Sunday, March 21, 2021

Living with Ripley

Tomorrow is my third chemo and because of the rather unpleasant (understated) side effects, tomorrow they will only be giving me one of the two drugs. The one they are dropping is only about 5% of the efficacy, so it won't make a huge difference medically, but should make a big difference to side effects. I've been unlucky, I've reacted badly to the chemo, but it still beats having cancer.

But on to 'Ripley', which is our fond name for my ileostomy. Luckily for me it is a temporary solution, but given that there are literally millions of people waiting for surgery due to the pandemic, it's unlikely that I will have my reversal operation any time soon. So here I am, now one of the several million people in the UK that poops through my tummy into a bag.

From Wiki - source not credited
Living with Ripley is not too bad - it took some getting used to, but now we have a routine for the change (every other day) and managing the skin. When skin is covered up (the edge of the bag around Ripley is around 3 cm all the way round) 24/7, and when chemotherapy turns my poop into chemical warfare, then keeping my skin healthy is a challenge. 

But it's a challenge we are working with, and thanks to my amazing partner, I have not suffered any really serious skin problems. Ripley itself has a few quirks, including a fistula (extra hole) and some granuloma, but I visit the stoma specialist nurse next week too, so she will advise if any extra care is needed.

Living with Ripley going forward is going to be interesting. Unlike the usual exit, there is no muscular control over the stoma, so I have no sensation (there are no nerve endings in the bowel) or forewarning of when my body processes waste, whether it's solid or gaseous. (I say 'solid', but it's only thanks to multiple tablets per day that there is any solidity whatsoever.)  In other words, there is no urge - it just happens. Hence the bag, everything is neatly contained and manageable. But.... it makes noises. And it makes smells.

For now I'm somewhat glad that when I return to work it will most likely still be working from home - but I'm going to have to forewarn my colleagues about Ripley, because there's absolutely nothing I can do about it. 

I'm hoping I will have the reversal operation, but when there are people in pain waiting for hip operations, people with other illnesses and injuries that desperately need treating, I am quite happy to go to the end of the queue and live with Ripley that bit longer.

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Wednesday, March 03, 2021

Round two

Gardener mouse from 'Not on the high street'
I have my next chemotherapy on Monday - with the dose tweaked. My consultant said that they will adjust the chemos to minimise the impact, and one of them they can stop if needed. I have to report my  side effects as they start.

In the meantime Sheena has been doing my line care, and taking my bloods. It's quite a process and I lie in bed (with the electric blanket on, mmm) and present my PICC for her to clean and change the dressings. We have step by step instructions from the hospital and a sterile line care kit. I read out the instructions and Sheena does the nursey bit. I think she enjoys it just a little. Makes a change from dog training I suppose!

Whilst I am feeling well I am keeping busy in the garden, building planters and sowing the early veg and flower seeds. But I have a nemesis! I have planted peas three times, and each time they have ended up being a mouse's dinner. I have also fed the mouse squash and cucumber seeds, so it's time for another plan. I've blocked one of the holes into the greenhouse with stones, and put the more delicious seeds inside a propagator. Let's see how smart that mouse is!

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Tuesday, February 23, 2021

Change to the schedule

My lap companion

 I guess I underplayed how ill the chemotherapy made me. I was considered for hospitalisation on the following Monday, but managed to make it at home by rehydrating as much as I could.

The colorectal specialist nurse has cancelled my next chemotherapy and I will be talking with my consultant on Thursdsay to find out what happens - whether they will change the dose, or the space between.

There is an optimum time for the effectiveness of this chemo following surgery, so getting it done soon is important for it to work.

I will update fully on Friday.

Monday, February 15, 2021

TWTWTW

Some of the older generation may recognise the title reference to 'TW3' - which was a rdaio show called 'That was the week that was'. And my, yes it was a week indeed.

It's one week today since my first chemo, and today is the first day I feel well enough to blog and recount the side effects and other fun and games around a week that also featured a reprise of the 'Beast from the East'.

