DESCRIPTION
Pete Hill worked years in the public health in London. He then became involved in the Alzheimer’s Society. Pete seemed to be in good health in 2021, but in November of that year, he had COVID. When his bowel habits seemed abnormal, he initially attributed that to COVID; but while he eventually put COVID in his rearview mirror, in 2022, the bowel problems remained. Then there was blood in his stool, which he later learned was an indicator of bowel cancer.
Pete soon went in for the colonoscopy that revealed the presence of bowel cancer. Part of that diagnosis resulted in his having to wear a stoma bag. After the diagnosis, Pete Hill was referred to a surgeon, who said without a stoma bag, there could be leakage from his bowel. That’s why he recommended a temporary stoma bag On June 10, 2022, he woke up with a stoma bag.
He said it was quite daunting to be diagnosed with cancer and to have to deal with all the things tied to having a stoma bag and having to maintain it. Pete had no experience with a stoma bag, said its maintenance bag required a steep learning curve, which he found worse than the cancer itself.
Pete Hill said he was greatly relieved to be in the care of an outstanding stoma nurse, who said he would not be leaving the hospital until he knew everything that needed to be known about maintaining a stoma bag. Once he learned how to maintain the bag, he was hit with another challenge, that of making various dietary changes. He also had to regulate how many beverages he could drink. If he drank too much, that could adversely affect kidney function.
As for the surgery, the doctor said 24 lymph nodes were and none were cancerous. However, cancer cells were found in the blood vessels surrounding the tumor. The surgeon said there was an 85 percent chance the cancer won’t return and gave Pete the option of no more treatment. However, he recommended Pete see an oncologist for what he called “mop up” chemotherapy, in pill form, which would raise his chance of survival to 90 percent. After speaking with family and friends, he opted for the eight rounds of chemo, which would maximize his chance for survival.
Although his having a stoma bag actually eased the chemotherapy experience, Pete still suffered side effects, while popping 20 pills a day. His nails split and he didn’t have much energy. Undergoing chemotherapy meant he had to keep the stoma bag longer than had he eschewed chemotherapy, but after eleven months, he was able to have it removed. However, because his body had been functioning in a different way for eleven months, returning to the way it functioned pre-stoma was difficult. That’s when he learned he was dealing with Lower Anterior Resection Syndrome, or LARS, which is something experienced by many people in the months after they have a stoma bag removed. One of the byproducts is having to reverse the dietary changes he had made while having the bag.
After the removal of the tumor, the cancerous cells surrounding it and the stoma bag, Pete Hill says his health is about 80 percent of what it was, pre-diagnosis. He says in large part, he is able to the things he did before he was diagnosed.
By way of advice, Pete says to remember during your cancer journey, you are in control, and never be afraid to ask questions of your care team.
TRANSCRIPT
Bruce Morton: In terms of treatment and post-treatment, a diagnosis of bowel cancer is very challenging. But our guest went through a lot to overcome such a diagnosis. He is Pete Hill of W-A-R-E, Ware, United Kingdom. This is the Cancer Interviews podcast, and I’m your host, Bruce Morton. So here he is, and let’s hear his story. Pete, welcome to Cancer Interviews.
Pete Hill: Thank you, Bruce. It is an absolute pleasure to be here with you.
BM: Let’s start the way we always do and learn more about our guest, which is you. If you would, Pete, tell us about where you are from, what you do for work, and what do for fun.
PH: I am in Ware in Hartfordshire, which is about 30 miles north of London. I am a London native, was born in north London, but moved to Hartfordshire, when I got married. My career for many years was in public health in London. When I stopped that, I became involved with the Alzheimer’s Society. That ended in 2018. Since then, I have been what is called a ‘gentleman of leisure’ but it doesn’t quite work out that way. These days I find myself being a radio host, so I host “The ‘D’ Word” on an internet radio station, UK Health Radio. It is the UK’s only weekly radio show which has dementia as its topic. As well as that, I host a music show and do commentaries on local soccer matches. So, I should say, life is never dull around here.
