Vulval Cancer~Where am I now by Carole read

Where am I Now?
A year ago today I had surgery – to remove cancer from my vulva and remove lymph nodes from both groins. This followed about three years of symptoms – for two of them put by myself down to menopause – itching – so I used the creams they advertise on the TV – they must be right eh - ?? they say any embarrassing itching must be menopausal so just use their cream, right?
When white patches appeared, I thought id better get checked out. A year later, after a string of various health professionals not knowing what I had and passing me on, a dermatologist requested a biopsy.
Independence Day 2018 I was told I has vulva cancer and sent home with a skin cancer booklet.
So I find myself on the day of the op, scared, tearful, terrified – having 6 injections into my vulva without pain relief – there wasn’t time – and over 2 hours in an MRI scanner to find my sentinel nodes – my CT and MRI had not shown any concern with the lymph nodes but they want to find the nearest ones to remove and test.
This fails. I am gowned up for theatre and told they have to take lymph nodes the long way round. And by the way you do know you will lose your clitoris , says a lady doc ive never seen before let alone been introduced to.
Seven hours later I emerge vulva- less and lymph node less. But I am so grateful just to be alive, I thought I was going to die on the table. All those nightmares I had pre- op about bleeding to death did not happen.
A week later I am let home, with drains in both sides of my groin. 300ml bottles you have to carry on your wrists, full of red disgusting gunk. We made a weekly drive up to London to get to my check-ups. It was agony. Good news, they got all the cancer, but VIN remaining. The lymph nodes were clear.
My groin wounds would not heal. I had district nurses every day for about 11 weeks changing my dressings – I went 5 days without a shower because they kept forgetting to ring and say I could shower then they would put dry dressings on. When you cant even put your own pants on , or walk, this was devastating.
I am a strong independent woman. I do everything for everyone else. I hated being unable to even look after myself. Physically rock bottom.
My husband and best friend literally every day did these things for me. I am clingy even now to them, who literally dragged me through the days. I missed work – I run a toddler group- it broke my heart to not be there sorting everything.
I had a lorry load of flowers, but hardly anyone came to see me after the first week or so. Turns out even your best friends don’t like to talk about cancer. Who knew ?.
I was back in hospital for a week, with cellulitis and lymphocyst infection – lost the drains and gained lymphedema.
I like to be active. I dance, run, walk, do HIIT workouts three of four times a week. I still do , I’m just rubbish at this all now, with fat legs and swollen knees that hurt. I will not give up. I am trying to find me again.
I was discharged from GUYS end of January 2019. I suddenly had no appointments – I was seeing nurses every day and then they all disappeared. Nobody to talk to. I went back to work. Everyone thinks I look well, my legs look ok , they say, because they was skinny you don’t notice them fat now- aren’t I lucky I had skinny legs they say. I have no one to talk to . Nobody understands. Nobody googles bloody lymphedema to find out how it feels, what it’s about. I am grumpy and angry when I should be happy to be alive. I have lost confidence, am shrinking into myself. Thinking bad things about friends who I feel haven’t been there for me. I am angry with Macmillan, who have not answered any of my enquiries. I speak to Dimbleby , who sort me counselling. And some reflexology, which is lovely. I can’t afford to pay for treatments. I am angry that most people I see for check-ups and appointments know next to nothing about this cancer. I tell them stuff. I know when they are bullshitting me , like saying it won’t come back – it has very low rate of recurrence. Not true. ladies in our group family die. We are all gutted. For them, their loved ones, and for ourselves, as we will think omg that’s going to happen to me. The anxiety is awful. I have never been an anxious person. Or a poorly one- I have had one op all my life until now, and don’t even go to the doctors – just to get my HRT. Up till now.
Increasingly I rely on ladies on our Group, Vulva cancer UK – who know what I’m feeling. They are absolute saviours. Family I have never met. A sisterhood. Thank God for them all, who have walked this path and now help others.
I hobble around, getting worse as the day goes on. I massage every night. I take all sorts of homeopathics, CBD oil, Turmeric, vitamins. I start Yoga and Pilates. These are supposed to help. They don’t. I feel angry all my lymph nodes were taken when they didn’t think anything was wrong.
So today I feel better- finding myself slowly – well trying to. They say find a new you – well I don’t want a new me, I want the old one. With bells and whistles. So I can do what I do, look after people, rush around, be me. Physically and mentally I am progressing, but boy has it been tough.
Everyone says oh my that year went quickly – I say no it didn’t. But I’m here. I’m alive, and right now just being monitored for the VIN which is stage 2. I am Lucky. Keep saying that to yourself, and you will believe it in the end. I am grateful to see the sun , and my sons every day. I have so much in my life to be thankful for, and life itself. It’s just harder than you think to find yourself, and accept the harsh realities of this brutal surgery and its consequences.
We are warriors. We will get this out there and help others, and we will hope that the medical profession learn more, and research will happen, and the future treatments will not be as life affecting as it is now.


Carole Read 3rd September 2020 – alive and kicking with fat legs !!