Helinka Carr survived bowel cancer | ileostomy bag | pelvic radiation disease | colonoscopy

DESCRIPTION

When Helinka Carr experienced limited rectal bleeding, because it was limited, she never thought her problem could rise to the level of cancer.  She also thought the bleeding might be diverticulitis, which had been suffered by members of her family.  However, at the urging of her doctor, she underwent blood tests and a colonoscopy.  The latter revealed that she had bowel cancer.  Thanks to two surgical procedures, she achieved survivorship but has to wear an ileostomy bag.  She tires easily, but had the energy to start a line of ostomy lingerie for bag-wearing women diagnosed with below-the-belt cancers.

Helinka Carr said when one experienced rectal bleeding for three weeks, that was the standard in the United Kingdom for being a candidate for bowel cancer.  Helinka while noticed bleeding in her rectum and in her stool, it didn’t exist to the degree that aligned with the accepted standard for bowel cancer.  She also said her family had a history of diverticulitis, which also led her to believe that she was not a candidate for bowel cancer.

Nonetheless, her general practitioner urged her to get the bleeding checked out.  After a series of blood tests, Helinka underwent a colonoscopy and bowel cancer was indicated.

Once upon learning of her diagnosis, she immediately refused chemotherapy.  She agreed to a regimen of radiation treatment, combined with her self-styled complimentary hearing.  It took two surgeries, but her tumor was removed.  Helinka detested the radiation therapy, and firmly believes her practicing complimentary healing all by itself could have removed the majority of her tumor.

Despite achieving survivorship, the radiation continued to affect her.  She suffered from pelvic radiation disease, which robbed her of any feeling in her rectum or bladder, creating major problems any time she had to urinate or defecate. 

Helinka’s care team said she would need to be fitted for an ileostomy bag.  At first she was told she would only have to wear it for twelve weeks; but after it was removed, she was incontinent and was told she again would have to wear the bag, this time on a permanent basis.  Helinka has figured out a way to manage the bag, go out and enjoy normal activities and get six to eight hours of sleep each night.

Helinka’s experience inspired her to devise a line of ostomy lingerie.  It is attractive underwear destined for bag-wearing women diagnosed with below-the-belt cancers.

By way of advice, Helinka Carr says regardless of your cancer diagnosis, you need to fiercely advocate for yourself.  That means asking lots of questions, and if your doctor cannot sufficiently answer your questions, to get another doctor.

Additional Resources:

Helinka’s lingerie line: Unspokenrosebud-Etsy

TRANSCRIPT

Bruce Morton: This is the @CancerInterviews podcast, and I’m your host, Bruce Morton. Our guest on this episode not only survived bowel cancer, but she has come up with a creative way to help other women diagnosed with below-the-belt cancers.  She is Helinka Carr of Leeds, United Kingdom.  Now it’s time to hear her story, and Helinka, welcome to Cancer Interviews.

Helinka Carr: Thank you so much for having me.  Really appreciate it.

BM: Helinka, you have a life that has nothing to do with cancer, and we would like to hear about it, so if you would, tell us a bit about where you are from, what you have done for work, and what you like to do for fun.

HC: I am from Leeds, West Yorkshire, best county to live in, in the UK.  I used to manager a hostile for single, homeless men.  That was my passion to work with the men who were underdogs.  I picked all sorts of skills in the way to talk to people.  As for fun, I like to be outside, listening to nature, going for a walk, gardening.  I love to learn, love to read.

BM: For all of us who have survived cancer, our diagnosis didn’t just materialize from thin air.  There were symptoms that led to the diagnosis.  For you, what were those symptoms?

HC: To be honest, in the UK at the time, if you have bleeding for three weeks from your back passage, bloody stool for three weeks, if you have pain or discomfort for three weeks, those were the benchmarks for bowel cancer.  Me, I had the occasional bleed, and I had occasional pain in my bum, but other than that, not much.

BM: This eventually led to a diagnosis.  What was the chain of events from that point forward that resulted in the diagnosis?

