Diagnosis: I live in Wellington, New Zealand, was 19, do Tae Kwon Do, and was seeing a physio in Feb 05 for my left leg injured during training, suddenly my right leg started throbbing at night got hot and was swelling up.

I was seeing the physio a few days later so asked him to look at my other leg, he immediately sent me directly to the doctor (like he phoned and said I was on the way now) then he phoned my mum and asked her to meet me at the doctors. My own doctor was away so I saw a locum who sent me directly to the emergency room.

Within 4 hours of seeing the physio I was in a hospital bed and told not to get out. 10 days on penicillin, MRI, Ultrasound, CT, X-rays. I was told at that stage there was “confusion” with the tests. It could be Osteomyelitis or Ewing’s sarcoma. However after 10 days the swelling had gone down, I was discharged on crutches and told to return the following week for another check with the orthopaedic surgeon. This Tuesday visit thing went on every Tuesday for nearly 2.5 months – more tests; then he decided to do a needle biopsy. Lucky for me there was no fluid visible on the ultrasound so it was not done. Finally Mum had a hissy fit and demanded that all tests and scans be referred to a bone clinic in another city – Auckland.

Within a few days, I’m on the slab for a biopsy with the Wellington Ortho surgeon being given a specific two hour “how to biopsy this mutt” lecture from the Auckland surgeon, I wasn’t thrilled about the whole thing and almost backed out of the biopsy completely, because at that stage I felt great, no pain and wondered what all the fuss was about, trouble is Mum would have given me a bit of grief if I had.

About 12 days later we were called in and advised that I had High grade Osteosarcoma, fibrohistiocytic variant – Fibula – sections showing a pleomorphic sarcoma with spindled tumour cells in a storiform pattern. I was shocked, Mum was crying and Dad was pale but staunch.

More delays followed this diagnosis, it took about 10 days before I was referred to the Auckland surgeon- Mike Hanlon, for treatment and only after Mum had another hissy fit. We flew to Auckland – about 1 hour away- had every test and scan repeated. It was the first bone scan I’d been given though, I think that maybe should have been done 3 months earlier as you could see the tumour and eaten bone clearly on that.

Since then it’s been chemo, surgery, chemo, tests and so on.

Treatment: I was sent back to my home city- Wellington, sent to the fertility clinic, then had a double lumen Hickman put in and given two cycles of Cisplatin, Doxorubicin and Methotrexate. This started Mid June 2005. Then I flew back to Auckland for limb salvage surgery in August 2005. Mike Hanlon removed the tumour and a large part of my Fibula – from the knee down, 140mm long x 74mm – about the size of my hand. Then back to Wellington for four more chemo cycles. The surgery was better than I expected and really felt little pain. I was on crutches for 8 weeks. The necrosis on the tumour was 98% with clear resection margins.

I’d had a dreadful time in the first two cycles with nausea and vomiting – around 50-80 times a day every day of chemo but less by the time I got home each time. I had ringing in my ears. They put the GCSF needle on the outside of my thigh, it was really uncomfortable there, the next time I asked them to put it on the inside thigh and that was much more comfortable. My hair started falling out about 15 days after the first chemo session.

I lost about 10kgs in the first month, was also a bit irritable (actually a lot irritable). I barely remember the first two months of chemo. I was so out of it with nausea, ulcers all the way through my digestive tract etc., I found it better to simply sleep or watch TV. I didn’t want any friends around me because I felt like sh*t.

The Oncologist, Anne (whose nickname was Atilla the Hunny – because she was fierce but a real sweetie underneath) was telling me about the different sorts of feeding tubes, because I was losing so much weight. Mum decided to get on the net and she found a great drug called Emend. That really worked, I went from heaps of chucks each day to none, put on weight, got out of hospital within 3 days instead of 6, and felt heaps better. I even got to go out, rarely. On one of these evening excursions I discovered that (despite advice to the contrary) I could drink alcohol and feel nothing – no hangover, no headache!

