Kelly holding her distended abdomen in ED before surgery

It shouldn’t be this hard

Name: Kelly
Diagnosis: Mucinous adenocarcinoma

40 year old Kelly is a working mother of a three and a five year old. She spent two years trying to get help from her GP until January 2020 when, despite being unable to eat because she felt full and tired, her stomach got bigger. Her doctor suggested she had a possible personality disorder and should watch her diet and get better sleep. In April 2020, two weeks into lockdown, the pain finally got too much and she went to ED. This is her story.

Once at ED, I was once again told to go home with laxatives and diet advice. But suddenly the doctor changed her mind when signing of my discharge and sent me for a scan. At this stage I looked nine months pregnant and could barely walk. The screen lit up with a mass the size of a full grown baby – I burst into tears – tears of joys that there was something there – that I wasn’t crazy. I had a 3L tumour growing in and around my organs. I was sent for an operation a few days later (after blood tests showed it to be benign) to have it removed along with an ovary and fallopian tube and thought that was the end of it. Until a week later when I got the phone call from the surgeon to tell me I had cancer – mucinous adenocarcinoma of unknown origin. I was blown away. I had no concern that a cyst would be cancerous! The next few months are a blur. I was distraught – I have two young boys, the type of cancer doesn’t generally respond to chemo. I had another operation to stage me, do washings, take biopsies and check other organs and was sent home a day later. I was in no way able to look after myself so my husband had to. I was taking so many painkillers I couldn’t keep track, let along get out of bed – for four weeks!

I was given the all clear two months after my visit to ED but recommended chemo as there was a chance minute cells were still somewhere in my body. The only option given was this chemo or “wait and see”. Ultimately I decided against the life long side effects of chemo over the small chance it may make. any difference. I had to do a lot of research because all I had heard was mucinous do not respond to chemo. The oncologist didn’t really divulge too much about this in our meeting, just that he would do the chemo if he was in my position and when I brought him my evidence he said it was my choice and as there was no evidence any disease was left, he supported me. But my story doesn’t end there.

I ended up having a mental breakdown – I was damaged goods – a 39 year old who couldn’t have more children, who had cancer and was still fatigued and I felt like I took ages to recover. I mapped out my suicide, dying was all I ever thought about – I drive past the cliff I planned to one day drive over every single day. Once I’d refused chemo, any psychological or other help disappeared. Friends assumed I was ok, life went on for everyone else and when they did find out I’m not ok, I just get told how I should stay positive and think of my children, how I’m so lucky – no one quite gets the stress of a cancer diagnosis and its life-long effects.

Every pain I have is cancer. It follows me around everywhere I go. And I can’t help but wonder – if the first doctor I went to had been able to get me a scan, (and send me for the correct blood tests) would the tumour have even been cancerous? It had over a year, maybe two to grow. Has the medical professional let me down in the worst possible way? And when will it come back? Is it already here?