Episode 7 - Real life treatment struggles - Ali Stripling: täielik transkriptsioon

Ali Stripling: where things were starting to change but I put it down to other things that were happening in my life. Steve Pointon: medication, the food changes, etc. etc. So a bit of a mixed up time I guess if I was to put it quite simply. Ali Stripling: Yeah, you're right Steve. think sometimes it's really easy to go, I'll do all this next week. I'll leave it another week I'm sure it's fine. Maybe if I don't eat soya, maybe if I don't eat peanuts, maybe if I don't have dairy, maybe it's stress. I've had IBS when I was younger and I was having quite a stressful time at work. ⁓ Steve Pointon: But I sense if you've got a broken bone, especially your leg, mobility is the you've got that's real, isn't it, at that point when you can't get around as you normally would. And that the focus of how quickly I can get back to walking around. And I guess the you said I was quite healthy and et cetera, et cetera. Ali Stripling: Mm. Steve Pointon: I guess what I'm hearing is if you could focus on the getting back mobile then everything else should follow in theory Ali Stripling: Yeah and I happened was that I started to accept it as like a new normal and I know we hear that especially a lot after cancer what your new normal is but during that time you know I fractured my ankle ⁓ and months went on I went on holiday with my best friend and I that I couldn't leave the apartment until I'd had two bowel movements in the morning. I suddenly started accepting that, Steve Pointon: Accepting Ali Stripling: And then on the last day of holiday, I had this 24 hours sickness, like really ill, like both ends. I felt like I was dying and I don't know how my best friend got me on the plane really. But again, I came back and I still continue to ignore symptoms. Steve Pointon: So how long did that go before you sort of decided I need to do something about this Ali Stripling: I mean, realistically, I now know that I probably had symptoms from the April and I didn't go to the GP until mid-September. Steve Pointon: Okay. what happened when you went to the GP? ⁓ Ali Stripling: So they did, we had a conversation, we did bloods, we did a stool sample and I got put on the urgent two week pathway for a colonoscopy. Steve Pointon: We had a conversation, we did blood, we did a stool sample and I got put on the urgent two week pathway for a colonoscopy. Ali Stripling: So we got in the car to go to my colonoscopy on a Saturday and just said to my husband, well, someone's gonna get bad news today. There was no way it was gonna be me. I thought I was probably celiac, ⁓ ⁓ colitis. I had no idea. I didn't think it was gonna be cancer whatsoever. And off we went and we had the colonoscopy and ⁓ after ⁓ you know, called my husband. was told that I was ready to be collected but I'd already overheard a conversation between the doctor and the nurse whilst I was waiting on the ward coming around from the gas and air and hoping they weren't talking about me. They ⁓ us a side room and told us that it was cancer. at that time I was told that I was likely to have a stoma that they would use surgery to remove the tumour and then we were sent away you know told that someone would reach out with next steps and yeah mean I can feel it now actually that's still that real sort of shell shock moment ⁓ you know and I'm sure what your experience was like Steve but It was a very brief conversation. You know, we heard the word cancer twice, the need for an operation, maybe such as chemotherapy and radiotherapy. And then ⁓ we left. Steve Pointon: Yeah, I mean, you're right. It's a surreal moment, isn't it? I was an inpatient at the time when I had my diagnosis, checking for something completely different and it was found by mistake. But you are right. There was suddenly felt like 100 people in the room that I was in. reality, there was probably about five. ⁓ get told you've got a tumor. ⁓ told a little bit more information, but in honesty, you stop listening. Once you hear you've got the tumor and you're to work out what that even means. Ali Stripling: Yeah. Steve Pointon: I was fortunately left with a CNS at the end of the bed at the time that then explained it a little bit but yeah it's a very hard moment of your life isn't it one that I don't think could ever be replicated by anything. Ali Stripling: Yeah, I think it was my dad's 80th birthday so luckily they were on a cruise. So I came home and I had like, I'm very open and honest and I've been sharing a bit of my journey on LinkedIn, which is my chosen social media channel. And I'd shared that I had to have a colonoscopy and showed a picture of the stuff you need to take in preparation. for it. I thought, you know, sorry for swearing but shit, know, now I need to decide on how I follow up on this ⁓ telling my parents until they got back from holiday because what's, you know, what's the point of telling them? ⁓ absolutely nothing that they can do. And, know, then telling my best friend and just crying and then spending the whole time crying with my husband and then going, well... We don't even know yet what type of cancer or what stage, you know, and you have so many unknowns in my situation because we were just understanding, we were just at home, you know. Steve Pointon: must have been really difficult to ⁓ be sent home with information. ⁓ As said, ⁓ not type, so you can't do any research. I mean, I would never advocate Dr. Google anyway, straight from a diagnosis, but ⁓ at least can start looking, can't you, if you've got some information, but ⁓ that must been quite tough. ⁓ Ali Stripling: Yeah, yeah, it was quite tough. all credit, I mean, I've got a huge amount of praise and time for the NHS. So they've saved my life, but you know, what happened next was kind of, it feels almost now ⁓ like a in terms of, ⁓ so that the 19th of October. So we had the colonoscopy. I've been informed that it's cancer. I then have to have ⁓ an MRI and ⁓ CT scan, scheduled on Saturdays, you know they're so

