Margy’s Story

The ‘Unofficial Diagnosis’

I was working in Children’s
Hospital, I had just completed 100 km MS Sydney to Wollongong bike ride and I
had never done anything like this before and was pretty happy as I had been
told I would never make it. I was getting my life on track, after a divorce and
my Father and Brother in law had been diagnosed with cancer previous June– it
had been a tough 6 months for my family. 

After working hard at a new job, this
weird thing was happening in my throat that sometimes affected my eating and
breathing. After an initial diagnosis of asthma problems and then reflux, I was
still not getting better. The doctor decided to do a scan and they found a ‘large
mass’ at the base of my throat.

I called my sister, a nurse, and
I said “they have found a mass in my neck”. I thought it was weird because it
was not nice terminology to use talking about ‘something awful that is happening to
other people’. I reassured her everything would be OK, and it must be some sort
of mix up as no family could be that unlucky to have 3 people in 6 months
diagnosed with cancer. 

My doctor tried to ring around to
get me an appointment with various specialists but had no luck. I could tell he
wanted to help me and it was really important. He gave me the phone number to
follow up when I got a chance. This ‘large mass’ was really distracting my
focus from my new job which I loved, so I put the scans in the boot of the car and
decide to deal with them at a later date when I had more time to get my head
around it.

But there comes a time when you
think, “I shouldn’t put this off any longer”. I had an appointment with an Ear,
Nose and Throat Surgeon. I explained I had only just started a new job and only
had 5 days sick leave so if he could cut it out so I could get back to work. I said was happy to bypass all the biopsy
stuff and head straight for surgery to get this thing over and done with and
sorted out. I had arranged to have it done as soon as possible.

On the way home the ENT guy rang
me back to say “call into your nearest chemist for some steroids to start
immediately as we are not going to be able to operate”. He had been talking to
a fellow doctor and they agreed it looks like I might need chemotherapy. I
thought this was unusual as chemo is usually for people who have cancer.

When I started the steroids I
responded within 24 hours and actually felt fine. It was really confusing to
have this life threatening disease and not feel a thing as the lump had started
shrinking and I could eat and breathe almost normally.

I had the weekend to think about
things. I decided I would have like to have the biopsy thing he talked about
and I would like to have it immediately. The ENT bloke rang me first thing on
Monday morning to come to the hospital immediately for one of the quick biopsies.

I got a phone call to present to
the hospital for a biopsy. I wasn’t given a time so I thought if I am going to
end up in ICU I it is good time to get a service done on my bike. So I dropped
it off to the bike shop on the way to the hospital. They forgot to tell me they
had been waiting for me to do the procedure and I had this welcoming party
which I know in public health is not normal. Still nobody said anything about
cancer, so I was still hopeful it was a bad dream. The welcoming party did
nothing to console my fears as everyone was “super, super nice” and at this
point it felt like a tsunami inside me of what lay ahead. I wasn’t able to
process any of this at the time.

The “Official’ Diagnosis

About a week later I had a
meeting with a Haematologist who told the mass in my neck was 7cm and was
“Diffuse Large B Cell” and “Primary Mediastinal” Lymphoma. It was a bit of an anticlimax
really as you have figured out by this stage, things are bad. Chemo started
within 2 weeks, get ‘worked up’. They have named that process appropriately.
This includes more scans and blood tests and a bone marrow biopsy – horse
kicked you in the butt was a really good description. But then when I had to
have one a year later it didn’t hurt. I started to keep count of the needles
but you lose track as I embraced my new identity as the “new dx in bed 9’.

‘Was this really happening?’ I
asked my mum. The shock factor took so long for me to get my head around. I
still can’t believe it wasn’t a bad dream. It wasn’t until weeks down the track
when I was filling in paperwork did I ask my haematologist if my mass was
called a tumour and if it was malignant. It is an interesting use of language –
no one ever said you have an aggressive form of cancer. I was supposed to be
consoled as the more aggressive forms of cancer are easier to treat.

Treatment

The effects of chemo are accumulative. You bounce back
after first one pretty well, and have about ten good days in between on a
fortnightly cycle, but then slowly, the
good days get less and less till it becomes really difficult to front up to the
hospital when you don’t feel like you have got over the last one.

One minor detail I forgot to ask
is how does your hair fall out? Will I be walking down the street and it just
blows off? I had better stay at home, I thought. I remember one of the patients
I met said “it happens around day 17”, so I stayed at home till day 21 waiting.
Then it happened in the shower….just watching it wash down the drain, it was
tragic.

I had fortnightly treatment and in-between
had these injections to help get the bone marrow pumping. At one point I
thought I was having a heart attack and rang the hospital. They said that it is
normal part of the treatment. I was surprised I didn’t know about it, but the
strategy is they don’t want to tell you everything that can go wrong because it
can scare you. I didn’t think I could get any more scared!

At one point the thrush in my mouth
became unbearable and I rang the hospital again. They offered for me to come
and pick some stuff up but given it was after hours to come to the Oncology
ward to get it. I was unprepared for this….it is such a shook seeing all these
bald headed people who can’t get out of bed. I remember being so thankful that
day just because I was able to have my independence and drive my car even if I
didn’t have to wash my mouth out with bicarb soda that said on the instructions
“good for cleaning dirty furniture, drains and cars.” This was pretty much what
my mouth felt like.

