11 January 2005
I was up around 8am and after having breakfast mum and I walked over to the hospital where I will spend the next few days having my first of fourteen cycles of chemotherapy.
I can remember sitting in the room waiting for the chemotherapy to start with no idea of what to expect. I sat in the chair next to the bed at first fully dressed as I
figured I didn't feel sick, lying in the hospital bed is what sick people do. At around 10 in the morning a nurse brought in the pump ready to start my chemo.
The drugs I will be treated with for the first six cycles of chemotherapy will be Vincristine, Ifosfamide, Doxorubicin and Etoposide. The nurse
instructed me to lie on the bed and proceeded to connect the pump to the Hickman line, for the next few days I will be attached to this pump.
The nurses had provided me with a spare TV and Katrina has loaned me her PlayStation 2 for the next few days to keep me entertained. While the
nurse began setting up the pump to begin treatment I was playing on the PlayStation. The first drug (Vincristine) was injected and it wasn't
long that I went from feeling fine to feeling nauseous and minutes later I vomited. After vomiting I felt better but was given an anti-nausea
drug straight away. The nurse then proceeded to inject the other chemotherapy drugs. The Vincristine is injected once into the Hickman line at
the start of treatment the other drugs will be given on the second and third day of chemotherapy as well. The Etoposide will be injected into the
Hickman line and once injected the Doxorubicin and Ifosfamide are pumped into the body through the Hickman line using an IV pump over 4 hours.
Once the drugs have been pumped into my body I then have bags of Mesna, Sodium Cloride and Potasium pumped into me this is to protect my bladder
as the effects of the Ifosfamide are likely to damage my kidneys.
After vomitting I decided that is was best not to play games that required any concentration so as a result I spent the rest of the day watching
DVDs feeling not too bad I was able to eat meals fine and drink fine but later in the evening I felt tired quite early so mum left early to allow
me to go to sleep.
12 January 2005
Day two and I was awoken early for breakfast and I seemed to eat breakfast just fine, a nurse disconnected the pump after breakfast
allowing me to shower and after getting dressed the nurses proceeded with giving me my second days chemo. I was feeling full of energy
when mum arrived and was able to eat lunch fine, I spent the afternoon writing letters and sending texts to my friends on my cell phone.
I think it was after midnight by the time I went to sleep that night.
13 January 2005
Day three and I started going downhill from when I woke up in the morning. I ate breakfast ok but started to loose energy after having a shower.
In the afternoon mum left and allowed me to have an afternoon nap, I can remember waking up around 3pm which is around the time the nurses change shifts.
While undergoing chemotherapy I am on Fluid Balance, what this means is that the nurses require a record of every liquid that goes into me and
every liquid that goes out this means that I can't just go to the toilet I have to urinate into a bottle and the nurse then measures how much urine
I passed. The smell of urine when you are going through chemotherapy is horrible and I can remember there being no empty bottles in my room and
really needing to go and not being able to find anyone to get another bottle. Eventually I actually went to the reception in the ward and asked
simply because I couldn't find any nurses around.
The results of the Bone Marrow sample taken earlier in the week have come back and it appears the cancer has not spread to my Bone Marrow,
this now makes me at "Good Risk." In the evening Katrina came to visit and at this stage I was so drained of energy I could hardly
say anything. Mum and Katrina left at around 8pm and I went straight to sleep.
14 January 2005
I woke up and could hardly face any breakfast or drink any coffee instead I just wanted to sleep all morning. Mum rang the ward to ask if
I was awake and they rang the phone in my room. Mum didn't want to talk to me, she just wanted to know if I was awake so she could come and visit.
Today I had no chemo running through but there were still bags of mesna running through until 8 o'clock at night. I could hardly eat my lunch
and after lunch I just lay down and watched DVDs. Mum then left early in the afternoon allowing me to sleep. When mum returned the nurse let me
go outside taking the pump with me so I could have some fresh air. It was so hot I didn't stay outside too long. On return to my room my meal was
brought in and I lifted the lid and the smell just hit me so bad that I vomited after this I decided I no longer wanted to eat hospital food and
even picturing the hospital trays in my head was enough to make me vomit. I actually felt bad rejecting the hospital food because they had provided
this for me and this is something our taxes pay for yet here I was wasting it.
Finally at 8:30 the final bag of mesna was pumped through and I was disconnected from the pump, I was required to stay in hospital for the rest
of the night. It was a very long and sleepless night, it was so hot and it was like my whole body was just twitching like my head was asleep but
the rest of my body felt full of energy.
