Rather than re-telling the story of my journey - I have attached the original e-mails, snippets of conversation diarising and outlining my journey. In between the lines there was desperation, and inspiration, there was comfort found in Lance Armstrong's "Its not about the bike" which is now, by far, one of my favorite books. There were songs, and there were conversations. There were visits to the psychologist and chats with family. My husband and I sat and cried together at the dinner table as he expressed his greatest fear in the possibility that I may die and the possibility of living life without me.
My gut wrenching fear of the children being raised without a mum and the heartbreak that was involved. It gave me strength, determination and grit. It also gave me a new appreciation and lease on life. It made me want to give back even more and it also made me survey my life, with an unforgiving eye and to remove the deadwood and everything negative, to throw back the curtains and to let in the light. This is a re count of what I experienced in a week and how that week, changed my live irrevocably.
14 August, 2009 - The email after the initial phone calls made to family
During the hysterectomy they removed the pregnancy tissue as well as what surgeon’s believed to be a cyst. Following the biopsy the ‘cyst’ results were abnormal and redefined as an “Epitheloid Trophoblastic Tumor”. It may also be known as Gestational Trophoblastic Disease. This is a rare tumor in the uterus that can occur as a result of or during pregnancy.
It is uncertain at this stage as to whether the tumor was benign or malignant or whether it has spread to other parts of the body. A P.E.T scan which determines cell growth and ‘hot spots’ and can ‘stage’ growth, has been scheduled at Peter Mac. If the tumor has spread, the course of treatment will be chemotherapy.
Blood tests have also been scheduled to determine tumor markers / cancer levels.
I will keep you posted with regards to dates and outcomes.
Have a lovely weekend and thank you for your kind wishes and offers of support, they are sincerely appreciated.
Lots of love and every good wish.....
14 of August - From the oncology department
After I spoke to you this afternoon, I have made some inquires. Dr *Name* has also left a message on your home phone. We have booked you in for a phone appointment on Monday 17th August at 1130 am with the Consultant *Name*. She will answer any questions that you may have. The number she will contact you on will be your home number.
I have also put a link below to the Charing Cross Hospital website. This will have general information about Trophoblastic Disease for you.
Clinical Educator Nursing
The Royal Women's Hospital
Wednesday 19 August, 2009
Peter Mac has been scheduled for this Friday morning at 7:45am (sadists). We will be going down the day before (tomorrow night) and staying in East Melbourne. I will also be doing bloods between now and then. The PET scan is a lengthy process, couple - few hours, wont bore you with the details.
A bit of interesting background info:
The Oncology department has now taken over 'my file' from Gynae. You will be pleased to note that this cancer is so rare that I am the first at the Royal Women's Hospital to be registered! Hence the Director of Oncology asked permission to banter my info about and consult with the 'worlds surgeons". Well I suppose thats one way of getting my 15 minutes of fame! Oh hell, If you have to have cancer, you may as well do it in style! On the flipside, it also means that they are uncertain as to how to proceed which is always good for an upset stomach!
The medical bit:
The tumour tested positive for BhCG and another hormone called Inhibin. BhCG generally considered a pregnancy hormone (the piss on a stick - oh wow we are having a baby variety) but its also present in men who may have prostate / testicular cancer or non pregnant women who have gynae cancer. So what we need to work out now is
The excellent case scenario is - all is well and good - No spread, its all contained HOWEVER as I have HAD a tumour/cancer removed, there also needs to be follow up - a couple of rounds of chemo just in case? monthly testing? Urine, blood samples? The director isnt sure, because..you guess it. I'm the first! So its a case of, let me check my notes and ask "my international peeps" and I wll get back to you.
Take care and love lots ok - don't stress, don't even think about stressing - Im not dying (well not that I know of at this stage he he!)
....In the meantime
We drove in and stayed at Peter Mac - the social work department were outstanding as were the PET Centre team. In the waiting room I sat and chatted to a Scottish women who was no older than 55 who had just been told that her cancer was terminal and she was going to refuse treatment after her scan. It was 8:15am on the Friday morning. I thought she was one of the bravest women I knew in a short amount of time. So we talked about a living funeral, no point people conveying nice things about you when you are dead is it? Its a gathering I suppose, people given the opportunity to say goodbye to give thanks for a life and to wonder how on earth are they going to live in a world without you in it and you wonder what on earth it is you will be walking into on the other side.
And so it goes. Mrs Dalloway - Virgina Woolf was quoted a few times this week - its always the hours after, what do you do in the hours after? After all is said and done, when everyone goes home. Ah Mrs. Dalloway, always giving parties to cover the silence......
In the room - prior to the scan, you are injected with radiation and hooked up to a saline solution drip - by this time, you have had so many tests that the backs of your hands bare needle scars of bungs inserted and the folds of your arms are slightly bruised with needle pricks and tape rash. The lovely nurse asks what DVD do you want to watch, as its an hour wait you lay there and watch a movie on a portable DVD player - I chose The Lake House - yep, Sandra Bullock & Keanu Reeves.
The hour is up and its time to slid into the claustrophobic machine - as the camera whirls you pray, and this time I sang - sang a song a colleague who sits two desks away wrote - sang it in my head, sang it to pass the time, chanted it like a prayer wishing this bloody thing would hurry up. Oh My God I cannot believe I HAD cancer. I have cancer, I had cancer. Fuck. I don't even know what the hell is going on anymore.
......The Phone Call
Tests came back - BhCG <2 (if its spread its in the 1000's) and PET is all clear. They removed the cancer as part of the Hysterectomy. Alas, I shall still have to endure tape rash. Every 4 weeks a blood test for at least the next 12 months to ensure that it does not re-occur or perhaps if it does, they get it early. BhCG was present - it was malignant - I got away with it. I bloody got away with it. I couldn't save my two angel babies, but bloody hell, they saved me.
22 August, 2009 - An e-mail to selected colleagues
Guess who had cancer and WON!
*cue Rocky music and throw a few air punches*
Tests from Pathology & Peter Mac have indicated that the cancer was confined to the uterus only which has been removed. No chemotherapy required, only blood tests once a month for at least 12 months to ensure if the cancer does re-occur, it is detected early.
I am a cancer survivor with a new lease on life!
Thanking you for all your support, kindness and flexibility. It is lovely to know that *institution* is not only built on excellence, but also compassion.
With lots of excitement and every good wish,
And so here I sit sharing with you, snippets of my story, some of you want to know because you care, because of curiosity, because you are to embarassed to ask, or perhaps to look for evidence or facts. In that short week, I was touched by so many people, strangers became kindred spirits, some family became strangers. Now I return to normal, but its a different kind of normal. It could never be the same again. I am thinking about running another co-curric at school - I bantered a name with the students "Helping Heros" - each term we will support a cancer organisation. Peter Mac is on the top of my list. Maybe we can make something - maybe we can sell the LIVESTRONG wristbands - but we will do something. We will do something for those who are sitting in a waiting room just after being told that they are terminal. We will give thanks.
In a period of so much loss. Loss of two precious babies, and the devastating loss of the ability to bear children.
I learned to live.
I am renewed and I gained a life.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.