Progress report

OK, time for some more details on what’s been going on over the last week or so.

You’ll recall that after Thursday’s intravenous treatment, I started taking the pills at home. All seemed reasonable at first – minor issues with what medical professionals like to call loose stools, which have nothing to do with anything you might pick up at Ikea, but a lot to do with getting to the bathroom quickly.

But Sunday night was BAD. I started my feed as usual, some time between 9:30 and 10pm. And had to pause at 3am for a high speed bathroom visit. At the risk of going into more detail than anyone would wish for, this wasn’t so much “loose” as “why has my bum turned into a hosepipe?”. I got back to bed and set the feed to a lower level to see if that would work.

Not so good, as it was folllowed by some advanced vomiting. Stopped the feed and tried to get some sleep.

In the morning, I phoned the help number at the Freeman Hospital. They suggested Imodium to stop the bathroom sprint. As my friend Barry was due to visit anyway, I asked him to bring some along, which he did.

I’d also read the leaflet in the box of chemo pills, which mentioned liquidity issues and advised not taking them until getting medical advice.

Monday night was worse – the sprint was required at 1am, and the vomiting was rough. Not the kind of thing where something you’ve eaten is quickly rejected, but violent retching of the please make it stop variety.  At that point I stopped attempting the feed.

Had a phone consultation with my GP – got a prescription for more Imodium and a sick note for the next 13 weeks.

Struggled through the day.

Called the Freeman again on Wednesday, and they asked me to come in. Aaron provided transport and company. Once they’d managed to find a working vein, they started getting fluids into me.

I was happy to be admitted for as long as needed to get me into a fit state.  Multiple anti sickness drugs were tried, and more fluids administered.

And so on until Thursday night when they injected me with a different anti sickness drug, which came with a promise of drowsiness, which sounded good to me – I hadn’t been sleeping well at all, not least because of having at least on violent sickness session each night, in addition to one or two through the day.

And this time, it worked. I slept! I didn’t throw up!

This morning I was able to swallow and keep down multiple glasses of water, and I’ve done more through the day.  No longer being dehydrated and addled by fluid and salt loss, I managed to have a shower in my ensuite bathroom (I’m in a single room here), which made me feel a lot better.

The plan now is to keep me here over the weekend, and then it’s all change.

Early next week, quite possibly Monday (not confirmed yet), I’ll be taken to the RVI, where I’ll have yet another endoscopy and have a stent fitted in place of the feeding tube.

The stent will, once it’s settled in, let me get back to eating. Not a full, unrestricted diet, as it will need to be softer food, but I’d be able to have such things as cottage pie, Rice Krispies, and ice cream. This would be a huge improvement in the quality of my life. Not being tethered to a feed pump overnight will als be a major improvement, not to mention not having a plastic lump coming out of my nose.

Updates will follow when something happens.

Chemo Round 1

Yesterday, Thursday 7 June,  was my first chemotherapy day at the Freeman Hospital. Three weeks earlier than originally scheduled, because of the original fast-track I was placed on back at the end of March.

So, quite naturally, Wednesday night was a bit rough – hardly slept at all, which is never a good start for any kind of day.

Anyway, I got myself to Ward 35 at the Freeman just a couple of minutes late (didn’t quite time the buses right), was told to take a seat in a day room and moments later they took me to a treatment room and started doing things to me. First, the usual blood pressure, temperature, height, weight, inside leg measurement, err skip the last one, they didn’t actually do that.

Then the fun of finding a vein for the cannula bit. Right hand didn’t want to play, so it had to be the left. That worked OK, and they then ran a saline drip to flush nicely, and I was taken to a different day room, where I sat down to wait.

After a while, the fun started with some pills to take (anti-sickness stuff), followed by a slow infusion from a syringe of lethal drug 1[1]. Once that was in, it was time for lethal drug 2, which was delivered over a couple of hours through a drip. The drip was controlled by an electrical device which managed the rate of flow and only beeped annoyingly a few times.

The drip was a bit odd. I could feel my arm going funny – not painful, but tingly and just, well, odd. This is apparently normal.

Once all that was done, it was time for another flush before I was disconnected and had the cannula removed. It was then time to go home.

I had something to pick up from the Amazon locker at Gateshead, so I took the Metro rather than the bus. Bad Move. It was around 4pm by the time I got to the Metro station, and when the train arrived it was busy. I couldn’t get a seat for a few stops, which was not good, as I was feeling tired. I managed to haul myself out at Gateshead, collected my parcel and got the bus home.

Once home, I pretty much collapsed into my chair. Messaged and emailed a few people, took a few phone calls from friends and vegetated in front of the TV. I must have nodded off to sleep at some point. Woke up at around 8:30 and started getting ready for bed – this is a bit of an operation as I have to set up the feed thingy (I’ll do a report on that at some point) and carry up the feed kit, a jug of water and syringe for flushing my tubes, a bowl for spitting and throwing up (constant hazard),  reading material and me.

Anyway, got to bed, took the anti-sickness medicine just in time to not prevent me from throwing up quite extensively. Took the bowl back downstairs to empty and rinse it and got back to bed. Took the extra anti-sickness medication to make sure things stayed calm, and gave it half an hour before starting the feed at 9:45.

Read for a short while, then settled down to sleep. And woo, hoo, etc! I slept properly! Woke up a couple of times in the night, but got back to sleep just fine. Was semi awake by around 6am, but drifted for a bit after that.

