"Nothing can prepare you for being told you have cancer. On July 15th 2016, I took a phone call that would change my life forever. I was 31 and about to be diagnosed with a cancer that I didn’t know existed and that just doesn’t happen to younger people.
Just over 12 months earlier I had started to experience some unusual symptoms. I had PCOS so had always had unpredictable cycles, but I had started spotting. I visited my GP but my symptoms were dismissed as being the result of hormones. This continued for several months until one Friday evening I bled so heavily that I felt compelled to call NHS 111 for assistance. They made an appointment for me at the local out of hours service where I was admitted and discharged in the space of about 4 hours. I had several examinations and blood tests. They wanted to rule out miscarriage, as my husband and I had been in the process of trying to start a family when all these problems started. As the heavy bleeding had slowed to almost nothing they put it down to one of those things and didn’t recommend any further tests.
Several weeks later after constant bleeding I visited a different GP and pushed for an ultrasound, by this point I had been bleeding and spotting for pretty much 3 months straight. My confidence was plummeting, I felt comfortable in nothing but dark leggings, one by one I had to stop netball, running, Zumba and my lovely yoga class. I was exhausted and probably anaemic. Activity exacerbated my symptoms and I spent the whole time worried about leaks. My mood was sinking and I had no idea how much worse it was going to get.
By September, I finally had an appointment for an ultrasound. I could tell by the technicians face that it wasn’t good news, obviously she couldn’t tell me anything but she advised I followed up with my GP. Several days later I received a message to urgently call the surgery. I was referred to a gynaecologist and at this point we triggered our private health insurance. Appointments and biopsies followed, but I didn’t find out I had hyperplasia until after a disastrous trip to Cornwall. During this time I was teaching cookery in a school and couldn’t wait for a half term break to Cornwall. During the long drive down I had started cramping and bleeding heavily, I persevered for the rest of the evening but it seemed to be getting worse. I barely slept and by the following morning it was clear I needed some help. Another call to 111 and they sent me straight to A&E. The next few hours were a horrific blur, I was admitted and hooked up to various drips, I can even remember what they were. 2 days later, we cut short our trip to Cornwall and headed home as I still felt so poorly. After informing my consultant, he decided to do a more invasive biopsy. I was also started on medication that I cannot recall as well being given a prescription for tranexamic acid.
By this point I decided that needed to give up work, I was in constant pain, constantly bleeding so heavily regular sanitary protection wasn’t lasting more than 15 minutes and had to resort to giant granny incontinence pads. I couldn’t cope with being on my feet, my mood was getting lower and lower and my management at the school I worked at were completely unsupportive. I left my role at the end of the term, just before Christmas. We had plans to spend Christmas with our best friends and made the 2 ½ hour journey to their house Christmas Eve with the car packed with food, drinks and presents, we were so excited. Christmas Eve evening I started to experience significant cramps, by midnight I had started bleeding heavily. After a sleepless night, I was running low on sanitary protection (even though I had packed more than I thought I would need for the several days we were suppose to be staying with our friends). It was all getting so bad and I was in so much pain and felt so unwell we had no choice but to decide to drive home on Christmas Day. We stopped at the services on the M4 on the way home and thank goodness Waitrose was open so we could buy a ready meal curry to eat when we got home.
I love Christmas dinner so I was heartbroken, this horrible condition had wrecked my holiday, ruined Christmas, made me stop my activities and made me leave my job. The following month got worse and worse, the pain became unbearable. The pain was so intense I couldn’t breathe or talk during the waves of pain. I couldn’t walk very far without being in awful pain and triggering extremely heavy bleeding. I was a complete mess. I had chest infections, flu, constant infections in my wisdom teeth it was like my body was really struggling and I was just out of energy. Finally I decided with my consultant to try a medication called Zoladex. It shuts down hormones and causes medical menopause.
Finally I got some respite, my symptoms stopped completely. I managed to go on a 2 week holiday without any problems. No bleeding, no spotting and no pain. I finally felt that I could see light at the end of the tunnel. If only, this was true. After our holiday I had another biopsy scheduled. I was so unconcerned by it and as it was just biopsy to be performed in clinic I went on my own. 2 weeks later I went back for the results and my husband almost didn’t come with me as we both assumed it would only be positive news.
How wrong we were, my consultant had bad news. My hyperplasia had changed to complex hyperplasia with atypical cells. I would need another more invasive biopsy, MRI, blood work and my care was transferred to an oncologist gynaecologist. At this point, there was cause for serious concern but my doctors still believed that it was manageable.
On the 11th July I had a biopsy under general. Next few day were spent waiting anxiously for my results. On the Friday my consultant called and told me they had found cancer. My world began to crumble, I couldn’t even finish the phone call, my husband had to take over. My consultant was very kind and gave us his home number so we could call him with questions later that evening. The next few hours and days were spent breaking the news to friends and family. I felt strongly that I could control who I told. I wanted to be honest and open. I had hidden my illness for a long time as it was an embarrassing ‘lady problem’ I didn’t want to do this anymore as I knew I would need support. Unfortunately my consultant was about to go on holiday so I had a long 10 day wait till I would see him again. When I did I asked lots of questions however it was already decided my only treatment option was a total hysterectomy.