15 January 2005
I woke in the morning still feeling awful, the nurses organised my discharge and inserted a sub cut line in my stomach this is so I can inject
Neupogen into myself. Neupogen is a drug that will boost my white blood cells lowering the risk of getting sick, I will be required to
inject myself with Neupogen every day for the next ten days. Before being discharged I was given some simple instructions to follow in the days
following my chemo:
After being discharged I spent the rest of the morning at Ranui House and waiting for our Taxi to arrive. The most comfortable place to be was in the foyer as this area didn't get much sun so the temperature was bearable. The Taxi arrived and took us to the airport, a Corporate Cab we travelled in a Holden Statesman it was very comfortable and great with the Air Conditioning on. Stepping out into the airport car park we really felt the heat it was 36 degrees, I hadn't experienced temperatures like this since my trip to Los Angeles when I was 17 and right now there was no way I wanted to stay outside for much longer. We finally boarded our flight at 2:30 and it was a long and painful wait, waiting for the plane to take off. I started to feel better once we were in the air but the flight was very uncomfortable, we were in a 16 seat plane and I had to wear a face mask the whole time in case I picked up anything from anyone else on the plane. Wearing a face mask made it hard to breathe and added to the uncomfortableness of the flight. We landed in Invercargill at 4pm and it was a relief to be home the temperature, of 18 degrees, was much more bearable. My parents took me back to their place and I will stay there for the next few days until my white blood cells are normal, it is a bit hard for me to be in my flat when I am sick as I am not capable of cooking myself a meal or doing housework and cleaning up after flatmates. At tea time I managed to eat a small amount of food, dad mashed the potatoes especially for me since it was easier to eat mashed potatoes and I had one chop and no other vegetables this is all I could eat. Dad took me down to my flat later in the evening so I could say hello to Aimee as she was the only person home and I could collect my mail. I went to bed at around 10pm and stayed in bed until lunchtime the next day.
16 January 2005
I felt really run down still and just spent all day resting around the house, the
district nurse came and made sure I could flush my Hickman ok and inject myself with the
Neupogen. I started to feel better in the evening and that night it took me a while to
get to sleep.
17 January 2005
I still felt real bad when I got out of bed at lunch time. I started to feel better when I sat down and relaxed at the computer but
then I started to feel worse again when the district nurse came. The district nurse spent an hour and a half making sure I could flush
my Hickman line and change the plugs. As well she organised a housekeeper to help mum out, really the place I needed this was in my flat
but since I was staying with my parents this wasn't possible. After the district nurse left I went around to my flat so that my flatmates
could shave off my hair, one of the side effects of this treatment is hair loss and I decided it was best just to get it over with instead
of watching my hair fall out. It was so good to see everyone in the flat again and talk to everyone. I had so much to tell everyone and we
all had a lot of fun shaving off my hair. I even stayed at the flat for tea but before I even ate tea I suddenly got a real pain in my stomach
that lasted a while, all I had in the flat was a cup of tea and a glass of iced water. I would say the water would have been the cause.
Later in the evening the pain went away.
My hair before it was shaved off later in the day
Having my hair shaved off, first image shows the back of my head being shaved, second image
shows my streaked haircut being shaved off with Beni in the background, the third images
shows the final result with RaeAnne tidying up my hair. I decided to only shave to a number 1
due to the fact that the clippers may cut my scalp and cause infection.
18 January 2005
I woke up feeling much better this morning. At 10am mum and I attended an appointment with Kate Bayston,
the head of oncology at the Southland Hospital. After being examined I was given the good news that
perhaps some of my treatment could be done at home in Southland this would make things so much easier
for myself and my parents. In the afternoon I had the chance to go around to my flat to use my
computer for a while and later that afternon I went down to BP to catch up with my old workmates
to tell them how my treatment is going. I was going to visit Aimee in the evening as she was
at her mother's but I decided against it as I started to feel exhausted. That night I started
having stomach pains and diarrhoea and I have never had it this bad before it was like I was
getting up every hour and worse is I had no idea what I could take to ease the pain.
19 January 2005
I woke up at lunch time and my body felt exhausted and my bones were aching. During the afternoon
I went back to the flat briefly to pick up more mail and use my computer. I spent the evening at
home resting and then I started to feel cold I complained about how cold my parent's leather recliner
chair was and it was at this point that mum thought I must have a temperature. My temperature showed
37.8, 0.2 degrees below the dangerous level but mum and dad decided not to take any chances and at
11 o'clock that night I was in the Emergency Department where I ended up waiting two hours before
they finally admitted me. None of the Doctors or Nurses in the A&E department at Southland Hospital
knew what a Hickman line is and they had to get someone down from the medical ward to take blood off
my line. The cancer patients at Southland Hospital do not usually have Hickman lines. The antibiotics
were finally started at about 1:30 in the morning and all through the night I was woken up.
20 January 2005
At 7am I was awoken by a nurse to tell me I that he would be looking after me today and then tried to
force some breakfast into me I just told him that I wanted to sleep. I had doctors come in and see me at
9am once again waking me up and then after finally getting back to sleep I was dragged down to the x-ray
at 10am so an x-ray of my sinuses could be done as I have mentioned a bit of blocking in my nose.
