Hello everyone! My name is Roshaine Wijayatunga, Senior Editor for Oncology at Future Science Group. I’m very excited to say that we are here at the 20th World Congress on Gastrointestinal Cancer (ESMO-WCGI) (Barcelona, Spain, 20–23 June 2018) with Barbara Moss, a Patient Ambassador for Europacolon (UK) and Bowel Cancer UK. At the age of 52, in 2006, Barbara was diagnosed with Stage IV colorectal cancer of the colon, spread to the liver, and was told she had 3–5 months to live. Barbara is now an active campaigner and an active member of several organizations in the UK and Europe. Her main wish is for patients to be able to access the medicine that they need, to have choices clearly explained and to be treated personally.
Hi Barbara, thank you so much for talking with us today and giving us an amazing opportunity to find out more about you, and hear your story.
I’ve always thought about myself as just a very ordinary person. I was teaching, and actually this was a time of my life when everything was just right. I had a wonderful job in two schools in Worcester, I was married, happily, with two sons – they were doing well, they were going out to university, starting their first job – so nothing could have been better really.
Right, there’s a lot in that. Going back, 6 years before 2006, I did have all the symptoms of bowel cancer, and I went straight away to my doctor to be checked up, but I was misdiagnosed and was told I had hemorrhoids. We celebrated and we felt really great, because I thought, ‘well this is normal and it didn’t need to be treated’, – I could live with that. So it was over those 6 years, towards the end, I started to feel really tired and I started to exercise, thinking, I’m getting older, let’s do a bit, but I was just getting more and more tired, rather than fitter. I went back to my doctor three times, and again was misdiagnosed three times! Following up on your questions, yes, I think, of course, patients must act on their symptoms. They really should follow-up; because, colon cancer, colorectal cancer is curable, if it’s caught early, without too much risk at all. You’d be in hospital and out in a few days, so, any concerns, any worries, definitely, people should go and get checked straight away – and given the opportunity of screening, just take it.
It was just a blow. A complete blow. Although, I’ve explained to you, I did fear I had cancer, I had been told all along that I hadn’t, so it wasn’t until I was so anemic with a red blood count of six, that I was sent to A&E for a blood transfusion. I had to wait a full day, and I could hardly sit on the chair. That was a dreadful day. I said to Mark, ‘Go to work,’ and he came back from work and I was still sitting on the chair. It was the middle of the night when I was really looked at in a corridor, behind a curtain, and then I was told that I might not be going back to work, and it hits you. That’s when it really hit me, because I was almost saying, I can have the CT scan – it was a Friday, then go back to work. I was waiting for the scan, and I thought I could go back to work and come back for the scan, but I was told that I might have to wait longer for my scan if I go home, so just from that point, it was a cut off from having worked the day before – it was complete shock.
Well, it was later on that night, when I was put into a bed and Mark asked, ‘What’s the prognosis?’ and he said there’s no chance, 3 months, and so this developed into more and more of – you can just imagine! Mark nearly fell off his chair, and then what was really the worst for me was imagining him telling my two sons and how difficult that must have been for him, and I think, I can just re-live it now.
You’re talking about my poem. It was when Mark went home, I was on my own and I started to just think – I don’t know – I didn’t look for positivity, it was just how I felt. I felt I was lucky, I felt I’d had a good life, and that there was nothing that couldn’t be continued with the family without me. But, they were the ones I was concerned for, because when someone dies, they are left bereft and they have that hole, that vacuum in their lives, and so that’s really, the way they thought. Then when you think, 3 months – that’s not long at all! If you think back – ‘what have I done in the last 3 months’ – it’s not long! I wanted to leave something so I wrote a letter to each one of them personally and how I’d imagine them getting married, and their children, and getting their degrees, and just for them to know I’d be there in spirit – and then I was there in reality when it happened because I am alive!
Incredibly important. The family came together and I just got so much strength from that and really what it brings home to you is, ’How do people manage if they don’t have that?’, because that just helped me so much, you know the feeling of love, that warmth, the arms around you, the care. I just think for the people who haven’t got it ….
