Monthly Archives: May 2018

May 2018 Round-up

Well, that’s May out of the way, and hasn’t it been an interesting month?

Weight

Yes, well. The apparently rapid weight loss of previous months turned into a catastrophic and distinctly unhealthy weight loss, thanks to the medical nastiness.

May 1:  187.6 pounds (13 stone 5.6 pounds, 85.1 kg)
May 31:  176.4 pounds (12 stone 8.4 pounds, 80 kg)

That’s an alarming drop of 11.2 pounds (5.1 kg), though a bit of an upward trend is now going on.

Eating

That’s kind of a past tense thing for me now, as I’m getting all my nutrition via a tube that’s been shoved up my nose.

Exercise

The eating issues led to me getting very run down, to the point where my energy level could be best described as “non existent”. Picking up a bit now, but I don’t anticipate managing any long walks in the near future.

Posting

If you’ve been reading my recent updates, you’ll understand that I’ve got rather a lot on my mind, which accounts for having just ten posts this month.

Stuff

A couple of months ago, I was hinting about changes to come – this related to my job, but for the time being we can ignore that, as something rather more serious came up (see recent updates). Updates will continue to appear as things happen.

Weight Report – 30 May 2018

Weight:  176.7 pounds (12 stone 8.7 pounds, 80.2 kg)

Time to revive these old things, I think. Only this time, upward movement is good, downward not so good, as we’re now thoroughly in backwards mode. That weight, for reference is:

62 pounds (4 stone 6 pounds, 28.1 kg) lower than the same day last year

50.6 pounds (3 stone 8.6 pounds, 23 kg) lower than at the start of this year

Buuuut 2.3 pounds (1 kg) higher  than before I went into hospital last week.

Progress, or something.

Random notes on being in hospital

Right up until the current unpleasantness, I’ve never had cause to spend much time in hospital. I don’t think I’d ever been an inpatient for more than a couple of nights previously, so the last week was a whole new experience for me.

I was in a “Bay”, which in this instance is a room with six beds located off the main corridor of the ward. After a few days, I was moved into the next bay, as the one I had been in needed to be reassigned for some female patients. Each bay has its own toilet and shower.

Each bed comes with a TV on an angled arm, but if you want to watch it, you have to pay, and I really couldn’t be bothered, so I didn’t even look at it.

The hospital provides free WiFi, which was actually more than adequate for my iPad to keep me up to date with everything I wanted to be up to date with. This was good, because my phone wasn’t getting a good enough signal to make it useful as a hotspot.

Hospital beds are small. Big enough to sleep in, but not really comfortable if you’re trying to find a comfortable position to sleep in with a tube up your nose and leading over to a stand. After a night or two, I found that raising the head of the bed and sleeping in a near seated position was the best option.

It’s loud. Patients being brought in or moved at any hour of day or night, staff moving about, alarms going off, and well, people. Now I have to admit being the source of some noise myself, as I generally do some coughing and spitting several times a night, but that was nothing next to the guy who was in the next bed to me for several nights.

He was elderly (I think I heard someone mention that he was in his 90s), and was described as “confused” – didn’t know where he was even after being told. But the problem was that he did a lot of shouting. On his first morning, he started shouting for someone to bring him his pants, as he was going to be late. And he continued to be intermittently shouty throughout, often having one-sided conversations late at night, leading to me getting even less sleep. But hey, never mind, I survived…

The staff – nurses, doctors, and all the other people who make things work (delivering food[1], keeping the place clean and so on) were all quite lovely – I was always treated with kindness and courtesy.

Oh, and the RVI is seriously big. Getting from one end to the other is a major expedition (take supplies, a map and a sleeping bag in case you get lost).

[1] Shame I couldn’t eat it. It’s amazing how desirable toast and cornflakes are when you can’t have them…

Home again

OK, time for a catch-up report (and to keep the records complete, as I’ll more than likely forget things if I don’t do this…)

On Monday 21 May, I went into the Newcastle Royal Victoria Infirmary (RVI) as planned to get set up with a nasal feeding tube. This had become unavoidable, as I’d reached the point where any time I swallowed the liquid food stuff, it was coming back up sooner or later (generally quite soon). This meant that I was getting little to no nourishment, was losing weight at an alarming rate, and looking very bad. On that morning, my weight had reached a low of  174.4 pounds (12 stone 6.4 pounds, 79.1 kg). Seriously, I don’t think I’ve been near that weight since I was a young skinny thing in the early 1980s.

