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Executive summary: Les is not at all well, details follow.
OOOOOOOKAAAAAAYYYYYY. Unicorns, regular readers and other mythical beings might well have been wondering why it’s gone so quiet around here, and perhaps wondered why I stopped posting the daily weight reports, especially as I seemed to be doing so well…
Well, yes, I have been losing weight, but err, not really in a good way.
Earlier this year, I started having a bit of a problem when eating. I’d chew and swallow as normal, but every so often things seemed to get stuck on the way down, and would quite rapidly reappear, which wasn’t nice. I even had the occasional problem with coffee coming back at me.
At first, it was an occasional annoyance, so, being a male of the species, I put it to the back of my mind. But it gradually became more and more frequent, to the point where the only way I could eat at all was to do it verrrrryy sloowwwly. Then, at the end of March, I had a deeply worrying bout where I couldn’t swallow anything. Water, saliva, all came back. This only lasted for a short time, but it was deeply unpleasant and more than enough to convince me that I needed to get some medical investigation done.
I tried to get a GP appointment, but there wasn’t anything available until the following week, so I took drastic action: the following morning, Wednesday 28 March, I went to the NHS walk-in centre at the Queen Elizabeth Hospital (aka the QE) in Gateshead. After a moderate with, I was seen by a GP, who asked lists of questions, examined me then advised me that while my symptoms could have many causes, there was a small chance of the cause being cancer. This meant that I’d be put on an urgent referral plan to have things investigated. Now the way things work meant that my own GP would have to do the referral, so the walk-in GP arranged an emergency appointment for the next day.
So, on Thursday 29 March, I left work early to go to my GP, where I was seen by a doctor I hadn’t met before, who was very friendly and reassuring. She was happy that the hospital had done all the work for her, so all she had to do was sign off a few things and start the process. The receptionist did the booking, which turned out to be a phone appointment for the following week (the long Easter weekend kinda got in the way). And on Wednesday 4 April, I worked from home in the morning before calling the hospital and giving them my mobile number so they could call me back.
And so they did, very shortly afterwards, with an appointment booked for the following week – Wednesday 11 April – for an endoscopy examination at the QE.
And so, I declined to got to work on the morning of 11 April on the grounds that I’d have been tenser than a very tense thing that’s feeling a bit under pressure. I got to the hospital in plenty of time for my 14:15 appointment, and after all the usual form filling was taken in for the procedure. You get a choice for this – you can either be sedated, in which case you need a responsible adult to take you home and watch you, or you can have a throat-numbing spray. Not really wanting to disturb any responsible adults at this point, I opted for the spray.
What followed was, well, let’s say uncomfortable. Not painful, but distinctly unpleasant. Swallowing a long tube isn’t most people’s idea of fun. What was also not very pleasant was hearing people say things like “can’t get past it” and “taking samples”. After what seemed like a long time, but probably wasn’t, the tube was removed and I was able to sit up and take notice. The doctor in charge told me that what they’d found was, and I quote, “a big worry”, which is not the kind of thing you ever want to hear from a medical professional. They gave me a copy of the report which showed a very nasty looking thing blocking most of my oesophagus, which accounted for the swallowing issues I’d been having. I was told that it looked very much like it was cancer. Well, it certainly didn’t look friendly (and no, I’m not including the picture, it’s icky). While the samples were sent off to the lab, I was booked in for a CT scan, given some liquid food thingies (high power drinks somewhere between yoghurt and milkshake consistency) and generally patted on the head.
The CT scan was the next day, Thursday 12 April, also at the QE. This was a less unpleasant process, where the only discomfort involved being injected with some stuff and having to wear a silly gown (though they gave me two, one to go on in the usual backwards way, and one to go over it the other way around to avoid leaving my bum hanging out and getting cold). After that, I went home and took the executive decision not to go to work for what was left of the week.
I was booked in to see the consultant the following week, on Wednesday 18 April. I told work that I needed some time, and had no trouble with that.
So, on Wednesday 18 April, I returned to the QE to find out what was what. And what was indeed what. I was told that I have cancer of the oesophagus, and that I’d now be referred to the specialist unit at the Royal Victoria Infirmary (aka the RVI) in Newcastle. I was also booked in for a PET scan at the Freeman Hospital (err, no abbreviation other than “the Freeman”). I was told they’d call me with an appointment for that, which they did – quite rapidly, too.
And so on Monday 23 April, I headed into unknown territory and got a bus from central Newcastle direct to the Freeman, where after a short wait, I was led out to the mobile unit containing the PET scanner. I was injected with some marker substance, then had to wait an hour for that to work around my body before being fed to the Total Perspective Vortex, err, put in the scanner. That chugged along and did its thing, and I was then told to go home, which I did.
