My Diary – March 2007
Friday
30th March 2007
Friday night was the Chocolate Ball. It
was really good. We were given four tickets so Lee and his friend, Jeremy, came
with us. I wore mascara for the first time since November, now that my
eyelashes have grown back! It felt fantastic, but a little bit weird. 
Jeremy drove us there. We left just before 4pm, but got stuck in traffic
for over an hour at Gravesend. We didn’t get to the party until 7.45pm, having
spent half an hour driving round London trying to find the Dorchester Hotel
where the Ball was being held. We were kind of in the right place, but just
couldn’t find it. We had missed the champagne reception by the time we got
there. There was a three-tiered chocolate cake at the entrance with lots of
chocolate musical notes on it. That seemed to be the theme. They had chocolate
notes on all the tables. There were chocolate guitars and keyboards as long as
from your elbow to your wrist. Mum spotted Lawrence Llewelyn Bowen, who looked
at us both, then at me again. I don’t think he’s seen an elbow length shocking
pink wig before! Micha Barton from The OC was also there, along with Ruby Wax
who was the host.
We had a three course meal, but it was
too posh for me. For starters there were three prawns on a plate with some kind
of sauce dribbled on it. I just ate a bread roll with butter. The main meal was
guinea foul, I mean fowl - at first I thought Mum had said guinea pig! I ate
some of that, but before I found out it was guinea fowl. I thought it was
chicken. The pudding was nice though. It was strawberries at the bottom, with
warm chocolate cheesecake on top, with strawberry sorbet (very tangy and
lovely) on top of that, then finally a curly brandy snap on the top. There was
red and white wine, but I stuck to water, especially after I found out how much
Lee and J had to pay for a pint, and that they charged a service fee as well!
After the meal there were a few dances by Vincent Simone and Flavia Cacace from
Strictly Come Dancing. Then we had the auction. This is my favourite part of
charity events. I love hearing how much people spend. I had my eye on a £5,000
shopping spree at Topshop and a date with Lemar! There were some speeches after
that, and then the results of the silent auction that had been going on all
night. I started to get really tired, and my back was hurting. It didn’t finish
until 1am, but we left at 12.30am. We stopped at the chocolate fountain on the
way out. They had lovely chocolate doughnuts. Lee absolutely covered one in
chocolate from the fountain. I shoved it in my mouth, and I had chocolate
running down my chin. Not a good look for the Dorchester Hotel! We were given
goodie bags before we left. They had things in them like designer sunglasses,
chocolates, sweets, T-shirts, CD’s, badges, stickers and leaflets from bands,
like the Kooks and Paolo Nutini (love him), and lots more. We didn’t get home
until 2.30am.
It was practically lunchtime before I woke up on Saturday. We went to
Linda’s again. This is a photo of me with the lamb I fed last week. It scared
me when it ‘baaaaed’ when I was holding it. It was really cute. It kept
sniffing my chin, and licked me. All the lambs had been on the grass by Linda’s
house, but on Saturday they were moved to the big field with the sheep. They
are old enough now, and the lambs that were being bottle fed aren’t anymore.
On Monday I went to the Whitstable Umbrella
Centre to meet John Rose and Ronnie Treston, who are helping me with my
fundraising. John got in touch with me last year, and Ronnie is his friend.
Ronnie is the one who has organised the sponsored walk on 28th April. It is
approximately five and a half miles from Herne Bay to Whitstable. We are
starting at the bandstand at about 10.30am. I am going to walk a few steps at
the beginning, and again at the end. If you are interested in doing the walk,
(go on, just think of all the chocolate you’ll have eaten over Easter), then
please email me, and I’ll send you a sponsor form. Or you can sponsor me at www.justgiving.com/nicoleschallenge
or just pop down on the day to say hello! Some of us are
dressing up (Ronnie is dressing as Snow White) - that’s got to be something to
see! Thank you to those who have already sponsored me.
While I’m talking about fundraising,
just to remind people to please keep their empty ink cartridges. I have loads of
freepost envelopes that I can send to you if you have any empty cartridges.
Each cartridge is worth £1 for the Silver Lining Appeal. Just email me with
your address.
Wednesday was college again - that’s
three weeks in a row. That has to be a record for me! I actually handed in more
coursework. I was also given more coursework to do. That will keep me busy over
the Easter hols.
On Thursday I went into college again.
Sally, my support teacher, helped me start off my essay on ‘Othello’. I’ve been
given the story on cassette, but it sounded like it’s in a foreign language. I
just didn’t know where to start, but I understand it a bit better now.
Afterwards I met Nic, Rach and Char in town. We went to Wetherspoons for lunch.
It was nice being out with them. We’re going to do it again in a few weeks’
time, because I should have some exciting news. I’m sworn to secrecy for the
moment though! Keep visiting to find out! But don’t worry, I’m not pregnant!
I have a favour to ask. Please log onto
the website below and sign the petition to stop animal cruelty. Thanks.
Linda’s washing machine broke last week,
so Nanny took some of her clothes home to wash. When she took them out of the
machine, she noticed that a pair of my cousin’s jeans had a rip in the knee, so
she stitched it up. Only problem was, they were designer jeans, and the rip was
meant to be there!