Anyway, I arrived, had to sit in a waiting room for a while before being taken to my hospital bed, and a short time after that, I was taken down to the Endoscopy department where my consultant greeted me, sedated me and did endoscopy things which ended in inserting a tube up my nose, down my oesophagus and into my stomach.

Once I’d recovered from that and returned to my bed, I was set up for feeding. This involves a digital pump device, a bag of stuff (a relative of the Fortisip liquid stuff, only without the flavouring[1]) and a load of tubing known as a “set”. This connects to the end of the tube that’s sticking out of my nose, and delivers the stuff, which is referred to as “feed” at a controlled rate. Initially this was set to 20ml per hour – they started at a low rate to make sure I’d be able to accept it. This ran for twenty hours a day, which sounds like a lot, and it certainly felt like it. Fortunately, I was able to take the kit for a walk to have a wash and use the toilet, as it was all attached to a drip stand.

The next day, Tuesday 22 May, the rate was increased to a huuuuge 30ml per hour, and then to 35ml per hour when someone looked a bit more closely at the instructions.

Now I probably lost track somewhere, but at some point, I was switched from the lower concentration version of the feed to the full-power one, which comes in smaller bags.

Wednesday 23 May was much the same (as far as my addled memory can tell me).

On Thursday 24 May, I had my outing to the Freeman Hospital, which I’ve already reported on. And my feed rate reached the heady heights of 50ml per hour.

On Friday 25 May, I had a bit of a setback, when the increase to 75ml per hour seemed to have been a bit too much in one go, as it caused me to  :sick: in the early evening. So, for that night, it was scaled back to 50ml per hour again.

On Saturday 26 May, it was agreed that I’d stay in until Tuesday, so I could see the dietitian again before going home, and that we’d try a smaller increase the rate of feed. It seemed to work well enough with 60ml per hour. It also didn’t hurt that the number of hours had reduced to just 16 by this point.

By Sunday 27 May, I was setting up the kit myself rather than having a nurse do it – initially, this was done under supervision, but once it was clear I knew what I was doing, they let me get on with it, which was good preparation for using the system at home. And I was able to set the rate to 75ml without any issues.

On Monday 28 May, the rate went to 100ml per hour, with the duration down to just 13 hours, all without incident.

So, on Tuesday 29 May, I was deemed safe to release into the world, and that’s what happened. I was sent home in a taxi with a nurse to assist with my equipment.  That’s a pump, a small plastic stand (so I don’t have anything as awkward as a drip stand to manage at home) and an introductory supply of feed, tubing sets (you use a new one every day), syringes for flushing (more on that later) and err, that’s about it. But it was lots of stuff. By the time I’d got it all stacked on the kitchen worktop, I was ever so slightly tired. So, after watching a bit of TV, I took my pump to bed and got myself hooked up at the new rate of 110ml per hour, which started well, but did have a  :sick: some hours later. I turned it back to 100ml per hour for the rest of the session (just 12 hours!).

While I was in the RVI, a letter had arrived from the Freeman Hospital, giving a new start date for my chemotherapy – today. Now normally, I’m very flexible and cooperative when it comes to medical appointments, but I didn’t think this would be a good idea at all – I knew I’d need a few days to catch up on sleep and to be in a good state for anything, never mind actual treatment. Of course, I’d arrived home too late in the day to call the hospital to rearrange, so it would have to wait until morning.

This morning, Wednesday 30 May, I’d just shut down the feed thingy and was partway through flushing the tubes when the phone rang – it was the Freeman Hospital, confirming my appointment. I explained the circumstances and they agreed to reschedule.

I carried on sorting out the kit and began catching up with things when the phone rang again – this time it was the doctor I’d seen at the Freeman last week, who explained that the reason they wanted to start today was due to that original quick referral path that led me here – there are target dates and apparently today was one of those. I made it clear that I really wasn’t fit to start today, and that a few days would be needed at the very least for me to catch up on sleep and get a bit more lively. There was no trouble with this, and a few minutes later she called back to say that it would be rearranged for next week.

