Things felt like they were getting worse again on Sunday,
and on Sunday night I was given Oxycodone again to try to help with the pain.
This was not a good move, as I spent all of Monday feeling nauseous. I will
need to try to avoid opioids in future as I don’t seem to get the wonderful
feeling everyone raves about, but I do get all of the nausea and other negative
side effects.
However, the good news is that I was released from hospital
on Monday. I had the drain out on Monday morning, which was, let’s say, an
interesting experience. The feeling of something popping out of your insides
while you are fully conscious is not one I would care to repeat too often
(let’s hope never again!). But it was my ticket out of the hospital, which was
all that mattered, because by that stage I was really struggling to sleep at
all, the food was making me feel sick and I was bored to tears. I came home on Monday afternoon. I was so happy to be home,
in my own bed, surrounded by my favourite people and pets, and because I had
felt reasonably okay in hospital, I assumed things would just continue to
improve when I got home. I couldn’t have been more wrong.
I woke on Tuesday morning feeling absolutely awful. The pain
was so intense, I thought the drain site must have gotten infected because it
was radiating all through my neck and teeth and throat. I couldn’t even drink
Ensures, or even milk because it stuck in my throat and I felt like I couldn’t
breathe. My voice also changed and became very nasal. Something was definitely
not right. I called the Macmillan team, who asked me to send a photo of my neck.
I was all ready to be readmitted for infection, but they just said it looked
normal and that having that much pain was also normal, but to call my GP to
review my meds. I got straight on the phone to the surgery, had some new meds
prescribed and started a new routine of painkillers. I also tried to continue
eating some of the foods I had managed in hospital, but realised very quickly
that even those were no longer possible. I just ended up choking with any
liquid streaming out of my nose. It was as though my throat was obstructed –
and it probably was with the swollen tissue. I managed to eat next to nothing
on Tuesday, which started to worry me as well as the team, and they told me to
come back in on Thurs for the MDT meeting even if my pathology results weren’t
back by then, just so they could review me. They also talked about possible
readmission to have the NG tube put back in, the thought of which absolutely
terrified me.
On Tuesday, I felt like the pain would never end. I had to
re-do my med schedule to make sure there wasn’t a minute that wasn’t covered –
pre-empting the pain if you like. To be fair, my consultant had warned me it
would get worse before it got better and he really wasn’t wrong. Sunday, Monday
and Tuesday were awful and the only way through it was to take it minute by
minute, hour by hour and day by day. The downside of this approach is that time
passes so painfully slowly. The big irony of this surgery is that taking meds is also a
huge challenge in itself – you need the meds to ease the pain, but to take the
meds you have to be able to swallow. I can have the soluble or liquid versions
of the meds but I find these even more frustrating as it takes about 20 minutes
to swallow a cup of liquid, whereas tablets are instant, and who has 20 minutes
to spare to sip meds at 3am??
When I woke up on Weds morning, the pain felt slightly less
intense, and I was feeling quite determined, despite the pain. My new friend told me she had been told to try toast, so I decided to
tackle toast again and succeeded (woo hoo!), which was a really big deal, as it
took about 2 hours and I had to wash every single mouthful down with lukewarm,
milky tea. I also managed a yoghurt and a Calippo. These are my new best friends!
For dinner I decided to be super brave and try a cheese soufflé – I can’t
even begin to tell you how amazing it was to eat that. I didn’t manage the
harder outside parts but I was very pleased with the soft cheesy middle as a
start.
Buoyed by my soufflé success, on Thursday I made some
scrambled eggs with butter and double cream, had another soufflé and more
toast. I was NOT going back for that tube.
On Thursday afternoon it was back in the car for the follow-up
MDT meeting. I wasn’t expecting to see my consultant because the purpose of the
meeting had been for the dietician and speech therapist to check in with me following
my pleas for help on Tuesday, but my consultant was there as well with some
good news on the pathology results. The equivocal lymph node in my neck that
everyone was unsure about - but were also convinced it was very likely to be
cancer - WAS NOT CANCER! This was amazing news. He also managed to remove the
tumour (26mm) and 3mm margins so he was pretty happy that it was all gone. The
hard part now is that I have another impossible decision to make – I can choose
to stop here and ‘watch and wait’ so to speak, with regular monitoring to see
if the cancer returns, and if it does, we can then do chemoradiation. OR I can have
a targeted dose of radiation only (no chemo needed) to make sure it has all
completely gone. Rather like spraying Dettol on a surface after you’ve cleaned
the dirt off, the idea is to kill any remaining microscopic cancer cells that
may remain. This is a mammoth decision and not one I can make straight away so
I’m going to do some research and think very carefully about this one as it’s a
life changing decision whichever option I choose. But great news from the
pathology either way. It’s a shame the tumour had grown to the size it was,
because over 2cm makes it a stage 2 which is why the radiation might be a good
option. Less than 2cm is stage 1 and generally wouldn’t need radiation if it’s
not in the lymph nodes.
Other than that, I’ve been a bit slow on the Netflix front
as I have pretty much spent the week on the sofa watching Wimbledon eating ice
cream– a rare treat at a time when positives can be hard to come by.