So much of my identity tied up
with what I do. I had to stop work but prior to being diagnosed I had been
given opportunity to present at my first national conference. It was on the day
after I started chemo, but I just had to do it, after that I gave myself
permission to be sick for as long as needed. I couldn’t put it off anymore.

Your brain doesn’t get that your
body is sick. So little things like getting out of bed, which I have done every
day of my life, became extremely hard. I remember one day it took me hours to
psych myself up to swing my legs over the bed to get into a standing position. At
this point I knew I was getting sicker.

Sometimes the waiting is the
hardest part, so I tried to cut corners. I had a scan to see if the cancer had gone but
then couldn’t get into to my Haematologist for 3 days. I made an appointment
with my GP and he said the chemo looks like it has all worked. Then when my Haematologist
told me I needed RadioTherapy I felt ripped off, but it was my fault for not
waiting.

Think positive – NOT!

At one point in
the beginning I explained to my family why I couldn’t go ahead with treatment. I
had expectations of myself that I should know what to do being a professional,
but I just felt so overwhelmed about the journey ahead. I didn’t have a good
understanding of Oncology – I still felt the association of cancer with death, which
is not the case these days. Lots of people survive that don’t even end up in
hospital. I just didn’t realise this and it took a lot of reassuring.

My self-esteem was particularly
fragile and the thought of ending up bloated from the steroids, unable to go
out in the sun because of the chemo and have no hair was the straw that broke the camel’s back –so I asked if
they could palliate me. I still didn’t understand that so many people get cured
from cancer and it caught my Haematologist by surprise that I had asked for
this when I had a good chance of survival. BUT, it was Easter at this time and
one of my nieces won the Easter egg guessing competition. There were 718 eggs.
When I asked how she came up with such a random number she explained that she
is 6 going on 7, but really wants to be 18. I realised at this point I had to do
whatever it takes to see them all get to 18 even if I was fat, white and bald.

Lymphoma Australia

I had a brochure from a friend
about the work Lymphoma Australia. It was the best piece of information I had
available in relation to the stories it shared of people’s lives, how they
pulled through. I gave it to my all my family to read. I had been given a few
brochures and looked on the internet, but this was outstanding piece of work
put together by people that really understood what you wanted to hear with hope
that you can get through. I was probably a bit biased as it had a couple of
stories in there of Rugby League players who had lymphoma. Both my brothers played
for Manly so I knew a bit about how hard you had train to get to that level.

This is where you appreciate the importance
of research. My haematologist was one of the best, but the advice I was given
was based on what they ‘reckon’ was the best they could do on the research they
had, but no one knows for sure as there isn’t enough research. It was my choice
to whether to have radiotherapy after the chemo, but given the aggressive
nature of it they thought it was the best shot to prevent it from coming back.
I agreed at the time, but even in the last year the treatment methods changed.
Lymphoma Australia helped me to navigate this journey.

Life after Treatment – Parliament to Opera

Finishing treatment was hard. I
never thought this could be the case because of what you have been through, but
it is the anticipation that something could go wrong and that you have been
through all this only to fall apart. It is hard to know how much information to
get about relapse. I know some people don’t want to know much, but I wanted to
know everything. But when they told me everything, I suddenly wanted not to
know.

The P2O was such a great
experience for me at such a difficult time. It takes time to adjust to doing
things like buying a new bike and having confidence that you will be around for
years till it wears out. It is good to have an excuse to get out in the
sunshine and look after yourself. And just allowing yourself to enjoy things
apart from the importance of looking after your health. This is not one of my
strong points, so having a goal to do some exercise was good and the online community
with Strava encouraging each other was also a really helpful part of the
preparation. I shared precious moments with one of the other riders who has
also had lymphoma when everything is hurting and sweating like crazy, but to be
alive and enjoying life and coming last could be such a buzz.

The comraderie on that ride was
amazing. During the ride, there was a 20 km section were we had to get a bus as
there was roadwork on the M5. Everyone was so disappointed but I was elated
inside to have an excuse to take it easy. I remember when we got to the finish
line and they asked if I wanted to lead the Peloton into the Opera House. It
was one of the happiest moments in my life I will never forget.

I did live happily ever after

Just before I got sick I had
contacted this guy I liked and wondered if there was any chance of us getting together.
When I got sick I kind of gave up that hope, but he called me out of the blue
to see how I was getting along. We talked during my treatment and the long and
the short of it is when I got better he still called me and we got married 6
months later. It is the best thing that ever happened in my life and if I
hadn’t of got sick it probably wouldn’t have happened.

I remember I went to the “Look
Good Feel Better’ program. I was maybe a bit premature as it was before all my
hair had fallen out. When I sat around a group of women who took their wigs off
I wanted to vomit. I didn’t belong, I didn’t want to belong and yet I knew that
I was going to get membership when I too would be bald.

David and I rode the
Parliament2Opera 2014 rider together fundraising for Lymphoma Australia. When
we got married we agreed that because of what had happened that we would make
our bridal registry for Lymphoma Australia and our friends sponsored us to do
the ride which was great.

I am still have 3 monthly check
ups and have another scan next month. I still have a residual mass after
treatment and need to keep an eye on it and make sure that it doesn’t
change shape… more importantly I need to get back into training as I am aware
that I have not been on my since last P2O and there is another one coming up
this year.

When I was training for P2O I
realised I was going to have to get a better attitude so I changed the lyrics
to Gloria Gaynor’s song “I will survive”. It is a song about a girl putting her
life back together after a bad relationship, but I changed it to be about me
learning to live without lymphoma.

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