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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