In the second of this two-part series on the spread of bowel cancer to the peritoneum, Sam is joined by Becky Maskill and Rebecca (Bex) Halstead. Becky has experience of peritoneal metastases, and Bex is Lead Colorectal/Peritoneal Tumour Clinical Nurse Specialist at The Christie NHS Foundation Trust. Becky tells her patient story, Bex explains what her role involves, and the two discuss their long relationship since Becky’s diagnosis nearly ten years ago.
Find out more about the Colorectal and Peritoneal Oncology Centre (CPOC) at The Christie.
Transcript
Sam
Welcome to Can I Butt In, the Bowel Research UK podcast where we welcome bowel cancer and bowel disease, patients, researchers, healthcare professionals and carers to butt in and share their experiences. We’re picking a topic every episode and getting to the bottom of it. I’m your host, Sam Alexandra Rose. I’m the Patient and Public Involvement Manager at Bowel Research UK, and as a patient myself, I’m excited to bring more patient and researcher voices into the spotlight.
Welcome to another episode of Can I Butt In? This is the second of a two-part series on the spread of bowel cancer to the peritoneum. In part one, I spoke to Dr Meera Patel about her research into this topic. Today I’m chatting to Becky Maskell and Rebecca (Bex) Halstead. Becky has lived experience of this condition and Bex is Lead Colorectal/Peritoneal Tumour Clinical Nurse Specialist at the Christie NHS Foundation Trust. So hi Becky and Bex. Welcome to the podcast.
Becky and Bex
Hi!
Sam
So just to refresh our memories, in the first episode, Meera explained that the peritoneum is a clingfilm-like lining that lines the abdominal and pelvic spaces, and covers most of the organs, and its function is to support and protect the internal organs, the abdomen and the pelvis. Let’s start then by going to you both just to introduce each other and Becky, do you want to introduce yourself and tell us about yourself kind of outside of the medical aspect of things?
Becky
Of course. So I’m 44 and I’ve been married to Gareth for 18 years. And we’ve got three sons. We’ve got Ben, who’s 17, Thomas, who’s 14, and we’ve got William, who’s 11. And we’ve got a little dog called Molly, who’s a little poochon. And I work part time as a care coordinator. And I live in East Yorkshire.
Sam
Lovely and Bex, if you’d like to introduce yourself as well?
Bex
Yeah, I’m Bex or Rebecca Halstead. Whichever. I’ve worked at the Christie since 2006, and I’ve been specialising for the colorectal and peritoneal oncology centre for 14 years now. I love my job.
Sam
Lovely. And the two of you have quite a long existing relationship and a good rapport with each other. Did you want to say anything about what your relationship is and how you’ve met and how all of that’s come about?
Becky
It’s been nearly ten years when we had our first chat. So it was because I got referred to the Christie to have an operation and Bex was the first person I spoke to. I believe it was. It will be coming up for 10 years in October that we had our first chat and obviously Bex know so much about the peritoneum cancer, bowel cancer. So as soon as I spoke to her. You just sort of clicked straight away and I just felt like she just could answer any question I had and. I think it really helps having Bex every time I I’m in contact with the Christie, it’s always Bex I speak to. So you don’t have to go through all that story of explaining your past. It’s just so consistent and Bex just knows so much and you’re just amazing Bex.
Bex
And then it gets like my head’s getting bigger, but it’s not. It’s just. It’s heartwarming that you actually feel that way and that, you know, I can make a difference to you by just being there. So yeah.
Sam
That’s wonderful. That’s so nice to hear that you have that great relationship. Yeah. So Becky, do you want to tell us about your story then? From when it started and what your symptoms were and through to being diagnosed and treatment and just your story really.