overwhelmed right, so ⁓ really bizarre situation ⁓ those two scans ⁓ had ⁓ rang me and to me ⁓ that cancer was HPV related it was anal cancer, not Colon cancer. And they really labored this point. And I was kind of like, okay, you know, what does that mean? And the next step is to have a CPET scan. And that will help us understand the staging, which obviously, know, at this point, you don't know what any of this means, right? So I'm like, okay, so ⁓ what does mean? And she was like, well, you know, how big the tumor is and whether the cancer spread. the thing with anal cancer is that predominantly they go through the same treatment plan. It hasn't changed for numerous years because it is highly effective, which is a good, it's like, it's a rare cancer. but it's, I wouldn't say it was easy to treat, the chances of going into remission are very positive. The survival rates, I think, for where I am is 60, 40 for five years. So then we went through this kind of going through scans and then waiting and... Again, looking back and reflection, all happened very quickly. You you have to wait a certain amount of time for the scan results to come back and for someone to review them. You can't certain scans really close together as I understand it as well. And so after CPET scan, was informed that I was stage three, which means that had spread to my lymph in both my pelvis and groin no further, which is really, you know, again, when you get to this position, you meet other ⁓ survivors and you talk about what stage you are. And I'm like, ⁓ I'm really grateful that it was just stage three ⁓ in lymph And at the time, this is very naive of me, when people say like in your lymph nodes, I was like, ⁓ so it's in an A lymph node in my groin and in my pelvis, not realizing that it's in nodes. And you've got hundreds of them throughout your body. that's not a great sign, I know I'm smiling through it, I find that sort of part of my coping mechanism is just ⁓ to smile to try and normalise this because other people will go through it and it feels terrifying. Steve Pointon: right isn't it when you first get all this information it's it's heavy, don't... it's word soup isn't it? What does that word mean? And even I I was told I've got a tumour, I didn't know what a tumour mean. Is that cancerous? Is it not cancerous? And ⁓ you said an abbreviation there I believe of and you mentioned when we were preparing for this that it wasn't the first you'd heard that you'd had something as a young... when you were younger. Ali Stripling: Yeah. Yeah, yeah, thanks, yeah. So when I was 27, had cervical, ⁓ removed from my cervix and were precancerous and HPV was present. So HPV, the human papillomia virus, is something that affects 90 % of adults. At some point, ⁓ if had sexual intimacy, which is skin on skin contact, with another human being, it's likely at some point you've had HPV and normally our bodies can flush that out. And there's lots of different variants of HPV as well and it

can just go completely unnoticed, doesn't do any harm, unfortunately for some people ⁓ can cause cancers. so there's like six cancers that are related to HPV but mostly we associate HPV with cervical cancer and recent years they've launched ⁓ a vaccine ⁓ and really ⁓ having positive impact on lowering rates in cervical cancer. Not necessarily much research on the other five cancers associated with HPV. Steve Pointon: for that background. How you process this? When you got told that we talked it was tough, how did you process it? ⁓ Were offered any sort of mental health support? What was to you? Ali Stripling: I don't think so. I think at that time... I had to get my head round. I had again this sort of like naivety isn't there before you go through something like that. It's like the word anal makes people uncomfortable or some people uncomfortable. Talking about HPV makes some people uncomfortable. There's a little bit sometimes it feels so weird. was a little bit like, oh, this cancer is okay to have, but this cancer, so sure about it. So that was really interesting because I'm not somebody to stay quiet. and I'm not someone who feels that I need to make other people feel comfortable. So I'm very happy using the term anal cancer because it's just another body part. You've got an anus, I've got an anus and you can get cancers in your anus. know, we need to be able to talk about that. The focus was on treatment. So after the confirmation of my diagnosis and my stage and what had caused the cancer, the focus really shifted to this is how we're going to treat it and then moving to you know the with an oncologist and meeting the team, meeting the chemotherapy nurse, having the planning meeting for radiotherapy. And at that time, so I'd left my employer in the September thinking that I was going to become a menopause wellness coach qualifying. And all of that went out of the window really, really quickly. mean, I suddenly, you know, situation with my bowels rapidly was deteriorating. So symptoms that I was experiencing was worsening really quickly by then. So my, always really interesting, they're not so sure about how quickly HPV cancers develop. ⁓ some estimates that it can take approximately like 10 years ⁓ then there's other