Davina

Cancerversary: April 2016

Age at diagnosis: 27

Diagnosis: CIN

Stage of cancer: III

How my story begins: My story is quite unusual. I had an abnormal smear at 24. My GP kept an eye on it but at age 27 I was referred to a colposcopy clinic. My then gynecologist told me my problem was one he had never seen in his 30 year career as a consultant gynecologist. After a lengthy examination he told me I didn’t have cancer but I had a problem that was very complex to treat.

I was born with a large transformation zone and immature skin in the inside. He told me right then and there I would not benefit from laser and that at some point down the line I would need a hysterectomy. He told me I must never miss an appointment and that my immune system was not dealing with the virus. It was the start of an emotional rollercoaster both mentally and physically that went on for 27 years. For years I had tests biopsies including a cone biopsy; high up biopsies which needed hospital admission and done in the theatre. No matter what they tried the abnormalities would never go away and continue to spread.

By the time I reached 43 I had my usual check up that I had become accustomed to for so many years before hand. I felt uneasy and knew there was something wrong. Six weeks later after more biopsy results I received a letter telling me I was as going to have to get a radical hysterectomy. I saw the gynecologist and he told me that unfortunately I wouldn’t be much better off than I had been all these years of attending the clinic. He told me that my problem after the hysterectomy would not be able to go up and out into my organs which was good news but it would however be able to travel down and that I would still have to attend regular colposcopy appointments and would likely need to have suspicious areas cut out for the rest of my life.

I went ahead and had the surgery and after the operation my gynecologist told me it was the biggest he had ever performed. They removed my womb, my cervix, the top of the vagina and all the surrounding tissues. The operation wiped me out and I lost a liter and a half of blood. I did not get a blood transfusion but instead was put on iron tablets.

A week after the surgery I was taken back into hospital with pneumonia due to the tubes going down the back of my throat. It was as a long road back to recovery. After the first month of the hysterectomy, I noticed I had a bleeding. I phoned the ward and they weren’t sure why. The second month the same thing happened and I was freaking out. I phoned my gynecologist and I explained what was happening and that I thought it felt hormonal. He told me that would be impossible because I didn’t have a womb. He said if it happened again he would have to see it for himself. Again the third month the bleeding happened and I went to see him for an examination. He looked and he said that I was bleeding but he did not know why and again I had to have more biopsies and another six week wait for results.

It was really worrying. When I went to get the results he explained I had vaginal endometriosis and that I would need to have my ovaries removed to get rid of it or wait until I went through the change which I chose to do. Not long after this it was time for my next appointment again and I had biopsies and the worrying wait for the results. When I got the results I got a phone call from the gynecologist to come and see him. When I went he said I would need to come back in to have more abnormal areas removed as it had started to regrow. I was totally distraught as my body was tired and exhausted with the major surgery I had and at that point I was 20 years down the line of being back and fore having so much invasive procedures.

I was upset and my gynecologist asked me if I would be interested in trying mistletoe therapy which helps to support your immune system. I was referred to a doctor who dealt with this treatment. When I met with him he told me I had so much surgery for so long that he was willing to take me on and allow me to try the treatment which he explained would be a lengthy process. He gave me injections to do at home myself and I injected them twice daily into my stomach. I did this treatment for seven years and continued with my hospital appointments and the usual biopsies. I started having the mistletoe injected into my vaginal areas where the abnormalities were still growing and it was very painful and distressing. My gynecologist had previously prepared me that it look unlikely I would ever be discharged from the hospital and his concern would be if the abnormal cells would go round into my bowel that I would have serious problems. I continued to go for my checks and have the appropriate treatments when suspicious areas were detected. It didn’t get any easier, even after 27 years of attending and all the smears, biopsies, surgeries, etc that each visit felt like the first as I never knew what they would find. It really was a nightmare.