Becky
Course so. I, as I mentioned before, I’ve got three children, so my youngest is William and he’s 11. So I believe my symptoms started not long after I’d had William. So I was sort of constipated. I had really sort of abdominal pain. And as the months went on, I sort of went to my GP and it was more sort of diagnosed as IBS. I don’t think the symptoms at that point with that severe and as the months went on, the symptoms got worse. And the pains got stronger, and I’d describe them as like contraction pains. That’s how bad they were. And I also noticed some blood in my poo. So I was sort of back and forth and then it was in the January 2014, one morning. I actually couldn’t get out of bed. I was in that much agony. So Gareth was like, we’ve gotta take you to A&E, so he drove me to A&E and they did some tests there and. They’d, they’d said I had, like, a cyst on my bowel. So I’d come home with, like this drain, and then I was gonna have a colonoscopy. But not until the March. I think they needed time for my bowel to recover. So I think the colonoscopy would have been too intense to do it straight away. So I had a colonoscopy in the March. So we’re going back to 2014. And I remember it like it was yesterday, just laid there and obviously a screen in your colonoscopy. And I could see this massive. Well, they called it a mass blocking my bowel. They couldn’t even get the camera past it. It was that big. So that explains obviously, why I couldn’t go to toilet. I was struggling to go toilet and obviously the pain was so intense. So then I was booked in to have this mass removed and this was at my local hospital. And they did. They took a piece of my bowel out and they removed this mass. And it all seemed quite straightforward. At that point, I’d gone down to like six stone and as the week went by that I was in hospital, I was feeling worse and worse. And then and I’d had a blockage and my stomach was getting bigger and I think fluid was building up inside my abdomen. So I actually went back in for more surgery. So they opened me back up again and then I woke up with a with a stoma, just to allow my bowel time to recover from the operations. So then I started on six months of – no, sorry going back. I didn’t actually know what was wrong with me at this point. So I came home from hospital and it was my GP that actually told me I had cancer. I had no idea. She came and did a home visit to see me. Lovely doctor and she realised then I didn’t actually know what was wrong with me. I was still waiting for the results, so obviously she knew. So she sort of broke the news to me and Gareth. And then. I started on six months of chemo. But I didn’t seem to tolerate the chemo very well. I always seemed to not recover very quickly, you know, from the last lot, it was every two weeks and I had a pick line that went into my arm and the chemo was delivered that way. But then every time I was due more chemo, I’d for my blood test. I I’d never really recovered from the last lot. So it was, it was often delayed, and then it got to about the sort of September, October that year, so still in 2014 and I started with symptoms. Again. And I’d had a really rough ride. I’d had sepsis and all sorts that year. Do you know, it’s been really a real horrible year and then started with symptoms again. And so they rescanned me. They did a PET scan. And it showed that the cancer had come back again. So at this point they didn’t really. They couldn’t really give me any answers as to what would happen. So I went back for a meeting and I went to see the oncologist and this lovely nurse came in as well. Called Helen. And they broke the news then that the cancer was not curable. They were talking about. It was just treating it rather than curing it. So in that meeting, it was so confusing. I found out the cancer was back, but also that they couldn’t actually do any more for me. So we went away with loads of questions, really confused, and then we asked for another meeting just to sort of get our heads around it and we asked for more. You know what you talk, what do you mean when you say you can’t sort of cure it? So they say. We asked we sort of specified we need more information, so I was looking at two years to live. If, you know, if nothing else could be done. So that took us completely by surprise, as you can imagine. I mean, the kids at this point were six, four and one. William was nearly two, so it was a real, it was a real blow and I, you know, I had no option. I had to. I had to survive. It was like, what options have I got? So thankfully, my surgeon’s called Mr Gunn in Hull and he knew about the Christie. And obviously this amazing operation that they can do there. So Mr Gunn referred me to the Christie. So this would be when I had the phone call with Bex, so I was sort of like waiting to hear and I’d managed to get Bex’s number and we had a lovely chat and she was explaining to me that I need to be rescanned because the scans I had at Hull didn’t actually look very favourable. So the whole idea was that I would be rescanned. And I went to see. I went to meet Mr. Wilson, Malcolm Wilson, who I