At lunch time I had some food put in front of me and I couldn't even look at it, even though the food
was in different trays to those ones at Christchurch Hospital it was still hospital food and it made me sick.
I tried sleeping all afternoon but with mum and grandma coming into visit this was interrupted.
In the evening I complained to the nurse while mum was visiting about how it was impossible for me
to eat hospital food. Mum asked if it were ok to bring in food that could be cooked in the kitchen
microwave, the nurses response was that there is no way they can allow patients or visitors to
"take over the kitchen" and what it would be like if everyone used this small kitchen
and that I shouldn't be so fussy and just eat the hospital food. I explained how the smell of
hospital food makes me vomit and the nurses response was that I should just open a window since
I was lucky to be in a room where the window can be opened this is not possible in the negative
pressure rooms. I was given a list of food that it is safe for me to eat while I am neutropenic
and told it is possible to have food brought in provided it is on the list and with hot food it
must be straight out of the oven wrapped in foil. While being neutropenic I am not allowed certain
foods such as salads and fruits like apples and grapes unless I peel off the skin. I am allowed
biscuits but only if they are fresh out of the packet, an hour after opening the sealed packet
and the biscuits in that packet are no longer safe for me to eat. Foods that sit on a hot cabinet
like pies in a bakery I can not eat unless the food has come straight out of the oven. I am allowed
takeaways such as fish and chips, KFC, McDonalds but for some reason not Pizza Hut or the Potato
and Gravy or salads from KFC. I also assume that I am not allowed Subway due to the way it is served.
21 January 2005
I was awoken many times through the night to have antibiotics and in the morning once again unnecessarily
woken up. Doctor Bayston came and saw me again in the morning and delivered the bad news that I would have
to stay in hospital over the weekend as my neutrophil levels were still too low. I explained that I
would be better off at home since I could get better quicker if I was able to sleep something I
was not getting in hospital. I was told that I could go home each night for tea so that way
I was given a break from the hospital each day. Another blood test was taken to check my neutrophil
levels once again. The dietician came around about my eating and allowed me to have food brought
up from the hospital cafeteria such as cheese rolls and mousetraps for lunch. At 4pm mum came
and took me home for the evening and I was able to eat a good tea of pork chops and vegies much
nicer than hospital food. I stayed at home until later in the evening when I was required to
return for my next round of antibiotics.
22 January 2005
Another day in hospital I was given the results of the previous day's blood test and my neutrophil
levels are now high enough that I can go home only this won't be happening today as there is no
doctor available at the weekend to discharge me. I had a visit from Aimee and her mother, it was nice
having one of my friends come visit me and have a good laugh. While having a shower I suddenly
noticed hair on my body was just shedding at a very fast rate, at this point I still had the
remaining hair on my head since my head was shaved using a number 1 clipper. I gave a bit of hair
on my head a pull and a heap came out I knew it was a matter of now only weeks or even days and I
would be bald. It also then occurred to me that I never had a shave this morning, normally by now if
I didn't shave it was be very uncomfortable and I would want to have a shave but obviously the
regrowth of hair wasn't coming through anymore.
24 January 2005
After being in hospital since Wednesday night, it is now Monday morning and finally I am able to go
home as there is a doctor available to discharge me. For the next week I will need to continue on oral
antibiotics. I rang mum to ask to be picked up only it wasn't possible for mum to pick me up until around 3.
When mum arrived we found our prescription wasn't ready and had to wait nearly 2 hours, I was I told I
could go home at 9 and it took until 5 before I left the hospital, I think I read just about every article
in the paper that day.
During the evening I managed to catch up with my flatmates Matt and Aimee. Since starting my treatment the
future of me staying in my flat has been uncertain, initially when I thought the treatment would last just a
few months there was no doubt about me staying on in my flat. When I learned the treatment would take
nearly a whole year I still wanted to continue living in my flat when I was home in Invercargill but my
parents wanted me to stay with them as they were concerned I would be too sick to live in my own place. There was no way I wanted to give
up my flat, I was the main tenant on the tenancy at the time, I was the one responsible for the bills and
I was living in a really nice house with great flatmates. However after just one round of chemo I could see
that I wouldn't be fit to live in my flat. So instead of giving up my place in my flat a decision was
made for me to remove my personal possessions from my room and allow one of Matt's friend to take my
place in flat with the agreement that I can return to the flat once my treatment is complete.
25 January 2005
Mum and dad bought a laptop computer that I could use while I am in hospital this will
help me take my mind of things while on treatment. When I went around to the flat Matt
noticed how the back of my head was getting thinner obviously from having my head rub against
the pillow when I sleep.
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