On Friday, 31 July 2015, I commenced my
chemotherapy for Hodgkin Lymphoma. Koen
made me breakfast (above).
I blow-dried my hair a bit, because I
thought it might be my last chance for a while. I wore a nice Marimekko tunic
to show the cancer I was not quite ready to give in and wear the Tracksuit
Pants of Capitulation.
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Feigned insouciance before my bone marrow
biopsy- really I had no idea why I was having it
and why it was important.
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I arrived at the day oncology unit at Royal
Melbourne Hospital at 9am and the day began with a bone marrow biopsy to check
to see if there was any cancer in my bone marrow, which would have apparently
been a big problem, like certain-death kind of stuff. I kind of forgot
this later on when the results came back, and couldn't understand why my
parents were weeping with relief. For the biopsy, the doctors were worried
about the state of my lungs, so while they certainly loaded me up with local
anaesthetic, they didn’t sedate me, which is the usual practice. I was quite
aware as the doctor ground a large hollow biopsy needle into my pelvic bone. It
was kind of disturbing.
Then I had to wait my turn for a CT
scan. I was prepared for the scan by
being made to fast and drinking a large quantity of aniseed-vomit-flavoured
drink which 'gives better pictures' or something. I’ve had to drink this drink a few times over
the course of my treatments and for some reason it’s my Waterloo, my Achilles
Heel that brings me to tears, reduces me to a sooky, resentful mess. One day I was in the waiting room suffering
through one of these Godforsaken drinks and I watched in disbelief as another
patient, an elderly Greek lady, slammed down the evil drink like it was the most
delicious milkshake. But for me, the
drink took over an hour; I was perched in a hospital bed in the oncology day
centre as the lymphoma coordinator, social worker and various other health
professionals dropped in to make their introductions and I progressively felt
more revolting, and hungry as I was loaded up with pamphlets, business cards
and handshakes.
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| Drinking the evil drink and being really stoic about it. |
When it was my turn, I was wheelchaired
(once you get into the hospital matrix, at a minimum you are pushed around in a
wheelchair, and often conveyed in a bed even if you walked in to the ward 5
minutes earlier) down to the bowels of the radiology department at RMH, for the
CT scan, which is a science fiction-like procedure. You lie down on a trolley
and are injected by a little robot operated by the radiologist in a booth, with
the radioactive fluid, which lights up any cancer areas. After this Tron-in-your-veins operation, I
was sent up to the ward. It was my first time in a public ward in an old part
of the hospital, and to boot it was a mixed room with minimal privacy. I threw
a bit of a (silent) princess fit. Really
I was anxious about having no privacy in what was going to be potentially a
horrible experience. This unwelcome
development just all added to the layers of horribleness the day was taking on.
(Although anyone else who has experienced the old parts of the hospital may see
my point - it has a strong Soviet-era feel with lots of old metal furniture,
grey curtains and dreary green lino). But vanity should be left at the door
when you enter a public health oncology ward. Also, I discovered, you should
abandon hope of good food, or a real mug for your tea (bring your own, and your
own tea bags too if you have special tea needs).
I was starting to feel pretty seedy by this
point. Whoozy. I hadn't eaten, and my mouth was so dry. Then the day went
nuclear. Ms R (the specialist Lymphoma
support nurse) turned up and Hunter asked her some questions about staging
(Hunter was concerned because we hadn't been told what stage my Lymphoma was). Ms R casually and bluntly dropped that it was
Stage IV but that with Hodgkin Lymphoma, 'stage is not indicative of
prognosis'.
I don't know if you know much about cancer
staging but there are 4 basic stages - no stage 5. You want stage 1 or 2 (or as
I pointed out to Dr M, Stage 0). Even if Hodgkin Lymphoma is one of the few
weird cancers where Stage 4 is not a death sentence, you don't want that.
Putting the stage together with that comment from my surgeon - 'it's the size
of a small canteloupe' - we realised at this point that I was in some serious
shit. The room spun for a few seconds.
And then before we could regroup and get Ms R to expand on this information,
another nurse appeared and said its time to go to surgery to have my PICC line
put in.
I was then whisked off to a surgery area
SOMEWHERE in the hospital (the lack of external light in some areas was
starting to make me very confused about time and space) and tended to by a pair
of nurses who specialise in PICC lines. A PICC line is like a semi-permanent
cannula - the tiny but sturdy tubes are pushed into the upper arm, into a vein
and towards the heart. They save the
veins and arteries from damage wrought by the toxic chemo drugs and many other
IV treatments you have during chemo, such as blood transfusions and fluids.
Because I was so dehydrated, the nurses struggled to find a vein. There are
still two puncture marks on my left arm to remind me of their efforts. They
gave up on this arm and tried my right one. One of the nurses had recently
returned from a work trip to Africa. She was a highly trained and skilled
surgical nurse and assisted some surgeons who were training local specialists
in Africa for an NGO.