class now as my hero. So I went to see him and he was very honest with me. And explained that if the scan doesn’t look favourable that I have at the Christie, they basically won’t do the operation. It has to be contained within this area. And I had the scan over Christmas that year. And we actually had a really good Christmas that year, which sounds a bit strange, but we kind of just thought we’ve just got to have this amazing Christmas with the kids and my family. My brother came over with his wife and kids and mum and dad came around. We had a really good Christmas. And then I remember this phone call. Like it like it was yesterday, Bex rang me up. It was the 5th of January 2015. And she said, I’ve got some really good news for you. We’re going to operate on you. And I was so excited, which sounds like so strange that you can be so excited about an operation when you’ve already had two but I knew this was my chance of survival and this operation would be really intense. But it would be the best chance I had of living. So the operation was booked in. We obviously celebrated and on the 26th of January I had this operation called Cytoreductive surgery and HIPEC, which obviously I was so naive with all this. So it to me it was just that I was going to be opened up. They’re going to get rid of the cancer. And that they were going to put this hot chemo in and then at this point as well, we didn’t know whether it was going to be a permanent removal of my bowel or whether I would have my stoma reversed and also my bladder didn’t look too great, so until they went in my bladder had a bit of a question mark over it and also a hysterectomy. So I went in for this operation, waved bye to the boys and it was a bit surreal that I was going to Manchester because obviously we live in East Yorkshire, so off we went. Gareth took me. And they performed this cytoreductive surgery. And I remember waking up and seeing Mr. Wilson there. And the first thing I said to him was “what have you taken?” Because obviously I didn’t know when I was going to wake up with permanent bags for my bladder, my bowel, and he said, well, what I can tell you, Rebecca, is that I’ve got rid of all the disease. So obviously that was all I needed to know. He’d actually got rid. He felt confident. He didn’t give me any idea that he, you know, he said everything had gone so well and he’s got rid of all the disease. I had a hysterectomy. But. You know, that was fine. I’d. I’d had my children and I wasn’t planning on having any more. It had gone to my ovaries, so that was why. And then they’d taken away the appendix and they’d taken the peritoneum, the lining, you know what the cancer had been taken. And that was the main thing. I could cope with everything else. They couldn’t reverse the stoma, but they were looking at doing that later on so that was great. So everything looked, you know, amazing and I didn’t have to have any more chemo. So I came away from that basically. My life has completely changed and I was so lucky and one of the lucky ones that that operation could happen to cause I know not everybody is that lucky. That was where we are really with that with me going to the Christie and then everything has been quite smooth sailing since then. Yeah, that’ll be coming up for ten years in January. So it’s yeah, it’s been quite a journey, but.
Sam
Wow.
Becky
I do feel lucky that I could have that operation and I did go back in the July that year to have my stoma reversed as well. So I’ve had the four operations and hopefully it’ll carry on going like this because life is good at the minute.
Sam
Wow, that’s an amazing story. And yeah, I’m feeling quite emotional just listening to all of that and so happy that it has a such a happy ending. And yeah, really brilliant that that you were able to have that surgery because you know, as, as you say, not everybody can
Becky
Yes.
Sam
And what a whirlwind. I mean, just picking up on a couple of things, waking up with a stoma. Did you know that there was a possibility that that might happen? And did you know what a stoma was and all of that sort of thing?
Becky
Yeah. So before the first operation had in Hull, they did say I might have to have a stoma. So they did explain it to me. But obviously when I woke up without one. It was like, oh, wow, you know, I mean, if I was told I had to have another one, to be honest, it wouldn’t be as scary as it was when I first was told, because I’ve had it for 16 months. I’d had it a long time. The kids found it really fascinating, as you can imagine. You know three young boys. But I wouldn’t be as fazed if I had to have one again just because I’ve dealt with it, it was fine. But obviously when I woke up after the first operation, I was relieved I didn’t have one. So when I woke up again after the second operation, the week later and. I had one, I probably was a bit disappointed at the time. But at the same I felt so ill at that point. I was just glad I got through it and that they’d sorted out the pain cause I was just in, I was in so much pain and felt horrendous. Like I said, I’d gone down to six stone. I was just literally so tiny.