This made all the difference. Because from first, a feeling of nothing we can do, only palliative, to if there’s a chance, if this happens we can do that, it gave me a target and something to work for. It was the gastroenterologist who attended the MDT and we were just so lucky that that 1 in 4 weeks was the week when the surgeon from Birmingham would attend that meeting. He was the one who from that point gave us the strength to go on.
I’m not a person who likes too much attention focused on herself, and although, when I have strong views I express them, (I’m that sort of person), I don’t like being fussed over on the other hand. I felt a bit fussed over, the family gave me attention and they’d come to visit me and they wouldn’t know what to say. I found that I was trying to cheer them up, so it was very odd. You’d sit there, and everyone would be attending to you. The nurses would be attending to you, family would be there sitting beside me, and I just felt I wasn’t worth that.
It was quite a saga because, it was planned that I’d have my first chemo after Christmas, so Christmas could be normal for the family, but the PICC line would be put in, so that I would be ready to go straight into it, the 2nd of January, as soon as the chemo centers were functioning again. So I went in for my PICC and I had an allergic reaction to it, and a raging temperature and I had to go to hospital again, always the middle of the night when it happens – Mark would have to get up and take me. The A&E was always quite a way away in Cheltenham – it wasn’t the local hospital – so we’d have to go there, and I was in there over Christmas. It was not quite as planned but they allowed me to go home for Christmas day. I had planned to cook that Christmas, a special Jamie Oliver recipe with the turkey and so on, and do you know, Mark, Jevan and Aidan our two sons, they cooked the whole meal for me, and they had the music and the decorations. There are other things I can say about that Christmas, because I tried to keep it normal, (and this is before I went into hospital). Every year, we’ve always brought an extra piece of decoration, and I wanted to do this the same and when I was buying this beautiful tinsel that we found that year, I was thinking, ‘I won’t be here next year to see this’, and these sort of thoughts, when you look at clothes, you think, ‘is it worth spending the money,’ but yes, it was a lovely Christmas and Mark took me back at the end of the day.
Yes, from being independent, you are suddenly helpless. You have to be cared for, you have to be taken to hospital. I know some people have to do it on their own. So there’s always the consideration/the understanding of how difficult it must be for them, but I didn’t have that. I was really cared for by my family and so I did feel a nuisance – that life was suddenly for all of them, not just myself, revolving around me. Mark would have to take time off work to take me to my appointments and I had at least three appointments every week because between every chemo, there was a blood transfusion and after your chemo, you had to go back to have the 5-FU bottle removed, which had to last 3days. Then there would be other problems, I’d have sickness and have to go in, so, so many visits to hospital and having to take time off work. And so I was an absolute nuisance!
I can actually tell you about another lady who I met in the hospice, her name was Deidre. She was a volunteer and came to help me initially and then she was diagnosed with cancer. When I sat beside her, she said, ‘I’m not going to have any treatment,’ and I said, ‘Why not? Come on Deidre, be positive, come on!’ And she said, ‘My son took me around Tesco and I just saw the look on his face and what he was going through and I thought, I don’t want him to have to suffer that,’ and these are the experiences that you learn. She has a right to do what she wants, to have or to refuse treatment as she wants, but you do learn these things which people don’t realize.
The hospice was a fantastic place for all of us and as soon as you entered the building, you just felt love – it was tangible. It was a happy place – you wouldn’t think that, people are dying in there every day! But it is a happy place, and it’s a strange thing, because cancer gave me peace of mind. I’d never experienced such peace of mind before. We did talk about all sorts of things, and that’s why it’s such a useful medium, to be able to talk to other patients who are going through what you’re going through, because we all understand one another, and so it was completely open. We talked about coffins – the coffin we’d have, and the funeral we’d have. I planned my funeral – the songs, the music, the prayers. I can tell you about a few people individually. Deborah who I met there, she wanted a cardboard coffin with poppies and then I saw her in it at her funeral. Donna who wanted to be drawn through the little village she lived in, in a little pony-drawn glass chariot, and then we were there. She wanted balloons – each one of us had to lift a balloon into the sky for her. Then Liz who right at the end of her life, desperately wanted my book and to read my book, and so I specially went into the hospice to take it to her and I thought, ‘Gosh, actually you’re not going to be able to read this, but you wanted it,’ so I did that for her, and these are the things that we talked about.