On Monday 8 February my hospital appointment was for 10am, in Ipswich. The chemo services have moved from Ipswich Hospital to the local Nuffield, and the journey was magical. Thankfully we have a truck - and living in a forest it makes a lot of sense. The truck was covered in snow but started and, even though the roads were frequently snow laden and drifts meant the going (even on the A12) was sometimes slippy, we reached our destination safely. The Nuffield in Ipswich is on the Foxhall Road, in a dip in the countryside, the the lane up to the hospital was truly a fairyland.


Sheena dropped me off (and stayed in the car, no point going home again in this weather) and I went in to receive my first chemotherapy. It was relatively simple, with the saline flushes first, then the first of the two drugs added intravenously through my PICC line. I started the chemo at around 12, and it took about two hours. The second stage was the application of my pump - a small plastic torus with a liquid centre that would slowly dispense the chemo into my PICC (and into my system) over the next 48 hours. My pump was slipped into a belt around my waist, and the line went under my shirt to where it connected to the PICC in my upper arm.

I felt a bit weird, a bit sick and tingly, but nothing like as bad as I'd thought I might be. These chemos affect your sensitivity to cold, so having it during a snow week was somewhat poor timing on my part. After a while, to ensure no drastic reactions, I was able to go home with Sheena. I'd been there from 10am until around 2pm - so a packed lunch had been handy. 

Occupying time during chemo

Sleeping with the pump and the PICC and, of course, my stoma, was a little uncomfortable, but I was very tired so didn't do too bad. Tuesday I felt tired and had a very bad headache, and my fingers - if they got the slightest cold - tingled and hurt. I managed a snowy walk but by Tuesday evening I was feeling awful. Sick, headache, exhausted. 

Wednesday I had to go back to the hospital to have the pump removed. It had nicely filled me with all it's contents. The roads were slightly better, but it was still a truck-worthy journey. On the Friday, we returned again to complete Sheena's 'line training'. She changed my PICC dressing, cleaned the line (took some blood and flushed with saline) and I nearly passed out. I went all dizzy - not sure if it was because it was Sheena doing it, or just because it was the culmination of a hell of a week.

The week was not easy - sick feeling, no energy, and no ability to concentrate. And diarrhea. It's probably easier to manage with a stoma, but nonetheless it was not fun. They often say you can't describe chemo exhaustion until you've felt it, and now I know first hand what that means. I spent most of the week either asleep or resting, or feeling listless and sick.   

However, I do believe it could have been worse (and may yet still be, I know), so I'm going to look at the positive. I was not actually sick, and though my fingers are still tingly (and I have to keep warm), I'm doing OK. Today I've started to do normal things again and don't feel like quite such a useless lump. It does make me remember how Sheena was during her chemotherapy too - hers was a much nastier concoction, and the side effects worse. And I know she doesn't remember quite how it was - she just remembers how much she had to fight to keep going. So I'll focus on that - I know I'm going to forget the worst bits, and start putting up more of a fight. 

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Monday, February 01, 2021

Further along the line


I had my PICC line inserted on Friday. It's a weird feeling - a long thin piece of blue plastic firstly (thank you local anaesthetic) entering my arm and then going all the way along the vein to end up floating at the top of my heart. 

First couple of evenings were rough, with some residual pain (you can see the bruising) and the odd feeling of being aware of the line inside - which is probably more psychological than physical.

Today we went back to have the line 'flushed', the original dressing changed and some bloods taken. It wasn't that difficult, but the process is very ordered. Basically I now have a tap in my arm (the red bit) and you can flush by putting saline in, and take blood out, the same valve. Means less needles, which is good.

Sheena watched and was instructed by the nurse - next time it will be her turn. But before then I'll have my first chemo, next Monday. That will mean the drugs plugged into my tap with a pump that will stay on for two days and back to the hospital to have the pump removed. Then back to the hospital a few days later to have the line cleaned and blood taken which will be done by Sheena herself, under the watchful eye of the nurse.