I think I have a quiet week next week. I
can’t believe I haven’t been to hospital for three weeks! But Sshhh, I don’t
want to jinx it. I have a blood test on Tuesday, so I’m not looking forward to
that. I’m going to hand deliver my sample to the lab myself this time!
Please sign the guest book before you
leave. Any Easter jokes would be appreciated.
Love Nicole xxx
*****************
Friday
23rd March 2007
Last Saturday Julie came round. She
works with Lee and had a Chocolate Party a few weeks ago. It raised £125 for
The Silver Lining Appeal. Thank you very much, Julie.
We went to Linda’s for Mother’s Day on
Sunday. We had a roast dinner, and then I fed one of their lambs. They’ve got
31 now. Most of the sheep who have twins or triplets end up loosing one of
them, so they’ve lost quite a few lambs this year. I fed an 8 day old lamb. He
was really cute. I held him on my lap too. He was really light and
well-behaved. Molly and Daizy sniffed round them, and Daizy tried to drink the
milk from the bottle I was feeding it with.
On Monday I had my eyebrows waxed at
Gilly’s. It was quite sore this time. Normally it doesn’t hurt much at all, but
I think my skin must still be sensitive from the chemo. They are a perfect
shape now. They’re still quite fine, so they need to just get a bit thicker,
and they’ll be back to normal.
On Tuesday I had a blood test to check
the injection level again. Only one problem, no Hickman line! It meant going
into my hand. One of my community nurses, Heidi, came to the house to do it. I
was really well behaved. I didn’t cry or make a fuss. I just let it happen.
It’s the best I’ve ever been. I still hated it though. My hand went a bit shaky
afterwards, and I wanted to cry with relief!
I also got an invite to a very exciting
party! It’s to a Chocolate Ball at the Dorchester Hotel today in aid of CLIC
Sargent. I was invited to the first one two years ago, but I was too ill to go.
I was gutted, so I asked if I could go this year. I didn’t think I would be
able to go because it was getting nearer the date of the Ball, but on Tuesday,
Maureen, from The Marsden, rang to say she had got us tickets! See, it pays to
be cheeky sometimes, and like they say, if you don’t ask, you don’t get! It was
then a mad panic of who would be able to take us, and what to wear!
Wednesday was college again. I had to
answer some questions in the lesson this week. I hadn’t been listening though,
and got a bit stuck! I’ll have to concentrate from now on! When I got home
Heidi very bravely phoned us. She had dropped my blood sample off at the
hospital on Tuesday night for the porter to pick up and take to the lab. It has
to be tested within a few hours of being taken, only the porter didn’t pick it
up that night, but the next morning, and just left it on the side at the lab
and didn’t even let anyone know it was there. When they looked at the date,
they said it was too old and wouldn’t test it! Heidi was so angry, as Mum and I
were too, and put in an official complaint. I’ve told them they’re not getting
any more blood out of me. Dr Martin wants me to have a blood test every two
weeks. Fat chance! If they’re not going to look after my blood properly, then
I’m not giving it to them. People don’t realise what it takes for me to give
blood, and how petrified I am of needles.
I went into college again on Thursday.
I’m having a few extra lessons with Sally to catch up with the coursework. I
finished another essay. Only three more to go!
My next fundraiser is a sponsored walk
from Herne Bay to Whitstable on the 29th April. It starts at 10.30am at the
bandstand. If anyone is interested in joining in, please email me at nicole@c-h-o-c.org.uk
and I’ll send you a sponsor form.
If you are able to, please sponsor me on my Justgiving page below. The
total is quickly rising - I’ll tell you how much it is so far next week. Thank
you.
www.justgiving.com/nicoleschallenge
Thank you if you stopped by Amelia’s
site last week and left a message. She passed away on the 17th. She is the
forth ‘Pal’ to pass away in the last 6 months. I have added 21 links to my
Links page, including ones to most of the Pals’ websites.
I am off to the dearest square on the
Monopoly board for the Ball tonight. I’m sure I’ll have lots of showbiz stories
to tell you next week! I’m back to being a diva!
Love Nicole xxx
*****************
Friday
16th March 2007
On Friday night my friend Hilary held a
poetry evening in Broadstairs. She had made a book of poems with her friends,
and they read them out. There was also a raffle and drinks. Evelyn and David
came with us - thanks David for driving. I gave a speech about The Silver
Lining Appeal. It wasn’t very good because I wasn’t prepared. I was only asked
on the night if I would do it. I didn’t mind though because there weren’t too
many people there. I took along some of the poem books I had made a couple
of years ago. I managed to sell a few of
them, and sign some too! The night raised £164.20. Thank you Hilary and John
for organising it.
On Sunday I went to a concert at The
Winter Gardens in Margate. It is held every year by Ex-Royal Marines. Keith
Deary read about me in the paper, and got in touch. Most of the money goes to
their Benevolent Fund and the Deal Memorial Bandstand Trust. The rest gets
split up between charities nominated by band members. Keith suggested The
Silver Lining Appeal and asked me to come and receive a cheque for £500. There
were 131 people in the band, and 1,300 people in the audience. We were sitting
in the front row. David and Evelyn came with us to this too. It was brass band
music which wasn’t my kind of music, but I enjoyed the night out. I recognised
a few of the tunes. The best one was probably the Star Wars theme. They played
seven pieces, and then there was a break. My back was really uncomfortable, and
my foot felt like it was swelling up. It was quite hot in the room too, so I
had to go out for some fresh air. I had a bit of a stretch, and then went back
in. The band played another seven items, then they handed the cheques out at
the end to the charities, and those receiving the cheques gave a speech. Some
of the other charities who received donations were the Warwickshire and
Northhamptonshire Air Ambulance, Deal Social Club for the Blind and St John’s
Ambulance.