BM: You haven’t had bowel cancer all your life. There was a time in which your health seemed to be just fine. Then you sensed something was abnormal and led to a diagnosis of bowel cancer. For you, how did this situation materialize?
PH: It was strange, Bruce. It was back in November 2021 when I had COVID for the only time in my life. Going into 2022, I didn’t feel right. I just think I was feeling as I should. I thought I might be feeling as I should. My bowel habits became irregular. You just know that there is something going on, but I couldn’t quite put my finger on it. I then had some blood in my stool, which was a pretty good sign of cancer as I later learned.
BM: And at some point, you needed to be seen by a health care professional.
PH: Yes, I was seen by a specialist in which I had some tests taken and the clincher was a colonoscopy. When I had a colonoscopy, I was diagnosed with cancer in my lower bowel.
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 please give us a ‘like,’ leave a comment or review below and share this story with your friends. Kindly click on the Subscribe button and click on the bell icon, so you’ll be notified when we release our next cancer interview. And if you or a loved one 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.”
Now, Pete, let’s talk about when you first got cancer. You had the diagnosis, and part of the diagnosis was learning you would have to have a stoma bag. How difficult was that news?
PH: From the original diagnosis, I was referred to a surgeon. He drew me a diagram of where the issue was and exactly what he was going to do. He said to me because of where my treatment was going to be, there is a likelihood that when we join things together there might be a leak, and is there is, this could be a big issue you don’t really want; so, if we give you a temporary stoma bag, we will reduce the possibilities of that happening to a great extent. Given that choice at that point, I am thinking I don’t want anything else to go wrong, so I wanted to go forth with that option. That’s the option I did go for. On June 10, 2022, I woke up with a stoma bag, which was a whole new deal. It was kind of a double whammy because you are hit with the diagnosis of cancer which is one thing you try to get around and the other thing to worry about is the stoma bag. To be honest, I was totally ignorant. I had never come into contact with a stoma bag. Didn’t know anything about it. Didn’t know about the process or anything. That was a massive learning curve, and one I found a lot more difficult than overcoming the cancer diagnosis.
BM: Pete, I have learned from our interviews with people who had to wear a stoma bag when people get one, there are widely varying experiences in terms of how much help they got in terms of attaching and maintaining it. In your case, did you get much help?
PH: There was no problem. The assistance was superb. I had a wonderful stoma nurse and she said I would not be leaving hospital until she was comfortable that I knew everything that needed to known about maintaining the bag. That’s a pretty good incentive to learn how to do it. The actual mechanics wasn’t an issue, the mechanics, the changing the thing and all of that. It was the psychology that was the problem, and the fact that you have to change your diet. There was a whole raft of things you couldn’t eat and a whole raft of things you can eat. So, my whole diet changed. And the other thing is fluid imbalance. You can’t drink too much, but if you drink too little, you might have problems in terms of kidney function. Psychologically, those were the bits I had the most trouble with and recovering from the operation as well, I struggled with that, but psychologically it was the stoma bag that was holding me back. The hospital provided me with a lovely stoma nurse, Allison, who took care of me. We chatted and she tried to get me through the process. Through that process I unfortunately ended up back in the hospital again because the stoma bag was malfunctioning a little bit. I think there was a blockage. I had three pivotal moments during this process. One of those occurred in the hospital when I was feeling pretty down, and my stoma bag was very fluid, and I couldn’t control what was going out and I feel a little bit down about it. I had words with the doctor and he said to me to always remember that I am in control of the stoma bag, that hospital staff will do its best, but it is only here to support me. Suddenly my whole mindset changed. I realized this bag was controlling my life, and I need to take control. Coming off the back of that, I returned home and my stoma nurse, Allison, asked me if I needed counseling, that she could get me six counseling sessions. They are absolutely free, with an experienced counselor. At the time, I thought, why not. Leslie was my counselor. She was absolutely marvelous. She had been working with cancer patients for 25 years. We had six Zoom sessions, each for about an hour, a lot of which was talking about families and various other things. One thing she said to me and this was the second pivotal moment was when she told me that once I have gone through all this, I will never be the same person. When I first heard that, I thought this was awful that I will never be the same person, but she came back after a brief pause and said I could come out as a braver person. Suddenly, that one and what the doctor had said turned my whole mindset around. I thought that, yes, I could come out of this and maybe there are some bits from my past that I would like to leave behind and I can come out of this a new and improved model. From that point on, I thought I was really starting to recover.