Unfortunately the Cisplatin and Doxorubicin caused significant damage to my heart after three cycles, so I was taken off them and put onto ICE – Ifos, carboplatin and etoposide. Then there were more problems the etoposide was also withdrawn. Only now have I found out that there is a drug – Zinecard that helps prevent heart damage. There were lots of problems with Neutropenia, low platelets, low white cells, Hickman infection – requiring the first removed and a new one put back about a month later.

I finished chemo in February 2006 and turned 20. I’m NED (no evidence of disease) and feel great.

Recovery: I did some PT, but just didn’t feel like doing it that much. I still go to the physio, but only fortnightly. I had almost total foot drop from the surgery. I was given horrible plastic braces to sleep in and use for walking. When I complained to Mike Hanlon about the ulcers on my legs caused by them he suggested I get a Dictus strap. This was heaps better, I could walk easier and because it was like a bungee cord on my foot you could barely see there was a problem.

I have some heart issues and am seeing a cardiologist shortly to find out the implications of the lost heart function.

Now about a year since surgery I walk with only a slight limp and am back doing Tae Kwon Do, in fact was 1st in special techniques in my first tournament in 15 months. I’m now involved in Canteen and keen to “walk the walk” with anyone else undergoing treatment.

I think I have been very lucky getting Oncologist Anne, being treated in paediatrics and the Auckland Surgeon Mike, they have been amazing throughout. I’ve also been incredibly lucky with my recovery. I’m so grateful to all those who have got me through this.

My favourite quote is from a poem about the 2nd world war

“…and when that soldier reaches the pearly gates, to Saint Peter he will tell ‘another soldier reporting Sir, I’ve served my time in hell.”

Life now: I’m back at university, studying for a BBS with a degree in Property management and valuation.

I’m back into Tae Kwon Do and hoping to do my second black belt in the next year. I’m also planning to get into the NZ TKD team for 2007. I’m also teaching TKD at the moment because that helps my fitness.

Also now vice president of Canteen (teenage cancer kids in New Zealand) and really keen to do some mentoring with young people going through OS. We organise lots of functions for survivors and siblings and rarely discuss cancer – that’s for the social workers, we’re only interested in having fun!

I still get quite tired, sometimes a bit down but not for long as I realise how lucky I am to be alive and well again. I realise how lucky we are to have the treatment, doctors and awesome nurses who can patch me up and send me on my way, the wonderful friends, some of who are in cyberspace, who watched and helped me along the journey – Thank you all.

Thoughts and hints for new patients:

-get the GCSF needle put on the inside thigh
-get the grandchildren banked
-roll with it – don’t fight treatment, fight for your spirit instead
-go to the best doctors for sarcoma, don’t simply pick your city
because its convenient
-when you feel well, get out there and do something

A poem recently sent to me says it all – I don’t know who wrote it -a young girl in NY

SLOW DANCE

Have you ever watched kids On a merry-go-round?
Or listened to the rain Slapping on the ground?
Ever followed a butterfly’s erratic flight?
Or gazed at the sun into the fading night?
You better slow down. Don’t dance so fast.
Time is short. The music won’t last.

Do you run through each day On the fly?
When you ask How are you? Do you hear the reply?
When the day is done Do you lie in your bed
With the next hundred chores Running through your head?
You’d better slow down Don’t dance so fast.
Time is short. The music won’t last.

Ever told your child, We’ll do it tomorrow?
and in your haste, not see his sorrow?
Ever lost touch, let a good friendship die
Cause you never had time To call and say,”Hi”
You’d better slow down. Don’t dance so fast.
Time is short. The music won’t last.

When you run so fast to get somewhere
You miss half the fun of getting there.
When you worry and hurry through your day,
It is like an unopened gift….Thrown away.
Life is not a race. Do take it slower
Hear the music Before the song is over.

Thank you for reading this.

Diagnosis: When I was 13 years old I was walking outside one day and noticed I couldn’t walk without a limp and had a lump around my fibula. I thought I might of fell when I had gone roller skating and just didn’t remember falling. Needless to say a week later I was diagnosed with osteosarcoma. Of course I didn’t think anything about it being serious. I just thought surgery would be performed and that was it.