I spoke about The Silver Lining Appeal
and what I’m raising money for. I always forget to breathe when I’m speaking
because I’m concentrating on what I’m saying. My voice went wobbly at the end,
and I sounded emotional. I wasn’t though.
I had just run out of air! After my speech people were coming up to me
and giving me money! I got another £100. A lady took our address and said she
would send us a cheque. Thank you to everyone who was involved that night, and
especially to Keith for getting in touch with me. We got back quite late, but I
was really pleased with how the night had turned out.
I got my scan results on Monday. I knew
they were going to be good by the sound of my oncologist’s voice when he said
hello. My tumours have remained stable like the scan in December. They might
have even shrunk a tiny bit, but they have to shrink a lot for them to say
there’s shrinkage, so they just say stable. I’m very pleased with those
results. It was what we were hoping for. He cut out four of my tablets which
I’m pleased about too. I’m down from twenty a day to just four, plus any
paracetamol if I need it. When we were talking about my tablets, and what ones
I’m on, I suddenly remembered I hadn’t had my injection that morning! I used to
have it at 3pm, but when I got the clot in my leg, they changed it in hospital
to 10.30am. We’re just not used to the new time yet. It was after 2pm by this
point! It doesn’t matter too much if it’s late. I’m going to try a new tablet
for the pain in my hand. The tablet I tried a month ago hasn’t helped at all. I
get a sharp shooting pain in my right hand and fingers. It feels like they’re
being sliced open. The tumour at the top
of my spine pushes on the nerves and because the tumour won’t shrink, the pain
will always be there, so we have to find a way of making it less painful.
Surgery, to cut away the tumour, is too risky. He also said I can start
exercising as soon as I want. I thought I had to be careful with the clot still
there in my leg, but he said it might even help it, and it would decrease the chance
of more clots if I’m more mobile. Also, now that the line is gone there is less
chance of a clot forming. I can’t wait to get back to the gym. I didn’t ask how
long I need to keep having the anti-clotting injections, because I know it’s a
long time. I want to go through each day thinking, this could be the last one,
rather than knowing I have to have them for 6 months, and counting down the
weeks. My next scan is booked for June. I’m also having a kidney test and echo
scan then to check they are repairing properly.
Mum made roast potatoes when we got back
from hospital. They were hot, greasy, fluffy and crunchy, and didn’t taste of
mud! Lovely! I’ve now finished my survey of who does the best roast potatoes.
I’ve decided that pig fat is better than goose fat, and Mum does the best ones.
It had to be her didn’t it? She won’t make them again otherwise!
On Tuesday I went to the dentist. I
needed two fillings. I decided to have an injection for the filling in my front
tooth, because Mum said it would hurt more than the other filling in my bottom
tooth, which I had without an injection. She used to be a dental nurse, so I
trust she knows what she’s talking about. I had a numbing cream held on my gum
for a few minutes - it tasted like strawberries or bubblegum. It didn’t work
though. The injection hurt, and my mouth felt really fat afterwards, but I
didn’t feel the filling at all. The other filling didn’t hurt much. The drill
only hit the nerve a few times, but that’s better than another injection. My
mouth felt horrible for hours. My nose and cheek felt like they were double the
size. The girls came in the afternoon. I haven’t seen them for a while due to
being in hospital. I had injection number 100!
I received the cheque from the lady I
met at the concert. It was for £500! I was totally shocked. Thank you so much
Christine.
On Wednesday I went back to college
after 6 weeks off! It felt like I hadn’t been away. A lot more people have
dropped out now. It’s a shame because it’s less than 3 months until the exams.
I got my grade for the presentation I did on Demelza House in January. I got an
A*! That’s my first ever A*! I’m really chuffed with that. I still have some
coursework to catch up on, but I’m not that far behind everyone else. I should
be at college every week from now on.
I’m feeling quite good this week. I’m
not as tired or pale. I’m slightly less moody too! Only slightly though. My leg
is back to normal. I still get the odd twinge in it, and I’m paranoid about
getting another clot. I’m always getting Mum to check what colour my leg is,
and feeling to see if it’s got fatter. It’s still a bit swollen now, but that
will take time to go down. I’m having an ultrasound in a month’s time to check
things are ok.
Mum noticed I’ve started to get bald patches
again on my head - only on one side though. I don’t know why, but hopefully it
will grow back again soon. My nails are horrible now. Two of them have snapped
off half way down the nail. I hate having short nails. I have ridges and lines
on them too. It’s from each round of chemo.
Please visit the website below and leave
a message. Amelia is 4, and has been fighting Neuroblastoma since she was 2.
Nothing more can be done for her as her little body can’t tolerate any more
treatment. www.ameliaprice.com
Thank you, Colin, for the red nose dog.
He’s really cute.
