I only needed two sessions of all day intravenous Chemo plus two weeks of pills after each session. The Oncologist Dr Nicola Warner was very good, in as much as she noticed where I lived and asked if I would prefer to be seen at Stoke Mandeville Hospital. The staff were all very good and I was assigned a specific nurse who looked after me all day. This was all new to me and when I looked around at all the other patients having chemo, I thought what a miserable bunch but, on my second visit I knew why they all looked miserable. I know it affects people differently but I am sure a lot of you will agree it does make you feel nauseous and sick etc etc. I had a bit of a worry after my Operation because I received a letter telling me I had an appointment with Dr Warner and my reaction was OH NO, am I going to have to have more Chemo. Wrong......she wanted to tell me that my scan confirmed I was all clear.
My First Operation
This was my first major operation and stay in Hospital so not too sure what to expect. A friend of mine, who had a heart operation, a kidney operation, and a Cochlea Implant, told me that I have to treat the situation like I would when putting my car into the garage for repair – you have to trust them to do the right job. Anyone want Mr Maynard to service their car?
I was a bit surprised that the day after my op’ I was dragged (Not literally) out of bed and walked up and down the ITU ward with all the tubes that had been inserted into to me still there. I still remember the blokes name because he came every day to do the same, walking me around the ward, then the hospital as far as I could cope with, telling me to breathe in through my nose and out through my mouth. His name was Bob but he also responded to Barb...strange but true.
Nursing Staff in upper GI
I am sure that you will all agree the nursing staff are extremely good, thorough and caring. The examples I have of this are,
Firstly the evening that my draining tubes were taken out, I coughed and had an excruciating pain in my left side and screamed. Next thing I knew there are about 8 nursing staff around my bed. I ended up going down to have my chest X rayed about 1am only to be told I was OK, thankfully.
Secondly, for some unknown reason my lower half was really swollen and the Doctor on the ward brought about 3 different people at different times to check me out and see what was going on. I was given a diuretic and eventually the swelling went down and I looked OK.
Thirdly, I poked my tongue out at Ann Phillips, because my mouth felt dry and horrible, not because I was being rude, and she immediately exclaimed, OH you have oral thrush I will have to get you some medication and rushed off.
I am sure we all have different feeling about the food and how it is presented to us. Pureed, I thought was disgusting, even at home it never tasted the same as normal food then soft and mashed was better, slowly getting back to normal. Apart from the Dietician coming to see me on a regular basis the booklets and information on the correct food was extremely good. Oh and the Vampire, does anyone remember her, she came around every morning to take blood from you. I suppose it was to check your vitamin levels.....
My 13 day stay in Hospital
As you all know the Consultant and/or his Registrar and team come round to see you every day. On one of these occasions they realised that my wound/ incision was infected, I also had a chest infection and this Oral thrush. So not allowed home until I was fully on the mend and a District Nurse had been organised to visit me to change my dressings.
This leads me on to my next point.
Don’t fib about how you feel after Op
The guy in the next bed to me obviously always said to the team each day that he felt great, no problems, always walked further than I could but when he was back in bed, to me he looked bright red in the face and panting with breath. He said he was told he was a text book patient and released from hospital after 7 days. I felt I was more interesting to the teams because of all my problems and side effects.