Life has meaning when you have a purpose.
From when I was younger, I decided on my purpose. It was to be a Mum!
Even finishing high school, I was looking forward to that day in the future where I had finished uni, married to a great guy and be a Mum to my children. Hearing those little voices yell “Mum” was what I had longed dreamed of.
So, at the beginning of my 30s having graduated uni, working full time, had bought my own house, travelled around the world solo, thought I’d met Prince Charming a few times (I was wrong!) and was working a lot, I finally made the decision I didn’t want work to be all that I did.
I wanted the chance to place headphones over my pregnant belly even if it came with morning sickness and back pain, I wanted to hold my baby in my arms and know that I was going to love, teach, inspire, maybe with some arguments along the way, but know that there was someone out there to call me Mum.
I longed for my purpose to become my reality. I decided, that in a year’s time, should fate still have me single, I’d make my Mum dream become a reality.
Later that same year, having lined up with one of my friends to go off our pill and have our periods at the same time, so we could both be miserable together.
I had avoided having my period for many years (medically approved I may add) it was always ridiculously painful, even after being diagnosed with Endometriosis when I was 19, with the pill meant to alleviate some of the pain, which it didn’t! I had my techniques to deal with it, heat packs, hot showers, sleeping in foetal position, Panadol and Nurofen – a mixture or all of them.
This time however, the pain seemed a little worse than usual. A little more intense. I didn’t think much of it and put it down to not having had a period in some years. A few more months went by, and this pain seemed to be sticking around. Wasn’t constant, so it wasn’t in the forefront of my mind. I was also used to some pain around when I should have had my period, even when I skipped it with the pill. This pain started to be anywhere within the month though. 6months then passed with this pain having increased.
To some it would have been a very noteworthy amount of pain, however, I was used to a decent level of pain, it’s what I would have put down to just above my normal.
However, suddenly this pain became unbelievably intense. None of my usual techniques were working, even with the addition of panadeine. I had to sit down at work when it happened or stop what I was doing. It was waking me in the middle of the night. I got to the point where I was holding myself when these pains would come and go.
I had decided it was time to go and get a referral to my Gynae, which I did in June. I called to make an appointment, they said they had one that afternoon, I’d just finished a 14hour night duty and said I was unlikely to make that appointment. I had some holidays for the first time in almost 2years, in September. It was booked for day 2 of my holidays. Over the next 2.5months the pain only intensified, and I did my best to cope.
I went to my appointment. I mentioned that I had this pain and that I had nurse triaged myself with the likelihood that my endo had worsened and may need to be surgically removed. We then, most importantly to me, spoke about the idea of me having a baby. We went through my options, that I was at a good age to start harvesting eggs to either freeze or even creating an embryo that I could make and carry myself. My baby!! I was really here. I was really talking about doing this! I had picked names out. I hadn’t even told my family, we are very close, but I couldn’t wait to tell them with such overwhelming joy, of a surprise positive pregnancy test.
On examination my specialist said, my ovaries were looking good – I remember saying, “that’s great because they have to make some babies!” He took some black and white photos and asked me to meet him back out at his desk.
Once there, he had a brochure there for a surgical procedure, an explorative laparoscopy and hysteroscopy. He said to me “there does seem to be something in your uterus. So, what we’ll do, is this op and I can have a good look at your ovaries, your tubes and see if I can get rid of what’s in your uterus.” He went on to say that it’s ” possible it could result in damage to the uterus and make implantation of a baby unsuccessful, or he could get rid of most of it but it could grow back and it would also not allow for a successful pregnancy. But we need to get in there and have a better look.” I could feel myself getting emotional and there were a few tears.
Had he just told me I might not be able to get pregnant?! I asked “when?”, he replied “tomorrow.” I told my family, the tears started welling, the idea I might not be able to get pregnant…after all this time!! I booked it in for that Friday.
I woke from that operation in so much pain, more than I had originally! All I remember upon waking was being told he was unable to get the lump.
A week later I was called and told the cells had come back malignant and I needed to come in and see him. Malignant… cancer?! Cancer? I remember tearfully yelling “make it go away. Make it go away” in utter disbelief. How was I here?! Then I went into nursing medical mode, I was aware that my uterus was obviously going to need to be removed. Did I need chemo? Radiation?
In the waiting room with my parents, this pregnant couple came out of the office, they were booking their c-section. I turned to my Mum in tears and said, I’m never going to get to do that.
I left and went outside, in floods of tears. My Dad came and joined me. He walked with me and told me that we would work through this. Then my specialist came out and waved us in.
He knew my uterus would have to go, he didn’t know about any further treatments, I’d need to go and see a Gynaeoncologist, but I’d need to have some more blood tests and scans. I even asked that he’s very sure what was sent off, had been mine? He said yes.
5 days later I met with the Gynaeoncologist. Hoping to gather more answers.
It was definitely cancer, very rare and aggressive. Chemo and radiation weren’t options. They wouldn’t defeat the cancer. You’d just be getting the side effects. He commented that I was very young and so this was atypical, it wasn’t hereditary, it was a complete fluke.
He then drew my reproductive system and then placed this big red circle around everything that needed to be removed. To him, this was treatment, what needed to be done. I looked at this, in silent shock. That was my dream on that drawing. That was what I had wanted since I was young. That was my mini me, a creation out of love, my purpose, just gone.
Everything was circled except one ovary. Funny enough, on the opposite side that I had been holding myself. He said, I know fertility is important to you, so I will aim to keep that ovary for you and it’s important that we avoid surgical menopause if it’s possible.
