As part of Patient Panorama’s commitment to listen to patients, our ‘Patient Voice’ series aims to shine a spotlight on peoples’ experiences with various conditions, from cancer to PTSD, from infertility to menopause. We will be asking people to share their journey from pre-diagnosis to where they are now, reflecting not only on the challenges they have faced, but also their achievements they have worked hard for. Insights from these interviews will be used not only to help refine our own approach to patient research, but also raise broader awareness about each condition. Head of Patient Panorama, Kirsty Page, sat down virtually with Nav Johal, to look back at her diagnosis with stage 2 bowel cancer in 2019, and what has got her to where she is today – a point where she has now had no evidence of disease for nearly 5 years. Nav works for the Met police in London, serving as a Detective, whilst also doing a lot of work to raise money and awareness for bowel cancer charities, such as Colostomy UK and Bowel Cancer UK. Please take the time to read about Nav’s experience, and if you can, donate to the Bowel Cancer UK walking initiative that Nav is a part of, using the link below. https://fundraise.bowelcanceruk.org.uk/fundraisers/SOLESISTERS When did you think something might not be right Nav? What led you to the hospital? I was bleeding for a while when I was going to the toilet, this was off and on for a few months. In my 20s, I had an anal fissure, so I thought it was going to be similar to that, and that was relatively minor, so I ignored it. I was working really long hours at the time, and had been for about 18-months, so I thought it was probably connected. I actually ignored the bleeding for about 6-months before I went to the doctor for blood tests. They weren’t really interested in me because of my age – I was 38 when I was diagnosed and didn’t really have any other symptoms. My bloods came back fine, including my tumour markers. Ultimately, it turned out I was a non-secreter so wouldn’t have shown an increase in cancer markers. But I was also coming up negative for colitis and inflammation, so it was put down to IBS. What happened next? The bleeding got a lot worse, and I was going to the toilet a lot. I spoke to a locum at my surgery, and she said, ‘Let’s not say it’s IBS until we rule everything out’, so I ended up getting sent for a colonoscopy. It was around Christmas time, and I wasn’t put forward as urgent, so I had to wait 8 weeks. Whilst I was waiting, I was going to the toilet maybe 7-10 times a day, bleeding a lot, losing weight and feeling really low on energy. What was the colonoscopy like? I had to do bowel prep before, and that was the most difficult and disgusting part of the process. It is almost impossible to drink all of it. It doesn’t taste of anything, but it’s very difficult to drink. Makes you feel like you want to throw up. The camera up my backside was a breeze in comparison! But I still didn’t think it was anything serious and neither did my consultants. But the whole hospital process was awful. They put me in a room in what felt like a corridor. It felt so impersonal. When they were calling numbers out, it felt like we were cattle and also like a pin cushion when the nurse couldn’t get cannulas in. What were you told was going to happen to you? The Consultant explained the colonoscopy procedure to me. He told me it was probably going to be colitis and I would just go home with some medicine. But while he was doing the procedure, he asked me if I had done my bowel prep, because he thought it wasn’t as clean as he would have expected inside me. But what he thought was waste, was actually my tumour. It was in my rectum, and was 10cm long, so it was huge. Then he actually turned the camera away from me so I couldn’t see, but I could feel little snips and cutting things out. I asked him what he was taking biopsies for, and he said he would tell me later. How did you feel afterward? I went into recovery for half an hour. I was waiting to see the consultant, but then a nurse came in and told me “I could go, and the operating team would get back to me”. No one had told me anything about this. I told the nurse “I don’t know what you mean, what operating team”. He gave me my report, and it said they had found a 10cm tumour in the rectum, 2 polyps and that the patient had been told that a cancer diagnosis was likely. The Consultant never had that conversation with me. I could see the nurse realised there had been a mistake and he went to get the Consultant. I had to wait another half an hour to see him. I called my partner but didn’t tell her what was going on. When he finally arrived, the Consultant was really ‘up himself’. He came back with a coffee, legs crossed, sitting back, leaning back. The way he spoke to me is not how I would want anyone else to be treated. These people exist – they tell people on a Friday afternoon that they have cancer and don’t have long to live. He told me the cancer was really advanced and that “you have more chance of winning the lottery than of it not being cancer”. There were no tissues in the room. My partner was crying a lot. We were told to go to the toilet and get our own tissues. There wasn’t even a nurse there for me. He ended up leaving a post it note behind with a number that said I was to call on Monday. I went home on Friday thinking… …I am dying. Hearing the news that I had cancer was all just a blur. I had to figure out a way to tell my twin sister who I am really close to. I couldn’t get the words out; it was my partner who had to tell her. I couldn’t say the word cancer. I struggled to say the ‘C’ word for about a year after I was diagnosed. I also had to go to my parents to explain it. In my culture, people don’t talk about bad things that are happening, which meant they didn’t want to share with the wider family, so they kept it to themselves. I told them they needed to offload. I could see that they weren’t sleeping and that I needed them to be ok. I couldn’t deal with their stress and my