DESCRIPTION
Raphaela Ilgenfritz survived colon cancer and rectal cancer. She is from London, United Kingdom, where rectal cancer is known as bowel cancer.
Her cancer journey did not begin in the way most cancer journeys begin. She was going through post-menopause during the COVID pandemic. When she noticed something different about her bowel movements, she thought those differences were tied to menopause. A flight attendant who had traveled the world, Raphaela put in for early retirement at age 55. Because she was still employed by her airline, she was eligible for an annual medical checkup. A doctor concluded Raphaela had hemorrhoids, but she disagreed, believing her problem was something else.
She requested a colonoscopy. It revealed a polyp. Raphaela asked if it could be removed, and the doctor said he couldn’t because it was “too big.” She requested and was able to make an appointment for a CT scan and an MRI. After those tests, she was told she had Stage III bowel cancer.
The doctor said if there was any good news, it was that my cancer had not spread to any organs; however, the location of the cancer was such that it was inevitable Raphaela Ilgenfritz would become a stoma, meaning for the rest of her life she would have to wear a colostomy bag.
Before Raphaela could get the polyp removed, doctors had to determine whether she needed chemotherapy or radiation treatment. Then she was told because of the location of the polyp, she would not have to go through either regimen. Six days after her diagnosis and just before Christmas in 2021, the surgery was scheduled.
In the meantime, she had to become accustomed to living with and maintaining a colostomy bag. As unpleasant as this was, Raphaela quickly realized, “I’ll have a bag for the rest of my life or a tag on my toe.” She addressed having a colostomy bag like her first being a parent. At first one has no idea how to change diapers, but then it becomes second nature. The same dynamic played out for Raphaela with her colostomy bag. She says it doesn’t define her life. It is just what she does.
Meanwhile, Raphaela Ilgenfritz was thrilled to learn her surgery had gone as well as it could have. Her care team announced to her, “Raphaela, we have got all the cancer,” which at that time of year became an unforgettable Christmas present.
Raphaela says whether one calls it rectal cancer or bowel cancer, the disease is a silent killer. That said, if you notice anything unusual about your bowel habits, to get them checked out. This, she says, is the only way to get in front of this type of cancer. She amplifies her message with a show on UKHealthRadio. Her message also is carried on her website, https://www.stoma4life.com
Additional Resources:
Support Group:
Raphael’s website: https://www.stoma4life.com
TRANSCRIPTION
Bruce Morton: Rectal cancer and colon cancer, a formidable one-two punch. Our guest on this episode of the Cancer Interviews podcast was diagnosed with both, but survived. I’m your host, Bruce Morton, and I want you to hear about what Raphaela Ilgenfritz of London, United Kingdom has done and is doing to help others diagnosed with below-the-belt cancers. Now, here is her story, and Raphaela, welcome to Cancer Interviews.
Raphaela Ilgenfritz: Hello, Bruce. I am so delighted to be invited and to be able to share my story on your show. I am also an active listener of the show, and it is absolutely wonderful what you do.
BM: Raphaela, we always like to start out by learning more about our guest. If you would, please tell us a bit about yourself, where you are from, what you do for work and what you do for fun.
RI: I am a mother of two, very happily married for more than 30 years and I live in London in the UK. I have traveled the world, I was a flight attendant for 29 years, but took early retirement during the COVID pandemic and I am now working as a graphic designer. That was my original job in any case during my flying time and my flying career. I was actually able to fly part-time and freelance as a graphic designer. So, when COVID hit, I decided it was time to pursue my original career, which was my preferred choice.
BM: With all of us who have survived cancer, there was that awful stage in which our physical health took a turn to the extent that we knew something was abnormal, and that ultimately resulted in a cancer diagnosis. For you, how did that present itself?