When it was mentioned that I have barely
eaten all day, cake appeared - apparently the junior doctors were all rotating
into new departments at the end of that week and there was cake to bid them
farewell. Finally a viable vein was found in my right arm, the PICC line was
inserted and I could rest a little until my return to the ward. I really needed
to go to the toilet. I was feeling dizzy and uncomfortable. One of the nurses
accompanied me down the hallway to the nearest loo... the walls started to
move, the ceiling was spinning... the next moment a 'MET CALL' was declared
which is an announcement throughout the hospital PA system ("MET call 5th
floor, oncology day centre" for example). It brings nurses and doctors
rushing in from all over the place, and you're surrounded on a trolley as they
wire you up to a beepy heart machine and take your temperature, blood pressure,
oxygen saturation levels and a million other things. All because I had nearly fainted.
I've never fainted before. I'd never been treated in a public hospital before. It must have sounded so pathetic when I exclaimed "but it wasn't like this when I had the babies at St Vincents!" The St Vincents Private maternity section is like a fancy hotel, but with lactation consultants and a night nursery where a nurse settles your newborn so you can have some sleep in your single room which features a bar fridge. So there was some adjusting for Madame. And I still had my chemo to
begin. It was late in the afternoon, going into evening, when I was returned to
the ward. Then I had an attack of uncontrollable trembling; it's called a
'rigor' (pronounced ‘rye-gore’) and it's one of the symptoms of advanced
Hodgkins Lymphoma. I became incredibly cold and required heaps of blankets;
Hunter and 2 nurses held me and comforted me as my overwrought, exhausted body
wracked and shook for 45 minutes. It eventually passed; I was getting tired; I
had a sandwich. There was a temperature
spike as well. 'She's on the way up' I remember them saying. Straight away I was hooked up to IV fluids
and antibiotics as they were concerned that I seemed to be becoming unwell and
they were still desperate to get this chemo started.
When I think back to it, it must have been
so urgent for my chemo to be started because despite all that had happened, the
nurses now mentioned they wanted to start the chemo. I decided that considering
everything else that had happened, I didn't feel TOO bad, and I might as well
get it done instead of waiting for tomorrow. Hunter had to get home to the
kids. At around 8pm, the nurses started to get things ready to start the
process of administering the first day's medicines for my chemo regimen, which
was called BEACOPP. It was all hooked up
to the IV and ran through the tubes into my PICC line and then my veins. I felt fine and tolerated the drugs. Hunter went home. Afterwards, obviously, I fell deeply and
heavily asleep.
Hunter and the kids came to visit the next day and
considering the ordeal I’d been through the previous day, I didn't feel too
bad. It was wonderful to see Hunter, who looked tired and worried, and a delight to see the kids.
Saskia was still so little she fell asleep on my chest! Adorable. I read
Koen some books and we had special 'sometimes food' snacks. Koen seemed fairly
unperturbed by mummy being in hospital with a funny thing on her arm and
enjoyed the novelty factor, especially the machines and personal tv.
The rest of the chemo proceeded as planned
and was uneventful. The learning curve from here on was about sharing a ward
with other people. Funnily enough, in subsequent stays if I had to share a
room, I was always furious initially, with much made of sweeping the curtains across dramatically. Inevitably I ended up fascinated and engrossed by the
other patients, and even keep in contact with one of them. I think not being
alone makes the time go faster. For this stay, there was a bloke in his 40s
from Wangaratta who could sleep through his IV machine beeping (which it did
frequently) but was otherwise friendly and low-key, although he had many views on football.
The other patient in my
room was a long-termer named Julie, who was very posh. She had daughters in their late teens, one of
whom was in an elite rowing squad. She had a type of Leukaemia and whatever
treatment she had received so far hadn't worked. She was getting to the desperate stage but
carried herself with the utmost dignity and grace, like a retired ballet
dancer, in her pyjamas and beanie, which covered her sparsely-haired head. She had been at RMH often and long enough to know that you should bring your own mug unless you want to drink from polystyrene. A
week or so after I left the ward, I bumped into her in the day centre and she
was obviously back in the civilian world too - looking amazing in a jaunty
beret, cropped jacket, fitted pants and incredible Italian tanned leather knee
high boots. Knowing how ill she was, and how precarious her situation was, I
was impressed with her boldness - no sad trackie pants and baggie t-shirt for
Julie. Oh no! And of course the handbag must match.
By Monday I had done the all-important
first three days of chemo with nothing remarkable to report so this being
public health, I was sent home. I was so happy to be out, I was kind of on a
high. The tiredness and general malaise that chemo gives you hadn't kicked in
yet and luckily I didn't get the nausea, which could be so crippling for chemo
patients. These days, the medication for nausea is incredibly good.
The first round played out ok and the
doctors were happy. They said that they
expected that most of the tumour would be taken out by the first round of chemo
and later rounds of chemo would be ‘just to be sure’. Dr M sent me for a scan to see if the tumour
had been reduced and she seemed happy enough.
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| Little darling slept through the whole thing. |
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