evidence out there about tumor growth can be really quick. There's lots of misinformation and it's really hard to understand what happened but for me personally I noticed the run-up to that diagnosis I was really craving I was eating like family bars of chocolate like sneaking them in and so ⁓ because my was basically just up my bottom ⁓ and was about size of a 10 pence piece by the time I went for treatment and so it was the exit. So my symptoms were like an urgent need to use the bathroom. had got really small, often diarrhea based. that meant that obviously leaving the house became quite challenging because I could suddenly ⁓ need the loo, like running up the stairs to go to the bathroom. And when I got to that point of understanding the treatment plan, ⁓ I ready. Like I needed treatment to start because it had started to impact my life. ⁓ Steve Pointon: Okay, so before we come on to the actual treatment, you talked about leaving your job there. How did that affect financially? Were you able to access the benefits system? And I know we'll probably open a whole can of worms if we talk about the benefits system, which I'm good to do, because I'm not a fan of it, ⁓ you will have heard if you've listened to this before. ⁓ how did that affect? Ali Stripling: Mmm. Yeah, yeah. I mean, I didn't. I mean, I was in a fortunate situation because I was preparing myself to become a freelancer, an independent individual running what I hope is going to be my own wellness clinic. I had saved significantly. So we're in a fortunate position. We don't have a mortgage to pay for. and so at that time and again quite naively didn't know I didn't understand I didn't anticipate the long-term impacts ⁓ couldn't see ahead of where we were so I didn't access benefits I found after and you when you know I felt like I was back in the world so to speak you we might resonate with but ⁓ That became a challenge then, you know, because I was suddenly like, what am I going to do? know, I don't... And it was really hard. There's so much you need to do to get yourself through treatment that you can't... For me anyway, I couldn't focus on anything else. It just felt like this is the mountain that I now have to climb and I've got no choice. Steve Pointon: Yeah. Ali Stripling: Like this is it, this is where my absolute priority has to be. Yeah, and then everything else, you know, you just, for me, we just pushed it to one side, my husband stopped working on the house because, know, I couldn't live there, we lost one of our just like in between the planning sessions for radiotherapy so suddenly had this grief to go through as well it was just awful I can't imagine that there's nobody there I mean even just sorry because now I feel like I'm ranting a bit but remember being just even at the meeting with the oncologist to talk through the treatment plan and feels abrasive You know, like you get told to prepare with questions and then you get in the room and it's really hard to self advocate because, well for me anyway, I felt like, you know, my husband was there, we make notes, we had a book, you know, someone said like, take a notebook with you, put all your questions in and... Steve Pointon: Thanks. Hmm. you Ali Stripling: And we'd come out going, what was that? she say that? Is that what your interpretation was? It's almost like this, you're suddenly in this storm ⁓ information about your health and the journey that you're going through. And you to select what you can focus on to ⁓ put in a best place of survival. Steve Pointon: Thanks. Yeah there's a definite power dynamic isn't there when you're in that room with your oncologist and you're the one that's looking at them going well fix me but then your

sort of or needs massively into consideration and I know you but I'm a member of the board of the International Kidney Cancer Coalition and I was at the European Urology Association conference a couple of weeks ago and I was invited as a speaker on a panel about shared decision-making and how important that is the patient to level out that power imbalance and look we're never going to know as much as the oncologist knows and don't really want to but ⁓ it least gives you a voice of what's important to you and I'm your treatment quite specific to get over what it is with ⁓ with your anal but some cancers ⁓ there's treatment options there may well be in your case and some people at different stages of life ⁓ actually what I'd rather quality of life than go through the hell that chemo and radiotherapy can can cast on you. I think something does to be done and it is in some cancers and with some oncologists about giving that patient voice a bit more early on. Ali Stripling: Mm. Mm. just, think for me, if I look back and say what would be more helpful, it's kind of, it's having someone maybe to sit with you afterwards so you go in and see the oncologist and they, you know, ⁓ I it, the NHS is swamped. It's completely swamped. ⁓ They do amazing but there's that bit with the human connection. You're taking in so much information, even if it was just a follow-up call where somebody says, after three days of an oncology appointment, no matter where you are in that process, if you're in life in remission beyond cancer, now when I see ⁓ from the oncology department, I walk away ⁓ was good news, right? And there's nothing to worry about. He did say August, yeah, for my next checkup. So at time when you're going still through diagnosis and agreeing the treatment plan. It's a lot. so overwhelming because at the same time ⁓ not in this little bubble. ⁓ lots of people making ⁓ making demands of you. you know people