Sam
Yeah. Well some people sometimes look at stoma and think, oh gosh, that’s a really terrible outcome and, you know, sort of dread it. But actually having a stoma can potentially make things a lot better for people and improve symptoms and things.
Becky
Yeah, definitely. I know people have them for all sorts of reasons, don’t they, bowel related, not just bowel cancer. But I mean I had ups and downs with it. Don’t get me wrong. You know, I’ve done the Race for Life many times and with that and it’s been a challenge. You know, especially that first year when we did it, stopping all the time at different toilets around the way and but you know what, it’s so clever when you actually look at how it’s done and how it can leave your bowel for that amount of time you know from working and it’s just coming out, it’s quite amazing how it works.
Sam
Yeah, definitely. And can you tell us a little bit more about the operation as well and the HIPEC? So that’s you said putting having an operation, then putting chemo inside like inside the opening, I guess?
Becky
Yes, I mean, Bex might be able to explain a bit more, but from a patient point of view, how I see it is that while you’re opened up the cytoreductive surgery is obviously taking away all the cancer. But then the HIPEC is poured into you while you’re opened up, and then I believe it’s left for about an hour, an hour and a half, and then it’s drained out your side. So I’ve got 4 scars at my side where the tubes it would have been drained out. Is that right? Bex, does that sound about right?
Bex
Yeah. So there’s a profusion machine to the side of the patient. And then there’s four tubes that come from the profusion machine into Becky’s side, basically. So two of the tubes put the chemotherapy into the abdomen and two of the tubes remove the chemotherapy at the end of the 90 minutes, you were quite right. And so yeah, and it’s the hot chemo that bathes the organs and the abdomen is sort of, it’s like on a cage, if you will.
Becky
Ohh.
Bex
But we are doing it differently now. We’re actually closing the abdomen and letting the chemotherapy bathe inside. Then once the chemotherapy is left, we then open the abdomen back up and complete the operation. So that’s since you had your surgery, Becky.
Sam
Amazing.
Becky
That’s amazing, isn’t it? That they can do that?
Sam
Yeah. I mean is, is this quite a new thing, HIPEC, has it been around a while, or?
Bex
So HIPEC was actually originally developed by a guy called Paul Sugarbaker in Washington, he developed this for a different type of tumour which came from the appendix, and Professor Dwyer and Mr Malcolm Wilson, they brought this magnificent surgery to the Christie in 2001, and we’re officially commissioned in 2002 to operate on patients with this rare appendix tumour. With this, with this surgery, with the HIPEC, and then as the years developed as the years went on and we’re seeing colorectal cancer affecting the peritoneum, that’s when they started to offer this surgery for those types of patients. And you know, like Becky said, she was given two years to live and patients diagnosed with peritoneal cancer, they are given a prognosis of 18 months to two years because chemotherapy doesn’t work very well on the peritoneum. So this is where the surgery is so life changing as Becky said and wasn’t offered until, I mean, Becky, you’re 10 years in January, aren’t you? So we’ve probably been doing it for maybe the last 12 years, something like that. I might stand corrected from the surgeons. We’ve been doing it that long now I can’t remember, but it’s been around that 12 to 13 years that we’ve been doing it. So yeah. It literally cures patients, but it’s very specific to the patient as well, like Becky said quite correctly, we can’t offer it to everybody unfortunately, because some people just aren’t suitable for it. And that’s usually because disease is in unfavourable sites in the abdomen and pelvis, that actually can’t be removed and the most important part of cytoreductive surgery and HIPEC is the cytoreduction. So it is the surgery part that is the most important. Being able to remove that visible disease because the heated chemotherapy only works on cells less than two millimetres. So you can’t just go in there and just chuck a lot of chemotherapy and for example, and just think that that that would get rid of it because it just sadly doesn’t work like that. So it is very particular and we do try and pick patients really well by looking at their CT scans. And MRI scans as well to see if they’re suitable for the surgery. And luckily Becky was.
