I’m Amanda Hayes and this is my story of vaginal cancer. In life, I like to think I’m unique. I’ve always had a quirky style, sarcastic sense of humour and a-tell-it-you-as-it-is kind of attitude. Not mouthy and unruly just straight as it is. This has followed through into my cancer. I’m unique in my cancer. I’m an anomaly. I’m now the happy smiling cancer girl.
On January 10th 2017, at the age of 28, I was diagnosed with stage 3 squamous cell vaginal cancer. Young female under the age of 30 you automatically think cervical cancer. No? Breast cancer then. No? Ah OK, then it’ll be ovarian!
But for me it was just good old cancer of the vag! Vaginal? Yep, diagnosed with a cancer most commonly found in women over 60… Now isn’t that a kick in the balls if you ever did see one.
I had a 10cm mass on the posterior wall of my vagina. Pretty big, pretty scary and if I’m honest… Survival? Pretty unlikely. I probably didn’t realise that at the time because looking back I survived on 70% positivity and 30% denial. There were also smaller masses that were slightly less identifiable near my illiac nodes.
So where did it all go wrong? November 2016 I just didn’t feel right. I felt like I had a hormone imbalance. I was bleeding constantly and I had insomnia. At the time I had the contraceptive implant so I went to get it removed. I didn’t know what was wrong, I just knew I didn’t feel right.
By the start of December 2016 I had this pressure. I couldn’t tell if it was constipation or what there was, just a feeling that I needed to poop. My mum had commented on my weight too… I was a little sensitive by this point. But I didn’t realise because I was in discomfort I didn’t eat. So the cancer fed off my body.
I saw my doctor again on December 14th. They sent me straight to the gynae department at my local hospital. Spent the whole day there. By the end of it they just thought I had an abscess and gave me some strong antibiotics.
I took them but the discomfort increased. By this point I was pacing my room at night in discomfort, not sleeping, not eating much, taking paracetamol and ibuprofen regularly. By now Christmas had kicked off and my GP was closed for the holidays. I called 111 several times but they couldn’t do much. They didn’t have my history on record and couldn’t prescribe me anything.
By New Years Eve I had a huge bleed. I was sat on the toilet for 2 hours whilst blood clots the size of my hand fell out of me. Looking back now I was an idiot. I should have called 999 but I didn’t like to make a fuss. I could still walk and talk. It can wait until everything opened again.
January 3rd 2017, as soon as the GP surgery was open I was there. And referred back up to the gynae department at my local hospital. Again I was there for a whole day. By this point they couldn’t use a speculum to see inside my vagina. It just hurt too much. I waited all day. By the evening I had another huge bleed. My mum got a nurse and she dismissed me and said just collect it in this and gave me a bedpan. 10 minutes later when I filled it and she came back that’s when the shit hit the fan. Biopsy. Diagnosis. Chemo. All within 10 days.
As the mass was of a large size and at a fairly crucial stage, my consultant decided to throw everything at me, as my age was in my favour. I started treatment immediately with chemotherapy.I began with 2 types paclitaxel and carboplatin. Paclitaxel turned out to be the bad kind… The hair losing kind. Ah my gorgeous, lush purple hair!! Yes, you heard me right, PURPLE HAIR!!!
Little did I know that it could get worse than that! My first dose of paclitaxel did not go well. I went into anaphylactic shock. Basically, 50% of the time, when administered, some people’s body rejects the drug and this happened to me. After a huge dose of adrenaline, chemotherapy resumed but it was administered at a much slower rate with every nurse on call monitoring my every move!
Paclitaxel and carboplatin continued for about 4 more weeks before my radiotherapy kicked in along with weekly doses of cisplatin chemotherapy. After 25 sessions of radiotherapy I next went on to brachytherapy – the insertion of radioactive implants directly into the cancer, a form of internal radiotherapy, followed by 8 more sessions of radiotherapy.
By the end of my treatment from the tops of my thighs to my lower ribs front and back my skin changed colour. I went from a fair skin, that tans slightly in the sun but burns easily to a skin that looked like it’s spent 20 days in the Sahara slicked up with oil. Without sounding racist my skin colour was a different ethnicity.
For those of you that have never experienced radiotherapy let me just explain the effects as best I can… It burns you. After treatment you generally have a red mark where its been targeting. Or sometimes your skin peels like you’ve been sunburned. It can blister, swell, redden, peel or all of the above. When I finished my treatment, as it had burned me in such a way, I could pull chunks of skin off in my hands. I practically spent the next few weeks in baggy t-shirts and no pants, slicked up with cream to help with the sores.
So with all that treatment I am now infertile. My eggs are naff. They’re non-existent. There will be no babies.
This isn’t because of my cancer. Vaginal cancer hasn’t made me infertile and it’s not fucked me up down there. I function normally… In case you’re wondering
Radiotherapy made me infertile. As my radiotherapy was directed in my pelvic region it didn’t just target my tumour. Radio beams hit my womb, ovaries, intestines, colon, stomach, liver, kidneys, the lot.
So with that on the outside, it’s no wonder it damaged my ovaries. So this probably brings you to the question: what we’re my fertility options? There were none.
From the day I was diagnosed, to the day of treatment beginning, there was 3 days. I had a very aggressive tumour. It grew rapidly and with the size of it already, they couldn’t risk any more time, in case it spread. It did, but they didn’t know that at the time and they hoped it wouldn’t. The option of harvesting any of my eggs for future IVF treatment was never on the table. It would have meant that I would have to be on a selection of hormone drugs to up my ante for egg collection. Not only that, but to retrieve said eggs it would also mean an operation and the tumour was in the way of the route they would take to collect my eggs.