Yes, it was over a period of a few months, and this was back in 2006 we’re talking about, I know things have changed now. There were two main types of chemotherapy. I was given the first – the usual one, oxaliplatin+5-Fu and I really felt I was getting better. But after the four treatments, I was shocked to find out it had gone worse. I now had a 15cm tumor in my left liver and I was shocked to be told I had to have the other chemotherapy, because actually, those were the only two things at the time available on the NHS. That was standard practice.
There were a lot of concerns. I believed, I was thinking very, very positively, and I believed the tumor had shrunk, so when I was told the chemotherapy hadn’t worked, I was shocked. And they would have to change it. I was now put on irinotecan – the only other option available on the NHS. Yes, I had to go and get my wig and so on to be prepared. Then my surgeon had said that if that tumor had shrunk, he was prepared to operate and it would be the entire left liver lobe, which now had this 15cm tumor, and also the entire ascending colon. When my stomach started to swell, there was a blockage that the tumor in my colon was blocking, and I was worried, because I knew if this happened, it was an emergency. I was in hospital and they might have to operate. It’s quite a funny incident and very personal because I was put into the ward and by, I think it was the next day, my bowels opened and I was in a shared room of four ladies and I just sang ‘Alleluia’ at the top of my voice and I think everyone knew exactly what had happened.
The tumor was one large solid tumor in my liver in the left liver lobe and it was much too close to the portal vein. There had to be a clearance of 2 clear mm for them to be able to operate. The rest of the lobe they had planned to take away. So that was the critical factor – that it wasn’t sufficiently away from the portal vein, so I had to wait longer.
I think we always just looked at things one step at a time and that was very, very important. Not to think well, ‘when that happens, or this, or that,’ but it was just one step at a time, all the way along. The strange thing about my cancer journey was that I did have total peace of mind and I’ve never really experienced that before or after. I tried to gain it back, but I had total peace of mind and I felt that life could go on with the family without me. It wouldn’t be the same, but they were all in a position where they could cope, and so that helped me a lot. Though I accepted the disease, it wasn’t anybody’s fault, I was told it wasn’t my fault – but it didn’t mean giving up. We just took it as it came.
When the effects of the chemotherapy was diminishing, I felt that I was on a losing slope because I was getting more and more tired, the side-effects were building up and I’d felt that maybe I wouldn’t be able to continue and there was nothing else. We then read about things that were being done in Europe and in America and asked about them and I was told, ‘Yes, but they weren’t available on the NHS’. We tried to appeal and so on, ask the primary care trust … and they still refused me, so we decided to pay for it. My surgeon as well as my oncologist were very, very helpful and my surgeon said that if that tumor would shrink away from the portal vein, which is where the clearance had to be, that he would operate, so we had a target. Maybe having this new medicine would be helpful. We were quite keen on being able to access it and we decided in the end to pay for it ourselves.
Well, Mark and I used to try and take little breaks in between chemo and we were actually in – I’m trying to remember the name of the place but I just can’t remember it – but we weren’t that far from home – we were always within 1-hour journey back from home. But we were on a campsite. We got that phone call and he said yes, he said, now is the time, we have taken the x-ray … and we just celebrated! Mark played music – he plays the guitar – and was singing, and people could hear us across the field. It was really, really a lovely time. It was important to wait the 6 weeks because all of your system has to go back to normal and your strength has to build up again from the chemo – the effects of the chemo have to lessen.
Yes. I was told very, very clearly – the risk was high that I wouldn’t come out of it. But yet, I was so happy to have the chance because I really didn’t want to carry on forever, and I was thinking that I don’t want to be a burden on the family. I accepted what was happening to me, but I wanted to go for it – for the operation, but I was told very clearly that I might not come out. It would involve two complete teams of surgeons – the gastroenterologist and then liver surgeon – so it was like two separate operations, one after the other, but even though I knew that this might be the last few minutes of my life as I went in, I accepted that and I thought – ‘lucky to have that chance’.
It’s a strange thing, because my wonderful surgeon, he said I’m the only person who’s had a smile on my face all the way through the operation. Yes, I was really happy to have that chance. I felt lucky.