with the best of intents asking you how are you and what's going to happen next and they're worrying and trying to be like everything's okay there's a treatment plan or in my case everything's okay there's a treatment plan this is what it looks like and then I went on ⁓ so cancer, there's a couple of forums and of them is quite American. and it was Like there's no one in there ⁓ sure that you know what Marjorie is sharing is factually correct and it's her experience right ⁓ it's their journey and they're sharing it and was reading it and I was petrified. I was so horrified about what I was reading in terms ⁓ of impact of the treatment but then also you know what going to happen to ⁓ me physically. We don't even need to talk about the emotional aspect right now but like when I was reading on these forums specifically the treatment for anal cancer and its impacts I was terrified and I was crying to my husband and telling my husband that he needed to read it to get himself prepared for what we were going to go through. Steve Pointon: Yeah, I mean, I can't

imagine how that felt at that time. here where you taught the fear that was there was very real. I think, no disrespect to anybody who hasn't been diagnosed with a cancer, you know what that fear is like until you've faced it. And it is really, really difficult. But if we come to your treatment, you mentioned radiotherapy and I think there's some chemo ⁓ involved. what was the plan and what was the sort of time scales. Ali Stripling: Yeah, so the treatment tends to stay the same for anal cancer no matter what stage you're at. So some people will have before treatment, depending where the cancer is and what the, if they have a tumor or not. ⁓ I fortunate they decided that they were going to try first with chemotherapy and radiotherapy. ⁓ So 28 of chemotherapy, radiotherapy over five and a half weeks. So that's Monday to Friday. I started treatment on the 9th of December, which meant that I went through the Christmas and New Year period. Again, completely amazed at the NHS that I didn't have treatment on Christmas Day and Boxing Day or New Year's Day. But because of that, I had treatment on the Saturdays and Sundays. They're like, you've got to get the five and a half weeks done. there's things like that that get in the way, you come in the next day. And so start off with chemotherapy IV. And I think probably that was, yeah. no words to describe it, is it really? You know, you sat in the chair, this lethal looking injection comes along. It's a specific one type of chemotherapy for anal cancer. It's the only place that it's used. sat there, it takes a long time to be pushed into your body. And then after that I had to go down for my first blast of radiotherapy and then the rest of my chemo was orally twice a day, every day that I had radiotherapy. As I was looking back, so the first day I ended up going to A &E, Steve Pointon: Right here. Ali Stripling: So I got given, I should have put it away but... I got given one of the kind of, I think it's by cancer research, like this kind of treatment plan book. And I had sat down previously with my chemotherapy nurse and she had written loads of notes in there about the chemotherapy that I was going to take, what to do if certain things happened. And one of them is they keep a close monitor on your, or ask you to keep a close monitor on your body temperature, predominantly for sepsis. Because obviously chemo, really impacts your white blood cells it can weaken your immune system which means that you can be more susceptible to things like sepsis and sepsis kills and is also really really scary I don't know whether you came across the whole sepsis conversation and ⁓ experience Steve Pointon: No, not for me, but I've come across sepsis quite a lot in the cancer field. Ali Stripling: Yeah, yeah. so, you know, again, it's just like really. I don't know, it felt like it was being really highlighted to me. So the first day of having my chemo at the hospital, my radiotherapy, I came home and took my temperature before my next lot of chemo. And my temperature was out of the range and they have a hotline, we call the hotline, and the hotline was like, because your temperature's out of range, you need to go to A &E. And I was like, okay, so now we're at nine o'clock at night after a really long day at the hospital. was all I'm now going to A &E. I'm really fortunate. Turned out to be just, you know, my body reacting to a hard day of chemotherapy and radiotherapy day one and nothing to be concerned about. sent me home. I found, you the fact before, I'd say before Boxing Day, the treatment was hard going, you know. I felt poorly, I felt weak, slept a lot, I didn't really ⁓ leave house. I very fortunate to have a loving caring husband that could be by my side and drive me to every radiotherapy session. Boxing Day it got real. It got you know it went from being uncomfortable and pleasant to being this just I felt like the ⁓ know walking dead as it to take effect. was just like kind of on this countdown to treatment finishing but with for me with the anal cancer there's period of recovery as well so the is very effective. But because it's been blitzed at your back everything eat and drink has to exit. And so was extremely painful. I mean, it was horrific. ⁓ And I it challenging to ⁓ eat. So my tablets you have to take with foods, I was taking them with chocolate milk. every bowel movement it would leave me feeling quite faint. I'd back to the to the bed and and I would eat jelly babies. I hear this all the time from people ⁓ who have this like a classic opinion what people should eat on