After that, it will be one week on and one week off for chemo (with the two day pump) and alternate weeks will be line care and bloods, done by Sheena. I am due 10 cycles, so this is going to take around three months. 

There are lots of side effects that I will share once they start hitting, but for now I'm aware I will be very sensitive to cold, have neuropathy (tingling/pain) in my hands and feet, and may feel sick. Oh, and blood clots are a possibility too, but we can keep an eye out for them.

I'm feeling nervous, but keen to get this started so that the end will be in sight. It will take some time to feel human again after chemo stops - but by then I hope the world will be a bit more normal and the NHS under less strain. Then, perhaps, my stoma reversal surgery can be scheduled.

Meantime, I've had my vaccine, I have my PICC line, and I have the most wonderful woman in the world to look after me. I think I'm lucky.

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Thursday, January 21, 2021

Choices

As well as dog training, Sheena is going to
have to go back to her nursing days!
My chemo was due to start on 11 Jan, but with the new very contagious version of Covid, and the prevalence of it at our hospital, I asked if we could delay. It wasn't an easy choice, and I couldn't speak to my colorectal nurse as she was off, but in the end we decided on a delay.

Since then the chemo day unit has moved out of the hospital into the local Nuffield, as they did during the first lockdown. This keeps the chemo patients as far away from any risk of infection as possible - and the cancer ward has been given over to Covid patients. They are now postponing cancer surgery, I've heard, so I have been very lucky with my treatment so far.

My chemo schedule is now planned and I will be going to the Nuffield. I will have my PICC line inserted on 29th January, and my first chemotherapy treatment on 8th Feb. There will be line care, blood tests and all sorts in the meantime, with chemo infusions roughly every two weeks, via a pump that is removed two days later. Sheena is going to learn how to use the PICC line to take blood for me and to do the maintenance - lucky Sheena!

There are a shed load of side effects possible, but the most common are neuropathy (pain/tingling in extremities, something Sheena still suffers from more than a year on from her last treatment) and extreme sensitivity to cold, especially in the air. Those will be copeable with. I have to take a warm scarf and lunch to my first chemo session as it will be around 3 1/2 hours.

There is the possibility that I will get a Covid Vaccine as I will fall into the clinically vulnerable cohort - Sheena has already had hers as her immune system (even now) will still put her in this category. But for now it's keep calm and carry on. I will update after my first treatment. I may even post pictures of my PICC line.

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Friday, January 08, 2021

There's no such thing as an original story

Chizel. Why not!
A good few years ago I started writing a novel about a 20th century woman who ‘time slipped’ into Medieval times. It fell under ‘Hero’s Journey’ in story theme terms, but the fun of the story was how a  modern woman faced and overcame challenges in a bygone age. I struggled with the language differences, I struggled with some links in the story, but I liked the main character. I wrote about a third of the story, with the plot fully outlined, and then I read ‘Outlander’ by Diana Gabaldon.  Basically, exactly the same premise as my story, but written sh*t loads better and with a much more interesting scenario (15th Century Scottish Highlands).  

For reasons other than the fact that the concept had been done 100 times better by someone else, I abandoned my poor lady in Medieval times (I wonder how she’s getting on?) and haven’t tried to write a novel since. I have written plenty of short stories (a few can be found on here), but the idea of writing a novel still taunts my creative muse.

A friend suggested I could write further on the infamous Matthew Hopkins (I’d already written a song about him), and I briefly flirted with the idea of time travelling the Witchfinder General to today – but he’d be right at home during a pandemic!

I’m therefore going to start thinking about what I want to write – it doesn’t matter if it’s been done before, or whether it is publishable or not, I just want to revisit the pleasure of writing. I won’t say ‘watch this space’ because if the last novel attempt is anything to go by, you’ll get very tired waiting.


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