A few hours later, I had a visit from the Department of Work and Pensions, which involved me answering some questions while the nice lady filled in a form, which I signed. Apparently there’s a good chance that I’ll be eligible for regular benefit payments – I should find out in the next few weeks.

And err, that’s it. All up to date. But more to come….

 

Still not escaped

Well, having had a slight case of :sick:  when we tried increasing my feed rate on Friday, followed by a successful smaller increase last night, the plan now is for another small increase tonight, and if that goes well, another tomorrow.

Then, after the bank holiday, the dietitian can review the plan on Tuesday, and then let me out of here.

A plan has been made

Today, Thursday 24 May, I had a ride in an ambulance[1] to the Freeman Hospital, where I had a meeting with an oncologist.

After a discussion about the planned treatment and its possible side-effects, I was given a brief examination (lungs and heart appear to be operational), had a further discussion then signed the appropriate form.

I’ll be having a series of treatment cycles. Each starts with a day visit to the Freeman Hospital where drugs will be infused into a vein. I will then have pills to take at home for three weeks, then back to the start. The current plan is for eight of these cycles, and my next visit is scheduled for 28 June.

The aim of the treatment is to reduce the cancer and either stop or restrict further growths. It’s not a “cure” as such – more an effort to prolong and improve my life.

So I think it’s a good time to quote the wonderful Terry Pratchett, who when faced with his own medical embuggerance[2], quoted his sublime character Granny Weatherwax

I aten’t dead

And I’ll aim to keep it that way. Updates as things happen.

[1] Disappointingly, the kind with seats rather than a blues and twos emergency job.  The taxi for the return journey was even less thrilling.

[2] Again, his own words

Hanging in there…

It seems like a good time for an update…

On Monday 21 May, I arrived at the Newcastle Royal Victoria Infirmary and was deposited in a waiting room while they worked out where to put me. After some confusion, I ended up in a 6-bed room in Ward 44.

After a short wait, a trolley arrived to take me down to Endoscopy, where I was sedated and had a tube inserted in my nose and down into my stomach. Sedation is definitely the way to go for this kind of thing.

I was then returned to the ward, and not long afterward, my tube was connected to a bag of stuff and a pump (tiny electronic thingy), set to deliver nutrients at an initial rate of 20ml per hour.

Sleeping wasn’t too good – I struggled to get comfortable, there was a lot of noise, and it was all a bit odd.

On Tuesday 22 May, I was able to take my nutrient stand for a walk down the corridor and have a wash before settling in my chair.  To add to the fun, they added a vitamin drip to my arm. The nosebag was disconnected for a few hours in the late afternoon. Before that, I had a visit from my old (nearly as old as me) friend Kevin (not to be confused with any other Kevins who may be reading this).

I was reconnected in the early evening with the flow rate increased to 30ml per hour (this was corrected to 35ml per hour this morning). I managed to sleep a lot better this time. I still woke up a few times in the night, but didn’t have any trouble getting back to sleep.

Today, Wednesday 23 May, has been much the same so far, though with added orange juice. Errr, I’ve been drinking it, not having it squirted into me.

Tomorrow will have a bit more variety – watch out for the next exciting update.

A short update

Weight:  177.3 pounds (12 stone 9.3 pounds, 80.4 kg)
Steps: 2.037

I’ll be posting these things when things happen, which won’t necessarily be every day.

Anyway, following yesterday’s epic post, it’s time for a quick update. I now have some more appointments:

Monday 21 May: At the Royal Victoria Infirmary for a few days. I’ll be having a tube installed to allow me to be fed. This involves me being trained to use it (there’s a pump involved, apparently). I’ll be there until that’s all working as it should – probably two or three days.

Thursday 24 May: Meeting the oncologist at the Freeman hospital. This will be an initial discussion on the treatment plan, details of expected side-effects, and anything else that comes to mind.

And if I happen to be still in the RVI on Thursday, transport will be arranged for me!

And err, that’s it so far…

OK, this is the serious post

If you’re reading on Facebook, you’ll need to click the link to see the whole thing.

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[1] 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.

[1] As we know, million-to-one chances come up nine times out of ten