It's hard to believe we
are in the middle of March 2017 - the last blog I wrote, we were still in the
work up to Christmas & I was getting ready to enjoy what I would hope to be
the best ever festive season. Now we are heading towards Easter, but my silence
has not been intentional.
Christmas Day (&
Boxing) was lovely, we had the morning at home with our babies & then had
Christmas lunch around my sister's with our brother & each other's partners.
Just the six of us, the food was great & the company even better. I really
did enjoy it...
New Year's Eve as you know
I am not a great fan of, but we thought we would have Lauren & Pete around
for drinks & nibbles & see the New Year in with a bit of spirit rather
than head to bed at 11.30pm! Unfortunately that never happened, and I certainly
wasn't expecting the events that occurred over the next seven weeks.
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| Christmas Day 2016 |
All I remember from my New
Year's Eve was Stef kissing me on the nose lightly & whispering 'Happy New
Year' as I was lying in his arms in the dark side room, before we heard a load
of fireworks go off around us in the distance. I was admitted to Exeter Hospital that morning, my lung function has declined rapidly over the last
couple of days & I felt horrendous. I was put back on oxygen as my SATS had
dropped to their 80's. A few days later I was told I had Influenza A (Basically
the flu which the fucking flu jab I had had in October didn't cover!) I was
isolated & put on an anti flu medicine & just prayed it didn't go
scarring my lungs too much. A few days later I was discharged but still felt
rotten, with the added extra of stomach aches I was getting really frequently.
After three days of being
home I was rushed back in with agonising pain in my stomach, my stoma had
stopped working & needed unblocking. After a day of poking around it was
flowing again but the pain I was suffering only increased... Day after day was
followed by x ray's, ultrasounds, enemas etc. I was getting the major feeling
of deja vu from just six months ago when I had all the trouble with my blocked
tummy. Except, we knew the problem this time. My bowel was blocked, full of
hard, rock solid faeces, mucus & scar tissue. We knew this from last
Summer, but the team had said we could leave it as nothing would happen because
the bowel would lay dorment. They were dead against me having an operation
because the risks were so great to not only my life, but the fact they might
even not get to the source of the problem & I would continue to be in pain.
From the outset the answer
to an operation was a flat out NO. They were going to try everything else and
see what happened. Fast forward 4 weeks later, and I was still in the same
position. Just very fed up & losing my mind. I am not even joking, my
mental health was suffering greatly and I just had to get home for a break. I
was allowed for a few hours but ended up coming straight back in, screaming and
crying in pure agony. Morphine was the only thing that would keep it at bay,
for about an hour and then it would return with vengeance, worse than ever
before. I was on IV morphine every two hours around the clock. They made me
eat. They stopped me eating. I went onto a feed through peg (tube in my tummy)
only diet and was then told I would possibly need to have TPN (fed through the
vein which can be a huge infection risk). It didn't come to this as the
infection risk was too great and then they realised it didn't matter whether I
ate or not, the pain would come at 4am the same as it would come at midday...
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| Stef brought the babies to visit me... |
I went under two general
anaesthetics in the space of a week to have a scope look into my stoma, up my
arse and every other orifice they could possibly imagine. Nothing worked &
they were blocked each time they tried to go further. Finally, after I was
literally going to sign myself clinically insane, they decided to take me to
theatre. The third general anaesthetic in just under a fortnight. I won't lie
to you, I was absolutely bricking it, the risks were enough to stop me wanting
to go any further but I couldn't carry on as I was? I was pretty spaced out
much of the time, either too tired to see and talk to people or so depressed I
just shut myself off everything. It was a Thursday I went down, five weeks ago
yesterday actually. So, yes. I am alive. I made it once again.
The plan was to be ventilated
in ICU again for a few days & then wake me up slowly. I woke up there and
then about seven hours later. They wanted me to breathe for myself as soon as
possible so I hadn't even reached ICU before they brought me round. I remember
seeing Stef & his brother Shane that night but I don't remember much
else....
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| The day after my operation sat out in ICU |
I was in ICU for five
days, those of you who know what ICU is like, you don't ever really want to
talk about it. It literally scars you for life but I cannot knock the fantastic
nurses that looked after me once again. Many of them remembering me from just a
few months before, when I was really poorly with my tummy & my life was
saved by having the stoma.
