Hi, I just joined a few days ago so I thought I'd pop by and say hello.
Back in August/September 2023 I started to experience problems swallowing food. It wasn't every time I ate food but it was a good few times a week. As time went on the problem gradually got worse so I made an appointment to see my Doctor. After a good chat with the doc he told me he was quite concerned for me and said he would get me into hospital asap for tests. Less than a week later I had a CT scan and the following week I went for an endoscopy down the throat. As I was coming around after the sedation I'd had the nurse told me that the doctor wanted to speak to me did I have some one with me. As soon as I was told that I kinda knew the news wasn't going to be great.
The camera revieled that I had a 5cm mass in my oesophagus and everything indicated it was cancer. A week later the cancer was confirmed and I stated my FLOT chemo 30th November 2023. The FLOT is brutal but it worked well and my eating and swallowing soon improved. I finished the FLOT in January 2024 and went for a CT scan. A week or so later I saw my oncologist who confirmed that the tumour had indeed shrunk and that I'd probably wait no longer than 6 weeks for my oesophagectomy.
So I waited for surgery, and I waited and waited a bit more. In fact I waited so long the tumour started to grow again and at 8 weeks of waiting it had grown so large I could no longer eat or drink anything. I then got a letter from hospital advising me my surgery date, it was 13 weeks after I'd seen my oncologist. Not good.
In the meantime because I couldn't eat or drink I was admitted into hospital to have a feeding tube inserted up my nose and down to my lower intestine. So I was sent home with a feeding pump to wait just over 4 weeks till my surgery date. 4 days before surgery, Friday 19th April I had a coughing fit and coughed the tube up so it was back to hospital and the tube was removed. To be honest it was a relief as the tube was nothing but a pain in the butt. Because it was only 4 days before my surgery date I was admitted into hospital and put on an intravenous drip to help keep me hydrated. Finally surgery day arrived, 23rd April and everything went according to plan and I woke up post recovery before being moved onto ITU. I spent 3 days there before being moved onto an Upper GI ward at James Cook University Hospital in Middlesbrough. 3 weeks later I was discharged and sent home.
An oesophagectomy is a massive operation as many of you will know and recovery is a slow process but I started to make a little headway. My mother passed away 2 months and 3 days after surgery, I got COVID. I think I picked it up at the funeral and I was back on my "mop up" FLOT chemo as well. I received from COVID but about the start of August last year I started to become unwell. I just thought it was the FLOT knocking me sideways and tried my best to ride it out. Then one morning I woke up and my left leg was in agony around the thigh area. I couldn't walk on it and trying to get up and down the stairs was an absolute nightmare. I struggled on for another week or two but finally admitted that I needed to be in hospital so on August 26th I was taken in via ambulance.
After various tests and scans I was told I had Staphylococcus, an infection if left untreated could very easily turn into Sepsis. The infection had started in the Hickman Line inserted into my chest and had spread to my leg. My weight had plummeted and I was down to 11 stone from 13½. I was put onto antibiotics intravenously plus another drip containing fluids and so on to help build me up. I spent just shy of 3 weeks in hospital and was finally discharged on my birthday, 13th Sept. The nurses bought me a card and a cake which was really nice of them.
2 weeks later I was back at hospital as an outpatient to see my oncologist. I was due to start radiotherapy but he thought that I was not well enough. He told me that the radiotherapy so soon after the infection would more than likely make me ill again and put me back in hospital. I really didn't fancy that after spending 7 weeks in hospital in total that year. So we decided to wait 3 months while I regained some strength. I was planned in to have a CT scan end of November but there was a strong chance my cancer could return because when I had my surgery 30 lymph nodes were removed and 17 tested positive for cancer. All the scans I'd had while in hospital with the infection showed I was still cancer free so I was feeling quietly confident. The scan was duly done and I got the results 30th December and they were not what we hoped for. The cancer had returned. I had infected lymph node under my collar bone and next to my windpipe. I was also told the cancer could not be cured but only treat with chemo. What was the shocker tho was when I was told I had probably between 14 months and 2 years to live. That was a right kick in the teeth.
After a few days feeling totally numb I decided to give my self a kick up the arse. I thought to myself, it is what it is, it's shite but there's not much I could do about it. I been dealt a crap hand but now I had to make the most of life with the cards I had.
Now before I was ill I was a very keen cyclist. I'd think nothing of going out on day long rides with friends, 50, 60, 70 miles and so on. I was flicking through Facebook and saw an advert for the Cancer Research cycle 200 miles throughout the month of March and thought is sign up for it. Well, to cut a long story short I did my 200 miles and raised a fantastic £3061 for cancer research. I was totally buzzing. I was also back on chemo which made the feat even more amazing as after chemo I was normally useless for a week or so afterwards.
I was back at hospital for another scan early April and got the results a few weeks later. Not good news. The chemo I was on wasn't working and the cancer was spreading. A change of treatment was organised and I've just finished that 3 month course. I had a scan just this week and I get the results next week, 13th August.
I don't think the results are going to be good. The fatigue I have is worse and I'm not as well as I was 3 or 4 months ago. I'm losing my appetite and in the last couple of weeks I've started to have some problems swallowing again. I've also got a very chesty cough and I keep having to clear my throat. I feel like I'm coughing up a thick mucus that is blocking my throat and airway. I find it difficult to burp and when I do cough my lung and ribs ache like hell and last night I started to cough up blood. Of course this will all be mentioned when I see me oncologist but I don't think the signs are good. It's also just starting to affect my mental health. It's hard work trying to stay positive when you feel poorly.
So that's my little story and I'm sure many of you can relate to many of the things I've said. I'm 58 now, 59 next month but I'm starting to wonder if I'll see my 60th.
Thanks for taking the time to read and I wish you all well
Tony xxx