HC: My doctor kept asking me to get the bleeding checked out, and blood tests were run.  Then they did an internal examination of the bowel.  Then the doctor called for a colonoscopy and that’s when it all changed.  The doctor said I shouldn’t be getting cancer, but the colonscopy revealed bowel cancer.  My family had had diverticulitis, which presents the same as bowel cancer, so I never considered bowel cancer as a possibility.  I didn’t have the symptoms for three weeks, most who get bowel cancer are between 60 and 65, and I was 46.  I never would have thought I had bowel cancer.

BM: We are hoping that by listening to Helinka, you will pick up some tips and tools that will aid you or a loved one on a cancer journey.  We’d like to ask you to subscribe to our channel, and give us a ‘like.’  We would also ask that you click on the bell icon.  That way you will be notified the next time we post an interview.  And, we would like to remind you that on Cancer Interviews, we are not distributors of medical advice.  If you seek medical advice, please contact a licensed health care professional.

Helinka, in our interviews we have heard from many guests who have emphasized the importance of self-advocacy.  In terms of your diagnosis, how did you advocate for yourself?

HC: Well, I refused chemotherapy.  I told them that from the onset.  I said I would go through radiation treatment, but not chemotherapy.  I am a complimentary healer as well, so I was using all of those tools to reduce the tumor that I had.

BM: So, you eschewed chemotherapy, but you did go with radiation treatment.  What was the toughest part of the radiation regimen?

HC: Goin’ in and havin’ it. 

BM: So, you wanted nothing to do with chemotherapy and you went ahead with the radiation treatment and the complimentary healing.  Are you glad you went that route?

HC: I would rather not have done the radio therapy because it has left me with pelvic radiation disease, which now means I cannot feel my bowel, I can’t feel my bladder, it feels different; so, when I have to go to the bathroom, I have to feel my bum because I don’t know if I have to go.  Pelvic radiation disease.  The gift that keeps on giving. 

BM: How do you think your cancer journey would have gone if you hadn’t had the radiation?

HC: I still would have shrunk it down to 45 percent.  The tumor still have been removed, and I would not have had the unpleasant aftermath.  So, I’ll say it again.  I would never have had the radiotherapy done.  Never.

BM: You have mentioned some of the areas in which you have been adversely affected by your procedure.  Any additional areas in which you have been adversely affected?

HC: Stamina.  The fatigue can overwhelm me at times.  I don’t think it is embarrassment of what you have gone through because people with bowel cancer are reluctant to talk about it, but mostly it’s fatigue.  I have an ileostomy because my cancer is tied to the small bowel, not the large bowel.  I have a tendency to have diarrhea quite a bit, which can really result in fatigue.

BM: We have heard from guests who have had colostomy bags and when first getting them, some have been under tremendous care while others get little or no instruction.  How was the level of instruction for you when you got the ileostomy?

HC: To be fair and honest, a consultant prepped me up on the procedures involved with wearing an iloestomy.  I told him I was not going to wear a bag because I thought there was no need.  The doctor said he thought it could be removed in six weeks, but it turned into twelve weeks.  Compared to any people, that’s a short time.  In any event, he took me down to the stoma nurse team.  They sat down with me and they told what I needed to do and went to work with a brilliant stoma nurse. 

BM: So, I just want to be clear.  You had an iloeostomy bag for twelve weeks, but no longer have it?

HC: It was for twelve weeks, but in December 2016, I became incontinent.  I couldn’t leave the bathroom and that was it.  The stoma nurse team put me back on the bag.  I had no quality of life.  I could not do the normal things one does when they leave the house, like food shopping.  So, for my quality of life I had to have the bag back.  The doctor said there are other things they could try, but they would not stop me from being incontinent.

BM: These days, do you have any difficulty managing it, maintaining it?

HC: No, because I have found a system that works for me, and among other things, it allows me to sleep six to eight hours a night.

BM: That said, would you say your quality of life, while not ideal, is about as good as it can be, under the circumstances?