Becky
Yeah.
Sam
When somebody is suitable, then does HIPEC have quite a high success rate because only particular people are suitable for it?
Bex
It has a good success rate, I can’t give you percentages today, but we do have a very good success rate with cytoreduction and HIPEC. Just repeating that it’s important that we are able to remove the disease. Not just give the HIPEC so you know, we do have lots of Beckys, which is great, you know, and some patients do recur after cytoreduction and HIPEC, unfortunately. But you know, we’re giving them their best opportunity and their best chance by offering it.
Sam
So, Becky, what were you told about the peritoneum when it was first explained to you? How was that explained to you?
Becky
So I was quite naive to it all. I mean, obviously I’m not medical and I didn’t really have a clue what, you know, what it all meant, but when I was chatting to Bex, that’s when she would explain anything. Any questions I had, she explained it to me and I knew that just from conversations with Bex and obviously talks with the first meeting I had with Malcolm Wilson, I knew that it had to be contained in there just like Bex had just said. You know if it would gone, I believe it if it had gone anywhere else in, in the body, that particular operation wouldn’t be suitable. So I knew the peritoneum was like. Like a lining in your abdomen and that’s where mine had spread to from my bowel. It had gone to my ovaries and this lining, so I just knew that that particular operation was available at the Christie and it was. It needed to be in that specific area for it to work and be successful.
Sam
Obviously have a great relationship with Bex. What about the rest of your support network? Who do you have around you and how has that helped you?
Becky
So from the beginning, obviously I’ve got Gareth who we’ve been together for, I think 23 years I think we’ve been together now and then we’ve both got our parents that live locally. So they’ve been amazing, you know, especially the early days when I really needed them because the kids were so young, they still needed taking to school play school, William was still, you know at home, before he was too young for play school, so we had our family and we had, we’ve got some amazing friends who helped do anything. I mean they would pick the children up, they would have them for tea. They’d take them to the soft play. You know, Gareth was obviously with me a lot of the time and his work as well. He works at Howdens and they were brilliant. They basically let him have whatever time he needed to be with me. So we were really fortunate. I was a stay at home mum after having William so I didn’t have, I wasn’t working, so thankfully I didn’t have the pressure of work. I know they’d probably have been understanding obviously, but I was quite pleased I didn’t have that added pressure of when I was going to go back to work and things. So yeah, we’re really lucky and I think the community we live in. We did loads of fundraising events and everyone just seemed to like rally around and help do whatever. And I think that really helped, you know, like I just knew I could ask anybody to help me do anything and they would. So I was, I feel really lucky I had that support network around me at that time. Definitely.
Sam
And what has life been like for you since your diagnosis and treatment and everything? I mean, do your operations and things still affect your daily life? And what’s that like?
