Monthly Archives: June 2018

Actual positive progress

So, yesterday, Monday 18 June, I was collected from the Freeman Hospital by what was described as a “hospital taxi” – actually a volunteer ambulance driver with a car. I arrived at the Endoscopy department of the RVI before most of the staff – not long after 7:30, so had a bit of a wait.

After the usual paperwork and consent form, I was taken through to a room at around 8:30, had a brief chat with the doctor in charge and was given some sedation. It must have been good stuff, because the last thing I was aware of was lying down and having a mouth guard inserted.

The next I knew, I was in the recovery room with no nasty tube in my nose  :tigger: .

I was told that am 8cm stent had been inserted and all seemed ok. After a short time for recovery, I was collected (in a wheelchair, I wasn’t going to do anything silly like trying to walk) and returned to the Freeman. Only drawback- they’d needed my single room for another patient, so I’m now in a four-bed bay. But it’s a lot quieter than the one I was in at the RVI, so it’s not so bad.

First order of business was to try drinking some water. And  :tigger: it works! This had been a tricky operation – sip, wait for inevitable burp, sip, repeat (repeat?? see what I did there?). Failure to wait resulted in the next sip coming right back with maximum wind power. But now? I can drink liquids like a normal person again!

The pleasure of drinking cold water should never be underestimated. It’s so nice, and I can refill my jug from the cooler whenever I like.

I suck with water for the rest of the day. Well, water and some supplements I was prescribed, delivered in soluble form.

Today, a dietitian came to see me and told me to start on a puréed diet for today. Lunch was served – it was described as “Potato and onion gratin in cheese sauce with cauliflower and broccoli”. Well, it looked like this:

Food!

Food!

It was mushy (as you’d expect) and a bit lacking in actual flavour, but as the first real meal I’ve had in ages, it was quite wonderful. The little pot of ice cream that came with it was pretty damn excellent too.

I’ll be having something similar later, and I’ve just filled in my menu request for tomorrow, when I’ll move to what’s described as “fork mashable” meals. More ice cream may be involved.

And on Thursday I should be fine to have some Rice Krispies for breakfast!

I’m feeding a lot happier now, as you might guess. While the feeding tube was fulfilling the function of keeping me alive, it wasn’t at all pleasant to live with – quite apart from being a horrible lump hanging out of my nose, having to be tethered to a pump for ten hours every night wasn’t enjoyable.

I’ll probably be discharged from here on Thursday or thereabouts, which will be followed by some food shopping.

Stay tuned for more food reports.

The idea now is for me to regain some of the lost weight and get into a generally more healthy state.

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…