Treatment: My parents ended up getting a second opinion. They were told it was just an aneurism bone cyst. So they took it out and took half of my fibula out. A year later the same thing happened. It was back and I had no idea my life was going to change. My parents found another hospital out of state that specialized in osteosarcoma. They tried to save my leg but it was just too risky. I had chemo for a year. I was so depressed. Being sick, losing my hair, being away from home. I was terrified. I was told they were going to have to amputate above my knee. I thought no one would ever be my friend, guys would never like me. You know at the age of 14 1/2, that’s an important time in your life.

Recovery and Metastasis: I went through rehabilitation after getting my prosthetic, and I went back to high school. Then in 1995 after I graduated high school, it came back to both lungs. Here we go again I thought. I knew what I was going to have to go through this time. I knew how sick I would be.

Life now: Well, now I am 28 years old and I have 4 children. I am 10 years cancer free!!!! My survival rate at the time it came back to my lungs was 20%. I was told I would never be able to have children. This just shows that miracles can happen. I do very well; I can do just about anything if I put my mind to it. Never say never!!!

I am a stay at home mother. My husband is wonderful. He is the love of my life and he is always here to support me and supports me wanting to help other cancer patients. I thought I would never have anyone that wanted me because of my leg, but that was not the situation at all. If someone loves you, it doesn’t matter.

Thoughts for patients: Take one day at a time. I would love to talk to any cancer survivors or anyone going through it. I would love to help anyone get through rough times of fighting cancer. God Bless, Jennifer.

Diagnosis: Well it all started when I decided to go to a mate’s birthday party. We were being stupid and the B-day boy launched a kick at his brother, and his brother jumped out of the way, and I landed it in my leg (left leg). It was sore for a couple of days and I decided to go to the doctor. My local GP could feel something in the leg and sent me for an x-ray. Later that day after the x-ray we got a house call from our GP (Paula Matheison); this is not normal in New Zealand. She basically said that our lives would be turned upside down and that it was more than likely going to be cancer! Within a couple of days we were seeing a private orthopedic surgeon, and then referred down to one of the kids hospitals in Auckland, where a biopsy was done and tests confirmed high grade osteo! Being only 13 I didn’t really know how to handle it, but I remember it was a shock to everyone in my family. Within 3 days I had had a port put in my chest and I had started chemotherapy. In NZ we don’t wait around, I was sent to Starship, which is the only pediatric oncology unit in NZ.

Treatment: Treatment was interesting. Cysplatin, Doxo, and Methotrexate. My treatment lasted about 10-12 months with surgery about 5 months into it to remove the top half of my fibula. I was as sick as a dog on the chemo, but I managed to eat when threatened with a feeding tube! Mum would cook me dinner every night and bring it up to the hospital from Ronald McDonald House. I also bucked the trend, I put on weight (only after loosing 20KG’s!) I would have to say my experience with the doctors was great! I had the best oncologist I could have asked for and one of the best orthopedic oncologists as my surgeon! They must have been good as I’m still breathing!!! LOL.

Recovery: Well recovery was one day of physio at the hospital, then learning to walk again. I am nearly 5 years out from diagnosis and nearly 4 years from remission. I would consider myself to be very lucky as I know others who have passed away. I have no physical issues except for a nice long scar and a slight indentation which is hardly noticeable. I am a healthy and typical teenager really!

Life now: As I write this I still live at home – only for another 14 days! I am off to UNI – I am going to be doing a Bachelor of Commerce. I completed 7th Form, got Uni entrance which I’m happy about, and basically showed that I did it. Hobbies – I am an avid cyclist and got to join the awesome guys on the Team Sarcoma 2006 in Denmark – met Mary, which was awesome too!!! This would have to have been one of the highlights for me was meeting so many others who had been in contact with cancer, but importantly from other nations, which shows that this is a global thing which needs to be combated. I am also a trainee Chef and have been doing some waiting over the holidays.

In NZ we have an organization for Teenagers living/post cancer which is called Canteen. I am on the Northland Committee and also Vice Chair for the northland Committee. While I am at UNI I am going to volunteer in the hospital (called Radio Lollipop) where you go entertain sick kids for a couple of hours a week at night. I had a great mate, Wes Clapp, who I met through this – he was the best! He has inspired me to want to give back to others who are in a position where I have been.