I was devastated. I thought my life was over. My case was discussed at the MDT meeting and they also concluded that a total hysterectomy was my only choice as the cells had been graded as grade 2. At this point the cancer didn’t scare me as much as my loss of fertility did. I was 31, I thought I had more time to have a family. I started having panic attacks, couldn’t sleep and generally started to fall apart. My husband was amazing, he worked from home a lot and was just generally around, he cooked dinner (and he doesn’t cook!!) I was so fragile and I honestly thought I would break. Finally my GP started supporting me and was happy to help where she could. I needed sleeping tablets to get any sleep and I started therapy privately. My consultant knew that we had wanted to start a family so he made arrangements for me to be seen by Birmingham Women’s hospital to discuss egg retrieval. The MDT also agreed that we could have 1 attempt. As my cancer was hormone driven there was concern over the use of hormones. Had I known just how hard a process that would be I’m not sure I would have put myself through it.
At my first appointment I met a doctor who wanted me to meet his professor as he believed I should have the option of trying to reverse the cancer with progesterone. Unfortunately when I got an appointment with the professor he pretty much laughed us out of his office. My husband was fantastic driving me to every scan and appointment. Physically and mentally it was completely exhausting. I had scans pretty much every other day for over a month. During the egg stimulation period, my grandma died. Her funeral was 2 days after egg retrieval. I was sore, bloated and tired from the general. It was such a difficult time. Looking back I have no idea how I got through. The day of my egg retrieval I received an email scheduling my hysterectomy for the 21st September. I couldn’t believe all this was happening to me, I felt so powerless. I was so done being poked and prodded. Every appointment felt so invasive.
The day of the hysterectomy was rough. First up the nurse made me do a urine sample to check I wasn’t pregnant, such a kick in the nuts. The surgery went well. I had an open abdominal hysterectomy. Unfortunately the private hospital were not great at managing my pain and I had a horrific first night. The exhaustion of no sleep set me back a little bit but I was up out of bed next day. I spent 3 nights in hospital. I was sick a lot, dignity was left at the door. The surgery really took it out of me. The hospital was not great with pain relief, and sent me home with less than a week’s supply of pain killers. My GP prescribed me some strong pain killers and more sleeping tablets to help me get some rest. Decent pain killers made a big difference, that evening I ate something properly in over a week, and 2 days later I even made it to a bridal appointment to see my sister pick her wedding dress (this was 10 days after abdominal surgery). I’m sure I looked oh so glamourous in the surgical stocking I had to wear for 4 weeks.
In November I switched to a new therapist and have spent months trying to understand my emotions. I had grief, trauma and anger to deal with. I felt strongly in tackling all of this and initially my therapy sessions were very hard and I felt drained after each session. I took all the advice I was given to take things slow, not lift heavy things for a while etc. I knew I had 1 chance at a good recovery so I was a good patient and followed doctor’s orders, incredibly frustrating as it was at the time. Now I am dealing with surgically induced menopause, it’s really hard. Headaches, feeling emotional and vulnerable, migraines, lack of sleep and the hot flashes. People make jokes about hot flashes, but they are awful. My consultant first tried northeristerone to control symptoms, and it did work however it caused terrible headaches, the second medication I tried caused nausea. I’m now trying HRT patches, which means more blood tests to monitor the oestrogen in my system.
The following weeks and months were incredibly hard; recovery from the surgery was slow and even today 7 ½ months later I still get tired easily. I still have a trapped nerve in my wound and still get pain. I have seen a pain specialist who tried a steroid injection. I have good days and bad days still. Although my story is mainly a tale of woe, I can confirm things are brighter, easier and constantly getting better. After almost 2 years I am finally starting to feel like myself again. I am starting to feel at peace with the world again. Cancer took my womb and my chance of having children but I didn’t want it ruin the rest of my life. 6 months ago, I wouldn’t have cared less. In fact I didn’t care if I didn’t wake up, but time is a healer. I have gradually got stronger and at peace with everything that has happened. In September 2015 when I was first unwell I had gone back to college to retrain as a florist, I managed to complete the first year, but had to postpone the second year. However in recent months I have started my own business. I have taken a few orders, I have a few weddings booked and recently I turned Mother’s day (a day I had been dreading) into a positive by advertising bouquets and jam jars filled with flowers for sale. I sold and delivered 37 items. I was so proud of myself.
I am starting to see a future, it’s very different to what we had planned but I am so proud of myself for pulling myself out of such a black hole and starting to take positive steps. Finally, today I went clothes shopping. In the last 12 months the only item of clothing I bought was a dress for my Grandmas funeral, and I have lived in leggings but now I feel I want to wear colours again. I’m ready to wear a skirt or jeans.
I have turned a corner and every day I feel I can achieve and accomplish more and more."
If you would be willing to share your story then please get in touch using the contact form.