Bad Day

Friday 27th.December
For some reason in the evening I had a very sore stomach, well I assume it was my stomach but it could have been the tumour, they are both in the same area. Did not have a very good night's sleep so decided on Saturday that I was not taking any more capecitabine tablets. Had quite an uncomfortable day and in the afternoon I was sick for the first time. So with any sickness event I was told to phone up the emergency help line , which I did but not a lot of help. I was told to drink plenty of water which I knew anyway and  keep taking the metoclopramide. I was also told to get some lapormide over the counter for the sickness but these turned out to be diarrhoea tablets so I didn't bother with that. Took a metoclopramide in the evening and threw that up very quickly. Had a bit of a temperature but not up to 38degC. Hardly ate anything all day but had a reasonable night's sleep. Feeling better today but still have stomach ache.

Oncologist

Tuesday 24th.December
Went to see my oncologist for a general appointment prior to he next chemo session. Mentioned to him that I had a lot of discomfort in the stomach area so now I have a pile of Buscopan pills to take if I need them. Not sure if they work very well though. Mentioned that I was finding it a bit easier to eat now after the first chemo and was told that is quite normal after the first session.....hope it continues. Gradually working my way through the side effects of this treatment.

Day 12

Well this is interesting, the fog seems to be lifting and I feel a lot better, even though I am still taking the full dose of Capecitabine. Been out for a long walk today and also had my first cup of coffee since starting the treatment.

Effects of Capecitabine

As of the 17th.December I am back on Capecitabine (Xeloda) after laying off for a few days to allow my stomach pains to subside. Found that the only way to take this stuff was to take a nausea pill before eating and then the  Capecitabine half an hour after the food.  Capecitabine is a type of chemotherapy called an anti-metabolite. The body changes  Capecitabine into a common chemotherapy drug called fluorouracil. It stops cells making and repairing DNA. Cancer cells need to make and repair DNA so they can grow and multiply. It is actually used for breast and colon cancer, neither of which I have? The dosage is calculated on body surface area so because of my height I get a generous deal.
As with any prescription medication you always get a list of possible side effects but with this stuff the list is ENORMOUS. Any thing is possible. The ones I get are nausea, stomach upsets, tiredness, weakness, back and chest pain, headache, skin darkening, slight tingling in my hands, a little cold at times, a cough, a little weight loss, loads of wind, a gurgling stomach, burning urination and decreased urine volumes.....only 7 weeks to go!

First Chemo Session

Clocked into the oncology suite at 10.15 on the 9th.December and finally got out at 4.30pm, quite a long day. A canula was inserted in the middle of my forearm and lots of sticky tape to hold it in place. Didn't expect that since when it was taken out it pulled all the hairs on my arm, an arm wax if you like and it was excruciating....next visit I will be shaving my arms.
Firstly I got red epirubicin injected ( I was peeing red for a while afterwards) then a big bag of oxiliplatin was infused over the next few hours. Felt a bit tired and disorientated after the treatment and came away with a bag load of pills as follows:-
capecitabine, 1300mg twice a day
Sickness/nausea pills
Blood thinners injection
Diarrhoea pills
Steroids
That night I took the first dose of capecitabine, trouble was my stomach area felt quite sore and painful, very uncomfortable and not much sleep that night. Had to take the nausea pills. Some evidence if numbed lips when drinking or eating anything cold. No tingling in the fingers.
Next day still had the very uncomfortable stomach ache, quite unpleasant. Tried some breakfast but taste was quite odd, metallic. Didn't fancy much food at all which is not surprising given all the stomach pain. After a couple of days of this stomach area pain, I stopped taking the capecitabine and told the hospital. They advised to lay off a few days. It is a lot better now but not perfect, I am very tired. Waiting for the hospital to give further directions.

Demystifying

On the 28th.November had a session at the McMillan Centre entitled 'Demystifying Chemotherapy'. This was given by a couple of oncology nurses and was an overview of what to expect during the chemotherapy treatment. This was very general, advise on what not to eat,  contamination precautions etc. It did not cover my type of cancer or the torrid side effects  as I found out later. On the 5th.December I had my last session with the oncologist who conducted a fitness test on me. Seeing as I was lopping trees the day before that was not a problem. I was passed 'fit' for chemo.

Chemotherapy

Well the trial I was eligible for was the neo-AEGIS trial, either standard Chemo of a less severe Chemo with Radiotherapy. This was a randomised trial and I drew the standard Chemotherapy known as EOX. This entails 3 sessions of Chemo before the operation and 3 sessions afterwards. This seems a bit much considering with the Radiotherapy trial there was no further treatment after surgery. The idea of course is to shrink the cancer prior to surgery, and also to deal with any mastites that might be lurking around the body, by giving a mixture of 3 types of poison, Epirubicin and Oxaliplatin intravenously  every 3 weeks and Capecitabine tablets twice a day every day. Sounds grim. Apparently if the cancer doesn't shrink they will still operate anyway. My cancer staging is 3,0,0 it is localised so I asked the logical question why not operate now and do the Chemo afterwards. Unfortunately the system is the system and it will not be moved!

Oncologist

On the 12th.March I had my first appointment with an Oncologist. It seems I am eligible for a randomised trial in adenocarcinoma of the oesophagus and oesophago-gastric junction, either neo-adjuvant/.adjuvant chemotherapy or neo-adjuvant chemo radiation prior to surgery. Alternatively, I could have the standard chemo treatment. There are many factors to consider and I have a lot of questions for my next oncology visit. In the meantime I have had a lung function test and a heart ultrasound.