chemotherapy you know I don't whether you've come across this but this whole kind of like ⁓ you know you to be really nutritious when you focus on your diet and don't eat any sugar because sugar means cancer and I'm like ⁓ Have you been on chemotherapy? Because I'm telling you, you eat what you can. Steve Pointon: Well. Well, I was just going to say that. mean, I've heard the way you describe that. mean, first of all, I don't think I've ever heard of chemotherapy and radiotherapy running alongside each other. I normally hear of it one and then another, but that sounds absolute torture to do one alongside the other. And the way you I'm hearing you describe it is almost like I'm in the trench for as long as this takes. I'm in the trench. The bombs are coming in and I'm just dealing with it as they come. Ali Stripling: Yeah. Yeah. Steve Pointon: So yeah, for somebody to say you need to eat this, you need to eat that when the reality of it is gonna do what the hell I like during this because or what I can do ⁓ to eat a jelly baby is stretching it I'm just about managing. So ⁓ ⁓ do what I can. Yeah, I hear the struggle. Ali Stripling: Yeah, I mean it's... I get it because it comes from a place of positive intent. I do understand it, ⁓ it's interesting ⁓ you when you go radiotherapy and obviously like 28 days over five and a half weeks, you spend a lot of time. So again, because I'm

having radiotherapy on what's doing to your pelvis area, have to drink three glasses of water before each radiotherapy session. So you're there for like, ⁓ least 30 minutes because they want your bladder to be full to protect it from the impact of radiotherapy so ⁓ you to know people right because there's other people there that are having more than three ⁓ treatments ⁓ can member speak into the prostate cancer guys and you know and I remember speaking to this one guy they were really lovely couple you know they were going home and eating fish and chips afterwards and they were so envious you know because it's to say that it's not brutal for anyone going through it and I don't want to compare either because I miss this comparison thing that goes on which is again it really surprises me ⁓ but just remember just sitting there in radiotherapy going I would ⁓ so to eat fish and chips right now ⁓ Steve Pointon: Okay. Thank Ali Stripling: would so love that. Yeah. Yeah. Yeah. Steve Pointon: But it's the it's the consequence for you though, isn't it because of the type of cancer as you said It's got to come out somewhere. It's just like I can't think about that Ali Stripling: Yeah and also the key because I was having chemo at the same time the nausea from that just you know it's weird I even I've shared with someone just the other day that there were still things like chamomile tea which I used to drink before I cannot stand and people sent me people sent me they were really generous my friends were amazing and they sent me these really thoughtful gifts but any of them that contained anything that smelt so for like food or Steve Pointon: Yeah. Yeah. Ali Stripling: body lotions and bath things. I was like, Oh God, no, I can't just get it away from me. So it was hard. And my poor husband, there was this one day where I was like, I really want Jaffa cakes. Anything that you can get in sugar wise really quickly to get energy in. And so he bought the like family pack of Jaffa cakes. And I ate like four and then I was like, don't put them anywhere near me. Like I couldn't stand them. I've not had Jaffa cakes since either. But so it is the Steve Pointon: Yeah. Ali Stripling: The treatment was really brutal and I would, towards the end, I'd have to ring radiotherapy and say I can't come unless my appointment's in the afternoon, I can't leave the house because my bowels so erratic and it was so painful. And they were just brilliant. I cannot the people that worked at Royal Berkshire in the cancer ⁓ unit radiotherapy. ⁓ Every single person so kind and so humbling and so respectful as well because again for my radiotherapy you're going in you are getting down to like you're having to take off your underwear know putting on what they deem to be paper knickers which are not really anything you know like it's like a little modesty but like holding up a napkin you know and you have to get onto a table you have to lie there perfectly still your blood is full to bursting ⁓ and count down the minutes till it's over so that you can get off the table, go back and put your clothes on and then get back into the car and go home and then do it all again the next day. Steve Pointon: just relentless, absolutely relentless. Ali Stripling: And I look back and I still feel really fortunate to do it. I always think, oh, it was only, you know, was only 28 days. It was only over five and a half weeks, you know. It is. Steve Pointon: But that's a lifetime when you're in it, isn't it? And I get that when you look at it from outside, you go, yeah, okay, it's five and a half weeks compared to the rest of your life. You'd do it every day and twice on a Sunday, wouldn't you? But when you're in it, it's a lifetime. Ali Stripling: Yeah, I am. Yeah. Yeah, yeah, yeah. And I think there was a moment for me, I'm really grateful for doing the work that I've done. Steve Pointon: you Ali Stripling: become ⁓ a coach you look at aspects of breathing positive mental attitude and at times when it was really bad and painful I would just ⁓ say to this is a moment this is gonna pass this is gonna pass you know when ⁓ breathing through and thinking okay like it will ⁓ I will better this this is gonna end ⁓ you know Steve Pointon: So it did end. just to