amandamc8
Earning My Ears
- Joined
- Apr 8, 2008
Please forgive my long rant, but theres a lot to get off my chest
At the end of March my lovely husband, 40-year-old Miles, blacked out following a coughing fit. We went to see his GP who checked him over and says that all is well, and that the cough was just a winter thing even though he hadnt even had a cold. The GP referred him to neurologist, and on May 18th we see as specialist who says that the passing out is due to cough syncope and that Miles needs to return to the GP to get his cough sorted. So, we go back to the GP, who diagnoses hiatus hernia, as miles is now also having indigestion pain and has lost weight, and he says that this is also causing the cough. He prescribes antacid meds and sends Miles for a chest x-ray for peace of mind.
Later the following week, Miles returned to his GP as his abdominal pain was getting worse. The GP is unconcerned about his pain, but tells us that the chest x-ray results are back and that they show signs of pulmonary fibrosis. Miles stomach problems are now diagnosed as acid reflux, which is common amongst people with PF, and also that this is why he has lost weight. The GP sends him for a CT scan. It takes 3 weeks to get the CT appointment (the hospital did not receive the request from the GP), and meanwhile, miles returned to his GP 3 times as his stomach pain was getting worse.
The CT took place on July 7th and on July 10th we were called to the respiratory dept as the scan showed traumatic scarring. Miles is told about the treatment for pulmonary fibrosis and referred to a thoracic surgeon for a lung biopsy to find the cause of the fibrosis. Meanwhile, Miles continues to see his GP with increasing abdominal pain and weight loss. We asked 2 GPs and the respiratory specialist if the pain could be to do with his pancreas, but were dismissed each time even though the specialist said that the CT scan showed some pancreatic atrophy.
Miles biopsy took place on July 25th, and on August 5th we are told completely out of the blue that they had found a tumour in his lungs that had proved to be cancerous. We are told that surgery isnt an option as the damage is spread across both lungs, but that oncology would be in touch to discuss chemotherapy. We waited for another week and returned to see the same consultant who then told us that the lungs were not the primary site of the cancer, and that another CT scan was needed to try and establish the area of the primary. On August 19th we were told that the scan had shown a 2.4cm mass in Miles pancreas and that a MDT meeting was taking place the next day to discuss a course of action.
On Thursday 20th August I received a phone call from a nurse specialist telling me that Miles has pancreatic cancer, and that it has already spread to his lungs, stomach and peritoneal cavity and that there is nothing at all that can be done. Our Macmillan nurse came to see us the next day and explained that Miles is not fit enough to try chemotherapy, and broke the news that Miles hasnt got long left, and that we shoulb be thinking in terms of weeks not months.
Its all happened so suddenly, and we are really struggling to take it all in. I just dont know where to start. Our daughter is 16 in November and I am 40 in January, only a few weeks ago we were busy trying do decide how to celebrate, now it seems highly unlikely that Miles will see either of them. Miles has never smoked, rarely drinks alcohol and has been very fit and active all his life. He was still working in mid-July, how can everything change so suddenly? I know that I need to stay strong for our daughter, but I dont know where to find that strength from.
At the end of March my lovely husband, 40-year-old Miles, blacked out following a coughing fit. We went to see his GP who checked him over and says that all is well, and that the cough was just a winter thing even though he hadnt even had a cold. The GP referred him to neurologist, and on May 18th we see as specialist who says that the passing out is due to cough syncope and that Miles needs to return to the GP to get his cough sorted. So, we go back to the GP, who diagnoses hiatus hernia, as miles is now also having indigestion pain and has lost weight, and he says that this is also causing the cough. He prescribes antacid meds and sends Miles for a chest x-ray for peace of mind.
Later the following week, Miles returned to his GP as his abdominal pain was getting worse. The GP is unconcerned about his pain, but tells us that the chest x-ray results are back and that they show signs of pulmonary fibrosis. Miles stomach problems are now diagnosed as acid reflux, which is common amongst people with PF, and also that this is why he has lost weight. The GP sends him for a CT scan. It takes 3 weeks to get the CT appointment (the hospital did not receive the request from the GP), and meanwhile, miles returned to his GP 3 times as his stomach pain was getting worse.
The CT took place on July 7th and on July 10th we were called to the respiratory dept as the scan showed traumatic scarring. Miles is told about the treatment for pulmonary fibrosis and referred to a thoracic surgeon for a lung biopsy to find the cause of the fibrosis. Meanwhile, Miles continues to see his GP with increasing abdominal pain and weight loss. We asked 2 GPs and the respiratory specialist if the pain could be to do with his pancreas, but were dismissed each time even though the specialist said that the CT scan showed some pancreatic atrophy.
Miles biopsy took place on July 25th, and on August 5th we are told completely out of the blue that they had found a tumour in his lungs that had proved to be cancerous. We are told that surgery isnt an option as the damage is spread across both lungs, but that oncology would be in touch to discuss chemotherapy. We waited for another week and returned to see the same consultant who then told us that the lungs were not the primary site of the cancer, and that another CT scan was needed to try and establish the area of the primary. On August 19th we were told that the scan had shown a 2.4cm mass in Miles pancreas and that a MDT meeting was taking place the next day to discuss a course of action.
On Thursday 20th August I received a phone call from a nurse specialist telling me that Miles has pancreatic cancer, and that it has already spread to his lungs, stomach and peritoneal cavity and that there is nothing at all that can be done. Our Macmillan nurse came to see us the next day and explained that Miles is not fit enough to try chemotherapy, and broke the news that Miles hasnt got long left, and that we shoulb be thinking in terms of weeks not months.
Its all happened so suddenly, and we are really struggling to take it all in. I just dont know where to start. Our daughter is 16 in November and I am 40 in January, only a few weeks ago we were busy trying do decide how to celebrate, now it seems highly unlikely that Miles will see either of them. Miles has never smoked, rarely drinks alcohol and has been very fit and active all his life. He was still working in mid-July, how can everything change so suddenly? I know that I need to stay strong for our daughter, but I dont know where to find that strength from.
I am so sorry. God Bless you all.
