Good Evening,
I posted in September, following my stage 4 (T3 N2 M1) diagnosis of Oesophageal Cancer. It's spread to various places. Lungs, Liver, Nodes, Pelvis etc and originates from the Junction. I've started treatment and am currently on my second cycle. I have a few things I'd like to ask to see if people are in the same boat or have any good advice or hopefully 'glimmer' stories of success.
My chemotherapy is intravenous Cisplatin every 3 weeks and daily 2600mg of Capecitabine. This is ongoing for 8 cycles or about 6 months. In addition I have an intravenous Trastuzumab infusion at the same time as the Cisplatin and from my 3rd cycle onwards, at my own expense but NHS recommendation, will be starting Pembrolizumab as well. I think it's like HCX plus or something. Lost on me except that it's a heavy set of symptoms and side effects which follow and I wondered if anyone else is on similar treatment? I'm currently experiencing the below primarily, but also general nausea, lethargy, stomach upset, disturbed sleep, low moods and plenty of other gems beside.
The main issue I'm having is swallowing. I'm finding keeping food and drink down tough and this seems to be both because it's hard to swallow and my throat seems awash with additional lubrication (basically like baby sick) which has nowhere to go but up. Nice. so it's not the food so much as the Ick. I've got a Barium Swallow booked and may be advised stents. Has anyone had them fitted? Are they helpful or debilitating? I was seeking to avoid this in the hope that the treatment would kick in, but if needs be I'll do it. I'm a food guy and love cooking and eating different foods and this aspect of it all is getting me down. My dietician is fine but basically requesting I eat mashed up puree like a vast baby is a knock to my confidence.
Also, finally. I know my realistic outlook. I also know there are hope stories and people who make it beyond a year, sometimes to 2, 3, 5 or more years. I want to be in that number! But I also have managed my expectations. I do feel that, wading through the insurances and pensions, the sympathetic people, the 'helpful' phrases like 'you have to have hope. what else is there', the apparent need for every document to confirm you'll be gone in a few months and the fact that people all behave so differently around me, really starts to mess with my confidence and my attitude which is basically, keep going and keep moving forward until you have to stop. Does anyone else feel that the general world around them, especially people you don't know and the impersonal side of things, becomes a blocker to aiming high. I don't want to 'exist' and I don't want to 'survive', I just want to live. I'm craving people who feel the same. The media is awash with sympathy and platitudes, but that doesn't reflect how I feel and always seems dictated by people who have watched it rather than lived it. I'm not a 'warrior' and I'm not 'brave', I don't have much of a choice, I'm just a normal man, in a horrible situation, with a dark diagnosis, who wants to live longer for my four children, my beautiful wife and frankly, myself.
Sorry for the ramble.
Alex