BM: Let’s talk about the procedure that accompanied your being attached to the stoma bag. That’s a surgical procedure, and if you would, describe what that entailed.
PH: It was a procedure to remove the tumor and some of the tissue around it. With the stoma bag, it is what you would call in the States, a detour. And what we call here, a diversion. Normally, things take their natural course in terms of getting through the intestine and they come out through your lower bowel. When you have a stoma bag, you have that process blocked off. Part of that area is not used anymore, and your waste products flow out through the stoma bag. It is a bit scary at the beginning because there are contents of your intestine coming out of your stomach, but you soon get used to that and you get used to attaching the bag and changing it and all those things, so that was the procedure, which reverses that process.
BM: Pete, part of your treatment involved chemotherapy. What was the toughest part of chemo?
PH: The chemotherapy came about when I had the initial procedures, the initial operation. Obviously, what happens there with cancer surgery, they look at lymph nodes around where the tumor has been spotted to see if there have been any signs of spread and if those lymph nodes have been affected. About a month after my operation, my surgeon said there is really good news. He said they had taken out 24 lymph nodes and we have found nothing cancerous, but they had found some cancer cells in blood vessels surrounding where the tumor was. He said it would be good if I saw an oncologist, so I went to see one. His take was that I could walk out of his office with an 85 percent chance this cancer won’t come back, and he wouldn’t blame me if I did so. But he said if I wanted to take part in what he called “mop up chemo” in tablet form, I can raise that number from 85 to 90 percent. It was a tough decision, but family and friends said I should maximize my chance for survival, so I told the oncologist I would do it. I went through eight rounds of chemo. When you start chemo, you think horrible things like your hair is going to drop out, you’re going to be sick and all that stuff. I didn’t have any of that at all. The main thing was, because I had a stoma bag, I was actually balancing the chemo with the stoma bag. That’s really where some of the issues occurred. I didn’t have that much energy. My nails split a little bit. And I had some really, really strange dreams. Overall, I have to be honest. I was really, really lucky and I breezed through the sessions of chemo. The only thing I really found difficult was taking all the pills. I was taking ten pills a day, plus further mitigation which was related to the stoma. So, there I was, popping 15 to 20 pills a day. For somebody who has gone through life not wishing to take tablets at all, taking 20 pills a day was a bit interesting.
BM: Pete, I am guessing there had to be a point in which you sensed things were changing for the better, that you were moving toward survivorship. What was that like?
PH: Yeah. I have already mentioned the two pivotal moments, two of three. As for number three, here in the UK, we have got an excellent cancer charity. It offered what it called a Hope Course. It was a six-week course, which covered every aspect really, financial support, psychological support and the whole lot. I think, why not? Let go for it. I sat in a room with 12 people I had never met, and quickly realized there was this bond between us because we had all been through a similar process. There were people with different types of cancer, but we had this cancer thing that joined us all together. Within ten minutes, we were chatting away like we had known each other for years. When I walked out of there, I felt I was going at the right rate here. It’s one thing to get assurances from health care professionals, but when you actually see people who have been where you are, you suddenly realize that this is where you are. The great story about that group is, that group has continued and there are five of us that still keep in touch, we talk to each other every week, we have this friendship and that has been a real positive.
BM: Pete, I want to clear something up. I thought you had mentioned your stoma bag was temporary. Is that the case? Do you no longer have the stoma bag?