Becky
Now, yeah. So I mean it’s a funny one, really. Because although like nearly ten years clear. It doesn’t ever leave here, like every day, there’s not a day that goes by where you don’t think about what’s happened here, and you almost feel as if it happens somebody else because it’s so, like, horrendous the journey, you know, what happened but. Obviously I feel incredibly lucky. I definitely am one of the lucky ones, but my day-to-day. Certain things, I mean, they’re very minor things in comparison, but I can’t eat certain food. So if I eat something, and now I know it’s mushrooms because I’ve actually been admitted to hospital a few times now. I get a blockage. So I think it must be where my bowel was obviously put, sewn back together. It must be a bit narrower, so I’ve been in. I’ve been a bit at a hospital a couple of times. I did think it was mushrooms the first time, but obviously I didn’t know for sure. And then I had mushrooms only a couple of weeks ago, actually, and I was in unbelievable pain and it started about 8:00 one night. And I do get blockages. It can happen quite often for various food, but it normally passes within a couple of hours. But this particular night a few weeks ago it went on through the night. And I actually got to the point where I thought I’m in that much pain. I didn’t know if I needed to ring an ambulance. I was in agony and it got to 5:00 in the morning, and I was still in pain. In hindsight, I should have probably gone in a bit earlier. But I worked out with up and we got his, we got Gareth’s parents to come round. Obviously, the kids were still in bed. And he took me to A&E and it did sort itself out, you know, they just gave me some morphine for the pain and it, thankfully, it managed to carry on working. The pain started to subside, but I now avoid mushrooms, so I’m never going to eat them again. It’s not worth it. And there’s a few things that it affects my day-to-day life. I think it must have been when I had the cytoreductive surgery, and maybe when I’ve been open, I have ribs that come out if I do sit-ups, I just avoid sit-ups. But that’s nothing that you know, it’s not anything that serious. I can just pop them back. Carry on. And what else? Really? Nothing. I mean, nothing major at all. I think I’m so lucky that. You know it. It’s very minor. What I’m left with, but obviously the scarring is always there, isn’t it? That’s never gonna go. But yeah, I’ve. I’ve got a really good life. I’ve we’ve got a really lovely family. And I’m lucky that I’m able to see the kids, you know, of them being so. You know, grown up now, I’ve seen Ben do his first driving lesson this week. He just turned 17 at the weekend and William is starting senior school in September and Tom is going into year 10. So I do feel very fortunate, you know, the things I do deal with the minor and I’m here and able to see the boys grow up. So that’s the main thing.
Sam
That’s brilliant to hear. And coming up to 10 years as well, it’s really wonderful. So Bex tell us about your job then. So what does your job involve?
Bex
So my job is very varied. When I put it in a list what I actually do, it doesn’t sound very much, but I do a lot. So basically I’m the advocate for the patient and the patient support. We start with the patient right from the very beginning. Becky said, you know, the moment they are referred to us or even before they’re referred to us and they contact them themselves, they can contact us themselves. We present them in the MDT. We then meet with them in the clinic with the consultant and talk about their treatment plan. We get them all prepped for surgery. We’ll see them on the ward when they’ve had their surgery, and then when they go home, a lot of this, a lot of what we do comes in, then sort of. We ring them when they go home, check they’re OK. We see them back in the clinic. And then in comes their surveillance, which is for 10 years, so we’re friends for 10 years and we talk 6 monthly, once a year, whenever they need us. We’re always there to support the patient. I particularly feel as a clinical nurse specialist that being there and being available is the best thing that you can do for your patient in such a scary and daunting time. Particularly having this huge surgery, so you know, like Becky said it, it does make a difference to know that they have a specialist nurse just there. So that if they’ve got any questions, any worries, things just aren’t quite right that we’re there to help them point them in the right direction, bring them in, rescan them, whatever it is that they need, that’s what we’re integral in doing, basically. And then comes lots of other things around that that I do as a specialist nurse, but that is the main thing, the patient journey.
Sam
That sounds so valuable. Yeah, it must be. Yeah. Really valuable to have that long lasting relationship throughout the whole journey from beginning onwards. And yeah, patients, you know, need somebody to advocate for them and to communicate with them. I mean, in my patient experience, half of the struggles that I have with hospitals is just not having the communication there and not knowing who to go to and all of that stuff. And I always say there’s so much burden on the patient as well to advocate for themselves and chase things up. So yeah, it sounds like wonderful work that you’re doing to help with all of that.
Bex
Thanks Sam.
Sam
So how did you come to specialise in peritoneal tumours? What drew you to that?
