Nil. By. Mouth.

I didn't eat for three and a half months

I haven't been around for a while. I've missed you, it's been nearly a year. I thought I'd dealt with my rock bottom and then another level came along and took me by surprise. I stopped eating and drinking for three and a half months last year. The first few weeks of that I lived on custard creams, porridge and rice cakes. I walked into my local A&E three times before I was admitted. I was kept in only after I started vomiting water. The fear and the relief were in equal measure. I had a camera sent down my throat, into my tummy to discover what was going on. The last thing I expected - Rachael, you have oesophagus cancer. Part of me was incredulous, part of me laughed at the absurdity of it all. What did descend onto my emotional health was an inexplicable peace. Here I tell my story around the physical challenges that come with oesophagus cancer and the huge relief of knowing that it was treatable.

0:15  

Hey, how you doing? Boy oh boy have I got a bit of a saga to fill you in on. First things first... I haven't been around for a little while. Since May last year, which is 10 months now. Yeah, things have been quite challenging. I'm not gonna lie. I think let's just do the headlines first this episode is called Nil. By. Mouth. The reason - last year I didn't eat for three and a half months. I couldn’t eat or drink normally for that period of time and I got a diagnosis of oesophagus cancer. You know, when you think you've weathered quite a lot, and I've been hopefully quite upfront, I've been through a lot. Three years before I got this diagnosis, I had burnout, I had to exit a business, very sharpish. It took me two years to rebuild: mental health, sense of wellbeing, work life balance and confidence. The start of last year I was thinking got a few projects on, doing some work with a fantastic uni up in Scotland. The podcast was going well, life was sweet. And I was thinking I might take a little bit of time off in the summer. Not because I'm in recovery, but just because I want to enjoy doing some fun stuff in the summer.

And within three and a half weeks, I couldn't eat or drink.

I had to laugh, because it was literally dumbfounding. I find out I’ve an aggressive cancer lurking, that has been there for some time even. Oh my gosh. So we are literally living the brand mantra: calling on courage on a daily basis. I’m slightly aghast at how bizarre life can be but I want to do this episode justice and just be honest about the physical journey. I can be very thankful and say that I've not had physically a lot of demands on my health at all. So this hit me like a ton of bricks.

I'll take you back to my last year. I'd gone to see some girlfriends in town and have some lunch out. I had this weird acid reflux indigestion. It affected how I ate the pace of my food. I was having porridge and thinking gosh, this is hard having to eat it really slowly and in tiny mouthfuls. And when I went to meet my girlfriends and I thought, you know what, I'm not gonna say anything here but I'm just gonna order light bites. And if anyone knows me socially they know I'm a big fan of food and do like a tipple or two. (I put that down to my Irish heritage.) I had lunch. I was relatively okay and had a few drinks. But afterwards it was a day by day deterioration. My diet became plainer, simpler and smaller. Everytime I had to face a meal, the acid ingestion was bonkers. It was concerning. I started to bring food back up.

I was down to a diet of a few rice cakes, a couple of custard creams or maybe a cup of soup.

5:16  

I just started to puke food back up. It wasn't like alcohol puking or food poisoning. It was undigested food not even hitting my stomach. And I thought that was weird in itself. I didn't have nausea at all and didn't feel sick. It just physically felt like my body couldn't tolerate food. Obviously I was very concerned. Thank God it wasn't the year of 2020. How I would have had to deal with this and the pandemic, I have no idea. I got myself in an uber and got myself to a really good local hospital. Afterwards, I found out they are oesophagus specialists and have a team: the Upper GI.

I am eternally grateful to that ward at Salford Royal for just the knowledge and care and helping me through this journey.

I didn’t get to Upper GI for some time. And so I did a walk in to A&E. The first time I was told I had severe acid reflux. I said, ‘well, I need to see what's going on internally.’ It feels like something weird is happening with my stomach. I thought it must be a stomach issue. I thought I had a hernia basically because I'd been through so much stress in the last two years prior with workaholism, crazy hours, the toxic issues in business that I had to extract myself from. The financial impact and all the decisions connected to leaving a great job prior to the business. So much emotional toll had hit me. There were days before I had this illness that I looked at myself in the mirror and was amazed that I didn’t look completely haggard or gone grey or my hair had fallen out. Oh my gosh, maybe all of this stuff has led to some kind of stomach hernia. Or sorry, not hernia I mean stomach ulcer. Obviously they're pretty common.

