My Story:
My name is Donna. I am a wife and a mother of three beautiful boys who mean the world to me. I am also a cervical cancer survivor. The symptoms first started in June of 2020; I started seeing large blood clots that started coming out of me when I used the toilet. I visited my doctor who didn’t find anything abnormal on my pap smear and both internal and external ultrasounds of my cervix didn’t find anything unusual. Based on my history of normal pap smears and nothing out of the ordinary during my examination, I was given two weeks of antibiotics to treat an infection.
The blood clots stopped for a little bit soon after, but I became concerned again when I bled heavily twice during sex. My doctor immediately referred me straight to the hospital to have a colposcopy. During the procedure, I was told I have cervical ectropion because the cells were growing outside of my cervical wall causing the excess blood that would need to be taken off. After the procedure was complete, the doctor told me she needed to do something else. I didn’t know it at the time but she was doing a biopsy and asked me if I had come to the hospital by myself or if someone was waiting for me. I was alone because of COVID restrictions and I did not think my symptoms were anything major. The whole room at that point felt awkward. I could tell something was not right but I filled the silence with random talk about work and my children.
Finding out:
In August 2020, I received the devastating news that I was diagnosed with Stage 2B Cervical Cancer. My mind went blank for a few seconds, then I was thinking I need to ask a question, but the only question that came to my mind was “have I got long to live?” One of the nurses gave me a hug as I started to cry. We were in masks and I probably shouldn’t have been given that hug but they could tell I needed it. After getting out of the hospital, I just wanted to be home. The walk was only a mile, but it felt like the longest mile I’ve ever walked. When I got home, my boys were playing in their bedrooms. My husband asked me if everything was okay and I just said, “no, it’s cancer”, and we both broke down.
Well within a week, I was diagnosed withcervical cancer. My PET scan showed a 6 cm tumor that hadn’t spread yet, but it was in my muscle wall. This meant I would have to go through chemotherapy, radiotherapy, and brachytherapy. Because of my fear of needles, I decided to have a PICC line to help stop feelings of anxiety and panic from blood tests and catheters every week. I am so grateful for the PICC line because it was much easier to look after than I thought and worked so well for the weeks I was having treatment. Chemotherapy started the first week of October. I did not know exactly what chemotherapy was, but when it arrived in a clear bag, I started to cry. I also started radiotherapy that day.
Toll Of Treatment
At the end of the first week, it was difficult for me to cope. I was so low and my emotions were all over the place. I found out that my iron levels were considerably low so I had to have a blood transfusion (yay to the PICC line again). This really helped me perk up the following week. The team at my hospital were great; they made this scary journey so much easier. They were always there to support me, whether it was with their kind words or if I needed someone to talk to. I was very lucky that chemotherapy didn’t really affect me apart from the sickness on the first day. It was radiotherapy that I had the most side effects from. I had to get radiation cystitis, which meant for 4 weeks I could barely move – walking was unbearable, laying down and sitting made me cry in pain. Baths made it worse and there did not seem to be an end in sight. This is when I had to consistently remind myself that I had to take each day at a time and I couldn’t think too far ahead because every time I did, it brought down my mood because the pain seemed never-ending.
When Chemotherapy was coming to an end, that is when the worry for Brachytherapy started. All I will say is, it’s not as bad as you think! I had epidurals for my 3 brachys and I honestly did not feel a thing! In fact, it was probably the easiest part of mycancer treatments. As I was still suffering from radiation cystitis during this time, it also helped me have a few hours of being pain-free! Since I finished treatment, I have had some lower back pain, so I have a DEXA scan booked to check my bone density. My body is going through early menopause and I am more tired and emotional.
Remission
On March 1, 2021, I received the news that my PET scan showed no evidence of disease, which means I am now in remission! It is a scary place to be in, however, as every ache and pain makes me worry that cancer may be back.
Personal Tips From Having Cervical Cancer
Going through any cancer treatment is difficult, emotional, and in a way, a blur. It was a whole new world to me – the hospital visits, not working due to my health, the endless appointments, and drugs. As someone who likes to be in control, I felt out of control. It was a weird feeling like I was in someone else’s body going through this terrible situation and I would wake up soon. In my head, this wasn’t going to be the way I go. I have so much to live for and this was just going to be a chapter in my life.
Tip 1: Be Your Own Advocate
Having a negative pap smear does not always mean everything is fine. Keep in mind that smears only check for HPV now, which means mine was still negative even with a 6cm tumor. Even if your tests come back clear, if anything does not feel quite right, please get it checked! If I hadn’t gone back to the doctors and just waited, my story would have been a lot different.
