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 !!
15 Comments
I had been experiencing itching and discomfort on my vulva off and on for about 7 years or more. Canesten was a constant repeat prescription with only limited relief. I had presented over the years with symptoms and been treated for thrush, or advised about washing powders, soaps or too much sugar in my urine. In the year leading up to diagnosis I had been told my symptoms were from menopause. With hindsight I should have been more direct and explicit with the doctors and asked to be examined. My burning and pain felt like it was at the vaginal opening so that's what I complained about.
In September 2018 I presented myself at the locum GP and told her I thought I had Lichen Sclerosis as the burning, itching and bleeding was unbearable. She corrected my pronunciation of Lichen Sclerosis and then asked me what did I know about it! I lied and said my mother had it and on that basis she then examined me and confirmed my self diagnosis. During the consultation she discovered I had been bleeding post menopause and advised that she would be sending me for womb biopsies. Bleeding after menopause needs investigation as it can be a sign of womb cancer. I'd been dismissing it as just my hormones and wasn't unduly concerned. Two weeks later I was seen at an outpatient clinic for biopsies of my womb. Unfortunately, as I'd never had a vaginal birth my cervix was too tight and the doctor couldn't get through to take the samples. After a number of attempts and increasingly torturous looking equipment he said I was going to have to be admitted and have the procedure done under general anaesthetic. I was admitted a couple of weeks later to have a hysteroscopy and biopsies under anaesthetic. On the morning of surgery I had a chance conversation with a consultant gynecologist that I since have had no doubt saved my life. I asked if she could be gentle during surgery as everything was so raw and sore down there. She was surprised that the steroid regime for Lichen Sclerosis hadn't been helping, and she suggested doing vulval biopsies as well. Three weeks later, barely a week before my 49th birthday, I was told I had VIN3 and squamous cell carcinoma of the vulva. My womb biopsies were clear. Had the vulval biopsies not been taken I would have been misguidedly walking about thinking I was fine while my cancer continued to grow. It was another month before the surgery to remove the cancer took place. I also had sentinel lymph node dissection on both sides to check if the cancer had spread. I was lucky, my cancer was contained in the vulval area, albeit very close to my anus and there was concern that trying for clear margins could damage my sphincter and risk incontinence. Scroll forward to the present and I've had biopsies repeated as I was symptomatic and the gynae oncologist suspected there was evidence of VIN. I'm just waiting, hoping for the best but won't be surprised if it's not good news. Vulval cancer likes to recur, especially within the first two years. I'm surprisingly calm about it. Even though it's been a tough journey. It's the things you wouldn't expect though that I've found tough. I'm blessed with amazing family and friends and I've had amazing support. Messages of thoughts and prayers from people I barely know really lifted my spirits in difficult times. They helped compensate for the people who couldn't handle my diagnosis and disappeared. The judgement can be pretty tough too. Comments like, " Oh well at least it wasn't breast cancer!", "awe at least it was only surgery and she didn't need chemo". I don't think you can compare cancers and cancer treatments like that. All cancer sucks in my opinion. Vulval cancer, like any other cancer, has its own individual challenges. It's quite rare and a lot of people have never heard of it. Those that have heard of it believe it to be only an older ladies disease. The average GP will see only one case every seven years. It's difficult to talk about because of where it is. It's still a taboo with a stigma attached - as if we got it because of our sexual activity. There are lots of misconceptions about vulval cancer but it's not the easy cancer some believe it to be. The surgery to save our lives is often described as barbaric and mutilating by some ladies. The physical and psychological after effects can be severe and long lasting. It's painful, and traumatic and often very lonely and isolating. Finding the facebook support group truly saved my sanity, despite me having a really great support network. I've been very open about my diagnosis, using my experience as an opportunity to raise awareness where I can. I no longer care who judges me as long as people talk about vulval cancer. I use the word vulva as often as I can and encourage others to as well. It should be as normal as saying elbow - although judging by the look of horror on some folks face sometimes, we are a way off that level of normal! I attended my doctor in 2017 with a small ulcer that wouldn’t heal on my vulva. My GP said I also had a lot of white areas that looked like lichen sclerosis(LS)and she was referring me to gyne.
October appointment at gyne said I had classic LS and the ulcer was nothing to worry about and to come back in 6 months. December the ulcer was still there and getting bigger. February 2018 saw different gyne who did a biopsy and phoned me a week later to attend the hospital that afternoon. Attended to be told I had vulva cancer. I had never heard of this cancer before. Surgery to remove a part of my vulva and lymph nodes was scheduled. The surgery was originally scheduled for 2 hours but instead was over 7. Results from surgery showed margins were not clear and I was to be given 27 sessions of radiotherapy. Some people said “ oh is that not the better cancer to get?” Attend my checkups regularly every 4 months and no problems until June 2019 when I have a weird sensation in my thigh. Go for my regular checkup with specialist and we find a lump in my groin. More tests and scans and biopsy’s , brain going into overdrive. July 2019 told I have terminal cancer as it has returned and got itself deep in the muscle and too near femoral artery so they can’t do surgery only some radiotherapy to give me a bit more time as without the treatment I only have 2 months. It has also spread to my lungs. Instead of enjoying life as a mother, sister, daughter, aunt or gran I have a different set of priorities. To make it easier on my children, I have now arranged all the hard bits, my funeral, my will. So no it is not 1 of the better cancers to get. |
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