The start of an Australian Hodgkin's Lymphoma Network

Thursday 12 July, 2007 by Natalie

Being diagnosed with cancer at just 23 came as a big shock to me since I thought I had years ahead of me to achieve my life goals... Looking back I realise now that certain medical conditions I suffered from months ago were actually symptoms of my cancer, but at the time they didn't seem connected.

I had itching all over my body and was convinced I had bed bugs because I woke up with itchy rashes! I also had a flu that I just couldn't shake and constant fatigue but because I was really stressed with my job, I assumed I was just run-down. In fact, I thought I had chronic fatigue syndrome...I should be so lucky!

Around the same time my osteopath (who I was seeing for chronic neck, shoulder and back pain) noticed a small lump on my left side of my neck and suggested I get my doctor to check it out. I did and he sent me to get an ultrasound, followed by a blood test and when neither of those was very conclusive, my doctor decided to keep seeing me every month to check if it was growing or shrinking.

Since it didn't seem to be shrinking after a month or so, he referred me to a general surgeon to get a thin needle aspiration done. The surgeon refused and said he'd rather remove the lymph gland entirely in hospital and biopsy it, which he did a week later on 8 March 2007. I really thought nothing of the surgery because my blood test hadn't shown anything all those months ago and I'd convinced myself that the lump was nothing serious.

The day I got my stitches out, I was so focused on that and being able to go back to a normal life that it never occurred to me that I might be seriously sick. I had certainly put cancer at the back of mind... So the day I had my stitches taken out, the surgeon removed the bandage and casually said the biopsy showed that I have Hodgkin's Lymphoma. His exact words were: "the same type that Delta Goodrem had".

I was shocked. In fact shocked seems an understatement, I was flabbergasted...I was not prepared for that news. I immediately burst into tears, more from shock than anything. At that moment I wasn't even thinking worst case scenario about this disease being a death sentence but was just so shocked that I had a serious illness because I didn't appear to be that sick.

My surgeon referred me to an oncologist the following week to have more tests done so the disease could be staged. Those days of waiting were so difficult because I kept thinking of worse case scenarios and knew that my chances of a full recovery depended somewhat on what stage I was at.

I even had a nightmare that I would be told I was at such an advanced stage that treatment would be futile. I remember thinking how weird it was that people avoid using the word cancer and call it the ‘c' word or other vague descriptions. It's incredible how one word can hold such power. It's funny how doctors even refer to Hodgkin's Disease/Lymphoma as exactly that, almost as if to hide the fact that it is a type of cancer.

So my oncologist booked me in for a CT scan and a PET scan and got the oncology nurse to take some blood. It's funny looking back because I was so proud of myself that day after having the blood test because I hated needles more than anything. Well I certainly got over my fear of needles pretty quick! Now having been jabbed in the arm and elsewhere so often, needles don't seem nearly as scary. In fact, I've even overcome my fear and learnt to give myself injections!

On Thursday 29 March (the day before my 24th birthday), I found out the CT and PET scan results and was told I was stage 2 and that the cancer was restricted to my neck so far. It was mostly on my left side (which I'd expected because that's where the gland had been removed from), but there is a small area on the right side as well. Because it's in two separate lymph groups they consider it stage 2.

My oncologist prescribed 4 cycles of ABVD (Adriamycin, Bleomycin, Vincristine and Dacarbazine) chemotherapy followed by 5 weeks of daily radiation to my neck. The following day, which was my birthday, my mum took me wig shopping because I wanted to be prepared if my hair was going to fall out (today, 2 months into chemo treatment and I still have hair! It's thinning but no bald patches yet!).

I was mostly worried about people in the street seeing me bald and staring or pointing. I guess I also didn't want every stranger to know I had cancer because I was determined to try and keep life as normal as possible (despite the fact that I took months off work for treatment). After that I went and got my haircut by my normal hairdresser to match the wig I'd bought. It was pretty upsetting to see all my long hair get chopped off and I was teary in the car on the way home, but I reasoned that it'd make things easier on me emotionally if my hair did fall out with the chemo.