Tip 2: Have An Outlet
The first thing I did to take control was starting an anonymous blog on Instagram. It didn't stay anonymous for long though. My friends found it and then it became a place where I could not only spread awareness of my story but also keep everyone up to date with my progress.
I initially struggled with the endless amount of messages I received wishing me well and asking how I was. This sounds very ungrateful, and I certainly wasn’t ungrateful. I appreciated every single message, but typing out the same thing over and over again started to create negative thoughts in my head. I am someone who hates not to reply, so I felt I always needed to reply. The blog was an absolute lifesaver for this and I really enjoyed spreading awareness and having that outlet! It also helped me meet others going through similar experiences as myself, or had been through it. As my followers grew, I was lucky enough for people to ask for my advice and support. I really love helping others because I see it as something good coming out of something so bad.
Tip 3: Take A Break From Social Media
I recently spoke to someone who told me she looks at Instagram and all she sees are people relapsing or becoming ill and this made her feel that she will never become ‘well’. This upset me as I knew there are many success stories out there; however, in the cancer community on Instagram and other social media outlets, we often do see the worst side of things. While some people can cope, others can't. If you ever feel like this, protect your mental health and take a break from social media. There were (and are) many times I get frustrated over stories and posts I see online, even if it’s not cancer related, and it is hard to leave it behind. You have to remind yourself Instagram is not always real and if you don’t step back, you might go in a downward spiral.
Tip 4: Be As Prepared As You Can, But Be Realistic
I knew chemotherapy andradiotherapy would cause fatigue and may make me ill– was I prepared? No! I did not have a clue really, so the best prepared I could be was staying organized.
I wrote down all of my radiotherapy andchemotherapy treatment times and dates, which I could tick off once complete. My friend made me a ‘chemo’ bag filled with essentials that I may need. I made sure to have people I could reach in case I needed a lift or to look after my boys. In my bathroom drawer, I had all my newPJ’s and loungewear sets (yes I did often wear these for radiotherapy!) I also had frozen meals ready so I wouldn’t have to worry about having food to eat. If you go in with an open mind, yes it is a strange experience and the treatment may make you feel terrible, your mental strength can help you along the way.
Tip 5: Take It One Day At A Time
I tell this to everyone who is struggling. When you have 25 days of consecutive radiotherapy with somechemotherapy treatments in the mix, it starts to feel like the worst ground-hog day ever! There were many times I wasn’t in the best place mentally and I felt lower than ever before. I remember the nurse telling me, “if you comply with your treatment, you will be fine” and I thought, “why on earth would I not comply?!” However, by week 2, I was ready to give in because of the low iron in my body.
It is hard to look so far ahead and think the pain will never go away or the end of treatment is so far. When you start focusing on the future, you start thinking more negatively. There will be times when you might feel like you can’t handle it, but take it one day at a time. I told this to myself every morning and it really helped me.
Tip 6: Ask For Help and Support
There is nothing wrong with asking for help and support from anyone, whether it’s your friends, family, or someone online going through the same. You also can reach out to your doctors and nurses because they are there to support you every step of the way. Feel free to ask them all the questions that come to your mind about anything. One of the questions I asked frequently was “do you remember your first patient?” This helped me become more relaxed and form a conversation during my treatments rather than feeling like a patient in a big room all alone.
Use websites- the leading websites forCervical Cancer are ‘Jo's Cervical Cancer Trust’ and ‘Eve Appeal’. I used their forums and their phone lines a lot! It helped talk about my problems and get the support I needed. Getting support is so important, and feeling down and unable to cope is nothing to feel ashamed about. P.S. I don’t know anyone that has gone through cancer without having at least 2 breakdowns!
Tip 7: Be Kind
Finally, be kind to yourself. You are going through a lot; you cannot always do your best. Some days you will need rest, some days you will need to spend all day on the sofa, and other days you won’t want to change out of your pajamas. Honestly, no one cares. Everyone just wants you to feel better so ‘just do you’ and know your limits. Listen to your body and rest when needed.
Additional Resources and Support
If you are looking for more resources and support surrounding chronic illness and wellness tips, check out our other blogs:
- Self-Care & Wellness Tips for Chronic Illness
- Chemo Brain: What It Is And How To Cope
- Finding Friends In The Chronic Illness Community
- Chronic Illness Essentials to Keep in Your Backpack
What tips have helped you during your wellness journey? Let us know in the comments or share your story with ushere. We love hearing from our community!
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