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| Playing dress up in my room, dreaming of wearing these when I recover! |
As I was wheeled back into
Culm East HDU I still wasn't 100% sure on what happened to me, what I had done
or what it would mean for the future. Over the next couple of days it felt like
pure hell, I was angry, furious even, upset all the time. Crying over anything,
I could barely move & I still had the stoma. I wanted to just walk out of
the hospital and get home but I knew this wouldn't be a reality.
I finally had everything
all explained. I had what's called a colectomy. The surgeons removed my large
intestine, which was completely blocked with solid rocks that would have never
been dislodged if you had tried (which we did plenty) my colon was removed,
which was full of a cement like paste, a mucus caused by my CF which was
unusually thick & the majority of my rectum was also removed. My stoma was
changed from a loop ilestomy (two holes) to an end ilestomy (one hole and half
the size) So Steve has gone and is now Steve Junior or Stevie for short and he
is here to stay with me until my time is up. I was pretty gob smacked to be
honest, all I kept thinking about at the time was the fact I wanted to weigh
myself & see how much I was now with all my stomach contents gone but I
knew that would have to wait until all the swelling had gone down.
Each day dragged and after
seven weeks of hospital rooms and the same routine I pushed myself to the
limits, removing my oxygen, getting out of bed and dragging the heavy drip pole
out of the room with me, attached to several fluids, IV's, PCA morphine &
IV immuneo's. I wanted to be in normal clothes and more than anything I wanted
to eat and drink. Friday soon came around, one week and barely a day since I
had the front of my body cut open, vital organs removed and moved out of the
way and I was on my way home at 5pm that evening. I was so scared, so emotional but I couldn't wait. I
knew it was too early, deep down. But I didn't want to be honest, I had had
enough, my mental health was so affected I just had to get out.
The next week was pure
hell. For Stefan just as much if not more than me. He had the week off work to
look after me as I couldn't be on my own, I couldn't do anything for myself. I
was having major problems with my stoma and its output. Constant leakages, bed
and clothes changes. I felt so dirty, so ashamed. I didn't want Stefan to do
this, I knew he could be better off else where, with someone without all these
problems. My back pain was horrendous, I just couldn't get comfortable because
they had cut me vertically from my chest down to my lady garden! I last had
morphine the day before I left hospital via my PCA, I just stopped it without
weaning off, after having it for seven weeks straight. I don't think that
helped me at all but I didn't want to feel so drugged up anymore. The worst
part was food and drink. I had no appetite. No thirst. No taste buds. I was
losing weight rapidly and my body wasn't healing because I was running on no
energy.
I can honestly say this
has been the hardest recovery I have ever had to make. I am still recovering
and can thankfully say after five weeks after the operation that I am eating
more, drinking little and often and very mobile now. However, I still haven't
come to terms with the last few months, I don't know when I will. I now have to
accept that the stoma will not be reversed, this seemed fine before when I had
the option, but during my bad days I do think about how different things could
have been. I know I am extremely lucky, once again, everyone at Exeter hospital did all they could to look after me, save
me and make sure I got back home again. I can't be anymore grateful than I am,
my lungs! These bloody lungs are just amazing... But fuck me it's been hard
work and I can honestly say I would be very happy to never have to go through
that again.
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| The babies have been looking after me |
Since coming home I had to
make the very hard decision of giving up my crested geckos, I walked into my
room and just fell to floor and sobbed. I never thought I wouldn't be able to
cope with their care but the reality being as I deteriorate, things are getting
harder and I just can't do it all. Something I am finding hard to accept. My
snakes are my passion and are here to stay, as is my spider and scorpions. The
dogs and skunks are my babies, that would never be an option, but it was really
sad to see my cresties go. I am just so very pleased they have gone to great
homes.
So that's about it really,
I am taking each day as it comes. I am still having to be on the St Marks
solution and this will also be a daily permanent fixture in my life or should I
say, pain in my ass, due to Stevie and my hydration / kidney issues. So if you
see me with my little backpack given to me by my gorgeous late nephew Jack, you
will know what it is.
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| Out On Sunday For An Hour! Bit Sore After!! |
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| Watching Beauty & The Beast Today For Lauren's Birthday |
I will try my very best to
start updating you on a more regular basis with shorter, hopefully happier
blogs. I am still battling with my demons so please forgive me if you catch me
on a bad day. Thank you for everyone's support during the time I was in
hospital and since.... Before I go, Stefan, I know I don't say it often, and I
really wish you didn't have to put up with the things you have. I love you so
much, thank you for being there and telling me to never give up.
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| Christmas Day 2016 |
