"Cancer diagnosis & follow up care."

My dad had attended his GP practice numerous times between January & October 2019. Despite being in excruciating pain, suffering breathlessness & loss of voice he was dismissed. In fact the GP deciding all his symptoms were down to constipation sent home home with laxatives. This went on for months back & forward always being pawned off. It wasn’t until I begged the GP to refer him for a CT scan he got referred to the ENT department at FVRH.

We met with a doctor who performed a nasendoscopy to try & find the cause of my dads hoarse voice. They told us the left vocal cord was paralysed but offered no explanation as to the cause or possible causes. They told us they would be sending my dad for CT scan and would see him at a follow up appointment to discuss the findings. 

Approx 2 weeks later after the initial consult and after the CT scan had been done I received a call from the ENT department asking if we could attend an appointment in 2 days time. I asked if we should be concerned about anything & was told no it was merely a appointment had became available. 

We attended this appointment. Entered the Dr's room who performed the nasendoscopy & a nurse was present. the doctor was facing their computer looking up an email that contained my dads results. They turned in their chair looked at my dad & said “I’m sorry you have lung cancer I can’t tell you anymore than that as I am a ENT doctor not a respiratory doctor”. Obviously the shock of hearing this news was shattering made 100 times worse by the lack of empathy & seemingly lack of knowledge. Despite a million questions this doctor was unable to answer any and seemed genuinely disinterested. They said they had referred my dad to the Respiratory doctor but had no idea how long this would take until a appointment was available. The nurse who was in the room was the only person so far to show any concern for my dad & I. They offered us a room to sit in which I politely declined. 

Walking out that hospital I felt like my full world had imploded I can’t even begin to imagine how my dad felt. I called the hospital the next day to ask when we were likely to receive an appointment with the respiratory  doctor & was told almost 3 weeks later. This is absolutely ridiculous giving someone news that they have cancer but no further information then expecting them to wait almost 3 weeks for an appointment. I managed to get hold of the doctor's medical secretary who was lovely I explained what had been happening and they managed to fit us into a clinic that week.

We met with a doctor who was rather taken aback that the ENT doctor had gave us the diagnosis. This doctor explained my dads cancer was advanced. Primarily left lung with mets to the right lung & temporal bone. They explained although curative treatment wouldn’t be possible palliative treatment would. My dad asked how long was told 6-12 months. They said my dad would be discussed at an upcoming MDT meeting & they would be in touch.

The MDT meeting was supposed to be taking place the following week. The doctor also said my dad had a PE on his lung which when writing to the GP would be included in the letter. A biopsy was scheduled for the end of the month. My dad didn’t get discussed for another week. In this time we had no contact from anyone. Even after the MDT i was having to constantly phone to find out what was happening.

This is where the lung cancer specialist nurse who remember has never met my dad comes in. I managed to get them on the phone the following week & they explained yes my dad was discussed at the meeting it was decided he wasn’t for any treatment and that was that. Only when I continually questioned what was going on they decided it would probs be best to meet my dad & I. We went to see this specialist nurse the following week, they offered no new information but did arrange for us to meet with the oncologist. You know the person who when facing a cancer diagnosis you should meet. 

We met with them two weeks later. They explained my dads cancer was much more advanced than the last doctor had told us and acknowledged the care my dad had received was less than great. 

Later that week my dad took a ischemic stroke, his GP had stopped his blood pressure tablets 3 days previous. After attending A&E I took him home. Where I stayed with him until three weeks later when he took his last breath. 

There is so much more to this story, so many more failings, so many more missed opportunities, so many more muck ups by all involved in my dads care. 

Eight weeks is all I got from him being diagnosed till he passed. Words in this email will never be able to describe what this full journey really felt like but there has to be lessons learned.