I’ve had some very generous donations on
my Justgiving page this week from people who came to the concert on Sunday.
Thank you very much if you have donated. I will give you an updated total next
week of how much I’ve raised so far. It’s over £6,000 now. I hope to tell you
about my next fundraising event too.
This Sunday we are going to Linda’s for
Mother’s Day. She’s just had three sets of triplets and four sets of twins.
I’ll explain next week. Monday I’m getting my eyebrows waxed, and Tuesday I
have a blood test. Wish me luck!
Love Nicole xxx
*****************
Friday
9th March 2007
It was so nice to sleep in my own bed on
Tuesday. I think Mum was even more grateful though, because her bed in hospital
was really uncomfortable. It’s a chair during the day, and then it pulls out as
a bed at night. Mum says it’s like sleeping in a coffin. The mattress, if
that’s what you call it, is really hard, and you have high sides by your face,
which are the arms of the chair. Mum’s feet were dangling off the end because
it wasn’t long enough. No wonder she had a migraine and several headaches while
we were staying there!
I didn’t get much of a break from hospitals,
because I was at the Marsden on Wednesday for an MRI scan. We didn’t need to be
there until 1.45pm, but transport picked us up at 9.30am. Luckily we know to be
ready. We arrived at 11.15, so we were quite early! We checked in at the
children’s ward, and then went for lunch. We bought this week’s OK! Magazine
and sat and read that until it was time for the scan. When we got to the MRI
unit, they said the children’s ward had been trying to find us, because I
needed to have a cannula put in. They thought my line was still infected and
didn’t want to use it for the dye. We explained we had had a clear test back
and it wasn’t infected. Mum had to speak to one of the doctors on the phone,
and they agreed they could use the line after all. Phew! Amazingly I didn’t
cry. Normally when I get told unexpectedly that I need a needle stuck in me, I
can’t control myself, and bawl my eyes out. I didn’t this time. I must be
getting better! Or I’m just too tired to argue at the moment. They also said on
the phone that because my line kept getting infected, they could take it out
the next day! I was a bit shocked because I was hoping to keep it in a bit
longer to get the last few tests out of the way. I know I have a blood test
coming up next week. I went in for my scan at 2pm. Mum told me to think about
whether or not I wanted my line out while I was having it done. I don’t know
why but I couldn’t lie still this time. Normally I’m quite good, but I just
felt restless. When I was allowed to move, I didn’t need to, but when I had to
stay still, I needed to move. Towards the end I started to fall asleep. I
stayed much stiller, until I would jump awake. The scan wasn’t as long as it
normally is - only about 40 minutes.
After my scan we went back to the
children’s ward to talk to a doctor about taking my Hickman line out. The only
reason they keep it in for about 3 months after treatment is because there’s a
waiting list. They had a cancellation for Thursday, so said it could be done.
We got transport at 4pm, and were home just after 5.30pm. The more I thought
about the op that night, the more I wanted it done, and knew it was for the
best. Without the line, I can’t get any more infections. That hopefully means
no more stays at Ashford!
I didn’t get a lie in on Thursday either.
I had to be awake at 7.30am to eat breakfast, because I had to stop eating at
8am for the operation. Transport came at 9.45am. It’s really annoying because
you never know what time they are going to turn up. Years ago someone phoned
the night before to let you know, but they don’t do that now. We got to the
hospital at 11.30am. My operation wasn’t until 3pm, so we had a bit of time to
wait. I saw a doctor, then an anaesthetist. He agreed to put me to sleep
through my line. I had to take my last sip of water at 12noon. Mum went to get
lunch. She bought a salad because she knew it didn’t have a smell, and I
wouldn’t want any of it. Annoyingly though macaroni was on the menu! The
Marsden do the best macaroni. They melt cheese on the top, so it goes chewy. I really
wanted some. I don’t cope well with no food. Then I smelt the chips cooking in
the children’s ward. It was agony!
I was called for my op at 2.30. I had to
put a gown on when I got there. The anaesthetist asked to see my lines. Before
I knew it I started to feel funny. I didn’t know he had already started putting
the anaesthetic in. It seemed to take ages, and started to taste horrible. I
said, “I’m going,” as everything got really fuzzy, then a second later I was
asleep. I always make sure they know I’m still awake, then say, “I’m going”,
just before I go. I don’t want them operating while I’m awake! I don’t remember
anything after that, but Mum said I pulled my knees up to my chest. It’s a
natural reaction that people do. The op only lasted about 20 minutes. They said
I had been given a lot of anaesthetic because I tried to fight them off. I
don’t remember that. When I woke up at 3.45pm, my hand was a bit sore. A
cannula had been put in, so they had IV access. My side wasn’t that sore,
because they had used local anaesthetic round the area to make it less painful
for when I woke up. I thought I would have a sore throat, but I didn’t. I was
really tired, and could taste anaesthetic. The chef had macaroni ready for me.
It was nice, but I wasn’t really in the mood. I had the cannula taken out, and
we left to get transport at 4.30pm. We got home at 6.30. I’m glad I’ve had it
done. It’s now out of the way, and I don’t have to think about it any more. I
have butterfly stitches over the wound, and a bandage. It needs to stay on for
a week, and then I can take it off and bath properly!
