Starting her own radio show after surviving bowel cancer was not exactly what she had planned to do. But Raphaela Ilgenfritz, a former flight attendant and currently a graphic designer is happy to expand her skill set.
Fueled by a desire to share positive information about bowel cancer, she has recently launched her own radio show - Stoma4Life on UK Health Radio. Her first show which aired during October is a window into the world of ostomies and bowel related surgeries.
For Raphaela the radio show is a chance to celebrate her life after cancer surgery and her life as an ostomate. She is passionate about encouraging others who may be going through a similar experience. The show is also about raising awareness of the risks and urging people not to leave things too late, when warning signs occur.
An ostomy is a surgery to create an opening (stoma) from an area inside the body, it is essentially an exit hole for waste to be removed from the body. Some people have an ostomy for the draining of urine - in the case where the kidney or bladder has been compromised. But others have an ostomy to remove waste from the bowel or intestines. An ostomy can be temporary or permanent depending on the diagnosis.
Raphaela was diagnosed with Stage 3 Cancer in 2021, strangely she had none of the typical risk factors associated with bowel cancer. The typical warning signs are – tiredness, weight loss, irregular bowel movements and swelling in the abdomen. The risk is higher for those who are sedentary or those eating a consistently bad diet.
The cancer diagnosis was a complete surprise – but she had had dealt with cancer before – but as a supportive spouse. Her husband Johann had been diagnosed with cancer twice a few years before and as a result the whole family had taken healthy eating and a change of lifestyle seriously.
Raphaela had always been healthy and was active, and she loved her job as a flight attendant which allowed her travel and explore different countries and cultures. But she had decided to return to her first career as a graphic designer because of the problems caused by the Covid 19 pandemic.
The cancer warning was to coincide with her decision to hang up her wings. She recalls: “ I had a general check-up which is part of the airline medical and then I was not sure if things were ok. "
The first warning was that her bowel movements were not consistent. She said: “I thought I had haemorrhoids, as I had experienced these after my children were born.”
The GP recommended blood tests, but a stool sample showed the presence of blood in the sample. It was then it was time to investigate further. Raphaela insisted on a colonoscopy to check her bowel and intestines. A colonoscopy is frequently done to investigate bowel problems. Firstly you have to clear your intestines using a special laxative preparation, then a small medical camera is pushed into the intestines via the anus, it is threaded along the length of the bowel to see if there are growths or lesions.
“I was nervous about the procedure, but the medical staff were very professional, and it wasn’t as nerve wracking as I thought. The result showed that there was an obstruction of the intestine, and the staff told me that it was probably polyps inside the intestine. I really wasn’t that worried.”
After that she was told to undergo a CT scan and then finally an MRI. She was mildly worried but thought it was probably just polyps. After the MRI she received a call to go to the hospital to speak to a surgeon.
She remembers: “The surgeon asked me if I knew why I had been called, I confidently said: “I guess you want to remove some polyps”, but then I saw the look in his eyes was very serious.
“They had found a cancerous tumour and they needed to operate as soon as possible. It was only 6 days between getting the diagnosis of cancer and having the surgery.”
Raphaela says: “I tell people I had cancer for six days – before that it was a mystery blockage and after that it was gone. I also make a point of never saying “my” cancer. I didn’t ask for it and I don’t believe it will come back.”
Raphaela was advised by the surgeon that an ostomy would be the best solution. She said: “I knew hardly anything about ostomies, and I just knew that it would save my life. The second option was to remove the cancerous lump, leaving the intestines and rectal muscles damaged but intact. But in this scenario she would be facing a life where she would need to be always near the toilet. The operation would hugely affect her bowel control.
She said: “I didn’t realise it at the time, but I went into survival mode. It was my training as a flight attendant, we are trained to assess any risk situation and to plan for the best outcome. I hardly thought about it, I just knew I needed to get rid of the cancer and choose the best option.”
The diagnosis and surgery were during December and she was so focused on making sure the family’s Christmas plans were on track, she didn’t have too much time to focus on the surgery itself. Her husband and two sons were very supportive, and she concentrated on the fact that afterwards she would be able to lead a full and active life.
“I’ve watched my husband go through cancer twice and he has managed to completely turn his life around by making good healthy decisions. Through his experience we have learnt that life is precious, and we have to take responsibility for our health. I trusted in my ability to be positive and to work with my body to remain healthy.”
Today she leads a very active and balanced life and she has never regretted having the surgery. “It saved my life!” Even after the surgery, the staff and ostomy nurses were very helpful and supportive. She admits: "At the hospital it was fine but when I came home, I shed a few tears.
“I realised that I would have to cope with all the stoma changes on my own. At first it can be awkward to change the stoma bags and you get self-conscious, but after a few weeks I was so much more confident, and now it is second nature.
“I was determined not to pity myself and to embrace the fact that I was alive. I think we have a choice to see things in a good or bad light and I have always been the type of person to look for the positives. But I do realise that others may not adjust to their situation as quickly as I did.”
Looking back Raphaela believes that her inner thoughts may have helped the cancer to manifest into a physical reality. “During the Covid epidemic I was very frustrated and I would talk to my parents who lived far away and I was worried about them and their circumstances. Without realising it I would often hear myself say: “I can’t listen to this, it is making me sick.” Perhaps on a cellular or metaphysical level I was inviting the illness. We will never know."
The cancer diagnosis has meant Raphaela has changed some aspects of her life. “I have learnt to practice self-care. I used to try and solve everyone’s problems. I was a real people pleaser, but now I make time for myself, and I am very conscious of my thoughts and I work hard to be positive.
“I am just so glad I am alive, and I can spend time with the ones I love.” She has also with hindsight chosen to be more focused on the now. “We spend far too much time thinking about – one day I will do this … and that … I realise that every day is that one day and it is a gift.
“I see myself as a work in progress and I am really happy to be on this journey and I want others to benefit from my experience.”
Her show Stoma4Life airs twice a month and can be downloaded as a podcast. On every show you can listen to various aspects of dealing with a stoma and also hear from others who have gone through bowel cancer and their own journeys to live life to the maximum.
To hear her podcast go to www.ukhealthradio.com or sign up to her website – www.stoma4life.com
You can also listen by clicking on this link. https:/bit.ly/3S0DV66
Copyright - Trish Beaver
Trish Beaver is a journalist, blogger and freelance communicator. She enjoys researching and exploring health and lifestyle topics and believes there needs to be more positive communication in the world. Her blogs can be found on her website: www.eagerbeavercommunications.com/blog
Thank you for the interview and the beautifully written article about my journey.