stress as well. That weekend I didn’t sleep. I cried all weekend, planning my funeral. I felt I was too young, and I was worried about my sister because I knew I would struggle to live without her, so how could she carry on the rest of her life without me. That was the worst thing. What was the next step for you? Initially I was told that I would have to start chemotherapy to reduce the size of the tumour. But at the time, I didn’t want a permanent stoma, so for a better chance of a successful recovery, they went with the surgery. The surgery took a long time and was done in two stages. I had the first surgery in March 2019, when the tumour was removed including lots of lymph nodes as well as non-swollen ones, just to make sure they got all the cancer. After that first surgery, I was given an ileostomy, which is usually a temporary stoma. It ended up that I was diagnosed with Stage 2 cancer, and my doctors worked out that having chemotherapy would only reduce the chances of the cancer returning by 2%. The Consultant was good and gave me advice, but I was left to discuss it with my friends and family. It was my decision. What did you talk about with your family? My parents put a lot of faith in what doctors tell you to do, but I don’t think that is necessarily the right approach. I talked with my partner and sister the most. We discussed whether I should wait an extra two weeks for a low-join specialist to help with the operation, which is what we decided to go for. I just knew that I did not want to poo out of a bag, out of my stomach. I didn’t think I could have lived my life like that. But I didn’t really understand what a stoma was. Every single day waiting for that surgery felt like a month. You are thinking that this thing is inside of me, and it is killing me every single minute that it is inside of me, and you want it out now. It was the only thing I could think about. But I was told that waiting for 2 weeks wasn’t going to make a difference to the tumour…but still. What kind of help did you get to make that decision to go ahead with the ileostomy? I did get lots of information in the beginning, but there was a lot that I just didn’t read. Things just get filed away. My Consultant was great though, spent a lot of time reassuring me and explaining things to me. But there were still lots of occasions where I don’t think I was told things that would have been relevant to some of the decisions I made, like how successful reversals are. Maybe I would have gone straight to a colostomy rather than an ileostomy and my recovery time would have been a year not three and a half. I don’t feel I was given enough information. I ended up telling the doctors that I didn’t want a stoma, and that I wanted them to do what they could to get me ‘back to normal’. But I wasn’t ever told that the chances of a successful reversal are quite minimal. I wasn’t told that they could try, but there would be risks of me being out and about and soiling myself, because I wouldn’t have any control. Knowing that would have been important; I might have made different choices. I felt I made my decision before I understood everything fully, and they just said that’s ok, that’s what she wants, that’s what we will give her. After my surgery, whilst I was waiting to be discharged, I remember saying to my consultant, “So, after the reversal, everything will be fine”, and being told that no, I would probably still have accidents every so often. And that was it, that was the end of the conversation. This was the first time, it that moment when I was being discharged from hospital after having had my initial surgery, that I was told I might still shit myself? I was like, ‘what’? I am 38 years old. I can’t live a life where I am out there doing my job and there is a chance I could crap myself. I think it was the first time I was told that. I don’t think I would have forgotten something like that. So, you had the surgery, and your focus was on the temporary stoma, so that you would be able to have it removed in the future. As you came up to the point of reversal, what was that like? They did tests on me to see if I was ready for it. But it was too tight up there, they couldn’t get a tube up, so I needed to have dilations. I didn’t know that was a thing! This is the kind of advice I give to people on the helpline I volunteer for, when they call for help. I had the dilations over a span of 6 months, or that was then plan, so I would be ready for the reversal in March 2020. But then, COVID. Everything was stretched out for another 14 months. I didn’t end up having the reversal until May 2021. It sounds like you regret the decision? If someone had said to me that there was a 20% chance of a successful reversal, I would have said let’s go for it. I would have regretted not trying it. But if someone had sat me down and told me what their idea of a successful reversal was and asked me to say what I think a success would be, then things might be different. Some people are happy to live a different lifestyle because they don’t want a stoma. They would rather have a life where their bowels aren’t 100%, or even 50%, and maybe once a month they soil themselves. Their idea of success is different to mine. But after my reversal I was always in pain. I tried to manage it by doing intermittent fasting, but I was hungry and moody, and it affected people around me. I was having to do enemas every day to try and get some relief. Twice a day. To me, that is not a successful reversal. But I couldn’t live with an ileostomy either because the doctor wouldn’t be able to monitor the rectal area properly. So, the decision was either change to a colostomy, or to try for a reversal and then if it doesn’t work then do the colostomy. I thought I might as well go for the reversal. When I woke up from the reversal, it took a long time for the stoma site, which is an open wound to heal. This possibly took a little longer because I don’t eat meat. They said it would take a couple of weeks, but I was in hospital for two weeks and it