I imagine my senses were heightened by the morphine. I had this morphine pump that I could operate myself – but they wouldn’t let you overdose on it. So, I imagine some of it was because I was on morphine, and in that intensive care ward, once I’d come out of that operation, I was fighting for my life. In my mind there was that – when you don’t want to give up, you don’t want to lose. I didn’t want anything to get in my way. I could see the nurses in the opposite bed cleaning the wall and I overheard their conversation, because I think with the morphine it enhances your senses, and they were talking about what they were doing and that they had a patient there with MRSA and I thought, ‘I’m not staying here!’ – I was absolutely wanting to survive, so in fact, they moved me out of the ward, out of the intensive care, because I wasn’t happy to be there, and so that really is the story.
Well, I had a blockage, and my bowels weren’t functioning and so my stomach inflated, and I really felt I was going to burst! And it was rock hard and huge! I had stitches – 50 staples – across the cut, across my chest – it went all the way from the right hand side to the left hand side entirely and I thought if this expands anymore – because it was hard – I’m going to burst. I was more concerned about the clips popping out than even the pain, or anything else. I really wanted that operation to be a success, and so I was really, really worried.
It was Christmas time again and I remember there was a special Doctor Who program on. Our two sons were there watching with Mark and I didn’t want to disturb them, but I could feel this lump just as though expanding in my throat. After the program I spoke about this and I wanted it to be checked and I phoned up. I was told, ‘Don’t worry about it,’ but I insisted on a check-up and it was out of hours. I just went into the hospital on my own the next morning – I didn’t have an appointment, because Mark and I had planned a 4-week trip around France, and this was just 3 days before now! At the hospital they did test it and it was found that the cancer had returned in my lymph and my oncologist did say to go away for 2 weeks if you like and then they would start treating afterwards, but I don’t know really how I can describe it, but I was fighting for survival and I felt that emotion – that I didn’t want anything to come between and I didn’t want the risk of delaying, and so I wanted the treatment straightaway.
Well, I had been asked several times at St Richards Hospice, and they were such wonderful people, I had talked to them, and they said, ‘what about writing about your story? Write it down!’ because they knew I had been an English teacher and I thought, ‘I haven’t done this yet!’ – there was this feeling of guilt. I thought, ‘I must write about this now’. I wanted to give back something to the people who’d helped me – Bowel Cancer UK – who’d been fantastic in helping me through my appeals, in trying to get the medicines that I needed, the hospice who’d always cared for me – it’s such a wonderful place, meeting other people – it’s not a sad place at all – it’s a very calm, peaceful, wonderful place, where you have complete peace of mind. So I wanted to give back really, and so that was the next step – I wanted to write.
Yes, because I needed a private drug to be added to my usual regimen, I asked for it and I was refused. Then Bowel Cancer UK helped me to appeal for it, and we actually took it to the panel. I attended the hearing, I spoke personally. They refused me the medicine and we had to pay for it, so these are all worries – cancer doesn’t wait for decisions like that. You have to act. My mum paid for half the treatment. At that time you lost all your treatment if you wanted one private drug added so it was a big decision and it was going to cost several thousands of pounds, and I thought I wasn’t worth it – leave money for the family, for the people who are living, but they all wanted me to have it. It was a big decision and we decided to pay, but my thoughts are, what about other patients, what about those people who can’t find the money – we had to find the money – but what about the people who can’t? We have to have a fair system.
My concern was for fairness, as I think I have already expressed, and equal treatment. It wasn’t just the money side of it, it was the fight for it and the fairness for it and expressing your views, and I actually attended the hearing when they decided –they didn’t tell me on the spot that I wouldn’t have funding for this drug, they told me later on, but I was able to stand there and express my viewpoint – (nonetheless, I felt it hadn’t been listened to) – but at least I had done it. There is something in that, because you can go away with your thoughts, and you can talk about them later on, and you can express your views politically and openly to the system, because you’ve gone through it and experienced it and you can try to make it fairer.