Bex
Well, when I finished doing my nurse training in 2006, I was lucky enough to, I did that in Oxford, actually, and I was lucky enough to get a job at the Christie on the surgical ward. So I started there, in the October of 2006. And I think it was about three years in. I, you know, we looked after all sorts of different types of cancer on that ward, but particularly I was drawn to the patients with appendix tumours and peritoneal disease because back then we didn’t look after colorectal cancer with peritoneal disease with cyto and HIPEC. So it was very much appendix with peritoneal disease. And yeah, I just loved looking after them. I just, I don’t know. Maybe I had a way with them. And when the job came up for the support specialist nurse, I just went for it and I was successful and then really, the rest is history. I’ve just. I think I just love being involved in something that’s so special, so rare. We’re one of two centres in the UK, in England, should I say, that look after appendiceal tumours and then, you know, with everything else. With the colorectal side, with the peritoneal metastases again, it only affects, I think it’s 5% to 10% of bowel cancers. So you know just being involved in that and being able to change people’s lives with the rest of my amazing team just makes everything so worthwhile.
Sam
And what are the biggest or most common issues that you see for patients with peritoneal tumour?
Bex
Well. For colorectal cancer, a lot of the time peritoneal disease can just be picked up incidentally on a CT scan. You know, as part of their surveillance, or some patients actually present with their colon cancer with spread over the peritoneal disease. So they may have just been getting all the normal symptoms that you get from a bowel cancer. If they’ve had their colon cancer removed and they’ve got peritoneal recurrence, sometimes they can get crampy abdominal pain. That’s quite persistent, changing appetite. A lot of the same symptoms that you get from the bowel cancer, really. But like, say, sometimes it’s just incidentally picked up on a CT scan.
Sam
And are there any other treatments that are available to patients with peritoneal metastases? Obviously, we’ve talked about HIPEC and cyto…
Bex
Cytoreduction.
Sam
Thank you!
Bex
Yeah, we don’t expect you to remember all the words! Yeah, so. I think I touched on it earlier in if patients are diagnosed with peritoneal metastases, chemotherapy is not a cure for peritoneal metastases. So the next step to that is cytoreductive surgery and HIPEC. And if they can have that surgery and have successful outcomes, they’ll go on to be long term survivors. They are the main treatments? Yeah, for peritoneal metastases.
Sam
And we’ve spoken about the support that you give to patients. We’ve talked about Becky’s personal support network as well. Is there any other support that’s available to patients that we haven’t covered?
Bex
Yes, we do. Actually at the Christie, we hold an annual health and well-being event, which we’ve been doing since 2016. So this is an amazing day. It’s all about the patients. Becky kindly presented at one of those patient days quite early on and told her story in front of an auditorium full of patients and families and healthcare professionals. She was incredibly brave and did an amazing job at this as well. Not a dry eye in the house, and yeah, it’s just it’s just a great day, isn’t it? It’s where patients all come. Healthcare professionals will speak at the front, such as physiotherapists, clinical psychologists, dietitians, occupational therapists, talking about fatigue. You know, we have our consultants talking about research and where the colorectal and peritoneal oncology centre are up to. We have a lovely lunch, don’t we, Becky? And that always a great buffet where everybody gets to network with each other, meet new friends, share experiences with each other in private. And the day has just evolved. Over the years, it just gets better and better and better. And the feedback is just immense. What we get from the patients, they love it. They look forward to it. Each year. They’re all putting their hands up to sort of present at the front and share their story, which is quite incredible. And us as healthcare professionals are always completely in all of them. Yeah. It’s just brilliant. Becky, what do you think of it?
Becky
I did. I felt like, you know, when this you’re sort of telling your story, but you can tell it hits home to a lot of people, like, everybody’s got a different story to tell, haven’t they? And I really enjoyed listening to other people’s stories. They were all, you know, they all varied and it’s just so interesting to meet other people that are going through it as well or have been through it. So it’s always, you always put on a really good, a really good day and it’s always nice to see you and Mr. Wilson as well.
Bex
Definitely, it is a good day. So that is something that we like, I say we put on once a year for patients and families to attend. We also have a bowel cancer support group that runs every month over at the Maggie Centre. So we’ve always got a support area there as well. So there’s all sorts of things going on. There’s a bowel cancer health and well-being event that we started last year, that, the one that we started in 2016 is specific to peritoneal metastases. So there’s so much going on all the time that people can tap into to get that additional support. We’re also really lucky to have the Maggie Centre across the road as well that can support patients and of course they’ve got us.