touch on something you said before or you've alluded to a couple of times, the type of cancer. ⁓ There's lot of stigma, isn't about certain body parts that we have that we don't talk about ⁓ in society ⁓ How did find telling people that you had anal cancer? What was the sort of ⁓ reaction you Ali Stripling: Mmm. Mm. Yeah. Yeah. Yeah. I mean, I don't, the thing is like, ⁓ you feel ashamed ⁓ me ⁓ I've got anal cancer, that is your problem. That's not my problem, that is your problem. If you feel any stigma because I had anal cancer or HPV related cancer, that again is your problem. Steve Pointon: Yeah. ⁓ Ali Stripling: one. But like literally, you know, ⁓ think like, why would you think that you couldn't get anal cancer ⁓ HPV you know, stop the judgment. Like I don't get it. I don't understand it. And I feel really sorry. there's a lot of anal cancer predominantly been diagnosed late on in life for women. So about a thousand, one thousand to 1,500 women or individuals will get diagnosed with anal cancer this year in the UK. So it's a rare cancer. do really good anal cancer online community forum. It's brilliant. When I found it, it was like a sense of relief for me. ⁓ Steve Pointon: Better than the American one. Ali Stripling: better than the American one because you know like Macmillan Care right and they are on it facilitating it know so you ⁓ know any posts that are ridiculous they get removed and so it's moderated so it felt much more reassuring and like a safe place to be and and ⁓ so was like a my safety ⁓ every you know I was either on there sharing or reading I was Mrs Badass that was ham all aim on there so I always try to bring a bit of humour to it but on there there were this age

range is the age range is changing and you know but you have women in their 60s 70s being diagnosed with anal cancer and then I was thinking imagine that you know you're telling your potentially your grandkids yeah Nana's got cancer where's she got it? She's got it up her bum you know well yeah you know you can have cancer in your blood in your breast in your bones in your Why should your butt be any different? It's bizarre to me. And then again, if you talk about anal cancer and you'll get this when you share this podcast on your normal channels, it will say explicit content because we use the word anal throughout. I understand that because there are other connotations in the way that anal is used. wouldn't be the same if we were talking about cervix or cervical cancer so you know and yeah people's reactions like i got pretty pissy ⁓ i had this like in my head the people that are allowed to cry about my diagnosis is me Steve Pointon: Yeah. Ali Stripling: my husband, my best friend, and maybe my parents, but probably not with me, if that makes sense. Like I wanted to keep a circle tight of like positivity. So when you tell people you've got cancer, I found it much easier in the end, just did this social media post. Cause I was just like so over having to deal with other people's reactions to having a cancer diagnosis. Like, I can't deal with you being upset for me right now. ⁓ Does that sound really awful that I felt that way? I was like, I can try. Steve Pointon: Now, now I hear it, hear it. Ali Stripling: Yeah, you're trying to sustain yourself. Like you don't need anyone crying on you. I've got it's you know, this is not the time to be crying. This is the time to be I like the term I started using on social media is like rooting into him. You know, like, be positive for me, you know, and then you have the people who are religious and faith based, saying prayers for you. I am an atheist. But I really did appreciate those people who said I'm going to keep you in my prayers and my thoughts. Like, how amazing is that that there's this really loving side of people who don't know you but you know care deeply and know are optimistic and holding you in their thoughts so it's interesting to navigate it there's a lot of things that I wanted to do we maybe we should do this at some point like things never today to somebody who's been diagnosed with cancer you know ⁓ would be really helpful Steve Pointon: Yeah, yeah, absolutely. So ⁓ finished the treatment ⁓ what happens next? Are all cleared? You get that pretty quickly or what happened? Ali Stripling: Yeah. pretty quickly so yeah so I'm very fortunate finished treatment beginning of January they waited three ⁓ I for my first PET scan scan and so I had that and then I had to wait a month to see my oncologist for the results and that was hideous. I did not deal with it at all well and I had, we spoken about this but ⁓ I my ⁓ cancer a hormone related cancer but I not to take my HRT so my hormone replacement therapy whilst I was going through treatment because I didn't want to do anything ⁓ that might the effectiveness of the treatment. plans and my priority was the chemotherapy working, the radiotherapy working, I'm not going to take anything that might stop that from happening so I'd come off my HRT I lost 10 % of my body weight going through treatment most of that is like muscle as well so I felt really weak emotionally and ⁓ physically I went for my CPET scan and then waited for a Steve Pointon: Okay. Ali Stripling: month and that's when I found Dale Atkinson and he said ⁓ you've got scanziety. said ⁓ scanziety this is new. it's not so new but I was really fortunate so I went to that first appointment and they said there was no evidence of disease so the term is NED and but I'm on five years of close observation. So last year I had an appointment every three months and now every six months, so my next appointment is in August. I either