Anyway, I was sent back home and I was told look, we can do a camera test as an outpatient. That's not something we would be able to do in A&E. Now, bear in mind, I was not retaining food. And so now I'm living on a diet of custard creams and rice cakes. A quarter of a bowl of porridge and I could tolerate water and cups of tea. And I was thinking this camera test is going to take at least two to three weeks. How long can I survive on custard creams and porridge? Anyway, my symptoms worsened. The second week I went back to A&E.

9:50  

I saw a locum doctor. He pushed on my tummy, seeing if there might be a lump in my tummy. There was nothing there. He couldn't give a clear diagnosis. He also said, ‘I can't admit you, because it's just acid reflux at the minute. We'll give you some more acid reflux meds.’ The third week rolls on. I would say this was the most frightening point, but probably the best thing that happened because it happened very suddenly. I tried to drink water. I couldn't retain that I was bringing it up. I remember ringing the reception at Salford Royal, and the receptionist being really concerned, I thought, Lord, they've got to take me seriously. Now they've got to admit me.

In A&E if your arms not falling off, you're looking at about four and a half hours wait. Take a book or good podcast with you. That third time because I couldn't keep water in, I was puking now, in the reception area of A&E with a visible issue. The hospital did admit me. And then everything happened very quickly from that point. Within 48 hours, they did a camera test. I was sedated for that. I can't remember much about it. But I remember coming to afterwards, and there was this beautiful nurse who came up to me, who had been in the room during the endoscopy. She took my hand and said, ‘I'm going to be praying for you.’ Now, little Rach is used to hanging out Christians. And so that phrase is quite standard in my world. It didn't occur to me actually, not many health professionals would say that to you, if you have a minor stomach issue. It didn't register that something bigger was going on.

Within 24 hours of that I was taken into a room and told, ‘you have oesophagus cancer.’

No one in the family has that illness. It's an illness that is associated with smoking and heavy drinkers. It’s usually men over 65. That's the dataset of oesophagus cancer patients. So it was a huge shock.

14:17  

It felt incredibly frustrating and the timing of it felt really screwed up. Like I'd literally just launched a whole bundle of stuff on the Call On Courage website. I'm used to things happening when I put myself out there, especially online. It’s like a pushback that happens. Often it's financial, some bad apple relationship or something weird occurs. So I'm used to  stuff happening but this was on a whole other level. Honestly the news sometimes hasn’t sunk in. I still have pinch me moments, realising that I've had treatment now and the prognosis over me. It's just very, very surreal. It was after just a lot of shit things happening in succession. I didn't feel sad. Interestingly, I didn't feel angry. The overriding feeling was just peace, just complete, utter, incomprehensible peace. Before cancer, the fallout of the last two years was rage. I had complete rage, and felt a lot of injustice. A lot of people skipping off into the sunset quite merrily off the back of this thing I'd created. (The dating app). I had to navigate that and congratulate people. There was so much pain in that. And just the absolute bloody rage of how unfair the whole thing was.

The rage wasn't wiped away in an instant, but it swiftly evaporated.

(Where faith is concerned) I haven't got much but what I do have I'm intending to hold on to for dear life. I think there's issues you process, when you’re an anomaly in a dataset with an aggressive cancer. And so there were things that were said to me that were needed to be said, but difficult things to hear. They talked about life expectancy. They talked about the cancer being advanced. And I'm thinking this tumour has been there for some time. Like, there's so many things that were difficult to process, but so many things that I was absolutely relieved for. This is a prognosis that's hard to detect. It's amazing that I had symptoms.

People don't generally do well with oesophagus cancer because it's not easy to find. And it can spread to other parts of your body. It can come back. I had a little bit of Google around. If you’ve got oesophagus cancer, maybe just avoid that. It’s affected by smoking and drinking, often older people get it. They don't tend to live that long afterwards. But that's also because they've smoked a lot or you know, not had a great healthy lifestyle. So the data and outcomes are really biased by not looking after yourself. For me, yeah, I did smoke, I smoked in the 90s and smoked on a full time basis. And I was 16 when I started and I was 24 when I finished. So some time has passed.

19:15  

You navigate a lot with this type of illness. Cancer is common. One and two of us are going to have a cancer at some point in our life. Everyone's got a family member they know that has had cancer, or sadly even a family member that has died of cancer. And so, you know, when I'm sat in a hospital wired up to my drip and thinking, right, how do I tell people? We weren't allowed visitors. So I told my family that before I got the diagnosis. After, they let me have visitors. I needed to tell my brother face to face. It was the hardest thing to have to endure 20 minutes of talking about doorknobs of a really nice property he’d just visited. It was in Ancoats. I'm thinking, How do I slip this into the conversation? Anyway, we did. That was good to have that conversation face to face.

