Last November, at 24 years old, I was diagnosed with an extremely rare uterine tumour, myofibroblastoma. From that day my life changed completely, as well as my body, my attitude and my outlook. It’s been a long and tiring old journey, that for the most part has been downhill, and unfortunately I’m no way near finished. Having any cancer diagnosis changes you forever and leaves you with psychological, emotional and physical after effects, and there is often little guidance and support on how to deal with these.
First of all a cancer diagnosis immediately throws your life into disarray. Everything else takes a step back and your health becomes your number one priority, your only priority. Everything else blurs into the background. Your social life, relationships, and career all have to fit around your new cancer schedule and into your altered brain space (of which your cancer and cancer related worries take up around 99.9%).
Even before treatment womb cancer has a large affect on your social life and relationships. I personally had very unpredictable and heavy bleeding for months before and after diagnosis. Living in the largest sanitary towels, sometimes ‘just in case’ makes feeling and looking good rather difficult, and wearing skirts a big no no! It also made sex rather challenging, and I would sometimes be bleeding too heavily for weeks on end to even consider the possibility. All relationship mystique goes straight out of the window when you bleed constantly and heavily. Having to ask my boyfriend at the time to help me escape a public place and walk behind me to try and hide my big red patch on my trousers wasn’t exactly my sexiest moment. Heavy bleeding also made exercising rather difficult, there are very few classes you can do in womb cancer friendly clothes. So during bouts of bleeding I would either have to give it a miss completely, or exercise at home (factoring in several runs to the bathroom and possibly a few outfit changes).
At the point of diagnosis, being only 24, most of my thoughts and worries were occupied by the looming possibility of infertility, and the decision I would have to make. Whether or not to give up my chances of ever carrying a child for the chance of my tumour spreading and possibly losing my life. To some the answer to this problem seems obvious, and I know many people didn’t understand my reluctance towards a hysterectomy. The importance of fertility varies hugely from person to person but I know for me, losing my fertility was my worst nightmare. I was also very aware of the possibility of regret later in life if the wrong decision was made, and how very devastating that could be. Womb cancer put a very grown up decision on my young head, and one of the largest effects it had on me was stealing my youthful freedom and carefreeness. I was forced to consider and plan out my entire life in those few weeks, when before I had merrily floated along taking life as it came, like all young people should!
My wonderful consultant and I did our best to try and save my fertility, and for three months I tried a hormone treatment, Zoladex, in hope it would shrink my tumour. I was the first patient that we know of to try and treat my type of tumour in this way, and unfortunately it started to grow even faster than before. In the end there was no choice and I had a total hysterectomy. But, at least I hadn’t had a choice in the matter. I can have no regrets as the weight of making that decision was lifted from my shoulders.
Even though my hysterectomy got rid of my cancer (and hopefully it won’t return). It brought a new pain to my life, and one that will never leave. At 25 infertility is easily ignored, but in 10 years time when all of my friends are starting their families I’m sure it will hit me like a brick wall.
Womb cancer and everything it brings leaves a mental scar, I’ve suffered with bouts of depression and anxiety (including the notorious scanxiety). I can liken post treatment life to films where characters are on the run from the police. They spend their whole life looking over their shoulder, never truly able to relax or let their guard down. Always on high alert. In the back of my mind is the possibility that my cancer will return, with the knowledge that this time it would be a whole lot worse than before. Every pain and niggle is a possible new tumour, every symptom and side effect rings alarm bells. I’m yet to have my first three month scan post op, but I already know the feeling. The worry and the anxiety that there will be bad news. There is usually bad news.
That’s the thing I’ve learnt about womb cancer, always be prepared for the worst, because your plans change at the drop of hat. Every single appointment I’ve had, I have come out in a different situation and with a different plan than before I went in. I can’t count the amount of times people have asked how an appointment went with questions that are no longer relevant. Everything I had planned for and decided on has had to go out of the window. After just about getting your head around your treatment and life plan, you have to start again. This unpredictability brings anxiety, and makes it hard to look forward. It’s a never-ending rollercoaster and you can’t see what lies ahead.
Womb cancer has affected me in countless ways. The hidden psychological effects have been the hardest to deal with and are often under-acknowledged, underappreciated and under-supported. Post treatment it is often assumed that you are ‘all better now’ and your life is back to normal. The hidden emotional impact from womb cancer will last my lifetime and the effects it has had on my body can never be repaired. Increased awareness and support can and will improve life for women like me.
You can follow Lydia on her website https://youngwildandfibroblastic.com/