Tonight I am going to a charity event in
aid of The Silver Lining Appeal. I have another charity event on Sunday. I get
my MRI results on Monday and then I have the dentist, college and other things
next week, so I’m not really getting much chance to rest!
Love Nicole xxx
*********************
Tuesday
6th March 2007
I’M
HOME!!!!!
Warning: it’s a really long entry and
very stroppy!!
On Friday 16th February I had really bad
heart burn again. We found out that it was a side effect from the antibiotics I
was taking for the ‘suspected’ infected Hickman line that the Marsden thought I
had before I left. I don’t think I had one. It was only because it was slightly
red around the wound, but no redder than usual. Mum had to change the bandage
everyday and put a special medicated bandage back on. She’s a better nurse than
some I’ve come across.
On Saturday, I finally went through all
the presents I got for my birthday. I started writing my thank you letters, but
didn’t get a chance to post them before going into hospital again.
On Sunday 18th it was Nicola’s 18th
Birthday. I went to her house where she had friends and family round. The other
girls were there too. It would have been the 3rd anniversary of being in
remission for the second time, but now I’ve just started remission again for
the third time. It’s really annoying, and feels like I’m back to square one.
Monday is where the next drama starts. I
woke up with a sore right hip and knee. It was getting worse during the day,
and by 2pm my leg just exploded with pain. I’ve never felt anything like it. I
knew instantly it wasn’t one of my usual spasms, and it felt like a blood clot.
When Mum looked at my knee it was a mottled blue colour. I kept getting spasms
in it which was making it worse. Mum phoned the nurses, and they said to take
me to The William Harvey. I couldn’t stand on my leg, and I was sobbing in
pain, so Mum phoned for an ambulance. She explained the situation and that we
thought it was a clot. They asked if I was breathing, and she replied yes. They
then said they didn’t class it as an emergency. Mum didn’t want to drive 45
minutes in the car with me in case I got worse. She asked what to do if I felt
really ill on the way there, and they said to pull over and call an ambulance.
Honestly, it makes you want to scream! Well I was screaming because of the
pain. Mum then had to struggle getting me out of bed into my wheelchair, down
the ramp outside and into the car. I hadn’t got dressed yet, so I was wearing a
blue nightie with a mouse on, saying ‘midnight munchies’, a pair of yellow
three quarter length pj bottoms, a pink cardie, a pair of black fluffy socks
with pink toes and heels, and my wig. I looked like a right hippy, but I didn’t
care.
We arrived at the hospital. By this
point my leg was swollen. I’d hurt my ankle getting out of the car, so my leg
hurt even more. I was seen by a doctor who I haven’t met before. She asked Mum
if I was in pain, so Mum looked at me and asked if I was in pain. I replied
yes, but the doctor didn’t seem to take this as a hint that I could answer my
own questions and continued to ask Mum, how old is she etc. That really wound
me up, especially as she was asking irrelevant questions like how many tumours
I have, and all my history. Surely she could have read my notes. She didn’t
seem to be bothered that I was saying it was a clot in my leg. She then spent
ages testing my reflexes. She then asked Mum if I was wearing a wig. What the hell
that had to do with anything, I don’t know. I had to bite my lip the whole time
she was in the room. Then one of the last questions she asked was if I had any
siblings. Mum replied a brother, and then the doctor said, “The same father?” I
was so shocked. I could be dying of a clot, and she was asking if my mother was
a tart! (She’s not by the way.) She rather wisely left after that. Another
doctor came in and asked Mum a question, and then turned to me to ask the same
thing. The doctor took the hint and asked me the questions from then on.
I was sent for an x-ray, but that didn’t
show anything. The blood results showed there was a clot though. Everyone was
confused because I’ve been on anti-clotting injections everyday since the clot
in my arm in December, and they were supposed to prevent another one. I had really bad heart burn again. I had to
take the tablets four times a day, so I panicked that I would get it all the
time, but luckily I didn’t. I had some liquid Gaviscon. It’s amazing stuff! It
worked straight away.
On Tuesday the doctor measured my legs
to see how much difference in size there was. She then drew marks on my leg so
that each day she could measure to see the change. I had an ultrasound of my
leg. It hurt when they pushed on my leg. That revealed a clot from above my hip
to my knee! No wonder it hurt so much! I was started on a higher dose of a
different anti-clotting injection. I had been on the recommended dose of the
other one, so no-one knows why that didn’t work. And I’d had 79 of them by this
point - and counting. I had to have a blood test to check the level of my
anti-clotting gene, but they couldn’t take a sample from my Hickman line
because that had other drugs put through it, and they needed a pure sample. It
meant going into my vein! I wasn’t happy, but knew it had to be done. I also
had an ECG in the afternoon because my heart kept racing for no reason.
Wednesday was a quiet day, no blood
tests or scans. Linda and Nanny came to visit. I was told I needed another ECG
because they had lost my results. What a surprise!
On Thursday I had a scan I’d never had
before, called a VQ scan. Before we went for the scan they said I might need a
cannula put in. I got the nurses to check if I could have the dye put through
my Hickman line, and they said yes. I was then relaxed until we got into the
room and the man started explaining what would happen. He just happened to slip
into the conversation that he would inject me in the arm. I said no, and he
said, “What, don’t you have veins in your arm?”, and to which I replied no
again, then burst out crying. We explained that we were told they would use my
line, and he said he didn’t like using the lines. He then went away, came back
and said sarcastically, “We only use them in special cases, and we’ve decided
you’re a special case”. I didn’t like him after that.
