I've come out of
isolation feeling slightly crazy. The world feels quite surreal and
not right somehow, almost like Wonderland down the rabbit hole. I
can't think straight, probably due to a mixture of ongoing pain,
morphine drugs, and a completely fucked up sleep pattern for 3 days.
Languishing in bed all that time you tend to fall asleep unexpectedly
for several hours at a time, wake for while, before suddenly
succumbing to tiredness again and falling asleep, on and off for most
of the day. Then at night time it continues as sleep deprivation -
being woken up every few hours for drips to be attached or for obs to
be taken. Incorporate watching bizarre animé films that you can't
quite make head or tail of and switch between different realities
doesn't exactly help the cause either! The routine goes on, day in
day out, so all days seem the same, only varying which doctor comes
to see you and the completely different things they say.
I only went in for some
stronger pain killers. On Wednesday my
legs had started to ache, only a bit at first, but growing worse each
day. A deep muscle ache that got more and more painful as I used them
more. By Friday I was having trouble walking by late afternoon and
was in so much pain by Saturday I phoned the hospital in an emotional
state seeing if they could give me something stronger than
paracetamol or ibuprofen, which weren't making a dent in the pain
relief department any more. They asked me to come in. I wasn't
expecting a holiday!
I had to be wheeled to
the acute medical unit as by that stage I couldn't walk further than
across the room. They took blood from my PICC line and then wanted to
take some from my other arm too (on 2 separate occasions) but I
refused. I got the PICC line precisely so I didn’t have to have any
more needles stuck in my veins and collapse them. My veins are small
and I bruise easily. They just had to accept this and I was a bit
surprised actually. But then they're getting blood from me anyway.
Painlessly. 1-0 to Zoe!
After an examination to
test my muscle strength in my arms and legs, arms absolutely fine but
legs went into spasms of pain, yes I'm crying at this point. It
fucking hurt! They gave me some morphine based painkillers and I lay
down and closed my eyes. It made me really sleepy, but didn't really
take away the pain. The next thing I know I'm being wheeled round to
the ward whilst being told I'm neutropenic again and they need to put
me on an antibiotic IV drip. They don't tell you that you have to
stay in overnight unless you really push them. I asked if I was going
to make the fight night in Hove at 7pm. They just gave me a screwed
up mouth, head tilted, shrug of the shoulders look. How about
offering the information that I will be checking into Hotel de
Worthing? No, better to just wait until it slowly dawns on the
patient. Now I'm not stupid (well only some of the time!) so I knew I
would miss it. I had been looking forward to it for about a month. I
would also miss my daughter's dance exam the following morning. So
I'm emotional from lack of sleep since Wednesday night, and in pain,
and that just tipped me over the edge, so yes I did start sobbing
uncontrollably. I was completely gutted. 1 all!
They took me to a
private room. I need to have one as I have to be in isolation away
from any infections. Neutropenia is when your neutrophils (a type of
white blood cell that fights infections) drop down very low in
number. Normally you have around 7500 per cubic millimetre of blood
(written as 7.5). Mine was 0.2 (ie 200) and went down further to 0!
So anyway I'm confined to 4 walls again with a big sign on the door
saying beware or something like that (I didn't really see much of it
being on the other side) so all doctors and nurses have to put on
sterile gloves and aprons before entering. Well at least I have a
nice shower with a seat in the bathroom. Last time I was in a holding
room as there was no other spare beds. I had a sink with no plug in
the bedroom and a separate toilet and that was it.
The nurse came with
lots of forms to fill in. My dad is legally my next of kin so I put
his name and number down but said expressly I didn't want him called.
I didn't feel they needed to know as I would get the spanish
inquisition and I wasn’t in the right frame of mind to deal with
it. So the nurse left the room and obviously handed the forms over to
another nurse at reception. The next thing I hear is “Can I speak
to Mr Andrews please”. I started shouted “What are you doing? You
weren't suppose to phone him!” which didn't work so I grabbed my
drip on wheels and half ran half hobbled down the corridor yelling
and causing a bit of a commotion! Nurses appeared from everywhere.
They were speaking to my mum and asked her not to tell my dad but
there was hardly any point. I got a text and several e-mails soon
after asking lots of questions. Just what I didn't want. More sobbing
on my part. 2-1 to them.
The kids' Dad
eventually brought in my previously packed bag from a few weeks ago
and a take away for me at half 8 by which point I was absolutely
starving having only had garlic toast around 11.30am. They gave me
more morphine a bit later but it made me feel a bit sick this time
and at half 3 in the morning I threw up. They put me on another drip
at 4am and by 7am I slowly wandered up to reception for more
paracetamol as I just wasn't able to go to sleep with the pain.
Breakfast at 8 – a bowl of cereal. No toast – the budget didn't
stretch to a toaster apparently.......Yes that's what I thought!!
Then several doctors came to see me and said they would continue on
the antibiotics and review tomorrow. So that means another night in
hospital without actually saying so. Sneaky these doctors!
