Hi everyone - first time posting - apologies for long post
During the last 14 weeks we have been on the rollercoaster from hell!
At the end of August we both had Covid, I recovered quickly but my husband continued to cough, became increasingly breathless and lost his appetite. As he had an existing lung condition (brochiectasis) we believed this was just a flare up related to this. After several telephone consultations with GP, who was convinced it was long Covid, he suddenly had a fast heartbeat and high blood pressure and was referred to the hospital ambulatory care unit for assessment for potential pulmonary embolism. That was ruled out thankfully, and the attention shifted to his lung problems and he was referred for a chest CT. Whilst he waited for the CT appointment he was still suffering with breathlessness and extreme fatigue and had no appetite or if he did eat he suffered with difficulty swallowing, choking and heartburn/acid reflux. His weight loss became very evident but the GPs seemed unconcerned and prescribed Gaviscon and an additional dose of omeprazole. Eventually the doctor agreed to refer him for a colonoscopy (which he attended but it didn’t take place because the gastrologist felt his breathing issues were too severe). As his initial symptoms became increasingly serious he began to experience pain under his armpit and across his chest which prompted another telephone consultation and his first face to face appointment with a GP. He was then referred for a gastroscopy. He had his chest CT on 10 November and he was asked to return to the hospital for results on 14 November - this is when the rollercoaster picked up speed and was heading downhill! His lungs were fine with no additional scarring but the CT scan had picked up an image of the top of his liver which indicated what was thought to be lesions. He was sent for an abdominal CT immediately. His gastroscopy appointment came for the 24 November and he attended and had that done and we were told the gastroenterologist needed to speak to us before we left. They had discovered oesophageal cancer and had taken biopsies to go to histology, they could also access the abdominal CT results and found metastasis on liver. Despite my making several calls to the GP expressing my concern about my husband’s increasing weight loss (17kg since August) and the fact he was only able to sip water or manage a few teaspoons of ice cream there only advice was to call either 111 or 999 - the earliest appointment they could make was for 13 December! On the 27 November he was admitted to hospital following a telephone conversation with the dietitian regarding his weight loss and obvious signs of wasting seen by the gastroenterologist. He had a nasogastric feeding tube fitted endoscopically. Monday 4 December we were formally advised he has advanced oesophageal cancer which has spread to his liver. His only treatment will be palliative chemotherapy which cannot begin until he has regained some weight and has the strength to cope with the treatment. I apologise for the length of this post - I felt I needed to get this out of my head. We are currently tiptoeing around each other neither of us wanting to upset this other but hopefully this stage will pass and talking will get easier. I would appreciate information from anyone who has been through this and how things progressed. I think they intend to discharge him to continue the tube feeding and gain weight - if things were this straightforward I wouldn’t find this so worrying but taking into consideration the issues with balancing his food intake, administration of an increasing number of medications, managing his diabetes etc as well as supporting him physically and mentally (very grumpy patient) seems overwhelming for me to process at the moment. I want the man I married 47 years ago back - I can’t believe this has all happened within a few months - stop the rollercoaster we want to get off.