RI: In my case it was not the typical signs. I was going through post-menopause and I was going through a very stressful time like everybody in the pandemic. I attributed the underlying symptoms to being menopausal, so I didn’t really pursue them. I didn’t participate in any self-care whatsoever, so I was basically tired most of the time, which is a sure sign that there is something wrong, but I thought it was menopausal. But when I noticed my bowel moments, I thought that was really strange because I had changed my diet ten years prior. I changed my diet because my husband had been diagnosed in 2012. So, that was a time when I thought I should look out for something because the bowels movements were not correct, they were not the way they should be. There was just something wrong. I am still flying at that time, but put in for early retirement at age 55. So, as I was still flying, the company provides employees with an annual medical checkup, and I did one of those checkups and they give you one of those home testing kits for the stool sample and mine came back negative. The airlines said I had to take it up with my GP, which I did. My GP said they would do their own investigation and concluded I had hemorrhoids, and I thought, no, I don’t have hemorrhoids. I had never had hemorrhoids since my diet changed and I knew it was something different. The doctor wanted to know why I wasn’t taking the anti-hemorrhoidal creams they prescribed, and I said it was because I thought for sure it was something else. That’s when I requested a colonoscopy. Now, a colonoscopy is definitely your first choice for any form of examination, but it is done in a very humane and dignified way. I was not completely sedated, so I could feel everything, and I could see everything on a monitor. The person who performed the colonoscopy, you could see everything, and he then went to a place where I could see there was something completely wrong. It did just not look right. He said it’s a polyp. I asked if he could remove it, and he said he couldn’t because it was “far too big.” He said he would do a biopsy and that polyp will have to be removed separately. I was still totally oblivious, as there were still serious signs. I then received a letter, a referral, to get an MRI, and a CT scan from the UK once you are on their radar. A week after my colonoscopy I got the letters and my scheduled appointment. I went in for the CT scan and the MRI, and like two or three days later, I received another letter I have got to come in for another CT scan with contrasting liquids. At that stage I was still oblivious. Then a week after that, I had an appointment that was given to me to see a consultant at the hospital. This was during COVID time, and I was fortunate enough to take my husband along and when I got into the consulting room, all I could see were two people fully masked up. One was a cancer nurse, and the other was my future surgeon. All I could see were these kind eyes, and they asked me if I knew why I had come for this appointment. I said there was a polyp that needed to be removed. That’s when the surgeon said he was really sorry to tell me I had bowel cancer, Stage III. It was like time stands still when you hear a diagnosis like that. It is quite surreal. Everything is quiet before it becomes extremely noisy in your head, but only a couple seconds after that, he said it hadn’t spread to any of my organs, and I thought they is actually good news. In my flight attendant emergency training, my brain kicked in because as a flight attendant, if you are presented with an emergency situation, you would first analyze it, get all the information and then try to get out of there alive as quickly as possible. That’s basically what I did. I said to myself we have got this situation, now what do we do? He explained it to me and said the way the cancer is positioned it is fairly unlikely that you will not come out of it without a stoma. I had never heard of the word stoma in my life before. He saw the question mark on my face, took out a pen and a paper, drew it for me and immediately I knew it was a colostomy bag. I asked him if I had any other choice and he said it would be that I would live near a toilet for the rest of my life. At age 55, I still had so much living to do. I was not prepared to stay near a toilet. He didn’t really give me a choice, but he prepared me for it. I went home, and realized the most important thing was going to be how I was going to tell my kids, and how am I going to tell my parents who were in their eighties. I hadn’t seen them all through COVID. How do I tell them that their daughter has bowel cancer? So, I told them I have good news and I have extremely good news. I told my parents the doctors found something. There was silence on the other line. Then I gave them the very good news that it hadn’t spread to any other organs, and they can remove it. To me, that’s how I saw this whole episode. They did have to survey my case to see if I needed chemotherapy or radiation prior to the operation. Then I was told because of the position of the polyp, chemo and radiation would not be necessary. That’s when I was asked when I could come in for surgery. I said as soon as possible. I did not want to wait around. This was December 2021, so Christmas was on the horizon. Everybody was getting ready to work less and I got the last surgery date for that year from this specific surgeon. That was six days after I was diagnosed.
BM: We’re confident you’ll be able to learn some tips and tools to help you through your personal cancer journey, but first we’d like to invite you to please give us a ‘like,’ leave a comment or review below and share this story with your friends. Kindly click on the Subscribe button below and click on the bell icon, so you’ll be notified when we release our next cancer interview. And if you are facing a cancer diagnosis, please click on the link in the description and Show Notes below to check out our free guide, “The Top Ten Things I Wish I Knew When I First Got Cancer.”