I slept for a few
hours, woke for a few more, falling in and out of sleep very
suddenly. When you are pretty much confined to your bed it makes you
very lethargic. Not much punctuated the day. Lunch was a special
order (seeing as there was, as usual, nothing on the menu I could
actually eat, it all being meat, fish or dairy) of the most boring
and tasteless salad I have ever eaten in my entire life. Floppy
iceberg lettuce, 4 slices of cucumber and a quartered tomato with a
few bits of cress. No dressing. Dinner was a jacket potato. No
vegetables. It would be fair to say the kitchen staff have absolutely
no imagination when it comes to food. They prepare the packet soup
and probably packet most other things and dish out this slop to all
the ill patients who get fuck all nutrition from it and therefore
take much longer to get better. You really are what you eat. If you
eat crap you feel crap. If you eat healthy nutritious food you feel
energised and well. You get out of it what you put in. They don't
even serve decaffeinated tea or coffee or green or herbal tea despite
the fact that heart patients in particular are at risk from high
blood pressure from caffeine intake. Caffeine contains polyphenols
that can bind to iron, making it difficult for our bodies to absorb,
so it's also bad for anyone who is anaemic. More on this later...
Meanwhile my new friend Ish brought me in some proper food!
I've actually lost
track of days, it all being a bit similar. It must have been Sunday
night they put me on 2 hourly obs as my blood pressure had been
constantly low (yes that's because I normally have low blood
pressure!) and an overnight drip of fluids for 10 hours to help it
increase. It actually went up so marginally 85 to 89 over about 65
that it was still low and I think they finally accepted this was the
case and I was actually fine.
Biology lesson for the
day! – the average blood pressure is 120 over 80 which tends to
increase as you get older. Although anything above 120 is considered
by some to be too high, over 140 means you are at a higher risk of
heart attack or stroke. The systolic number is the highest pressure
when the heart contracts and the diastolic number is the lowest
pressure when it relaxes. You can help lower your blood pressure by
exercising more, eating more fruit and veg, cutting down on salt and
alcohol and losing weight.
My temperature doesn't
vary much from 36.5, my heart rate was no longer tachycardic (fast
heart rate of over 100) as it was when I came in, my oxygen
saturation which is normally 99-100% (a nurse said last time I was
admitted that she had never seen someone with it at 100% before) was 98-99% but I
have a bad cough and have decreased my exercise from 25 hours a week
to about 1-2 hours a week I estimate. Pretty rubbish really but
obviously not a permanent thing!
Monday you could tell I
was feeling better (or maybe just completely bored out of my mind) as
I changed my own sheets and made my bed, proper corners tucked in and
everything! The nurse was quite astonished when she came in. The
doctor came in early and said they may try and move me up to the
haemotology ward. Hmm that means another night but you can't say it
can you!! The haemotologist (a woman) came in around midday and said
that I didn't have an infection and apart from extending my GCSF
(Granulocyte Colony Stimulating Factor) injections (it stimulates the
bone marrow to make white blood cells) and despite having zero immune
system, there was no reason for me not to go home as long as I
monitored my temperature carefully. They didn't even want to do
another blood count since the 0 of the day before. How different is
this to last time when at 4.3 (not far off normal) one of the doctors
was adamant about keeping me in and was horrified that another doctor
had told me I could go home when my levels were 1. The varying
opinions of doctors. Hospital might not always be the safest place if
your immune system is low.
Well we had lunch to
get through first before I went home. And guess what?! Nothing I
could eat. I said I couldn't face another salad like yesterday. I was
offered an apple or another jacket potato from the kitchen. I
declined. I'd already had some cherries I'd brought in as a snack
earlier, I wanted something more substantial than fruit and something
more variant than a potato. (My other essentials were rice milk,
dairy free spread, green tea, a couple of peaches and some grapes).
Well the staff went to talk to the ward manager and argued my case.
It took quite a while I gather but he did eventually see sense and
one of the nurses went to the restaurant bar. They made me the most
delicious pasta in a tomato sauce with onions and herbs. Simple but
really really tasty. They have put it on my notes as I will have to
be admitted again (at least 5 days in September for the first op, and
I wouldn't be surprised, though I would like to be, if I wasn't back
in before then with neutropenia again). I think I am going to write
to the manager of the hospital and point out how dire the situation
is. “The numbers of hospital patients becoming malnourished have
doubled in three years to a record 13,500”. Does that surprise you?
Meals in prison are better nutritionally balanced and prepared and
cooked in healthier ways. There is no added salt and food is cooked
in the oven rather than frying.
So anyway I'm home,
legs recovering enough to walk normally again, a few temporary side
effects like an itchy rash on my neck and having to take some
gaviscon for a few days, I'm now back to normal and even managed half
a ballet class and a late night party til 2am with my first drink (or 6!) in 3 months! Awaiting blood results for 5th
session on Monday hopefully. 3 and a half more weeks and that will be my last one!