Stopped the feed at 7:45, gave it a bit of a rest before starting on the medication. Took the anti-sickness stuff first and waited a bit before taking my regular medication, then waited a bit more before taking my chemo drugs. I have four pills to take twice a day – two 500mg and two 150mg. They settled down OK, but I stayed in bed for a while longer (apart from a quick bathroom trip, don’t ask, you really don’t want the details) before getting up for a shower and to get my clothes on.

Spent the morning catching up on email, Twitter and so on (all the stuff my brain couldn’t have processed yesterday).

Tesco’s delivered the supplies I ordered about an hour ago (soap, shower gel, toilet rolls, etc…), and now I plan to have a relaxed rest of the day (not that I could do much else)

Notes for future sessions: take advantage of the free transport services on offer. Don’t struggle to get home on public transport, let the nice ambulance service look after me.

Current state: weary. This is, apparently, normal. Should improve in a few days.

[1] These things are pretty nasty – the idea is that they kill cancer cells, but they’re more than likely to knacker plenty of normal ones

Treatment is imminent

Up to last night, the overnight feeding thing had been going well – I’ve been starting it at around 10pm, with a bag change at around 6am, and ending at 8am. This fits in pretty well, as I’m generally feeling ready for bed at about 9:30pm, and it takes about that long to get things organised. And as I don’t need to be up particularly early most days, being in bed until 8am suits me fine. If I’m awake, it’s good reading time!

Last night was a bit different. I got to sleep OK, but woke up at around 4am and, well,  :sick:  :sick:

Quite thoroughly, in fact, so much so that I decided it would be better to stop the feed for one night, as I needed to get some sleep so I’d be in a reasonable state for today’s appointment. It took a while, but I got back to sleep in the end, and didn’t fully wake up until well after 8am.

That gave me plenty of time[1] to shower, dress and get myself on the bus to Newcastle, which got me there just in time to miss a bus to the Freeman Hospital. But the next one turned up ten minutes later, so that was fine.

I got to the Freeman in plenty of time for my 10:30 appointment, even after walking several miles down the main corridor. Seriously, when did hospitals get so bloody huge? Are they all on steroids or something? Anyway, found the right place, took a seat and was called in by a nurse, who took me through the details of what’s going to be happening.

I’d been given a brief description, but this was in a lot more detail, which I’ll summarise for you.

In each in-patient session, I’ll attend the Freeman and have the traditional needle put in the back of my hand. I’ll then have the first drug injected with a syringe, followed by the second from a drip bag. This will take three hours, possibly longer, depending on how busy the staff are on the day.

I’ll then be sent home with a jumbo bag of medication:

  1. The third chemotherapy drug in tablet form, to be taken morning and evening. These come with dire warnings – they can’t be broken or crumbled and I’m advised to avoid touching them. I’ll be supplied with those little paper pill cups for dispensing them from the blister packs they come in.
  2. Anti-sickness drugs
  3. More anti-sickness drugs

Apparently the combination of anti  :sick: drugs works well for most people.

We also had a talk through the expected side-effects, ranging from tingling, hands and feet going numb, and some less common things. I’ve been given a 24-hour emergency number to call in the event of anything nasty happening.

And one nasty thing that I’m told will indeed happen is the one many people think of when they hear the word chemotherapy, but which doesn’t actually happen to everyone. Well, it does if you’re on the drugs they’ll be using on me. Look, there’s no way around this, I’ll just have to come out and say it:

I’m going to lose my hair

Yeah. Fun. And with the added sensitivity to sunlight[2], I’ll be needing a hat. This might be a problem, as you know how it is with hats: some people can wear them and look cool, but other people just look awkward and silly. And you can guess which category I’m in, can’t you?

I’m thinking of maybe a Panama, or something with a brim. Stay tuned for hat updates…

[1] Not needing to do things like coffee[3] and breakfast saves a lot of time
[2] I just need to check that I didn’t accidentally sign up for vampire therapy….
[3] I miss it, though…

Weight and Stuff Report – 1 June 2018

Weight:  176.8 pounds (12 stone 8.8 pounds, 80.2 kg)
Steps: Not many

Shock horror, my weight’s up a bit today, which is a good thing, as it means this feeding thing is working. (And I’m not promising these things will be appearing every day, just when there’s something to report).

Talking of feeding, I had a bit of a mare with the technology last night, as it kept beeping and insisting there was a blockage. I eventually had to disconnect the tubes from the thing hanging out of my nose and flush water in directly – there was indeed a bit of resistance, but once the water had worked through, everything worked as it should. Though this process may have involved me whining a bit about wanting to go to sleep…

And talking of feeding again, I had the expected call from the supplier telling me they would be delivering my first monthly batch on Tuesday. Well, that would have been fine, but I had a letter this morning giving me my new appointment schedule at the Freeman Hospital, and yes, the first appointment is, you guessed it, on Tuesday. So, I called the supplier and they’ve rearranged that for Wednesday.

I managed to sort out some other admin tasks this morning – including making a claim for a bit of cash for being in hospital for eight nights[1], and getting a form for getting cash for having chemotherapy[2].

[1] I have BUPA health insurance through work, and one thing they do is pay cash if you have certain NHS treatment (on the grounds that it’s a lot cheaper for them that way!)
[2] So when I’m sitting there with a needle delivering potions into me, I can console myself with the knowledge that I’m getting paid for it…

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.