never even started to heal – it took six weeks in the end! Being in hospital and having the right type of diet for me was also difficult. I had to have a PIC line with nutrition packs. It had animal proteins in it, but I had to have it otherwise I wasn’t going to get anything. Eventually I did get a nutritionist who even went to the shop to get soya milk! I was also in so much pain from the incisions in my abdominal area, as the surgery involved cutting through my abdominal muscles rather than cutting into fat. I still have issues three years later; I have some pain and keloid scarring. It doesn’t seem like it was straightforward for you. No! My bowels still hadn’t even opened whilst I was waiting for the stoma site to heal. But I actually got my period whilst I was in hospital, and I don’t know if it was a combination of getting my period and also being given lots of chewing gum to eat, but they did open eventually, after 11 days! There was a lot of blood, but I had been warned that would be the case. I knew my consultants had been worried about it. I ended up being in hospital for fourteen days after my reversal. Normally it would be three to five days. Overall, the level of control I had was ok, but going to the toilet was difficult. They didn’t warn me about avoiding using toilet paper though, as going to the toilet maybe 10-20 times a day means it hurts! When I eventually got out of hospital, I only really had one big accident and I pooed myself when I was out running, but what can you do? The accidents do get you down though. You think, ‘that’s not how I want to live my life’. It’s like ‘shit happens’ – but that is what I am saying on the outside. Inside, I am gutted. I am just thinking about the fact that I shit myself. What happens if I do that again, but not so close to home? Though I ended up having been reversed for eighteen months, I made the decision after six months that I couldn’t live like this anymore. I was bloated, I had to put up with more dilations, my stomach pain was really bad, and I could hardly eat. I looked ill and I was angry, snappy. My sister and my other half just had to tolerate it. What happened after you made the decision, and knew the reversal wasn’t working for you? Well, I had more conversations with my consultants, and we talked about the fact that things could maybe get better over time, but it would take years and there would only likely be a small improvement. So, we decided to do a colostomy and a barbie butt. Barbie butt? Yes! It means, everything is tidied up and sewn up down there. Its proper name is a ‘Complete Proctectomy’, but everyone calls it a Barbie Butt, or a Ken Butt! Removing everything reduces the chances of the cancer coming back. The decision was made to do the colostomy and the Barbie butt done at the same time, to get it all done in one go. When he explained the barbie butt, I didn’t really want to go through another procedure like that. I wanted something simple, I really wanted to get back to work and I didn’t want to be in the hospital again. It was my third major surgery, and they also took out another 27 lymph nodes. I was ready to go back to work in 2 months (unlike my reversal where I needed 6 months to recover), though my Occupational Health officer at work asked me to rest for another month. But since February of this year, I have been fully operational. How do you manage your stoma? I just manage it! I know what I need to do in terms of eating and drinking. I always carry a little ‘go bag’ with me, with spare stoma supplies. Last week, I went to New York with my other half, and I had to change my stoma bag on the plane, because that was when it filled up – you just get on with it. Going through security can be challenging, especially with those 3D body scanners, so I try and explain it before I go through. Some of them don’t understand, others don’t even care! But overall, I have managed to fit the stoma and colostomy into my life relatively easily. Within 2 weeks of being home, I was eating and living better than for the entire eighteen months with my reversal or with the two years with my ileostomy. Compared to how it was after my first stoma surgery, where I had to wait seven months before I could play football again, this time, it was only three months. How else has your life changed would you say? I’ve thought about the importance of language a lot. When I was talking about my ileostomy with consultants, they would say things like ‘don’t worry, we will be able to reverse that later’, like an ileostomy was a negative. Another time, I was doing a presentation for my stoma nurse for a ward nurse’s ‘Away Day’ about how I was treated when I was in hospital. A consultant was also speaking, and he said that “while some patients will have a temporary stoma and then a reversal, others will unfortunately have a permanent stoma, a colostomy”. The nurse interrupted him to correct his wording and said, “it is not unfortunate”. For me, my stoma has given me a better life than my reversal did. Before, I couldn’t be operational at work because I couldn’t eat, I was tired, I had headaches, I couldn’t play football. So, for me, it wasn’t unfortunate. I do still have some issues though. For example, using disabled toilets, when I don’t have a visible disability. If I am going to change my bag, I need a sink, a bag and somewhere to hang up a kit. It’s typically the older generation who make comments and it once even happened to me in a hospital. An older lady with a walking frame told me that “this toilet is for disabled people you know”. And I said, “is having bowel cancer a good enough reason to use a disabled toilet”? It does happen quite a lot and it makes you anxious, I don’t feel I should have to explain myself, but if someone challenges you like that, I think about it all day. But, overall, life now is really good. I am due for a CT scan and a blood test soon, but I do have to chase them up for it. My last scans will be in March 2024, and at that point, if it goes well, I will be 5 years without