Tuesday 10th October 2017
In partnership with CLIC Sargent, we’ve been helping MPs set up a new All-Party Parliamentary Group. On 11 October MPs, Peers, NHS representatives and people from across the charity sector gathered for the first meeting of the Group to hear from experts in teenage and young adult cancer: young people and their families. Ruth, a young teacher from London, spoke about her experience of cancer and shared why she felt that a group like this could make a difference to the lives of young people diagnosed in the future:
"My name is Ruth Munglani and I'm 24 years old. When I was 21, I was diagnosed with a rare form of cancer called Ewing’s Sarcoma...
I had just finished Uni and was backpacking solo round South America when I first started getting symptoms. I had to cut my trip short and defer starting my job to receive 11 months of treatment, consisting of chemotherapy, proton beam radiation in the States and surgery.
I remember sitting in the adult oncology clinic waiting to see my consultant and receiving lots of pitying looks from the people sat around me because I was so much younger than them. This was despite the fact that we all had cancer and were, in fact, in the same situation. And when I was diagnosed, it was my friends’ parents, rather than my friends who really understood what the chemotherapy was like. My friends were great but how could they understand the day-to-day reality of living with cancer? This all left me feeling very isolated.
So the fact that I was treated on a Teenage Cancer Trust ward made all the difference. It brought me together with people of my own age, who were in the same situation as me and who I could talk to. There was also a relatives’ room where my mum could meet other parents. It definitely helped my family and me to cope better with the experience.
Another very positive thing was the support I received from the whole medical team. During my third and fourth cycles of chemotherapy, I had a bad reaction to one of the drugs. I ended up collapsing multiple times on the floor and waking up with the crash team around me and pads on my chest, ready to shock me. Unsurprisingly I developed a bit of a mental block about going back into hospital. By the fifth cycle, I had just had enough. I knew logically why the chemo was going into my body but I couldn’t cope with all the side effects and feeling so out of control with what was happening.
I wanted out, but the most I could do was get out of my hospital bed and sit down on the floor. My consultant came in and just sat next to me. We didn’t talk about treatment that much, we just talked about life outside the hospital and all the things I would be able to do in the future. I also had Amy, the Youth Support Coordinator from the Teenage Cancer Trust who became a real lifeline for me.
She saw me as Ruth first, and a cancer patient second.
Together we worked out a way for me to get through each chemo cycle. When I was sent to America for proton therapy, she kept in touch with me, and when I went to Birmingham for surgery, she arranged for the Teenage Cancer Trust team there to come and visit me before and after my surgery.
One of the key things that has stood out to me when reflecting upon my experience and that of my friends’, is just how lucky I was that I was diagnosed within a few months of my initial symptoms starting. Lack of awareness, late detection and misdiagnosis is a significant problem for teenagers and young adults with cancer, leading to worse prognoses.
Some of my friends had visited their GP multiple times only to be constantly fobbed off. I met a friend who is now blind in one eye because she was misdiagnosed and the cancer was able to spread up her optic nerve. I met another girl who was wrongly told her tumour was benign and operated on accordingly. This incorrect surgery caused her tumour to regrow and double in size.
Another issue that has become obvious is the lack of research and funding into treatment for typical childhood, teenage and young adult cancers. Treatments do not guarantee survival and come with a lifetime of debilitating side effects. When I was diagnosed, I found the lists of side effects, both short and long term, one of the hardest things to deal with.
At the moment, I struggle with daily fatigue, which I’ve been told, will probably last for the rest of my life. As a result, I am currently unable to work full-time. I was sent for proton beam radiation in the States because it was more targeted and less harmful than ordinary radiotherapy. Yet still the radiation has permanently damaged my pelvis, so that I am unable to run which was something I loved to do before cancer. I also will be unable to have children in the future without medical intervention, but I am aware that at least I have a chance of being fertile whereas others are told there is no chance to save their fertility.
And yet, all my side effects pale in comparison to the fact that I am still here and still alive. I don’t know why treatment worked for me when it didn’t for so many of my friends. I am one of the lucky ones who has survived and who can now live as normal a life as possible.
And that is why I am speaking to you today. Now that I have been through cancer and am living with the side effects, I know just how much more of a priority childhood, teenage and young adult cancer needs to be.
I have a responsibility to speak up for all the young people who are and will be affected by cancer.
We need every young person to have access to specialist support services like the Teenage Cancer Trust or CLIC Sargent. We need more awareness so it is not the norm for young people to be misdiagnosed. We need more funding for research. And we need far kinder and more effective treatments, so that we are not left with a lifetime of side effects.