Pain

MY VULVA CANCER JOURNEY – by Lyn Ellard

January 2017 I had a L) Hernia operation, all went well and recovery was good. In February 2017 I developed an itchy burning in what I now know as the Vulva area, I went to my GP. on another matter but told her about the symptoms I had, she asked me to do a urine sample which I did. A few days later my GP phoned me to say I had a bladder Infection and she would leave a prescription at the reception desk for me to get anti biotics and some Canesten cream. The antibiotics and cream did help for a while, but the itching and Burning still continued.

Over the months each time I went to the GP complaining of the same symptoms only to be given script for Canesten cream which I would get over the counter at the chemist attached to the Medical Centre. Sometime later in the year I noticed on the R) side of the Vulva it was very sore and felt like there was an open sore, sometime it would bleed.

Being a women and 76 years old I took the word of the GP that it must be a bladder infection and just continued on, I would use Vaseline, Canesten cream and yoghurt to ease the pain especially when I had to go to the toilet.

Never in all the times I visited my GP and complained of my systems did she ever suggest an examination of the vulva area, over the summer months it became so painful that if I was home I would go without snickers as it was comfortable without them.

It was in March after I returned from a holiday that it got so bad I could not take any more of the pain, and I had a feeling it was not just a bladder infection it had also started to swell up above the hair line of the area.

On the 29^th March I went to see a new GP at the same medical centre as my usual GP was not available, she did examine me, said the vulva area on the R) side was ulcerated and not a good colour, had to do a urine test and she also took swabs.

Went back for results on the 4^th April 2018, the results were all ok, but she gave me a referral see a Gynaecologist at Murdoch, the Gynaecologist phoned me to say he was referring me to a Gynaecologist/Oncologist.

On the 17^th April in the evening I developed a lump in my R) groin and it was painful, in the morning the lump had moved up to the top of the groin. I made an appointment to see the new GP. She took one look and sent me to Fiona Stanley Hospital.

At the hospital they did an Ultra Sound and CT Scan. As I wanted my own surgeon I had to be transferred to SJOG Hospital Murdoch. I was admitted there on the 18^th April. While I was there they did more test and also did a biopsy of the Vulva area. I was a patient for 4 days.

While in the hospital the Gynaecologist/oncologist visited me and an appointment was made to see him in his rooms on the 4^th May. I received a call from the Surgeon to come and see him still not thinking much about it.

I saw him on the 26^th April. My daughter Amanda came with me, he was very nice about everything, he said the results from the Biopsy was that I had R) Lymph node cancer and he said they think the Primary started in the Vulva, many people asked me how I felt, I think I just had a numb feeling and I let Amanda ask all the question she was and has been my rock over this time.

I visited the Gynaecologist/Oncologist on the 4^th May, he did a biopsy under a local anesthetic in the surgery it was very painful but it needed to be done quickly. He told me the vulva area was the primary and the R) Lymph Node area was the secondary. Because I already suffer from Lymphedema he was hoping to only remove some of the lymph nodes.

I was admitted to SJOG Murdoch hospital on the 14^th May. I had a R) Vulva operation where they removed all the Vulva. All the R) lymph nodes had all joined together to form a ball so I had to have all R) Lymph Nodes removed, I became very upset and angry about it all especially with the G.P. as had she checked it out sooner I may not have had to have such major surgery. I spent 13 days in hospital. I was told I would have to have chemo and Radiotherapy. After coming home from hospital every morning for 5 weeks I had to have Health Care then Silver chain to come and give me a blood thinner injection into the stomach and a flush for the vulva area.

On the 13^th June I had a PET scan this had to be done before I started my Chemo/Radiotherapy treatment, it was done at SJOG Hospital Subiaco.

I started my chemo on Monday 2^nd July, I have to have chemo at SJOG Hospital Murdoch every Monday for 6 weeks. Tuesday 3^rd July I started my Radiotherapy at Fiona Stanley Hospital this is every day (Monday to Friday) for 6 weeks. During the Radiotherapy some days I just did not want to go and had to push myself through the treatment, it was a very stressful 6 weeks.

It was after the 4th treatment that I became very unwell in the evening, Tom (Husband) drove me to SJOG Murdoch emergency department, I was admitted to hospital for 4 days with a chest infection, I had to still go to my Radiotherapy and that week I only missed 1 appointment. I am still struggling with it all and have my angry moments towards my GP but getting better at it all.

On the 8^th October I went to SJOG Hospital Subiaco for a final PET and CT scan.

Went to S.JOG Murdoch on Wednesday 10^th October for my appointment with the Chemo Specialist o get my results from the PET scan. What a wonderful feeling when the Specialist told me all was good, feeling so blessed and happy with the results. I have a small node on the lungs but the specialist is not concerned at this time. I will go back to see him in February 2019 and have a CT scan before I see him. I feel a heavy load has been lifted and I can now look forward to a happy life ahead.

My advice to all women, you have the right to ask for an examination or a second opinion. If by writing my story I can save one person from what I have had to go through it is all worth it.