I had to breathe in nuclear medicine
through a mask. I didn’t like that because it reminded me of being put to sleep.
Pictures were then taken of my lungs. This was to check that the clot hadn’t
moved to my lungs. I was then given a radioactive dye through my line, and more
pictures were taken. In the afternoon I had an ultrasound of my kidneys,
spleen, intestines and other organs. Luckily no clots were found there. More
blood had to be taken from my hand to check that the new injections were
working. I asked for the same doctor who did it on Tuesday, because he didn’t
hurt that much. I did the same thing I did then, which was try to sleep before
he came in, then stay in a sleepy state and remain calm. My heart was pounding
though. It was soon over. The results showed they were working, and they didn’t
have to change the amount to give me.
On Friday (23rd) the nurse was possibly
the worst I’ve ever had, and irritated me like you can’t believe! She didn’t
have a clue what she was doing, and kept asking us what to do. She asked how to
use my Hickman line, when she is supposed to know that. She asked how to take
blood, and then 3 hours later came back and asked what she had taken the bloods
for. The final straw for me was when she put the blood pressure cuff on me, and
stood for 2 minutes. Nothing happened, and she asked if it had been working all
day. I suggested she turned it on. She did, and amazingly it worked! I also got
told I would have to stay in hospital for another week. I wasn’t having a good
day! Evelyn came in the afternoon. She had printed off my guest book messages
to read to me.
On Saturday Linda came over to sit with
me, while Mum went home to get some more stuff. I was really jealous that she
got to see the dogs. I nearly had a blood transfusion because of a wrong
result. My blood results said my Hb was 5.1. I have never been that low before,
and I felt fine. Normally when I get below 8.5 I feel awful. I told them that I
was not 5.1, and got them to take another sample. That came back at 9.8. So it
meant no transfusion which I was pleased about. I’m glad I stuck to my
instincts. While we were waiting for the results a doctor came in to my room to
ask me what my blood group was so he could order blood. I told him O Rhesus
Negative, but not to take my word for it, and to check my file. I just feel you
always have to be aware of what people are doing, and check everything. My leg
felt quite a bit better, and it hurt less to sit on it. I was able to stop
taking painkillers, but it still felt bruised in places, especially my hip.
On Sunday the roast potatoes tasted like
mud. I don’t know why I was surprised really. The food drove me up the wall
most this time. There are only so many days you can eat sausages and uncooked
garlic bread and chips.
On Monday Nanny and Linda visited again.
I don’t think anything else happened.
On Tuesday Evelyn came. I had typed up
my column I write for the local Gazette, and she brought her memory stick to
copy it onto. She then took it home and emailed it to the Gazette. I had the
same nurse I had on Friday. Luckily she stayed away from me for quite a lot of
the day. I must have been giving off vibes. I was put in a mood when I was told
my line was growing another bug. I thought I might have been going home because
I hadn’t had a temperature at all - the other antibiotics were working.
On Wednesday I was extremely fed up. I
really wanted to be out by then. Someone called Julie at my brother’s work, had
organised a chocolate party in aid of The Silver Lining Appeal. I had written
the invites for the party, and everyone was going to buy chocolates to raise
money. I was gutted not to go. Plus I could really have done with being at
college. My teacher was going over some of the work I don’t understand. I
wasn’t at college last week, and won’t be next week either because I have my
MRI scan, but after that, though, I should be in every week.
I had another blood test to check the
level of the injections. I think I kicked up such a fuss last week with the
needles that they had worked out a way to do it without them. Take 5 ml of
blood from the line first, and then take the sample. If only that could have
been done last week! I had numbing cream
on my hands just in case the line decided not to work. The full results of the
cultures came back showing that the bug was compatible with the antibiotics I
was having, which means it was probably a contamination in the blood. That was
at least some good news. They took yet more cultures just to check though. My
friend Pam came in the morning with doughnuts, so that was good.
On Thursday I really thought I was going
home. I’d set my heart on it, so I was really disappointed when I was told I
couldn’t. I had to stay in to wait for the results of the blood taken to check
the injection level, and to finish my IV antibiotics. To cheer me up I baked
cakes. They were butterfly cakes with chocolate icing. Quite nice even if I do
say so myself. Nanny and Linda arrived just as I was making them. We gave some
to the nurses and children on the ward. We had to buy our own pint of milk that
afternoon! Mum had said at 9am that there was no milk in the kitchen, and again
at lunchtime. By 4pm we were desperate for a cup of tea, so Mum bought a pint
of milk from the shop downstairs. Just as she came back and put it in the
fridge, the nurse came in and said they had got milk. Grrr!