And yes I do have a life! I love to socialise (how many teenagers don’t!) and I live life to the full each and every day!

Thoughts for Patients: Hold on to hope!

Mind over matter is one of the most important things to remember. The way my family got through dealing with cancer was humour, it worked for us, I mean its either laughter or crying. There are times to be sad but it doesn’t help you.

If you in a stage where your thinking “Why Me”? Why not you! This is a way to show people who you really are, what you’re made of and show the world that you can survive this disease and make a success of your life. I think that this is something that will determine the person you are to become – it makes you stronger, and it will shape you into something else. You will see life in a totally different way and you will see how precious it is.

Hints for Patients:

1. Drink coke while on chemo – burp a lot with it as it helps to make the sick feeling go away.

2. Get a sickness patch for behind your ear! Put it on 24 hours before so it will be in your system before hand. It is amazing it really works.

3. Home cooked meals over hospital food. Your choice but I know which one I would choose.

4. DRINK LOTS OF FIZZY WHEN ON METHOTREXATE. If you’re like me and impatient and want to get out of hospital faster but those toxin levels are too high, drink coke, and anything else. Lots of it. Coke passes through your body pretty fast so it should hopefully take a lot of the toxins with it! Drink lots of water also.

5. Be Happy!

6. Do something constructive to help the time pass. Do a jigsaw, buy some shares, sell stuff on ebay! I don’t know what you want to do but anything is better than sitting on a bed doing nothing all day!

Diagnosis: I had a pain in my left leg off and on for a while, but since I had just started running, training for a marathon for the cancer society of all things, I didn’t think much of it. It got bad in Jan of ‘99 and I ended up in an ER because I could not walk, they blew it off, would not do an x-ray because they told me it was a tissue injury and I just needed rest. Ha. I ran the marathon in June, the pain got worse in the fall. I went to see an orthopedic guy who actually said to me “if it was a tumor you would be dead by now, don’t worry” and ordered an MRI. As the MRI was being done, I saw WAY too many people in the booth. A doctor showed up and said, and I quote, “We are now going to give you a shot of dye to find out what kind of tumor this is”. Just like that. It was awful. I am a nurse and was actually working that day had the scan done on my break.

Within a week I had a PET scan, total body scan, and double port implanted. I was about to start fertility treatments, and wanted to wait and freeze some embryos but they would not let me wait, treatment was started right away. I think I was in a trance; it all did not seem real. I am a pediatric IUC nurse; I have seen this cancer and have seen kids die from it.

Treatment: I was started on 4 six week cycles of chemo, then had the tumor removed in Feb. That was hard for me, I could not understand why they would not just take it out first. I was sick a lot, lived in the hospital and had a lot of time in the ICU. Right after the surgery the doctor told me the tumor was ‘clearly dead’ and things were going well. A week later they called me with the pathology results, the first question they asked was if I was alone or not. Then they told me the tumor was less than 10% dead and all the treatment would have to be changed. I was being treated at Pennsylvania hosp in Philadelphia. We went shortly after thaqt for a second opinion at Sloan Kettering, they said the same thing as my docs here. They then changed my treatment to Ifex/Mesna, I was supposed to get 4 cycles but I got toxic from the chemo, was having hallucination and I could only complete 3. The hospital was hard. Nights were the worst, I have awful memories. I then also had to have two more surgeries to clean the boarders, because the tumor was so alive when they removed it. I spent the millenium 1999-2000 in the hosp in the ICU. At least I will always remember where I was….

Recovery: I’m doing OK. They removed the bone but left the joints, I can’t run marathons anymore but I really would never want to do that again anyway. The joints hurt when it is damp. My husband and family And friends have been amazing, all doing more than I would even imagine. Even little things like bringing my husband food at home all the times I was in the hospital, I have one friend who did that weekly, stocking up my fridge while he was there with me, he would just always have things there.

