Lovely Donna, firstly, tell us a bit more about yourself💜?
We had the pleasure of speaking to Donna and hear more about her journey from a clear pap smear to being diagnosed with cervical cancer, going through rounds of radiation and chemotherapy. Donna is happily married, has three boys and lives in the Uk.
How did you find out that you have cervical cancer stemming from HPV🔎?
After having given birth to three boys, having more discharge to me was normal. In June 2020, the discharge increased and I assumed I had an infection. Thinking it was bacterial vaginosis, I was prescribed antibiotics. The discharge went away, but blood clots started to appear. Big ones too. The dates didn’t add up so the possibility of a miscarriage was ruled out. A message to my doctor opened up the floodgates to a journey no one anticipated.
The initial examinations such as my up-to-date smears, internal and external ultrasounds all came back clear. No signs of HPV or any mention of cervical cancer. But after having bled twice during sexual intercourse, I messaged my doctor again. With the ongoing pandemic, we have an app in place, where you can email your doctors and they assess whether you need to have an appointment or they can prescribe something over the phone. Having had the possibility of talking to doctors during my lunchtime, especially as a teacher, I voiced my concerns right away. Otherwise, I probably would have held out a bit longer, which is scary in itself. So I can’t praise our doctors at the NHS enough!
I was at the hospital within 2 weeks since I received the clear ultrasounds in July 2020. August 17th, I was at the hospital for a colposcopy. Initially, they thought I needed an Ectropion (Cervical ectropion, also known as cervical erosion and ectopy, is a common condition caused when cells from inside the cervical canal, known as glandular cells (soft cells), are present on the outside surface of the cervix (neck of the womb)). The nurses were going to scrape these extra blood cells off that they thought had developed. But during the treatment, one of the nurses asked if she could do something else while she was at it. Ultimately, she performed a biopsy, I did not know this at the time. The bad news came right after. I was diagnosed with cervical cancer. I had a six centimeter big unwanted guest in my cervical area. As soon as the cancer word was voiced, in my head I was thinking, am I gonna die? Many scary questions were to follow. At that point we did not know the stage, or if it had spread. So I had to have an MRI and a PET scan to get it diagnosed as Stage 2B as luckily it had not spread.
What was your knowledge about HPV and cervical cancer before having been diagnosed with it?
When you think of cancer, I would always think of breast cancer at the time. Check your breasts, but cervical cancer was unknown to me. Like the renowned TV series ‘Miranda’, I’m very British when it comes to talking about things like this! I even find it hard to say to word sex which my friends laugh about!
My knowledge about HPV evolved around the pap smear. I always thought that a clear smear means you've not got cancer, but it's not like that anymore. And I think we've got to realize that there are tests to things and 98% chances, it's great, and it'll pick up the HPV. But those remaining 2%, who have cervical cancer without HPV, can have a devastating effect. My family has always been cancer free and had positive pap smears, so I thought I was in the clear as well. Throughout my life, I regularly went to the doctor, did my smears and trusted in the results.
How did this diagnosis influence your life🔍 and your mental wellbeing?
Before the diagnosis, I didn’t even take paracetamol for headaches etc.. and just got through and I was and still am afraid of needles.
So moving from this to suddenly weekly chemotherapy and blood tests was a huge change. I didn't even know what chemotherapy really was.
With the diagnosis you are entering a world of which you've never thought about before, and you don't really want to be part of it either. But suddenly, that is your life. Chemotherapy every week and radiation every day, that was my new life. I remember at the beginning, the doctor said to me, for this to be successful you need to come in for every treatment. I thought, of course I’ll comply with everything. It's going to save my life. Long behold, there was one night in particular I just didn't want to go back again. I didn't want to comply, I couldn’t do it anymore. The abdominal pain was excruciating, to the point it was painful to just sit or lie down. It was comparable to marbles of sharp blades moving around in my cervix. I went from a teacher, who was always active and engaged in all projects, to not being able to work for the last half year. It was like a rubbish Groundhog Day.
Mentally, I have always been positive throughout this journey. Getting through it smiling has helped me. If I didn't, that's when I'd be the crumbling mess. Talking to my friends, they've all come back with the same thing; You're the most positive person we know, if positivity was the key to that you smash it. And that is amazing. But on the flip side of that, it’s also very hard because you want to live up to that and you want to be positive.
Today, I’m going in for my final PET scan. I don't have any discharge anymore, I don’t feel ill so I’m hopeful to be cancer-free. Nevertheless, my battle after this will be about the long-term effects. Whatever happens after the scan, I think this is when it will hit me and I will crash. All these months of the terrible what-ifs, keeping it together for the sake of myself and my family and not wanting to be a burden on anybody. I don't like to tell people when I'm not feeling happy. It will also be a time to refocus on what I want and need to do.
What inspired you to start your Instagram page (@my_cervical_cancer_journey)?
There were two main motivators. Firstly, I’m unable to work so I needed something to keep me busy and give me a sense of purpose, besides the daily treatments. It’s also a means to keep a record for myself.
Secondly, when I was first diagnosed I searched the internet for similar stories. The majority I found were about breast cancer but not cervical cancer. So I wanted to share my journey for people who are in the same boat. By opening up, I became part of this incredibly supportive community of people sharing the same fate. I asked myself if I'm going to have it, why don't I try and help others to understand?
If my story can change just one person’s life, then it was all worth it. Readers can relate to me as your normal person, mum of 3 boys and a teacher.
What is the biggest misconception you get of other people regarding HPV and cervical cancer?
The biggest misconception by far is that if the smear is clear, you are clear of cancer. Another one is that HPV can actually be dormant in your body and you test negative for all these years. All of a sudden, the HPV gets active. Even if you have been with the same partner for years, you still need to go and get screened regularly. And a lot is just people don't know enough about it.
Is the lockdown somehow affecting you more than normal 🏡?
The biggest hit is not being able to see my family and friends. Normally, when you go through this kind of treatment, you can go out for lunch, get support from family and friends and keep occupied... It was supposed to be a time when your family comes and sees you, cares for you. For obvious reasons, this was not possible.
Homeschooling the boys added another layer of stress. I envisioned myself staying at home, watching TV shows, reading books, doing some hobbies and just enjoying the recovery time as much as possible. With everyone working from home and homeschooling this was no longer possible. So I did not get that relaxing time I desperately needed and still need.
On the other hand, COVID also helped my situation in some way. If it wasn’t for the possibility to reach my doctors through this app, I would have waited with putting forward my worries. The app took away the initial hesitation of speaking up for myself and taking my body seriously.
Do you have any recommendations for women who are on the same journey as you👭?
Most of all, put your trust in what's happening in your body. Listen to it and if you feel things aren't right, speak up. Say if you are thinking I don't feel right and get some advice. If I hadn't listened to my body, then it could have been a different story.
Further, get tested- don’t fear the smear! Those 5 minutes of discomfort during the smear far outweighs the three to six months of cancer treatment.
If you get diagnosed, take each day at a time. Ask questions. It’s this little bit of control you can have in this otherwise rollercoaster-like journey. And there are people out there with the same story, who can be of support. Be patient with yourself. I was struggling with that in the beginning, I was very snappy. It was frustrating because that's not me. I was getting annoyed by little things and my family and children got the brunt of that. Which again, upset me. Yes, things aren’t great. Yes, it's going to be an awful time. But you've just got to think of at some point, hopefully in the future, you'll look back on it and you'll think, gosh, I can't believe what I've just gone through.
To read more about Donna’s story and follow her journey, visit her instagram page.
Be smart. Be (c)LIT. Fly with us!🌺🐝