Certainly all patients like myself who can relate to their experiences in order to help others, and to make a fairer system – that’s what Bowel Cancer UK and EuropaColon do – they try to gain access to drugs to make a fairer system to help patients in that situation, to look at the legal system, to try to make it right, and with EuropaColon, it’s across Europe. It just varies so tremendously from one country to another – the access to drugs, the treatment of patients, so it helped me to express my feelings to become involved, and it also helped me to give back something – it was a medium through which, I could give back all the help that had been given to me, and they’d helped me. So, to me, it’s not just access to drugs, it’s raising awareness, it’s helping people to live healthier lives, it’s helping people to ask for what they want and to express their own views and not just be told what to accept – you do have a choice and to help save lives in the end – that’s what you’re doing.
There have been ups and downs. The NHS have been wonderful. Once you’re in the system – I’ve been looked after very, very well. I’ve had regular check-ups, and when I’ve had concerns, they’ve answered my questions, my doctors have all been fantastic. The ups and downs have been with my tumor markers, which have been worrying at times, and in fact, I did have the one recurrence that we talked about already, so there are stressful times. At the beginning it was always stressful, waiting for results to see whether your tumor marker was still within normal range or not, but from the beginning I was told that my chances were – the cancer would return and I always asked the question – ‘How long?’ and it was ‘Within 3 years’. That was quite a threshold for me to get over those 3 years, and then I started not to worry so much, because I actually thought, ‘Well, I’ve actually had 3 years, I’m now very lucky!’ Even if something happens, you can’t stop worrying of course, but I’ve been lucky, so you look at the positive side. Two years ago, maybe 3 years ago now, my tumor markers did rise consecutively into abnormal – and I was very worried and being a patient within patient groups, such as EuropaColon and Bowel Cancer UK, I knew what to do, and this is what we try to advise other patients – that is – to really insist on having all those checks. I had all the checks possible and they all came out clear. And now for the first time in 2 years, my tumor marker – called a CEA for bowel cancer/colon cancer has gone back to normal. It’s great! And these are the things that perhaps other people don’t realize – there are stressful times.
Really, I felt that I had so much help given to me that I wanted to give something back and I have to do it, and I feel I have to do that. I’m heavily involved in advocacy. I’m a patient ambassador for EuropaColon, and also for Bowel Cancer UK. I’ve done work for EMA and for NICE as well during licensing of drugs and discussions on that, I’m a patient advocate for Inspire2Live, which is a Dutch organization, I’ve done a lot of work for the EORTC on some of their projects, I also work for the company called S:CORT and a subgroup of that is a public patient involvement engagement consortium which we are involved in. I’ve also done work with the Structural Genomics Consortium (SGC) which is a genomic consortium in Oxford, and European Access to Patient Medicines and personally asked to comment and speak for various organizations including pharmaceutical companies from time to time. Really, I’m very happy to be involved in such a way, in order to help other patients gain access to the drugs that they need and the right treatment.
I think every patient is an individual. I think everyone has personal needs and everyone should be considered as a person and so when you go to your doctor, there is not just one treatment to fit everybody and that is being discovered more, and more and more today. Colorectal cancer is just not one disease. You don’t just have that. There are so many different types of it and so many different treatments and then your body is working against it as well, against that treatment, trying to stop it working – it’s so odd to imagine. The main thing is for patients to be able to express their own needs, and to be looked after as an individual and for the doctor to look at them and see what that patient needs. Some patients want treatment, some patients don’t want treatment and every wish should be inspected. I remember Dr Kate Granger who started her campaign #Hellomynameis – and I always refer to her – ‘Doctor, please look at me, I’m a person’. These are what patient groups also try to address in the system so that the patients can get the treatment and in the end we will save money through doing that because the diagnosis, awareness, healthy eating, exercise, I’m sure I’m missing out a ton of things, but every single factor is important. We should be responsible as people, to lead healthy lives, but every case of cancer can’t be put down to – the person hasn’t done that, whatever. If the person falls into that category where they’re unfortunate and they are ill, we must take care of them! We have responsibilities to do that and the patient organzsations help the patients to do that.
Well thank you very much Barbara for talking to us and for telling us your story. We really appreciate it and it was wonderful to spend some time with you! I wish you all the very best for the rest of the conference and the masterclass, and all your other plans this year. Thank you very much!
Thank you very much Roshaine, it’s been a pleasure sharing my story with you.
The opinions expressed in this interview are those of the interviewee and do not necessarily reflect the views of Future Medicine Ltd.