disease. I don’t like saying I am a cancer survivor though. I don’t like saying I beat it, that it is a battle. For me, if someone has lost their battle, then it sounds like they were defeated and that is not the way I want to see them. We talked earlier about how you felt you didn’t get much support, or were even educated properly about procedures, risks etc., that meant you maybe weren’t always making fully informed decisions. What impact has that had on you? I wasn’t given any information after I left the hospital after my diagnosis, or clear direction about my surgeries and their risks. I didn’t even have a Macmillan nurse. A few months after my surgery, I saw a charity online called Colostomy UK. They were doing an active challenge and I am an active person, so it suited me, so I became involved. Then they asked me to become an ambassador, so I started volunteering for them and will take phone calls from other people who are in a similar situation to me and have questions. It’s really rewarding to speak to people and to make sure they are clear about what they are going to be going through and trying to support them. I also do advocacy work on my own social media and was contacted by the ‘Girls vs. Cancer’ charity (Me, You and the Big ‘C’ podcast presenters which Deborah James was involved with) to come on and speak. Before that, I also did a bowel cancer campaign to raise money, and we ended up doing a photo shoot with them, selling t-shirts that said, ‘Give a Shit!’ It feels good to help others and it’s so important to speak to someone who has gone through it. What does this mean for us at HRW? It’s clear that Nav has been forced to go through so much after her diagnosis. Cancer has taken a tremendous toll, not only on Nav’s physical health but also on the important relationships she has with those around her (friends, family, loved ones – even with her healthcare professionals), as well as on her job and her passions, such as exercising and sports. Nav’s cancer drained energy from each of these crucial foundations in her life -fundamentally changing what it felt like to be Nav. At least, for a time. But during that time, and due to circumstances outside of Nav’s control (primarily a failure in informed consent), decisions were made that exacerbated these cracks in those foundations further. Although shared decision making in healthcare is becoming more of a commonly used terminology, it seems it might not always be held to the high standard that should be expected of it. The role of the family network continues to be crucial and must take equal weighting when it comes to understanding patients better, as they play such an important part. In Nav’s case, it fell to her sister to have to share the news of Nav’s diagnosis to their parents, with Nav unable to utter the ‘C’ word. There is a risk, that sometimes the ‘C’ word sounds a little too nebulous and sanitised. Useful as a sound bite or a headline, but also hiding a darker story, trying to shepherd us away from a story that we know we are too frightened to find out more about. But in this case, the ‘C’ word for Nav was spectacularly, immovably concrete; something tangible that dropped like a stone into her life and whose ripples impacted even the most basic of communication. A simple conversation, but a life changing one and as a result, Nav being increasingly reliant on her sister and girlfriend for support. The ‘C’ word – so neat a phrase, yet such devastating an impact, reflects the importance of language and terminology and how that can (for some) change over time. From her not being able to say the word ‘cancer’, Nav has expanded beyond initial hesitancy around her language and now talks openly not only about the cancer itself, but also around the significant moments of emotional trauma that it has had on her life. As such, Nav can now easily and viscerally share those pin sharp recollections of situations where she has found herself having to present an exterior façade of resolve, whilst inside feeling the wrench of opportunities lost and the need to adjust to a different life than expected. But we must be conscious that this change of perspective, of self-reflection and honesty, isn’t something we should expect, or demand, from patients we speak to. Everyone’s journey is different as is everyone’s capability to express it. So, how does Nav’s story help us to improve the way we talk to other patients … other people. For us, it reinforces the idea that no one person’s experiences will be the same as another, even down to the terminology each person chooses to use. Making sure we reflect what words patients use and what they feel comfortable with is important – we need to be led by the patient in this regard in order that they feel comfortable. The role that Nav’s loved ones played, has been (and continues to be) critical, reflecting the importance of our continued commitment to speak to those around patients to make sure we understand the full story. Capturing the experiences of loved ones, diving into their own emotions and challenges they face, adds further depth, and takes the story of the ‘ripple effect’ caused by cancer even further. For example, how did Nav’s sister feel when she had to deliver the news of Nav’s diagnosis to their parents? What impact did that have on their relationship? Finally, we should perhaps be vigilant of the need to be conscious of our own language and tone either when speaking directly to patients or reporting their experiences, reflecting on the situation where Nav’s Consultant was called out for framing a permanent colostomy as ‘unfortunate’. Avoiding judgement, or pre-empting what we think a patient would or even should feel positively or negatively about in relation to their own, very personal experience, is not only respectful, but empowers patients to share what matters most to them, their authentic patient story. We would like to thank Nav once again for taking part in this discussion as part of the ‘Patient Voice’ initiative, from Patient Panorama. Apply Now!