have a scan, so that can be MRI and CT, and a physical examination. So yeah, so it's... I would say last year has been this really weird kind of like, I don't know, I felt so excited to be alive. Like I had this like renewed sense of the meaning of life ⁓ found ⁓ that is also really challenging to navigate because life is just the same for everyone else right no one's you know like no one else is going ⁓ look at the sky the sky is amazing you know like ⁓ salad that i'm eating or whatever it is i don't know like you know everyone else is just normality of life and i found that very very very hard very hard ⁓ Steve Pointon: So how have you managed to sort of rebuild your life? you managed to return to work? I you mentioned before ⁓ almost not able to see beyond treatment. ⁓ So how you managed to pick up that because you said you in a fortunate position to not need to apply for benefits and that sort of thing. ⁓ But if you've through a long period of time of Ali Stripling: Yeah. Eh-hmm. Steve Pointon: of not being working and no income then that's going to come to a point where you need to start thinking, right, I need to do something now. Ali Stripling: Yeah, I I would look back and think I should have applied for benefits. suddenly kind of... realization of the longer term impact so thought maybe once I finished treatment like I'd be magically me again and you there's this whole term that we use in the cancer community which is the new normal which I hate because it's true you like I really fight some of this stuff that's going on and I find it really difficult I mean my confidence completely crashed you I didn't know who I was I didn't know how to adapt and I had certainly a period of time things weren't normal physically or mentally. and I probably didn't necessarily realise that at the time. So how emotionally unstable I was, exhausted I was. And people say like, you just need to be kind to yourself. I wanna punch those people. ⁓ Because get it, that's true, right? You do need to be kind to yourself,

but it's ⁓ so My friend had her 50th birthday in June. I finished treatment in the January. And I knew that I couldn't go to her 50th birthday celebrations in Ibiza. I was like heartbroken. And I still know that that's out of my scope of limits. Like I wanna be in bed at 9.30 and I wanna be asleep by 10.30. That's not terrible, right? But you know, and then on the work front, it is challenging. I'm not necessarily... you know, I'm working part time after having, you know, big corporate substantive roles. and I probably need that to change because I'm not necessarily using my breadth of skills and experience and passion. why probably I find ⁓ the organisation Mission Remission, which is how we probably found each other, is important to me because ⁓ it me ⁓ another to back. Steve Pointon: Yeah, and I guess that's the whole purpose of this podcast really, recognizing what happens next and this real struggle that you talk about there. And I was just going to come onto how we got to know each other or contact with each other. I've done a little bit of work with Mission Remission, sort of BBC News and that sort of thing. And then I came across your profile on LinkedIn and you're now an ambassador for Mission Remission. And the work they do is... fantastic because it deals with the realness of happens next and ⁓ of the struggles I went through when I was ill and the finances and the benefit system. It is difficult isn't it and ⁓ I at event the day at the House of Lords about the Safe Sick Pay campaign that's been going on and the reality just that when you get diagnosed cancer the last thing you want to do is go to work. Ali Stripling: Mm. Steve Pointon: or the day after while you're trying to process it. But if you don't get company sick pay, you got it because you can't afford it because you know what's coming. But now the Safer Sick Pay campaign has been successful in getting an amendment in the employment rights bill to it gets paid from day one. And there's no minimum, yeah, there's no minimum earnings levels now that you need to earn before you get SSP. And these are all things and I know Mission to Mission have got their own sort of objectives, which are brilliant. Ali Stripling: Yeah, yeah. Yeah, from the 1st of April. Yeah, it's just happened. Yeah. Yeah. Yeah. Steve Pointon: more needs to be done to help people after treatment and sort of reintegrate into society because we've been in the trenches for so long haven't we. Ali Stripling: Yeah. Yeah, and it's hard because how honest do you be with individuals about how you're feeling and the level of fatigue and trying to explain like I, you know, I like to go swimming, I like to walk, you know, that's important aspect for me of my recovery. You know, I also need to be mentally challenged and excited about what I'm doing. you know, when we when we look back at kind of, you know, throughout my career, I've always worked in, you know, an organization, either corporate or third sector, so a charity