Three years ago, at the age of 57, I went for my usual check up and my gynecologist told me that if my smear was normal they would be dismissing me from the clinic, as they had done an HPV test and it was negative. I was so shocked I burst out crying because I had always been told I would probably need to attend the colposcopy clinic for life. Waiting for that letter to come through my door was the scariest one I ever opened. After all these years I got the news I could only ever have dreamed of that I didn’t have to go back for any other appointments. I am now 60 and I realize this hanging over my head for so long had quite an impact on my mental health too. I was very well looked after by both my gynecologists and all the hospital staff at the women’s day clinic and I will be forever grateful to them.

Life before my diagnosis: Before my diagnosis, I was a happy "normal" person.

How I felt after diagnosis: At the age of 27, when the gynaecologist explained to me the complexity of my problem, I was terrified and unsure why it was happening to me. I was never promiscuous and never had casual sex in my life. I was unsure why and what it all meant. This was back in the 1980s and there wasn’t the knowledge or understanding that there is today. I couldn’t understand how other young women who had this problem could’ve been cured by laser, cone biopsy or hysterectomy and I could not. It made me severely depressed and unhappy. I couldn’t enjoy life properly as it felt like a constant black cloud.

Telling my family and friends: I couldn’t tell anyone. I kept it to myself from the age of 27 until the age of 43 when I had no choice because I had to have radical surgery.

My treatment: At 43, I had total hysterectomy and my fallopian tubes removed.

How I felt after treatment: I felt weak, depressed and unwell mentally as well as physically, as I knew before the surgery that this wasn’t going to be the end. My gynaecologist put off doing the surgery until it was no longer possible to wait. He prepared me that after this major surgery the problem could "no longer go up but it could still go down."

What was most difficult for me: Having to get help until I recovered was hard. I was daunted by reading in a medical dictionary that the problems were caused by a virus transmitted through intimate sexual contact. I had only had one boyfriend in my life when I became infected with this virus. I learned with age that most sexually active adults come in contact with HPV and that most people clear it. I was angry as to why my body could not do that for me.

What I did to help myself: I stayed positive carrying on as a normal mum, a housewife and daughter. I also have M.E. since my 20’s and still do to this day and it makes life harder because I get a lot of colds and flu like illnesses. I do what my body allows me to do; age has taught me to listen to my body as I was my own worst enemy, trying to do everything and ended up burnt out.

My life after cancer: My life after my treatments has left me with compassion and a greater understanding of what others go through regardless of where you have cancer in your body.

Where I am today: I have put this behind me but it has been difficult to do so. I look back and I realize how much the stress of it impacted my young life. It was there all the time and as much as I tried to be “normal’ and happy, it was like this black cloud hanging over you with a deadly disease inside you that you had to learn to live with. Being middle aged today, I realize how strong I was to go through most of it alone. Today I'm a grandmother of two beautiful grandkids and a CERVIVOR of this dreadful disease.

What I want other women to know: That you're not immune from this disease. Whether you’re young or older, you are still at risk. Many older women still think if they have been married to the same partner for their whole life they have no reason to go for smears. A lot of women are still unaware that this virus can lie dormant in your body for up to 30 years before it can cause symptoms.

Too many young women skip appointments because they think it’s unimportant. They need to realize they are dicing with their lives. This virus is a killer and it can attack without any symptoms! I also saw on Facebook that some young mothers are declining the vaccine for their 12 year old children. They were debating among each other that they think their kids are healthy enough to not need the vaccine. My advice would be prevention is way better than CURE. Get your children vaccinated!

How I will try to help others: I have a lot of knowledge and understanding because of what I have gone through myself and what I have read up on over the years. I would like to help other women to be more at ease and be able to speak to each other openly. Speaking is healing.

Any additional information you'd like to share: I’d like to write a book on my own experience as you often hear about women who do not attend their screening and how the consequences can be too late. For me, I went in plenty time to have what should have been a quick blast of laser but ended up being a lifetime of fear and anxiety. I want people to know we are all different inside and we don’t know how are bodies react when they come in contact with HPV or any illness for that matter.