Sunday, January 22, 2012

Part three (post-diagnosis): a plan finally in place

The Story of Hippo Jo

Hippo Jo started out as a gift to my brother, handmade by a 92-year-old patient named Patsy who makes these knitted animals for sick kids. I never met Patsy but I am told she has purple hair, purple glasses and purple underwear (apparently the nurses told Sam about the last one)! On Sam's last day of his rotation at Berwick, she gave him a card and wished him well in his career and personal life. Hippo Jo was in the process of being made, and she took Sam's address and promised to post it to him. Five weeks later, when Sam thought she had forgotten all about him, the fluffy Hippo appeared in the post. When Hippo Jo arrived to London, he was in the arms of my mother and I had just come out of surgery. Jo was accompanied with a letter from Sam, which read: "After all, he was intended for sick kids, and you are a bit of a sick kid." Jo has been with me through thick and thin, and attracted much attention from the doctors and nurses who were in and out of my room. As part of the journey, we took Jo around London and snapped him with all sorts of London landmarks, and he accompanied us on the flight home.

I got discharged from hospital on Thursday, and until I got my bone marrow biopsy and then my PET scan the following Wednesday and Thursday respectively, there wasn’t much for me to do but try and fill my days with as much normality as possible. The steroids I was taking were keeping me strong and active, so I made the most of it.

It also meant Matt and I got to spend some time together outside the hospital, doing things like going out for dinner and visiting the cinema, things I hadn’t really been able to do even before my stay in hospital because I was feeling so ill. Every day I went out I would soak up my surrounds, taking in my last memories of London. I forgot how beautiful London could be in December; on Saturday evening, even Green Lanes looked beautiful in the misty sundown, the neon Christmas trees glowing softly from the lamp-posts. I couldn’t believe I would be saying goodbye to a place I had called 'home' for 18 months within weeks. It amplified everything I felt times 100.

There was still some uncertainty over when I would be going home. Mum had booked my flight home with her on Friday, but it was now looking very unlikely that I would be hopping on that plane. Mum had put her medical industry connections to great use, making contact with the doctors in Australia and getting the ball rolling down there. An oncologist in Traralgon had agreed to take me (a feat in itself, usually there is a long waiting list). Mum had received a message from him recommending I stay in London for at least one or two cycles of treatment. With both Australian and UK doctors now agreeing that I should stay, it was pretty much confirmed that I would be rebooking my flight to a later date, which left mum in a difficult predicament: should she stay with me for the two weeks or return home?

On Wednesday, I got my bone marrow biopsy done, which really wasn’t that bad (I kept getting warnings that it would be painful). The worst part was the injection of the anaesthetic, which stung sharply as it went in, but after the initial pain and a few deep breaths, even that was quite bearable. The doctor spent a lot of time grinding into my bone, which more than tickled ("You have very strong bones," she told me, which probably explains why I, Miss Accident Prone, have never broken a bone).

I got an X-ray that day which showed my tumour hadn’t really shrunk since the week before. The steroids had really only been stunting its growth, rather than shrinking it. This showed that the tumour would still be affecting my breathing, which made the decision absolutely final: I would not be flying home that Friday. When I spoke to the lymphoma nurse, Barbara, she told me the earliest I could start chemo was the following Friday.

After the biopsy, Mum and I roamed the streets to find an internet cafĂ© and interestingly ended up on Goodge Street, the place I first moved to when I arrived in London. I showed mum the pub where I worked my first London job (for a measly £6.50 an hour), and the window where my room, which I shared with four other travellers, stood, above an Italian restaurant. Then, amazingly, I bumped into Giovanna, the Italian woman that ran the house I stayed in and rented out the beds. I couldn’t believe it. She gave me a hug and insisted I take her number; she was still living in the same place, doing the same thing she’d been doing for years. It was a weird meeting and I felt like things had come full circle; how different I was to that wide-eyed Australian girl who had slummed it in that tiny room only just more than a year ago.

Overall, I felt it was positive day, and I went home feeling fine. It wasn’t until Thursday that everything came crashing down on me like a tonne of bricks. It was really the first time I thought, “Why is this happening to me?”