Then I'm having to text people and tell people. And then people are upset and understandably and everyone's got different reactions to it. One of the most lovely text messages I got was from a dear friend whose Dad had passed away from cancer. She just said, these are some ideas, but you just tell me when, how and where you need me. And I'll fit in with that. It was just one of the kindest, most thoughtful texts to receive.

I am so blessed by many people and many messages. Many kind things, gestures, flowers, gifts, voice notes and phone calls.

I knew that my stomach was going to change because I was going to have a surgery that would involve 50% of it going.

There were meals out and drinks and letting our hair down before all of that stuff happened. That was amazing and wonderful. God the best six weeks, I think I had in a long time pre surgery. My body would physically change with this surgery. I'm just blown over by people's goodness. And just the realisation of having really spent time investing in my friendships and realising that when things go wrong in other areas of your life, friends are the family, you know, in a big city that you can absolutely lean on. And I absolutely had that. I mean, I have got family that do live close to Manchester… but friends that are like family.

23:54  

Cancer news travels fast.

It's a loaded word. And people project their own experiences on that diagnosis, understandably. One of the things that was tricky to navigate was with people that had not spoken to me for maybe some years. Not someone I hadn't been in touch with for a little while, but we're talking years who were trying to resurrect a friendship with me. You know, they reached out. I can understand why. But trying to rebuild something old, when the other person is very poorly is a difficult thing to do. It's a big ask on someone. I wasn't able to commit to rebuilding a friendship - which felt like the right thing to do. When you're not well, privacy matters. I think this has been a recurring theme when I had my breakdown, when I had the burnout. Like for some stupid reason I decided to join this new church and it was very vibrant, very cool, very switched on, very visible, very into social media. It’s great people leading it but so the wrong decision at the wrong time. And I've had to really learn the power and practice and value of solitude. It is such a misunderstood practice and discipline in a faith based walk.

But solitude, oh my gosh, it's a superpower. And I think because of the burnout, I'd learnt to appreciate and value the power of that.

I was having to go back into this kind of solitude again. I didn't eat for three and a half months, I was on a feeding tube. Initially, it was in my nose. That was very uncomfortable, I felt like I had swallowed biro. And then my body started to adapt around it. But then thankfully, I got a more semi permanent solution that I'm still wearing. I'll pop some attractive photos on Instagram for you. It's called a jeg. It's a tube that physically hangs about three inches outside of my body. A hole on the left side of my stomach. It goes into my upper intestine. The size of the tumour and where it was positioned, was making my stomach open all the time. That's why I had all that crazy acid reflux. I was puking about every 15 minutes. Even just saliva was causing me to vomit. And sleep would be the only thing that would alleviate that. I was so exhausted from just spewing all the time. But yeah, privacy weighed in heavy when I was that poorly. Some people thought that cancer was the worst thing that was happening to me. I can honestly say it wasn't. Physically, it was demanding. It's been the hardest thing I’ve endured physically. But it's definitely not the worst thing I've gone through.

Perspective affects these things. I had a terrible heartache from this business venture. I thought I was going to be in that for the long haul. It was painful because it was faith based as well. My faith was entangled with that and trusting God with it. There was so much heartache from the fallout of that, the cancer was so different, and much easier to manage. In comparison to that, there weren't lots of unanswered questions, if I had questions, I had people I could speak to. I had very staggered appointments, and a team that surrounded me, that were amazing. The support for something like a cancer is just astounding. But I think for mental health it’s wildly different. It's so different and difficult to explain when you've taken a gamble and a big risk. It’s out of people's frame of reference and understanding. And so people don't get it. It’s been a hard learning lesson to process that and who to share the pain of that with. But processing pain is so vital.

28:50  

Not everyone gets access and rights to a cancer story. When it's happening in real time. I mean, you might be eye rolling the fact that I've actually put the effort in, to record an episode and tell you the details. But I'm getting to control the narrative of this story. And I'm out the other side of my treatment. I can say that I'm working towards a vision, which is an amazing place to be and it’s liberating. Oh my gosh, super thankful my illness was caught at the time that it was caught.

I'm just sending so much love to anyone listening to this that has had a diagnosis of this type of cancer or any cancer. And if the prognosis looks different for you. Gosh, my heart is with you. So with you.

Sending love and keep being courageous x

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