HC: It could be better.  I have gotten a bit stronger.  I do go out.  Nothing keeps me in.  I will keep doing and going and moving forward.

BM: Now, we want to talk about something that you do these days, something that can be of tremendous help for women diagnosed with below-the-belt cancers. If you would, tell us exactly what that is.

HC: I care about lingerie, and the bras and knickers have to match.  When I emerged from my second surgery, I thought I would find undergarments that would accommodate my stoma, and I found nothing.  I went out and researched and found the best lace I could find so that it could cover up the conventional underwear.  It looks so elegant and pretty.  I wondered why shouldn’t we (with below-the-belt cancers) feel and look pretty and elegant and beautiful.  You can move around quite comfortably because you know it’s there and it’s pretty.  It’s there to look bloomin’ gorgeous. 

BM: This question may have a bit of ignorance attached to it because it is coming from a male about female stuff, but elaborate if you would about the importance of this lingerie and how it can make a woman feel?

HC: To be fair and honest, it’s for men as well, as these undergarments can cover up a men’s stoma bag, too.  They can wear this in intimate moments and not have to worry about it.  We also carry crotchless knickers, which I cannot get my head around, but there is a market for them.

BM: In our Description and Show Notes below, we will have the information one needs to investigate your line of clothing, Helinka.  Now we want to wrap up, and we usually finish with the same question.  If you ran into someone who had just been diagnosed with bowel cancer, they might have a lot of questions for you, and you would have a lot fo answers; but if there is one point you made to this person, one thing you wanted to make sure they would remember, what would it be?

HC: As I have said, advocate for yourself.  If you are not sure about treatment, ask questions.  If you are not sure about surgery, ask the questions.  Speak out, shout out, and if you are not happy, then go find somebody else who can give you the answers, but don’t go down the rabbit hole of the internet because you could be on that for days and days and days and get so confused.  If you must, look at professional sites that will help you make that informed decision.

BM: Excellent.  Helinka Carr, Leeds, United Kingdom, thanks so much for sharing an informative, inspirational story and thanks for telling us about your clothing line which can really make those diagnosed with a below-the-belt cancer feel better about themselves.  Helinka, thanks for being with us on Cancer Interviews.

HC: Thank you so much for this opportunity.  It’s been brilliant.

BM: And as we say when we bring an episode to its conclusion, that if you or a loved one are on a cancer journey, or think one could be in your future, you are not along.  There are individuals out there like Helinda Carr who have words of wisdom that can be of help along that journey.  So, until next time, we’ll see you on down the road.

Additional Resources:

Helinka's Ostomy Lingerie Line: Unspokenrosebud-Etsy

SHOW NOTES

Helinka Carr, Bowel Cancer Survivor – Leeds, United Kingdom

When Helinka Carr was diagnosed with bowel cancer, she wanted no part of chemotherapy.  She instead opted for a combination of radiation treatment and complimentary healing.  It took two surgical procedures to remove the tumor, and Helinka has to wear an ileostomy bag, but she has reached survivorship.  She went on establish a line of ostomy lingerie for bag-wearing women diagnosed with below-the-belt cancers.

Additional Resources:

Helinka’s Lingerie Line: Unspokenrosebud – Etsy

Time Stamps:

02:03 Helinka noticed she was experiencing limited rectal bleeding

02:56 Subsequent blood tests and a colonoscopy revealed bowel cancer.

05:42 How she advocated for herself, post-treatment.

08:39 Describes the toughest part of her radiation treatment.

09:21 Helinka is asked how her treatment would have gone had she refused radiation.

10:12 Names ways in which she is adversely affected by wearing an ileostomy bag.

12:45 Says she stopped wearing the bag after 12 weeks, but had to resume wearing it.

14:00 Is asked if it is difficult to maintain the bag.

18:54 Advice to others.

KEYWORDS (tags):

bowel cancer

ileostomy bag

radiation treatment

helinka carr

colonoscopy

ostomy lingerie

diverticulitis

complimentary healing

pelvic radiation disease