Raising Awareness of Women’s Health and Gynaecological Cancers –

Jeannette Preston’s letter reproduced below…

Dear Brothers and Sisters in Christ,

I am privileged to be a Methodist Preacher in the Falmouth Circuit in Cornwall, United Kingdom. 18 months ago I had endometrial cancer, and along with most women with gynaecological cancers, suddenly faced the reality that I might die at age 58. It was a traumatic time, there was much of the Lord’s work to do, my family give me so much joy, and I was not ready.

I returned to my post of Lecturer in Health and Social Care after 6 weeks and had not told anyone that I had cancer. It did not seem important. I just wanted to get on with the work I loved, and not have to think too much about having experienced such trauma.

Following surgery I began to be in touch with women around the world who had gynaecological cancers, and their stories affected me deeply. I was saddened to hear from young women how they were dying due to ignorance of the signs and symptoms of gynaecological cancers, many of them not having had the smear/pap test. Many were leaving young babies behind.

I read Kath Mazzella’s story and could not cope with the knowledge that she had had to have a radical vulvectomy while still a young woman. This mutilating surgery must be the fear of anyone who knows about cancers. To have your outer genitalia removed is beyond anyone’s ability to understand such awfulness. The daily discomfort, pain, inability to be a loving wife to her husband, plus the fear of the cancer spreading to other areas, is a dreadful burden to bear.

As a young nurse I had watched the operation that she endured and remember being horrified as I watched the patient’s genitalia being removed. It is an image that is unforgettable.

During prayers and times of reflection I came to change my views about keeping quiet about my own experience. I began to talk to those I knew well, and warn them about the signs and symptoms of womb cancer, telling them all to know that the smear test does not show other cancers in the pants area.

The more I spoke, the more I realised how little women know, and I was called to do something about it. I knew that our Father would not want the Rubies of His world being wiped out through ignorance. Proverbs 31.v.10 A good wife who can find? She is far more precious than jewels, the heart of her husband trusts in her… I knew then that I had to make a positive decision to promote awareness and PANTS was born. It is a charitable organisation which I run on my own and my aim is to save lives.

PANTS was chosen as a light hearted name which I hoped would attract the young women, those who are not having their smear tests, or who are not having safe sex and leaving themselves vulnerable to infection by their boyfriends and husbands of the Human Papilloma Virus which is likely to lead to vulval and cervical cancer.

For some reason which I find hard to fathom but which has some basis in Christian doctrines being taught, societies buy in to the misunderstanding that women alone are responsible for the transmission of sexually transmitted disease. It is rarely known that men can get cancer of the genitals and some have their penises removed from HPV viruses, and some will die.

We live in a society where women are blamed for marriage failures, for being unmarried mothers, for being raped, and children blamed for being sexually abused, and for getting the HPV virus and other diseases. No mention is ever made of the responsibility of men. I worked for 17 years as a child protection Social worker and was horrified in court to hear barristers defending abusing families by saying that the children were “ earthy”, some as young as 2 years of age. The implication being that the parents could not be held responsible as the children asked for it.

I believe that we as Methodists have a duty to change the views of society and not to conform to these dreadful notions about women being the cause of so much that happens to them which is inflicted by men.
Girls should be protected against the HPV by vaccination. Believe me no one wants their daughter, granddaughter, sister to die of cervical cancer, it is an awful way to die. In my view, linking arguments against the vaccine with some notion that it will raise promiscuity is such nonsense. It is a safeguard for all women who may eventually marry and not know what kind of sexual history their partners may have. It is the men who may infect the women remember. They should, and hopefully will, all be vaccinated in due course.

I spent a great deal of time with mothers who would not have their children vaccinated against the MMR because of the unfounded fears about it’s safety pronounced by a doctor who has long been discredited. And what happened as a result? Children died of measles. I see a connection between this and the HPV vaccination, except that many, many more of our children will die.

It will not surprise you to know then that I promote Human Rights for all people and included in this promotion is my belief that we are entitled to know about the risk to our bodies from various diseases. I cannot accept that it is not appropriate to talk about women’s diseases when Christ was asked to heal the woman “with issue”, who very probably, in my view, had some type of gynaecological cancer.

I talk about women’s health wherever I go, including the Pulpit, and have been overwhelmed by the support I receive. Life is precious to our Lord and Father, and is precious to me. Women struck down in their 20’s and 30’s face a terrifying future with radio and chemotherapy which has many many side effects which will affect them for the rest of their lives, and of course for many, nothing can be done and children are left without their mothers.

For older women like myself it is hard to face cancer, and to cope with a future of uncertainty, never knowing if it will recur somewhere else. I am committed to helping my sisters, and know that you will be too. I cannot sit by and let them die of ignorance and am inspired by Kath Mazzella who is working tirelessly to raise awareness. She is a phenomenon for good is this world.

In the love of Christ, Jeannette Preston.

www.pantsmatters.org.uk

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