In May 2013 I started bleeding in between periods. I wasn't even that worried about it but Sarah my partner told me to go to the doctor where he did some blood tests which came back all fine. However over time the bleeding got worse and so I was sent to hospital for an ultrasound in 2013. They suspected I might be going through the menopause but again, nothing was found.
By February 2014 the bleeding had got very heavy and it started to frighten me that I was losing so much blood. I was referred to a gynaecologist but the appointment was a few weeks away and I was feeling faint and unable to get through the day at work so I booked a private an appointment instead. The gynaecologist could see a tumour on my cervix and after some further investigation I was diagnosed cervical cancer.
As a gay woman I always thought I didn’t need smear tests, I thought you could only get it if you have sex with men. I never had so I ignored invitations to go for my screening and at some point also filled in a form I found on the NHS website so I would not receive these letters in the future. Now I know how wrong I was.
I had further scans in the hospital to see how far advanced the cancer was and after that I was told I had stage 2B cervical cancer and needed radiotherapy and chemotherapy.
I started five weeks of weekly chemotherapy and then had 6 weeks of daily radiotherapy. I was also supposed to have internal radiotherapy but this wasn’t successful as there wasn’t enough normal tissue left around the cervix. So then I had another 4 weeks of radiotherapy. The chemotherapy made me very ill, with nausea and vomiting and I had bladder and bowel problems. The whole experience also affected me a lot emotionally. For a long time I didn't know how serious it was going to be, you just wait around and don't know if the next thing they tell you is that it has spread to your lymph nodes etc. Initially they did actually think it had spread further than they thought and started talking about palliative care and that was very difficult and put a lot of strain on me.
We also have a 12 year old daughter who we adopted and it was hard telling her I had cancer but we got some good advice from Macmillan which helped.
I finished treatment in August 2014 and have since then gradually got back to feeling well again. After four months off work I'm also back to work which I'm very glad about.
Jo’s Cervical Cancer Trust has helped me in many ways: through the online forum and I also went to a Jo's support group meeting in London prior to my treatment which was incredibly helpful. The women there were able to tell my from their own experiences what to expect from treatment and I was looking at all these healthy young women sitting in front of me and it really gave me hope that everything was going to be ok. I also attended Let's Meet where I learnt a lot and had a great day. I'm very thankful to Jo’s Cervical Cancer Trust.
It's really important to me now to raise awareness of the importance of screening especially in the gay community. Lesbians need to know that even if they have never had sex with a man that they need to go for screening and health care professionals also need to be made more aware that we're still at risk of getting cervical cancer.
Now I have had the treatment the only symptom is going through the menopause early. I will hopefully get HRT soon to help with this. Otherwise, I feel very well now.
Going forward I don't know if the treatment has worked and am clear of cancer yet. However, I feel so grateful to be well again and leading a normal life. I try to appreciate every day and get used to a less certain future. Facing my fears and successfully completing the treatment has also given me a huge sense of achievement. A life-threatening illness like this has also brought me closer to many family and friends who have shown how much they care.
Testimonial from the daughter of a cervical cancer survivor
When I was thirteen my mum sat me down and told me she had to have an operation on her cervix, she didn’t say why and I didn’t quite understand, but as my mum is a trooper I figured it was nothing to worry about.
The moment I noticed my aunts whispering around me I thought something was up. I dismissed it until I heard the word cancer. The word cancer brings up more emotions than I can fathom an amalgamation of fear, anger and elation that my mum made it. That she fought cancer back with a right hook and left it wanting. I was happy, I was proud. I was proud that my mother that had brought me up alone, gone through more than I care to mention here, had been dealt a blow by fate and knocked it down. She had met with death and told it to go away, she was busy. She had used that single mum strength and fought it with one hand behind her back and one eye on the time. I was relieved. The feeling of weightlessness grabbed me and lifted me up to the moon as she told me her surgery was a success, that she unfortunately wouldn’t be able to have any more children as the surgery had removed most of her womb, but she wasn’t planning on having any more children so that was okay. I felt like my heart and soul had been put back together.
But she fought it. And she won. She won with flying colours. She won without taking a day off work; she won still paying the bills and cleaning the house. She WON. And then, a few months after her surgery she started having early onset menopause, which we were told was normal considering what she had gone through. Then a few more months past and she was told she was not going through early onset menopause but that she was pregnant. She had fought the disease and told it to back off in the most incredible way and used her womb once more. On the 9th of July 2005 my brother Kai Raine fought his way in to the world. He came of fighting, he was born through a war and conceived within a woman who fights and wins.
And we’re still winning.
But many others don’t. If my mother had not have had her smear test that day, that week or that month, she may not have been here today, neither would my brother Kai. If she had not have been screened I would not have been writing this, the world would not be the same as we know it.
In 1977 I experienced bleeding outside of my periods so I went to see my GP where I had a smear test done. The test came back negative and the doctor said becuase I am gay and had never had sex with a man it would not be necessary for me to continue with cervical screenings. As this advice came from a healthcare professional I decided to no longer be screened.
Over 20 years later I changed medical practice and started to receive letters reminding me to book myself in for a smear test but I ignored them as per the advice from my previous doctor that it was not necessary for me to attend.
At 47 I went through the menopause but had a bleed in 2003. I went to the doctors to get it checked and he referred me for an internal examination. It was after this examination that I was told I had stage 1b1 cervical cancer which had spread to my lymph nodes. At that point my world changed and I thought I was going to die. I immediately blamed the doctor who had given me the wrong information and this made it difficult for me to trust the healthcare professionals who were now treating me.
I underwent a radical hysterectomy but because the cancer had spread to my lymph nodes I also had to have chemotherapy and radiotherapy. It was the most horrendous time of my life and I subsequently took nine months off work. The treatment wore me out and by the end of it I was a mental wreck. It was also a very tough time for my relationship as I was a miserable person to live with but luckily we got through it and are still together today.
After my treatment I had to have check-ups for 5 years every three months. Side effects from the treamtment have included bladder damage and rectal bleeding and having to have continual appointments with doctors made it very difficult to move on after treatment concluded. Every time I experienced a new side-effect I thought "What if it was going to come back?" Cancer had completely taken control of my thoughts and life.
Looking back I really wasn't in a good place through the diagnosis, treatment and after. It took me about seven years to become calmer and less worried. .. I was very angry about the advice I had been given all those years ago and it’s only now, ten years after diagnosis that I think maybe I should have taken a bit more responsibility, attended screening when invited or researched the risks.
Support came from my partner Barbara who I am so grateful for helping me through this time. I also used to go on the Jo’s Cervical Cancer Trust website and forum where I received great support and was able to read about other ladies going through the same thing.
Even ten years on I have side effects though. I can't sleep because I have to empty my bladder every hour and I can't have anything with caffeine in it as it irritates the bladder.
However, it’s been a long road but I feel like I have moved on and I have a better outlook on life. I try not to dwell on things too much now. I'm still working part time which helps and I have like minded people around me.
It is really important to me to educate women about going to their screening, especially gay women. I have two gay friends one of which won't go for screening even though she knows my story. Women have to know how essential it is for them to attend screenings and that gay women are not exempt from cervical cancer.