The morning began with the PET scan, which was going to establish the stage of my disease (how far the cancer had spread across my body). There was about a 45-minute delay on the scan and as I’d had to fast, I was hungry and impatient. The whole process of the PET scan did excite my inner geek though. I was injected with radioactive liquid and instructed to lie down on a bed for an hour while the potion moved around my body. I stuck my iPod in and daydreamed away. Finally I went in, lay down on the space-age style bed and was moved through the giant whirring donut.

A big lunch was in order after the scan which we indulged in on Tottenham Court Road. There wasn't really much time to rest though – I was going to see the fertility specialist and Barbara had called and wanted us to drop by the oncology clinic. She had arranged for us to see the oncologist, a doctor whose name we had read on letters and forms but never met. “There is going to be a few surprises about our plans for you,” she said as we went into his office. Mum and I took a seat and the doctor started to explain what would be happening. The results of the PET scan, a 3D image of my body, flashed up on his computer screen. I guess I wasn’t really expecting what I was confronted with right then, because all I could see was MY body, splashed with bright yellow glowing tumours: not only in my chest, but scattered across the lower part of my body. “So the scan pretty much matches the CT scan,” the doctor was saying. “You have deposits in the pancreas, kidney, lung and liver.”

Whoa, hold up. Up until now, not a single doctor had told me a single word about anything but the tumour in my chest. The CT scan, performed almost two weeks ago now, must have showed the cancer’s activity in my other organs but no one had reported back to me. I had been expecting stage 2, or worst scenario stage 3. But I was at stage 4. 'I'm riddled with it' was all I could think as I stared at that scan. This was a massive shock to me.

Mum and I were clearly quite shocked and upset, but the doctor explained to us that the prognosis was still good, and that many patients with advanced-stage lymphoma are cured. If it was any other cancer, deposits in the liver would mean a death sentence, but because lymphoma is a blood cancer, and the tumours are liquid, it remains treatable.

Then they told me that chemotherapy would start tomorrow, instead of the following Friday as initially planned. They had obviously assessed the urgency of my situation and by some small miracle managed to slot me in for treatment the following day. It was all a bit much and I broke down and cried, just overwhelmed by it all. But this was good news, it meant the healing was about to begin – exactly two weeks after I took myself to hospital! It also meant that it was very likely that I could go home two weeks from now.

By this stage, my type of lymphoma had been confirmed as a diffuse large B-cell lymphoma, and my chemotherapy was called R-CHOP, which is made up of five different drugs. I signed the consent forms for my chemo, then I had to head over to the main hospital for my depo injection, which, administered monthly, would hopefully help protect my fertility. When I was waiting at the pharmacy for my medication, my phone rang. It was Glenn and as soon as he heard my voice, he said, “How can I help?” and I burst into tears. Everyone was staring at me. Mum took the phone from me and I got myself together and took my prescription to the collection window. A lady nearby gave me a hug and told me everything would be alright. Oh, the kindness of strangers!

So it was a bit of a miserable trip home for mum and I. Ragged, tired, emotional, travelling home in the cold darkness. But we went out for dinner and pulled ourselves together. We had now also devised a clear plan: mum would move her flight to the Monday, so she could be with me for the first few days of chemo, then she would fly home alone on Monday. We had decided it would be better for her to return because she really wanted to attend my brother Sam’s graduation from medical school, and it was also very important for her to be around the family. She had been sleeping in the living room of my crowded London flat which wasn’t ideal. Mum would fly home, attend Sam’s graduation, and then less than 24 hours after his graduation, Sam would board a flight to London, spend a week with me, then accompany me home. Go Dortmans tag team! It was a good plan – it was going to hit the hip pocket a bit but it would be worth it.


  1. Hey Beth, thanks for sharing your story which at times is making me cry. You are so brave. You can beat this!! x Luna

  2. Hi Beth. I've heard of your diagnosis through your sister Meg + have been praying for you! I beat non-hodgkins lymphoma 6 years ago after a 3 year long battle, I'm now 26 + healthy as ever! Reading this brings back so many memories, its a bit dejavu like! I believe you'll beat this too! I'll continue praying for you! Keep the positive spirits up! Eat what you feel like eating! Say how you feel! Cry when you need to! Its an emotional time but know there is always hope and that light at the end of the tunnel does get closer!!! Lacey