they do have an employee assistance programs, where they do have occupational health. And, know, you you have this ⁓ I've very understanding employers And it was really hard suddenly, know, know, ⁓ like last month quit my job and now I'm in this situation And it was isolating and I think that's that aspect as well of I felt very isolated I didn't properly work back until November. So nearly, you know year after I left my previous employer without any substantial income but also without any substantial support network I did get counselling through the Royal Berkshire I got six sessions with them and that was really really good like I really needed them but otherwise you just feel like it's really weird like you're on this kind of like treadmill of diagnosis treatment in remission thank you very much Steve Pointon: Cheerio. Ali Stripling: Yeah, cheerio, bye! And you're like, oh hang on a second, I don't, don't, I, you know, I don't feel emotionally strong or I don't feel physically well enough and people just, well that's your new normal. I know, like, we need to have a discussion about this. Steve Pointon: That's that's I don't know about your counselling I'm not asking you to go into that, but lot of the work I do with my counselling is about helping people with especially, but other illnesses and situations too about finding acceptance of where you are ⁓ and situation is because we don't like acceptance. It's not something we particularly want to like, understanding things what it is and what's the way it. It's like isn't it if Ali Stripling: Mm. Yeah. Steve Pointon: in this country and this year especially it's done nothing but rain we can either sit in the house say well I can't go and do that because it's raining or go I'm to put my umbrella up and out I go. That's what acceptance is. Finding an adapting and a way through it and ⁓ it's difficult doesn't it doesn't just come because a counselor says you need to accept this. It's working on process of how you accept it and things and it's Ali Stripling: Yeah. Mm. Mm. Steve Pointon: I know you said you had six sessions of counselling, it was really helpful. that's almost life support, isn't it? In a way when you're in the time of real need, but when you come out of that, ⁓ a struggle to find that support, especially if not been working ⁓ financially, can't afford to go and see a private counsellor probably. ⁓ So then do you find that? And I'm obviously a private counsellor working a hospice too and Ali Stripling: Mm. No. Steve Pointon: I understand, I see the benefits of people who are able to access counselling beyond remission and that ⁓ to real life, ⁓ that can really help them because you evaluating everything, evaluating everything from life beforehand because who even am I now? Ali Stripling: Yay. Yeah, I mean, I certainly went through, and I'll be honest with you, I went through, you know, I've been with my husband for a long time and happily, and I spent at least six months just trying to blow up my marriage every six weeks or so. You know, I just lose my at him. Steve Pointon: Well you see that a lot don't you in terms of on the news and things you see when tragedy happens whether it's somebody dying or an illness you see how relationships break up and you think surely that pulls people together when the real chips are down but it's difficult it's really difficult Ali Stripling: Mm. Yeah. Yeah. Yeah, and he and. It's hard, I think it's always hard to explain, of like, you know, I look back and, like I said after I got through treatment, I got my first NED, I was like, wow, life is wonderful, it's so precious, and we should make the most of it. And then you look around, and still Netflix and or whoever your supermarket is, right? it's like, you know, life continues this Christmas was like I put a lot of pressure on Christmas because last Christmas was just hideous And so year I was like Christmas is so special And if had it if I'd had a job, ⁓ know that like you like, know My previous salary I would have you know, we would have gone ⁓ on a holiday to see Santa or something that's on the bucket list But my what up my parents went on a holiday my mum had a fall then so I spent January and February and a bit of March spending a lot of time with my parents and you know, but my resilience for dealing that was still quite low. So you have to go from being strong again for other people ⁓ then coming back in ⁓ reality being is that you're actually not necessarily coping with what's going on because you're trying to be strong for everyone ⁓ And ⁓ only probably in the last six weeks maybe where I'm like, ⁓ hang on a second, am I back? Am I? again as the readjustment started to happen. you know I've still got ⁓ bit where we all know as well like the long-term impacts of radiotherapy when you've had so much can an interesting journey to navigate. So far I'm doing really well but you just don't know. ⁓ For I want to keep with a positive mental attitude and ⁓ having organisation like Mission Remission there. Steve Pointon: Yeah. ⁓ Ali Stripling: helps to normalise some of these feelings. a safe community of people who you're through this podcast ⁓ of who are living ⁓ with beyond cancer. Steve Pointon: Yeah. mean, ⁓ thank you so much for your time today. I'm sure our listeners will be absolutely inspired by what you've been through ⁓ way you've told your And yeah, I've heard the ⁓ and the ⁓ difficulties that been there for but the sense of positivity that you've out with and the way you're looking to give back by being an ambassador for ⁓ Mission Remission. Thank you so much for time today. Ali Stripling: No, thank you Steve for all the work you're doing as well. It's so important to help people to understand that they're not alone. Steve Pointon: Yeah, absolutely. if you want to know more about the services I provide, such as counseling and public speaking, please visit my website on www.stevepointoncounsellingandsupport.co.uk And also love to hear from you. What subjects would you like to hear about? Where have your struggles been? What do think people would benefit from knowing about your experience? Please reach out info@stevepointoncounsellingandsupport.co.uk So once again, thanks Ali and I look forward to speaking to you all soon.