My first chemo treatment was on 3 April. I had a pulmonary function test done beforehand (because the drugs can cause permanent lung damage), and then headed to the oncology ward where I was hooked up to an IV for hours and pumped full of ABVD. It was pretty uneventful thankfully as I was a bit scared that I'd experience extravasation where the drugs escape your vein.

I have a really great oncology nurse and that helps, plus I met a Hodgkin's survivor who came in for her regular checkup and she was really nice. As far as side effects go, I've had nearly all of them possible so far but not usually all at once.

I always have nausea for around 5 days after the chemo, then it gradually lessens. I also have constant sleeplessness, fatigue, taste changes, heightened sense of smell, constipation, haemorrhoids, mouth ulcers, vein pain (from where the chemo goes through), muscle aches and bone pain, low concentration/focus (commonly called 'chemo brain'), easy bruising, foot cramps and numbness. I am yet to vomit though which I am very thankful for!

My second chemo treatment was also postponed a week because my blood test showed my blood count was too low. That meant that I needed regular injections of Neupogen, a drug that increases my white blood cell count. These are the injections I have to give myself, the day after each chemo treatment.

Yep, I have become quite the nurse since diagnosis. I was also told early on that the chemo could make me infertile. The realisation that I may not be able to have children of my own some day was one of the most difficult things to deal with. For someone like me who loves kids, it was devastating news. Being a mother has always been my main goal in life. It never occurred to me how important this was until it was threatened to be taken from me.

To reduce my risk of infertility, I'm having monthly injections of an implant in my ovaries called Zoladex. Although they are more painful than a normal needle, I can't say I mind when I know that they are helping to ensure I can have children someday.

Once I got over the shock of my diagnosis, I remember being struck by how difficult it was to find fellow Hodgkin's disease patients in Australia that I could talk to. It is such a rare form of cancer and I found it hard to find other cancer patients who were my age, let alone fighting Hodgkin's. I turned to the internet to find support but still had trouble tracking down anyone in Australia like myself. Then almost as if by a miracle I received an email from a fellow Hodgkin's patient living in Australia who had stumbled upon my email address and contacted me. She had also been diagnosed in March and was desperately searching for a friend she could relate to. We became instant friends and have been communicating by email during our months of treatment.

Those emails are one of the key things keeping me going right now during chemotherapy. It's so amazing to have someone to share the fear, loneliness and pain with, and to able to cheer each other up during difficult times. We've lamented the loss of our hair together, shared our new obsession with buying hats and supported each other throughout the whole ordeal. We plan to meet in person once we both finish our treatment and have a joint 'remission' party!

Meeting my new friend online also inspired me to find a way to help other Hodgkin's disease patients and survivors connect in that way. Early on I knew I wanted to do something constructive with my time off work that would help other people in my situation and given that my chosen profession was in website maintenance, I chose to create a new website dedicated to helping others like me. The Australian Hodgkin's Lymphoma Network (www.ahln.org) is my way of trying to make it easier for other Hodgkin's patients and survivors to find each other at a time when they need it most.

I am still trying to spread the word about the website but even if it only helps a handful of people, I will be happy. Getting cancer has made me reassess my life and goals. It's made me realise that I need to slow down the pace of my life as I feel that extreme and prolonged stress led to me getting cancer.

It's also given me the chance to spend time with those I love and reminded me just how important that is. I also realised my current job doesn't really fit into my grand scheme of who I want to be. I have always felt I should be doing something with my life to help people but there was never a cause that had particular relevance for me until now.

I plan to give something back by supporting other cancer victims through volunteer work once I make through and beat cancer. I also intend to return to work part time initially and if possible I'll be keeping it that way.

I think the only real way to achieve a work-life balance is to spend as much time working as you do living. I am more aware than ever of my mortality and don't want to forget that and return to the rat-race once I'm well again. I guess what I want to share with people is that cancer doesn't have to be a completely negative experience; many positives can come out of it.


We include these stories to give readers an insight into the experience of cancer. Each experience is unique. Different people react differently to the same treatments, and treatments can vary depending on a person's age, the stage of their cancer and other factors.

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Updated: 12 Jul, 2007