Eating and Food

Since my first experience with difficulties swallowing, it has gradually become worse, probably I suspect because the tumour is growing. Consequently I have to be very careful what I eat and how I eat it. Previous eating habits no longer apply. Everything has to be chewed very carefully so that there are no lumps before swallowing and mouthfuls have to be a lot smaller. As a result, it now takes twice as long to eat a meal and is generally cold by the time I get to the last bits. Food texture is very important, all meat is out (apart from thin cut ham) as are most breads and crusts. Fish, porridge, yogurt, jelly  and ice-cream are fine as are all green vegetables and salads.. Things I have had difficulty with are prawns, scrambled eggs and occasionally pasta. Any food which crumbles easily is OK in small mouthfuls such as digestive biscuits and surprisingly Crunchy Nut Cornflakes. I am still experimenting carefully.

Post-Laparoscopy

The next few days after the surgery all the bruises came out. At first I thought that the incision wounds were bleeding as my stomach had so many dark red/maroon areas. Eventually  in the course of the next few days my stomach was all colours of the rainbow. The suspect area(s) found during the surgery turned out to be benign.....great relief. Initially my stomach was a bit bloated and tender but I managed on paracetamol only for the pain. I was given co-codamol tablets when discharged but they were quite large and I doubted whether I could swallow them so left them alone. After a couple of weeks the stomach was more or less back to normal.

Laparoscopy

On the 4th. November I had the laparoscopy at QA. One thing that I was getting used to was all the form filling and there is plenty of it from all the different medical staff responsibilities. So for the pre-op, plenty of health questions, weight, height and BP,  and a re-run of the ECG as the office staff had lost the previous one. I walked to the theatre when they were ready and I guess I was out for about 2 hours when I woke up in recovery. looked after by an excellent nurse, he gave me a s much pain killer as I needed but I had a very sore throat, could hardly talk, a result of the breathing tube they had shoved down my throat plus an endoscopy additional to the keyhole work. They did  attempt an ultrasound scan with a special endoscope but the gap in the esophagus was not wide enough since the cancer had closed it up too much. Subsequently I was wheeled to the discharge area. I had been given some saline solution in theatre which made me feel as if I wanted to urinate constantly bu according to the nurses was not unusual. I had to wait a while to be discharged and eventually a theatre clinician came to talk to me. She said they had found some peritoneal lesions and taken biopsies. I was not exactly with it after the operation and there was no-one with me so I just accepted it at the time but it did worry me somewhat afterwards as to what they had found.

Scan Results

On the 31st October I met with the surgeon, a Mr Carter. There is a team of 4 operating in the upper GI area at QA Hospital Portsmouth so it could be any one of the 4 who would conduct my operation. However before that could be done there would be a laparoscopy, a keyhole examination of the stomach area in 3 places to explore inside.. The PET scan did not show any other organs involved but there was a small spot on one lung which could be residual from smoking which I gave up many years ago. The surgeon was outlooking surgery for February next year. Completed visit with bloods and an ECG.

The PET scan

On the 29th.October I had a PET scan, the first of the preliminary investigations. This was at QA Portsmouth since Chichester did not have this type of scanner. This involved the injection of a radioactive tracer with a very short half half but nevertheless I was technically 'radioactive' for the next 24 hours, with instructions to avoid close conact with children. The cancer apparently shows up as red dots so is quite a sensitive test for the whole of the stomach area. The radioactive tracer is made up in London and has to be delivered to QA on a daily basis but was late which meant quite a bit of hanging about plus a further hour or so to let it circulate, all adding to the prior 6 hour no food requirement. The nurse fitting the canula had 3 attempt, left elbow, left hand and finally the right elbow. Bit of residual bruising after the failed attempts. The scan itself took 20 minutes or so which I had to lie still. It was not claustrophobic at all.

The CT scan

On 16th.October, had a CT scan with tracer at Chichester. This was quite straightforward but did involve no food for the preceding 6 hours. On the 22nd October I had a meeting with a consultant and also met my case nurse Adrienne. The presence of an esophageal cancer was confirmed, about 4 cm in length situated at the base of the oesophagus just before the stomach. No other organs seemed to be involved  and the cancer was considered to be operable. However, further tests were required before chemotherapy and surgery.

The gastroscopy

On the 5th October 2019, I had a gastroscopy, an endoscopic examination of my oesophagus. Not that pleasant but was OK, could have been worse. An antiseptic spray numbs the throat a bit so you can't feel the tube going down. Biopsies were taken during the procedure so I realised that something had been found. the only problem I had was with the release of all the air pumped into my stomach, it was painful trying to sit up afterwards until I had burped it all up. In the subsequent wrap-up with the doctor, they wouldn't commit but it was pretty obvious that something was in my oesophagus that should not have been there.

The beginning

In August 2019 my first symptom was difficulty in swallowing food at the start of the meal accompanied by a succession of hiccups. The rest of the meal was OK. The problem returned randomly when eating other meals, the problem seemed to be meat, beef, pork and gammon and in the early days I soon learned to chew very well before swallowing. However, something clearly was not right so I saw a Dr.Lewis at our local surgery who prescribed Omeprazole which is the standard first off medicine for acid reflux and he said if it didn't clear up he could double the dose. Well it didn't so I then saw my own doctor, Dr.Pullen, on the 13th September. He arranged for a gastroscopy. From my patient notes, based on my symptoms, I later learned he suspected an upper GI cancer.