Sam
Great. I hope that anybody who’s listening, who might benefit from that support has picked up something helpful there as well. My last couple of questions to both of you then firstly, is there anything that you would like to see improved or changed for patients?
Becky
So I think from my point of view, I was lucky I got referred to the Christie quite quickly by my surgeon in Hull. So I think I would just sort of hope that there would be a quicker you know, for other people that maybe haven’t been referred as quickly. So I’d say to people to sort of go to your GP with your early symptoms and I would ask for a second opinion. If you don’t sort of, if you’re not happy with the answer you’ve received, always get a second opinion. And then I think if you’ve got peritoneal metastases, I think just ask for a referral to a peritoneal centre, as I believe the earlier you get referred, the more chance you’ve got of receiving the operation I had. So I just think it would be improved or change would be just for maybe the knowledge to be out there, you know for people to get referred quicker. I think that would make a huge difference to a lot of people.
Bex
Completely agree with Becky. It it definitely is down to early referral to a specialist centre that’s absolutely key to patients. So we are here. For people that are listening, and if you need anything, we’ve got our website that you can access www.christie.nhs.uk/cpoc. That’s Charlie Polly orange Charlie. And there’s lots of information and advice on there and on contact numbers. So yeah. Please do reach out if you’ve got any questions about your journey.
Sam
And I’ll put that link in the show notes for people as well, so they can click through.
Bex
Thanks.
Sam
And then finally, what one takeaway would you like to leave listeners with today?
Becky
I think I would say always have hope and hang on to it. If, you know, when I was referred to the Christie, I never let go of that hope. So until they tell me they can’t do anything. You’ve got to. I know people don’t always like the words “be positive” and things like that. But it is about that and you’ve got to really hang on to that hope that, the percentages don’t always look good. But then why shouldn’t you be in that percentage of people that can be operated on? So I just think it’s trying to look on the on the bright side of things. Like, you know, try and hang on to those positives. If you’ve been referred, then there’s that chance, isn’t there until they tell you otherwise. So yeah, and accept any help that’s offered to you, cause when you’re feeling so rubbish and some people don’t like to say yes to things. But I think sometimes you just need to accept the help when it’s offered. And it just makes life a little bit easier when you’re going through such a tough time.
Sam
Lovely. Any final words from you Bex?
Bex
Again, just echoing what Becky has said, you know. Just make sure that you push for referrals to a specialist peritoneal centre. It’s really important. We’re always happy to review scans and assess them and you never know. You might be that person like Becky said who’s in that percentage. And just want to obviously say thank you so much to Becky, who’s just incredible.
Becky
I couldn’t do it without you, could I? You’re a, you’ve been my absolute rock all the way through it, to be honest. Yeah, we’re lucky to have you there because you literally know everything there is about peritoneal bowel cancer. You know, you are such a fountain of knowledge. So. And you know, you and you and Malcolm Wilson. You know you’re, well I love you both to bits.
Bex
We’ve got, we’ve got Sam crying!
Sam
Ohh God, don’t tell the listeners. They don’t know!
Bex
It’s bad when we’ve got the interviewer crying.
Sam
I’ve got a reputation to maintain! And on that note then?
Sam
Oh, that’s wonderful. It’s been so great talking to you both. And Becky, thank you so much for sharing your story. And Bex, thank you as well. It’s. Yeah, it’s been great and just really to see the relationship between the two of you as well and to hear how well things have worked out. Yeah. Thank you so much for coming to talk to me.
Becky
Thanks for having us.
Bex
Thank you.
Becky
Thank you.
Sam
Thank you for listening to Can I Butt In. This podcast was brought to you by Bowel Research UK. Find out more about the charity, our work and how you can get involved. Visit BowelResearchUK.org where you can join our People and Research Together network or PaRT; read about our research campaigns and fundraising; or make a donation to support the vital work we do. Let’s end bowel cancer and bowel disease.