I had a lot of issues with depression and panic attacks after all the chemo was complete and I was sent home alone. I would be fine one minute then hysterical crying the next. I would love to know if anyone else has had that happen, or if I was/am just not coping well.

I haven’t had metastasis yet, but it scares me so bad. I’m almost at my 6 Year out mark of diagnosis, Oct 28th, and I keep thinking as soon as I relax it will show up on a lung Ct. I have a 2 1/2 year old little boy named Max now, and I am so afraid of it coming back and it scares me so bad.

Life Now: IT’S GOOD! For a long time I could not go back to work in the hospital, now I am back and I think better, having been on the ‘other side’. I can still run, I do a lot of biking, and the panic attacks and few and far between. A friend and I were talking about it recently, and it just does not seem real. A funny thing is before I got sick I had long, straight blond hair. Down to my waist, it was just….me. I was always trying to make it curl and it never would. NOW I have blond curly hair and I am always trying to make it straight. One more thing is I never worry about bad haircuts anymore, because I know it really will just grow back!!!

Thoughts and Hints for New Patients: Hang in there. One of the first things my amazing doctor, Dr. Staddon said to me was “You are going to have a year from hell; then you will be okay.” I didn’t believe him, but six years later I have a beautiful baby boy and am doing great. He was right!!!!

Diagnosis: I had the original diagnosis of low grade central osteosarcoma in 1991 (I have had three recurrences since that time and my journey continues). I had a bad fall on the base of my back whilst carrying loads of files from work (nothing new there!). I prolapsed three discs and completely straightened out my spine! I was referred to the local Orthopaedic Doctor, who arranged the usual barrage of x-rays, including some of my knee as I had complained of an ache in the knee joint since the fall. A five inch Tumour showed on the x-ray, at the head of the fibula, which was a bit of a shock, to say he least..and so my journey began!!

Treatment and Recurrence: In some ways I am fortunate that my cancer is Low Grade, it is treated by wide resection surgery to remove the bone and a good margin of healthy tissue around it. Usually, besides nerve damage and weakness due to atrophy in the surrounding muscles, the overall post operative symptoms are pretty minor…that is if you do it once. As I am on fourth time the damage has been greater and the rehab slower. It took a whole two months to diagnose my cancer originally, as it is often mistaken for varying forms of benign lesion. Most of the Fibula has now been removed after three successive surgeries in the same area. My last operation opened up the whole area as several ‘micro-mets’ had formed away from the bone, and had settled in the soft tissue and calf muscle. My consultant had to have a really good dig around along the length of my leg to get all the ‘bits’ out. I have got a lot of residual damage, having lost about a third of my calf muscle and the perrenial nerve was cut so I have no feeling in my foot and it flops around like a newly caught fish!!

Recovery: To date I have had no adjuvant treatment, but I am now (at the time of writing my story) awaiting my Histology reports. Pending those results it is likely in an effort to stop any further recurrence, that a course of High dose Radiotherapy each day for six weeks will follow. Following my Histology/Radiotherapy treatment I am looking at rehab over a period of months/years?? Water Therapy is an option I would like to try…water is so supportive, and I am not so likely to fall over (something I make a habit of!!) Nerve pain is an issue at the moment as the minor nerves start to fire up, but generally the biggest challenge is to walk with little or no sensation in my lower leg and a foot that won’t do as it is told!!!

Life Now: I plan to do several things after my treatment finishes: Sky-Dive for my local Cancer Charity (My Second!!,) White Water Rafting with Mary and Charlene when I come over to the States later this year (sorry Guys, you gotta do it now!!), and have a long and glorious life enjoying my Family and Grandchildren!! I cannot teach Tae-kwon-do Karate anymore… I fall over when I kick!!! I am looking to finding something else though, that is just as much fun..but maybe a little bit more sedate!

Thoughts and Hints for New Patients: Deal with what you KNOW, and not what you FEAR. Laugh whenever possible..it really is the best medicine you can have, and be positive. Share all of your feelings, not just the good ones. Don’t behave how people think you should, Be good to yourself, you are allowed to deal with YOUR Journey any way you like

…and always have Hope.