PH: It’s gone, Bruce. One of the strange things is that my stoma nurse, Allison, said I should name my stoma bag because people do name their stoma bags to take some of the mystique out of it. So, my stoma bag was named Cliff. To be honest, Cliff gained a personality of his own. I often felt that people were more interested in him than me because my friends took him as being a separate entity. When it came to the time that I had a reversal, that included the removal of Cliff. If I had not had the chemo, the reversal would have happened in three months; because I did have the chemo, the reversal happened eleven months later. This was May 2023 when the reversal occurred. Cliff was no more, away he went. On the day of the reversal, a lot of my friends sent messages, saying goodbye to him. Before that, they had said, “How are you?”, which was interesting. So, I had this reversal and like I said, it was like putting a detour in my intestine and the detour signs were removed and suddenly everything was back as it was. That in itself becomes an issue because your body has been operating in a different manner for eleven months and now it is back to how it had operated just as before. That’s when I found out about Lower Anterior Resection Syndrome, or, LARS. It’s something anyone with a stoma bag can suffer to various degrees. There is a LARS Facebook group. It serves people all over the world who are going through the same thing. Anyway, the one difficulty in terms of the reversal concerned diet. I had to make changes when I had the stoma bag, then make more changes when it was removed, and even now, I am still learning.
BM: I am curious with the ongoing process of regulating your diet, for lack of a better word, if pre-diagnosis, you were 100 percent, these days, how close are you to 100 percent, and if you fall short, what can you not do?
PH: Really good question, Bruce, because I had a consultation with my oncologist very recently and he asked me that very same question. I told him I am at about 80 percent back now to where I was. I am back to doing all the things I was doing before. A lot of that took a hit when I was recovering and now, I am capable of doing that. In terms of diet switching, I am confident about eating at home, but not that comfortable about eating out. I have started and there are certain places I can go to now, but that’s the next big one for me in terms of getting back to 100 percent of where I was. That and going out in public, going to the cinema are things I am working towards. I have a dog, and take it for walks for a couple of miles and it is not a problem, so those things have come back. And I think some of it is still psychology. There is still a lot of psychology in what I have gone through. There is work to be done, but I am pretty with where I am so far.
BM: Pete, we are going to wrap up and just as we start off the same way, we try to end the same way, with the following question. If you encountered someone who had just been diagnosed with bowel cancer, you might have a lot you would want to share with that person; but if there is one point you really want to drive home, what would it be?
PH: Always remember you are in control. That psychology is so important. You feel at the time like you have had your whole life taken away from you. This advice from my doctor was the starter’s pistol for my journey to recovery.
BM: Excellent. Pete Hill, thanks so much for sharing a story that has information and inspiration for those who have been diagnosed with bowel cancer. Pete, thanks so much for being with us on Cancer Interviews.
PH: Thanks, Bruce. It’s been a pleasure.
BM: And we’ll say as we always do when we conclude, if you or loved one are on a cancer journey, you are not alone. There are scores of people out there, just like Pete, who have information that can make your cancer journey a little bit easier. So, until next time, we’ll see you on down the road.
SHOW NOTES
TITLE: Pete Hill, Bowel Cancer Survivor – Ware, United Kingdom
For Pete Hill, a colonoscopy led to a diagnosis of bowel cancer. His treatment regimen included a temporary stoma bag and chemotherapy but achieved survivorship. Having a stoma bag required some radical changes in his diet and its removal required still more changes, but says his health is “80 percent” of what it was before the diagnosis. This is his story.
Time Stamps:
03:26 Pete experienced irregular bowel habits.
04:17 Underwent a colonoscopy which led to a diagnosis of bowel cancer.
05:27 Learned he would have to wear a stoma bag.
07:45 Received a tremendous amount of assistance in terms of learning how to maintain the bag.
12:16 Pete describes his surgical procedure.
15:33 Part of his treatment included chemotherapy, which along with a stoma bag, was a challenge.
20:28 Relives when he learned he would no longer have to wear the stoma bag.
25:12 Pete says his health is about 80 percent of what it was pre-diagnosis.
27:50 His advice for others diagnosed with bowel cancer.
cancer
bruce morton
bowel cancer
chemo
stoma bag
pete hill
colonoscopy
lower anterior resection syndrome
jim foster
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