On Friday (2nd March) I wasn’t happy
again. I really, really did think I was going home, but that wasn’t the case
when the doctors came round in the morning. I had grown another bloody bug in
my line. Dr Newson was a brave man to tell me I needed to stay in over the
weekend. Someone in the morning had taken cultures, but only from one of the
lines, even though I have two. It’s a rule that you take from both of them,
because one could have the infection, and the other couldn’t. We had to let
them know this, even though it seemed like common sense. It was my community
nurse, Sue’s, retirement party, and I was really hoping to go to that. The
party was at lunchtime at Kent & Canterbury hospital. They allowed me to go
because Dr Martin was going to be there, plus lots of nurses. Before we left we
found out the results of the blood taken to test if the anti-clotting
injections were working. Guess what? It clotted! Lots of my samples recently
have been clotting, which makes sense now seeing as the injections weren’t
actually working. Just a pain in the arse, literally! I actually have it
injected in my thigh because it hurts less, but that’s now getting a bit tough
to inject into because it’s been done so much. I’m going to have to find
another place.
We had to turn up to Sue’s party dressed
in not what you would call party clothes. I had a pink tracksuit on and no
make-up! Mum was just as bad. It was great to be out in the fresh air for a
while, and meet lots of people I haven’t seen for years. There was food there,
so I stocked up so I didn’t have to eat hospital food when I went back. Oena,
who left the community nursing team a few years ago for a higher job, made a
speech. I found out a lot about Sue that I didn’t know. She has worked in many
children’s hospitals trying to improve care. She’s had quite a full life, but
then she is old now! Dr Martin also did a really funny speech. He told Sue’s
life story by wearing different hats. The first one was a school hat, then a
nurse’s hat, a colonial hat for when she worked abroad, a posh hat for when she
went to Ascot, a cap for when she did the moonwalk for charity, a babies bonnet
for when she worked in a neo-natal clinic,
and several more. I can’t take Dr Martin seriously now. I will imagine
him from now on in a baby’s bonnet! We stayed to the end, and we brought some
of the food back with us. I was supposed to be back at Ashford for 2.30pm as I
needed another blood test to replace the one that clotted, but they did it at K
& C. Ashford would have had to transfer the sample to there anyway, so it was
the best solution.
We got back to the hospital at 4pm. I
tried to get Mum to take me home but she wouldn’t. If only I could drive. When
the chef came to ask me what I wanted I asked what lunch had been. Only bloody
fish ‘n’ chips! I wanted to cry. So for dinner I had soggy pizza and naff chewy
garlic bread. Yum! We got the results of the blood test by teatime. The
injections are working, and I’m having the right amount. I should think so too.
I’d had 89 of them. I started a new IV antibiotic at night. I was on a drip for
an hour, and 20 minutes after I’d had it, I started scratching and coming out
in spots! It was the first time I’d had this drug. Everyone said it normally
happens with the second dose because they thought I’d had a dose at K & C, but
I hadn’t. It’s just typical me! They decided not to give me another dose in the
night which I was due to have. I took Piriton, and that seemed to help. (I have
to have the name of the drug engraved onto my medic alert bracelet which I wear
for my other allergies. I had a near fatal reaction to an anti-fit drug 4 years
ago, so I have to wear one because of that. If I’d had one more dose I could
have died.) I had a really sore bandage change after the reaction. I wasn’t
having a good night! Where the sticky plasters have been replaced every week on
my Hickman line for 4 and a half months now, the skin underneath is really dry.
The last few weeks’ bits of skin have been coming off with the bandage. I just
want to moisturise it, but I’m not allowed because it might cause an infection
and the plaster might not stick back on. Where normally the nurse would put
their finger on my skin, and gently pull the bandage off, this nurse was just
pulling it, so my skin was lifting up with it. It was the worst one I’ve had done.
The skin around the line is a bit scabby and sore now. I cried a little bit,
but not as much as I wanted to or could have done. I finally got to bed at
12.30am, after they had given me another antibiotic that I’d been on for a week
already.
There is absolutely nothing for me to do
in hospital apart from listen to the radio. They have toys for the little ones,
but nothing for teenagers, and especially for someone who is bedbound and
blind. We had a word with the playleader who said she knew there was a problem,
and we gave her some suggestions about getting talking books and smelly
products and make-up for girls to play around with. She then got in touch with
The Body Shop, Superdrug and other companies who are going to send her free
samples to hand out to people staying. She already had a few products, so on
Saturday I put a face mask on. You had to heat it in a mug first, and then put
it on for 10-15 minutes. I managed to get it all over me because it was quite
runny. I put it on for 10 minutes, and guess what happened? It started to burn!
I washed it off and my neck was really red, and a bit of my face. It was a bit
itchy and spotty. My face started burning up. I won’t be trying that again!
On Sunday Mum went home to get more
stuff. She took my laptop home, and Lee downloaded my emails, then Mum brought
it back so that I could read them. Clever huh? She said that when she went in
the dogs looked really sad. They didn’t get excited; they just sniffed her as
if she was a stranger. That bothered me all day, and I just wanted to get back
to them. Lee has been looking after them, and he would never ever be cruel to
them – he knows he would have me to deal with, and what I’m like if he’s just
eaten the last packet of crisps. It’s just the dogs are used to having people
there 24 hours a day, and always being cuddled, and Lee’s been going in and out
to work and doesn’t have time to cuddle them. He’s not really like that anyway.