At the time of being told this I didn’t care of the situation. When you’re that sick all you want is to get better. I never processed this part of treatment. I never dealt with it. I just thought logically and got on with what needed to be done.
After radiotherapy, brachytherapy and chemotherapy I was then under the care of the early menopause clinic.
You can only be officially declared menopause free when you’ve had no period for over 12 months. However I still needed to see them to see what function I had left. A simple blood test works for this to see what your FSH (follicle stimulating hormone) level is. This is the hormone that helps release the egg. My FSH was 84. I remember saying to my doctor “that’s good then?”… Umm… No. On average, it should be between 4 and 20. At 84 it means my body is trying to kick the ovaries into action. So with this, they knew that’s it. It’s HRT (hormone replacement therapy), artificial hormones to replace what my body can no longer produce.
If I didn’t take this? My body would be too screwed when I get old. Osteoporosis, brittle bones, muscle deterioration, heart disease, strokes, the list goes on. I’ve got enough to deal with already don’t I?! So I take it.
Hey, fun fact: did you know that although I’m on HRT I can still have a period if I wanted to! Not a real period, but apparently, some women who go through the menopause early feel they’ve lost a bit of their womanhood. Or naturally your body still bleeds monthly. HRT is expensive, like the contraceptive pill. Actually, some use the contraceptive pill as their hormone replacement. Look-wise there’s no difference in the appearance of the pills and the packet they come in. For me, I didn’t see the use of having a period if it wasn’t doing anything. That’s one nuisance I’m glad to be rid of!
During this consultation with my early menopause doctor she asked if I had a sister. Yes, I do, I said. She smiled and said good. She explained that in the future she could be an egg donor for me. I shot that down immediately. I love my sister, don’t get me wrong but that is just crossing too many lines for me personally. Until recently I realised she asked this because the NHS will not fund egg donation. I would have to find my own donor or fund it myself… This is about £5000+
I’ve always had strong opinions on where I stand with such tricky areas like IVF. I just wouldn’t do it personally. I couldn’t put myself through that emotional trauma. I have nothing against IVF or IVF babies I just don’t want it for myself. So it’s never really been an option for me. I never sat down and considered it.
I’m very much a practical thinker in life. And being this way I think has helped me considerably when I’ve had to deal with such emotional situations like this. Don’t get me wrong, I am deep down to my core devastated that I can’t have my very own baby but it’s OK, I have my cry and I move on. I deal with it.
So after all that treatment it was the dreaded waiting game. Nothing can be done for 3 months until everything has healed and internal swelling has gone down.
That’s all life consists of.
I wasn’t nervous of the results. There’s nothing I can do to change it but it made me anxious.
It’s funny, it’s not the cancer that can send your mind crazy: The fact that you’ve got it, that it makes you think of your mortality or even that it changes everything in your life. It’s the waiting.
You’ve got cancer. Wait. We need to put a program in place for treatment. Wait. Chemotherapy starts. Wait. Radiotherapy starts. Wait wait wait. Scan. Wait. Brachytherapy. Wait. Scan. Wait. Scan. Wait. Treatment finishes. Wait wait wait wait wait. Scan wait wait… Meet your consultant… Shit…I’m waiting.
The results were great! 10cm mass? Obliterated! My lymph nodes looked good, there’s slight scarring where the tumour was but all that was bad is now good in the gynae department! Woohoo!
There’s a suspicious area on my lung… What? I like my lungs. I need my lungs. My lungs are pretty fucking important! They’ve been pretty bloody reliable for 29 years so far! (I had a birthday by this point), Don’t start this shit now!
I’d been told I had a “fluffy” area on one of my lungs. It didn’t have much density to it so they couldn’t do a biopsy. It was only 9mm in size so it was nothing to be too worried about. It could be an infection. It could be cancer.
They treated it as an infection at the time so they put me on some pretty strong antibiotics. They didn’t think it was an infection though.
There was nothing they could do whilst it was so small and “fluffy”. So it was back to waiting.
The worst bit of all this cancer malarkey is your life gets put on hold. Cancer becomes your life. You try hard to not let it define you but it’s pretty fucking hard when that’s all that you’re faced with day in day out.
It wasn’t great. Yes, my “fluffy”, suspicious area on my lung was cancer. I expected that. It had doubled in size. Shit, that wasn’t good. It had spread to my other lung. Fuck… I didn’t expect that.
They used the word “aggressive”. It’s aggressive. For it to double in size and spread in 4 weeks isn’t great.
It’s funny, although it spread to my lungs it’s not lung cancer. Well they don’t call it lung cancer. It’s still classed as vaginal cancer even though the original cancer site is clear of cancer. So really I have vaginal cancer but in my lung. Confused? Yeah… It’s weird. It’s now metastatic vaginal cancer. Stage 4. They are hoping controllable but not curable.
So the plan was more chemotherapy and more radiotherapy. 6 sessions of cisplatin and paclitaxel chemo. I lost all of my hair this time. And once chemo was out of the way my next scan revealed it worked too well. My right lung was small enough to be treated with radiotherapy but my left was now too small to be targeted. Talk about a head fuck moment. After months of conditioning that treatment is good I now have to have no treatment on the left side and it now needs to grow more. So now I wait again. I’m almost to the 3 month post treatment scan mark again waiting to see what the next option will be.
Although this story has been heartbreaking in points I’ve kept my head held high. My dignity has flown out the window when your 5 doctors in with them poking fingers up my butt and vag but I’m good. I’m as healthy as can be expected. These days I’d say I’m 70% positive and 30% realistic now.
Take care and girls, look after that vagina!