Margy’s Story – Primary Mediastinal Diffuse Large B-Cell Lymphoma

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 trackwhen 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.

This story was published with the consent of Lymphoma Australia Association