Raphaela, we are at a stage in which you first got cancer, and I suppose it was another layer of good news when you learned you didn’t have to deal with radiation or chemo, but I am guessing all roads here lead to the colostomy bag and colostomy bag management. During my brief stint in health care, there was the possibility I would have to deal with a patient that had a colostomy bag, and that prospect terrified me. That said, in a very indirect way I have a sensitivity for those who have to wear them and maintain them. With ostomies we have interviewed for this program, I have heard of full range of experiences in terms of how they were introduced to bag maintenance, from extremely helpful nurses to nurses who handed the bag to the patient and walked away. What was your experience like?
RI: It is life-changing when you wake up and you have got this bag, obviously. A very big part is your positive attitude towards it. I embraced the stoma before I even had it because I knew without it, either I’ll have a bag for the rest of my life or a tag on my foot. Even my family, my children, my husband, they supported me in this. So, when I woke up from surgery, obviously the first thing they want you to do is look at your bag, your stoma and to actually change the bag, and I was in no position to do this, and I was not in the right frame of mind. As you mentioned, there are stoma nurses that are so empathetic to you, they are so good, and the one I had, the team I had, they were really excellent. You couldn’t help but smile at them. They discharge you once you are confident with that. That sort of gives you peace of mind. I was in a ward with four other women, and all had ostomy bags for different reasons for different ailments. You try to cheer yourself up and we sort of came to the conclusion it’s like having a newborn. When you first are a parent, you do not know how to change nappies and it takes forever, then weeks or months later, it is second nature, you don’t even have to think about it, and it’s the same with having a bag. It becomes second nature and now it is just part of my life. It doesn’t define and it is part of my life. It is just what I have to do.
BM: Raphaela, for anybody watching or listening who might be on the verge of having a bag becoming a major part of their lives, could you provide an example of how your day is altered by the presence of the bag?
RI: That’s a very interesting question because I actually asked my family if they, through me having an ostomy bag, have noticed any changes because obviously to me, this is my life now. I asked them and they couldn’t notice it, except when I have to do a bag change. I tell them I have to go to the toilet and that’s when I am confronted with it, that’s when I do it. Other than that, it is not much of an issue. It depends on what you eat. I try not to eat anything that could give you wind because if I want to be very graphic, the wind only goes into your bag, so you have got a huge balloon in front of your stomach and obviously you don’t want to do that. So, I try and watch what I eat. Other than that, I can’t really say, unless my bag leaks, which hardly ever happens because I found the bag that actually works best for me and the way I use it, it just hardly ever leaks, it is not life-threatening and not the end of the world.
BM: Now I want to backtrack a bit to the surgery that preceded your being outfitted with the bag. Would you say the surgery went as well as it possibly could have?
RI: I think it did, definitely because the first person I saw after the surgery was the surgeon and he said, “Raphaela, we have got all the cancer.” To me, that was my early Christmas present. It went according to plan. I stayed in a little longer than anticipated because I had a few problems, bladder-related, but other than that, everything went according to plan, I am forever indebted and thankful for them.
BM: Raphaela, we are going to touch upon very soon here, what you do for others in terms of helping them with their cancer journeys, but I want to backtrack just a little bit, and bring up in the course of doing these interviews, I have learned that each cancer is different, each has its own idiosyncrasies. There are some that are especially challenging because it is almost impossible to achieve early detection, lung cancer and pancreatic cancer, for example. You were diagnosed Stage III. Is fair to say that, bowel cancer or rectal cancer falls into the category of one that is difficult to detect early?
RI: You know, bowel cancer, rectal cancer is called a silent killer because you don’t have any nerves in your bowels, so it is extremely difficult, so I would advise anybody to look out for the signs because there are definitely signs. They may be subtle in the beginning, but your body gives you signs, and you must be open to investigate it further, just monitor them. Yes, those cancers, sometimes they are detected too late. A colonoscopy, nobody wants to do that, but that is the only way to see what is going on. So, I would advise as soon as you’ve got doubt in your mind and you think there is something, worry can be a huge factor contributing to making you ill, so I urge anybody to get the colonoscopy just to have peace of mind.