I tried to get Mum to agree to bring the dogs back with her, but she said no. I
asked Dr Martin a few months ago, and he said it was fine, but to check with
someone on the ward before they came. There was no-one official to ask on
Saturday night, so I had to forget the idea. I had my favourite for lunch. Mud
roast potatoes! Linda and Nanny popped in again at lunchtime. While they were
still here Keith and his wife came in. He got in touch with me last year after
reading about me in the paper, to say he was part of a band who do an annual
concert to raise money for charity. The main beneficiary is to help people
involved in the bombing in Deal several years ago, and to maintain a war
memorial. The rest of the money is split between other charities. He nominated
The Silver Lining Appeal, and I found out this week they have been awarded some
money. I’ve been told how much, but I’m waiting until the concert on Sunday for
the definite amount. Yvonne my, ex teacher, came half an hour after they left,
so it was quite a busy day.
I tried everything yesterday to get out.
A couple of times I thought I would, but I didn’t. There was a total cock up in
the morning with the blood, and the fact we had the nurse again that I can’t
stand didn’t help matters. We’ve named her ‘Mumbles’, because that’s what she
does. You can’t understand her most of the time. It is a routine that blood is
taken at 6am every morning. I needed to have a sample done to check I didn’t
have any infection before I could go home. Mumbles told Mum that the nurse, at
6am, who had given me my IV antibiotics had told her she hadn’t taken blood.
They phoned the lab to see if they had received any blood for me, and they said
no. When the nurse showed Mum my file and they were looking through it, they
found a sheet where they write each day what’s happened, and it had for the 5th
of March,” took blood”. Everyone was quite confused. They said they would phone
the nurse who had gone home, to ask if she had taken it. Then they said they
wouldn’t because she would be sleeping after her night shift. I was getting
quite angry because I thought I was getting out, and the longer this took, the
later we would get home. They looked at my file again and couldn’t find the
piece of paper they had seen before, but then Mum found it at the back. When
Mum looked at the name on the sheet, it was for the boy along the corridor. It
was my file, but I had his personal details. I would have gone mad if it had
been the other way round. They had to wait until 12 noon before they could take
the blood, because that was the time of my next antibiotic, and the more you go
into my line, the more chance of infection. The blood test took about 4 hours
to come back. They showed that things were going up and down in the places it
should. I had been on antibiotics for 11 days, but they wanted to speak to the
Marsden before taking me off them. They said I could go home tomorrow if
everything was okay overnight. I was leaving whatever happened. Mumbles asked
Mum to clear up some blood she’d spilt in my room because her hands were full,
and then she asked her to go outside to look something up in my file because
she had forgotten to check before she came in to my room. Yet again I bit my
lip.
Today they said they would do another
check of the level for the injections. It has to be done 4 hours after the
injection has been given. It meant we had to stay until 2.30pm, but after that,
I was out of there!! Before we left they said I still needed antibiotics, but
could have it in tablet form. It’s the same antibiotic that gives me heartburn.
Great! The thing is though, the bug is in my line, so when I have IV
antibiotics it gets to it, but if I’m taking tablets it just goes into my body.
I wasn’t going to say anything though. I just wanted to get home. We were
finally in the car at 3.30. I locked the doors, and wasn’t going back. Even if
they’d chased us down the road to stop us! It was so good to be back at home
and with the dogs. I’ve missed them so much. I’m really looking forward to
sleeping in my own bed tonight.
Good news! My eyebrows and eyelashes are
growing back!! Only problem is my eyebrows are growing so quickly Mum had to go
home while I was in hospital to get tweezers! I will have to start going back
to see my eyebrow waxer! I have stubble on my head too! It’s fluffy little
chick hair. I might even show you one day. I think this has grown after my 5th
round of chemo, because I had a 5 week break between that and the 6th round,
and I only had a low dose of chemo that last time. My eyebrows started growing
back a week after I finished chemo, which isn’t enough time, but it was 7 weeks
after the 5th round which is enough time for it to grow. I will give you
regular updates on my hair. I might be using my new hair dryer and designer
hair products sooner than I thought! Bad news, though, is that my nails have
turned a funny colour, and some have split across the nail. It was on the list
of side effects from the chemo, but I thought I had passed that stage.
I forgot to mention in my birthday
column that Linda had a lamb born on my birthday. She lives on a farm with
pigs, sheep and chickens. They called the lamb Nicole, but later found out it
was a boy, so it’s now called Nicky. She’s since had 14 lambs born, but sadly
some of them have died. She’s had two lots of triplets, and several sets of
twins.
Reading back this diary, I’ve realised I
really should slag people off less! Especially if I’m likely to meet them again
in Hospital!
You have no idea how good it is to be at
home. Daizy has got fat, or maybe she always has been, and I just haven’t
noticed. Thank you to everyone who signed my guest book while I was away.
Evelyn printed off the messages and brought them to me in hospital. They
cheered me up loads.
If anyone is wondering where my photos
link has gone, it will be back in the summer with lots of new pics. I had to
take it off because I was running out of web space (don’t really understand the
technical side), and I can’t buy any more space on the internet until I renew
my subscription in July. So just hold tight!
I have my MRI scan tomorrow afternoon at
the Marsden, so it’s yet another day in hospital!
I will update again on Friday.
Love Nicole xxx
*********************
Friday
2nd March 2007
Nicole
is still in hospital. She has another
infection in her Hickman line and has just started on a new course of
antibiotics.