I asked what the survival rate was, he said 50/50.
At that point, as if in a well-produced block buster movie, everything went silent. I couldn’t even hear my own heartbeat, my own breath, I was frozen. Time stood still.
I could only hear my Dad asking the question I had asked him over the weekend, this scale I had placed together, 0 being that it wasn’t cancer and it was benign, 5 being it’s cancer but it only needs simple treatment and 10 being it needed everything. I suddenly felt my Dad squeeze my hand, suddenly I was back from the abyss, he said, “Did you hear that, it’s 5.5 out of 10” A glimmer of hope, I thought. Only for my gynaeoncologist to interrupt and say, “sorry I said 9.5 out of 10.”
I was given a research article, only he had access to and told to think about it all, but I only had a week. No longer. The surgery needed to be booked.
Waiting to be called in for surgery was frightening, I called my niece and nephew to distract myself, hearing my 3yr old niece, who had no idea what was going on, yell as I was getting off the phone “Be brave Aunty D” made me lose it. For the first time since it all, I cried. I couldn’t stop. I was there because I had cancer. I was there in hope to discover that my life was able to be saved. I was there to have my baby dream completely torn away. In a moment that I had so longed to be the tears of joy for my addition to our family were instead tears of fear and sadness. My gynaeoncologist came to ask if I was ok, I bravely said yes as I tried to hide my true emotion.
The tumour was millimetres from being out into my abdomen, but they had been able to keep 1 ovary.
I managed to get myself home on day 3 instead of day 5 and the following day I received a call to say it might be a different sort of cancer type, not that much better, but they knew this cancer was responsive to estrogen and so it was being sent off to Harvard for final results.
I knew this meant, the ovary which had been saved, would need to be removed.
8 weeks later it was confirmed to be a rare type of sarcoma was indeed estrogen positive, I had no longer than 3 months with the ovary I had left.
I remember being told “do whatever you need to do, so that you can look back and know you tried everything.” Because once it was gone, it was gone. It also meant surgical menopause, at the age of 33 with no HRT.
I started my first round of IVF shortly thereafter, to attempt to collect some eggs. Not the path I envisioned but when I set my mind to something, I knew I could do it. 10 days into it, my gynae called, with the set back that my body was rejecting the hormones, essentially it wasn’t achieving what it should. I was so upset. I elected to stop and reassess after Christmas break.
The following week, we had an action plan, I was placed on the highest dose and for a longer amount of time. My fight was usually you’d have two ovaries, doubling the amount, I only had one and my entire body had been through an incredible amount up until now.
I did all the injections, bloated and uncomfortable, whilst still recovering. I had decided to freeze embryos as these were more successful than eggs. I had only 1 follicle, meaning at least 1 egg. I was told all you need is one. Sadly, the op was unsuccessful.
A week later, another blood test and I was called and excitedly told, to start immediately. This time an ultrasound showed 3 follicles. Which was too equal 3 eggs. I was over the moon!!
I was booked in for the op, to retrieve my eggs and create my embryos. My sister worked in the theatre next to the one I was in, she stayed with me as I tearfully told her how scared I was, she and my whole family knew how much I was hoping for this smallest slither of my dream to be mine. My gynae had agreed to tell her how it went.
I woke in recovery to the nurse asking, “What’s your pain out of 10?” to which I replied, “where’s my sister?” She went and got my sister, who I saw approaching wiping one of her eyes. I knew immediately. They didn’t get any. Not one. I had no eggs. I had failed. There was no baby. The nurse asked again, what was my pain out of 10, I replied 11.
My gynae came and saw me, wiping both his eyes, he was also emotionally committed and said how sorry he was and that sadly it was time to book the removal operation.
I booked my final cancer treatment operation. 6 operations in 7 months, for a very rare, aggressive hormone positive cancer, that was now to leave me with no baby and in surgical menopause.
Cancer had made me into a different version of myself. In fact, it had turned my entire life completely upside down. I went back to work 2 weeks after my final operation, but shiftwork was no match for the surgical menopause symptoms – Hot flushes, night sweats, weight gain, insomnia, lethargy, brittle nails, hair thinning, muscle & joint aches, osteoporosis, decreased sex drive, brain fog, infertile, self-image and confidence issues. Who was going to want to date me? I’m in my mid 30s and my body feels like it’s in its 80s. Not to mention the grey cloud of cancer hanging over your head, worried about a reoccurrence, which the only treatment would be surgery.
I made the 2yr mark, which I was informed was a good milestone. It was at this stage I decided to make it a daily effort to try not to worry about the C word. I wanted to take my life back.
I changed my job; I sold my place and bought a new house. Most notably with a yard as I proudly became a Mum, a dog Mum! To the two best paws! They’ve got me through it all, my angels with paws!
It’s more than 7 years ago that my life and that version of me completely changed having been diagnosed with cancer. I’m most grateful for the fact that I’m here. I’m here to share my story, because nothing matters to me more than my passion to make a difference to those that have, had and are fighting with Gynaecological Cancer.
We need to increase the survival rates of those diagnosed with Gynaecological Cancer, we need to research more treatment options for those diagnosed with Gynaecological Cancer, we need to know more, to do more. Gynaecological cancer is deadly and has lifelong permanent impacts, at any age.
So please help me, help all of those diagnosed with Gynaecological Cancer.
Because life has meaning when you have purpose. Mine is with the AGCF and we need your help!
Danielle
Watch Danielle speak on her experience and share her message on the AGCF Facebook here.