BM: Now, let’s talk about what you are doing in the present and future for others with below-the-belt cancers and it is called Stoma4life. Tell us about its genesis, and what it can do for others.
RI: As I said, I am a graphic designer and I am in the fortunate position of working for UKHealthRadio, so when I was diagnosed with cancer, I was working for a radio station. It never crossed my mind to be my own show, but I spoke to so many other people. They told me I have a story to tell, and I have this platform, why don’t I try to educate people about this. It sort of snowballed from there. UKHealthRadio was very much interested in me hosting the radio show for it and that’s how it happened. It took only a couple weeks for me to make up my mind. I went to the drawing desk and created my logo. I did my website and all my social media. I am eight shows in and am absolutely enjoying it. I want to debunk myths. I want to tell people if they get a cancer diagnosis, yes, it is absolutely serious, but life can go on, and a positive mindset is absolutely key and important. Everybody asks themselves what are they going to do once they get diagnosed and could they have done anything different. I don’t believe in ‘bad luck.’ I was going through COVID, and I practiced almost no self-care. I had extremely toxic thoughts, I could say. I was going through a worrying time, which I think had something to do with my being diagnosed. My advice is to embrace your inner voice, listen to your intuition and if you are worried, address those concerns, go to your GP, have it checked out because once you have got peace of mind, you can carry on, regardless of what the diagnosis is.
BM: That’s outstanding advice and an outstanding story, Raphaela. We want to thank you very much for being with us, and if somebody wants to check out more about Stoma4life, is there a web address for it?
RI: Yes, it’s www.stoma4life.com. It has all my contact details and one can also get in touch with me via the website. I’m here, like I said, to debunk myths, to educate people about bowel cancer, and life as an ostomy. I had a huge question mark when I came out of surgery because I only had six days to prepare for it. I wanted to create a platform where people go and get answers, before or after surgery.
BM: Excellent. Raphaela Ilgenfritz of London, United Kingdom, thanks so much for being with us, and as we always say when we bring an episode to a conclusion, you are not alone. There are individuals out there like Raphaela, organizations like Stoma4life, that are there to ease your journey. So, until next time, we’ll see you on down the road.
Additional Resources:
Support Group:
Stoma4life: www.stoma4life.com
SHOW NOTES
TITLE: Raphaela Ilgenfritz – Colon Cancer/Rectal Cancer Survivor – London, United Kingdom
When fifty-something Raphaela Ilgenfritz started feeling tired all the time, she thought her fatigue was tied to menopause. That led to a serious of doctor visits, which led to a colonoscopy, which led to a diagnosis of rectal cancer, or, as it is more commonly in the United Kingdom, where she lives, bowel cancer. She had to be outfitted with a colostomy bag, a challenge she immediately embraced. Raphaela founded Stoma4life, a support group for those with below-the-belt cancers, which grew into a podcast, heard on UKHealthRadio. This is her story.
Additional Resources:
Raphael’s website: www.stoma4life.com
Time Stamps:
03:16 When Raphaela experienced fatigue, she thought it was tied to menopause.
03:53 She concluded menopause had nothing to do with changes in her bowel movements.
05:38 She requested a colonoscopy, which revealed she had a large polyp that had to be surgically removed.
08:16 When she learned she had Stage III bowel cancer, she used her training as a flight attendant to guide her approach to her cancer journey.
09:20 After successful surgery, Raphaela learned she would have to wear a colostomy bag for the rest of her life.
14:05 Describes being introduced to the wearing and maintenance of the bag.
16:40 Is asked how her day is altered by the wearing of the bag.
20:00 Raphaela says to pay attention to symptoms of bowel cancer, as subtle as they may be.
21:20 A home test is no substitute for a colonoscopy.
KEYWORDS (tags):
cancer
bowel cancer
hemorrhoids
cancer interviews
rectal cancer
chemotherapy
bruce morton
colon cancer
radiation treatment
raphaela ilgenfritz
colonoscopy
stoma
colostomy bag
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