The next day, Tuesday 24 April, I had my first meeting with the specialists at the RVI – I met my assigned nurse specialist, then had some more tests – an ECG to make sure my heart was working (it was normal, apparently), and a “fitness test”, which involved a shouty guy making me work hard on an exercise bike (legs… hurt, etc). Not unexpectedly, I wasn’t all that fit, and was advised to get out and walk some more.
Also spoke to a dietician, who told me to keep on with the Fortisip (the liquid gunk) and gave some suggestions about using a blender to make things edible for me.
Just a couple of days later on Thursday 26 April, I was back in the RVI for another endoscopy – this time with a thinner probe and added ultrasound to give a clearer impression of what’s going on. As this is a much longer process than the standard on I’d had previously, this has to be done under sedation, and I had the option of finding a responsible adult or staying overnight. I opted for the overnight stay, which worked well, as they’d have the results of the various scans in time for their weekly meeting on Friday morning, and could talk to me on the Friday afternoon.
I’ve never had sedation before, so it was an…interesting… experience. I was vaguely aware of the process happening, but didn’t really feel anything. Afterwards, I was taken back to the day unit and sat quietly, dozing off a bit occasionally before being found a bed for the night. This ended up being a nice private room, so that was quite nice. And I think I must have had my blood pressure taken (it was OK, apparently) more times between Thursday and Friday than I have in the last twenty years.
Anyway, fully recovered from being sedated, I saw the nurse specialist and consultant that afternoon. They explained the usual treatment for my condition: a course of chemotherapy followed by major surgery.
OK, I’ve always thought that the definition of a “minor operation” was one that happens to someone else, but this is major. It involves removing most of the oesophagus and reforming the stomach to join up to the bit that’s left. Two large incisions (at least), a week or two in hospital and a long recovery period. As I’ve never had any kind of surgery at all up to now, this was more than a little disturbing to contemplate…
But, and isn’t there always a but? The PET scan had shown something suspicious – a “hot spot” showing on one of my ribs. Now this could be significant, could be a false positive, or could be nothing at all, so before any decision could be made on treatment, I’d have to have a biopsy taken. An appointment for that was to be arranged.
The following week, on Monday 30 April, it was time for another test – this time, to see if my kidneys were working properly. This involved being injected with some radioactive dye, then waiting an hour before having some blood extracted. Then waiting another hour to have some more blood extracted. Then waiting another hour to have some more blood extracted. Then waiting another hour to have some more blood extracted. Yes, four lots of blood. Apparently the amount of the stuff in my blood should decay over time, which allows some fancy software to give an indication of how well my kidneys operate.
After that, I called in at my GP surgery to book an appointment for later in the week.
And so on Thursday 3 May, I saw my GP to get officially signed off on the sick, and send the documents to the HR manager at work.
Then on Tuesday 8 May came my next visit to the RVI – in the X-Ray department. First, a doctor used an ultrasound scanner to have a good look at my chest, which confirmed that there was indeed something there. I then had to sign a consent form to allow the biopsy to be done. I was given a local anaesthetic, then the needle went in, followed by some pushing and prodding, which was uncomfortable. Then it was followed by some sharp pain (it felt like the probe was going to come of of my side at one point, though this was definitely not the case). Samples were taken and ooooooooooh dear, I felt more than a little strange. Strange for me, that is. So I had to have a lie down to recover with a sugary lemon drink. After that, I felt well enough and went home.
I was told it would take a week or so for the results to get back.
The specialist nurses kept me informed – I was called on Friday 11 May to confirm there was no news, and the same on Monday 14 May.
Yesterday, I was called again and told the results were expected this morning, and could I come in for 12:30, which I obviously could.
So, I headed to the RVI and was there in good time. Once again, I saw the consultant and specialist nurse.
And the news wasn’t good. The lump on my rib is a secondary cancer related to the main event in my oesophagus. This means that it has spread, and while that’s the only detectable extra bit, there’s no certainty that there isn’t more to come. This effectively knocks out the surgical option (because there’s no benefit in half-killing me to not remove all the cancer), and so the treatment plan is rather more chemotherapy, with a view to improving my symptoms – there are a number of options for getting my oesophagus to allow normal passage, but that’s a little way in the future.
And just for added fun, as I’m having serious issues getting enough calories into my body, next week (date to be arranged), I’ll be in the RVI for a few days to have a feeding tube installed. This will go up my nose and down my gullet and works with a pump to feed nutrition straight into me.
After that, I’ll be having an initial consultation with an oncologist before the treatment begins.
Now you’re all up to date, and if you’ve read this far, you know about as much as I do. And you can probably understand why I haven’t been posting.
 As we know, million-to-one chances come up nine times out of ten