The last supper

I had an oesophagectomy

I have a new tummy. 50% of it was thrown out with the hospital waste one day last November. I had an oesophagectomy. A surgeon removed an advanced tumour and another one reshaped my oesophagus with my stomach. I was told my relationship with food would change forever. I don't feel hunger. I was advised to eat small portions - about 6 to 8 meals per day. I'm managing something like 3 to 4. One of those is usually ice cream or a glass of wine spaced far enough away from my pain meds. It's been the most demanding thing I've been through physically. But I'm filled with immense gratitude I could have this life saving surgery. I used to describe myself as a bit of a foodie. The ritual of it, the making of it, the socialising around it. I had food on my mind. These days, nowhere near as much. Eating is a chore. Swallowing is an obstacle still. I'm currently living on soup and soft foods. The last supper was an all out celebration parting ways with my old tummy. I went to The French in Manchester and had their tasting menu. It was nine courses of pure edible magic. Here's the story, before and after my life changing operation.

0:14  

The Last Supper.

I mean, it sounds a bit dramatic. In actual reality it probably is. The title for this episode alludes to the last time I went for a meal out with my old original stomach that has served me well for about 40 years. And yeah, that is the last time realistically I could ever do a tasting menu. A very dear friend, my friend Alice took me out as a…

1:16  

No, I don't want to say celebration and I don't want to say commiseration, just a real acknowledgement that life was gonna be different after having my surgery. So in the last episode I had shared about getting an oesophagus cancer diagnosis. Obviously quite unusual for a woman my age who isn't… I mean, I used to, but isn't a full time smoker currently, or an excessively heavy drinker. And yeah, if we're going to stereotype oesophagus cancer patients, they tend to have had a yeah long term relationship with cigarettes and alcohol and tend to be in the much older camp. Over 65 and men.

2:17  

So oesophagus cancer, as I mentioned in the previous episode, is quite an aggressive cancer. And mine hadn't spread or metastasized, but was defined as advanced. I wouldn't say it's hard to treat but the treatment is quite full on. So I had a sandwich style treatment of chemo. If the bread of the sandwich was the chemo, the meat filling was an oesophagectomy. I was told the oesophagectomy would be quite a life changing treatment. It's a two surgeon job and you’re in theatre for around 12 hours. As an aside I heavily crushed on one of the surgeons who was very attractive, I'm sure he was attached. He was the one who took the cancer away. So what a legend.

Yeah, as soon as I knew who was going to be working on me, I did that thing of having a bit of a Google. There really wasn't much about my crush surgeon online. But the other surgeon who I’d met a couple of times, I discovered his line of work was very much gastric band surgery. I was quite alarmed by this because I was told a good portion of my oesophagus would be cut away because of where the tumour was taken up. They said the cancer technically wasn’t in my tummy, but it had made its way to the wall of my stomach, where the oesophagus meets my stomach. So for that reason, obviously a portion of my tummy was going to go in an industrial bin outside the back of the hospital. I was told that was 50% of my stomach and naturally quite freaked out by that information Moving forwards, I was going to be on little and often diet. I'll be able to eat a range of foods, but it would be six to eight meals a day. Now, my reality is, I am having trouble swallowing most food, my diet is quite limited. And I'm not eating six to eight meals a day. I've got no hunger impulse that's also gone in the bin with 50% of my stomach. My stomach has lost the neurological pathway to tell my brain that I'm hungry. I was also told that would be the case with thirst. But I actually think I do experience a little bit of thirst. Anyway, I'm a massive brew drinker. So I'm awash with cups of tea in a day, and I'm not really thirsty. I'm aware that I'm a well hydrated person. I'm not really craving more liquid.

6:15  

I'll be honest for someone that was so food orientated. I'd describe myself as a foodie, I love cooking, love going out to eat. I've just got a very different relationship with food now. I'm nowhere near motivated by food. I try to have a fruit smoothie in the morning. I'd happily skip that and just have the bare minimum for lunch. I'm trying obviously not to do that. But yeah, food prep is a bit more of a chore. And I can't swallow a lot of things. It's difficult to describe this. It's easier to explain what I can have.

7:08  

I can have pureed food.

So a lot of the time I'm eating soup. And often if I can't be bothered cooking, I just get a fresh soup and blend it down. Got an amazing blender at the moment that literally pulverises things to an inch of their life. So that's perfect. And anything that has some bits of texture like fish or (I don't eat red meat,) chicken or even pulses would have a tendency to get stuck in my oesophagus, even post surgery. I experienced something I call a hard swallow, which is a little bit like the uncomfortable blockage of food that hasn't even reached my tummy. It literally comes up. I’m not sick every day, but because I like to try new food and see where my boundaries lie, I do push it.

And so the last stupid thing that I did was in a very public setting: the M&S cafe with my brother. He had a fish finger sandwich and wanted me to try his fish finger, which was such a massive mistake. Anyway, I had about three bites of a fish finger - tiny mouthfuls again. I started to walk through the menswear department and before I hit the Chino section of M&S, I basically just barfed on the floor. It's not stinky sick. It's not sick that's mixed with tummy acid or anything like that. Literally undigested food that can’t go through my oesophagus

11:16  

The tasting menu that I did with Alice was at The French.

It was incredible. And it was totally manageable. People talk about doing tasting menus with 10 or 12 courses, coming out of the experience completely overwhelmed with food. But this was nine courses, three starters, three mains, three deserts. And some of those courses were literally a mouthful or a thimble of something.

12:24  

You know, we ate, we had margaritas and wore our best clothes. I was like a balding woman in this restaurant. I will post some pictures of that experience. We had such a great time. But um, if I tried to do that now. Well, I couldn't swallow 90% of the things on that menu. Obviously, I'm hoping and praying that that's temporary. And I get the ability to have my oesophagus opened up a bit more. Got a procedure coming up that should enable that. So that I can have more texture and just have more confidence, eating and being able to eat anything really that fancy when I eat out. I'd love to get back to that place again. But it's the volume of food that is a challenge. And I think probably not having hunger impulse is a blessing. Because I need to have small portions if I don't want to overeat. Because I got this thing called dumping syndrome.

14:14  

It’s common with an oesophagectomy. Too much food hits your upper intestine too quickly.

It goes into your bowel too fast. And all the blood gets drawn into your digestive system to process that food. And so you get a really mad dizzy spell. Even sat down you feel like you're about to pass out. I was having this, oh my goodness, post surgery in December I was having it every day nearly. You're also clutching your guts and thinking I need to dash to the loo. There’s an unpredictability to your body. I have some fear, definitely about eating now. I think doing something like a tasting menu now would be near on impossible. So I'm so grateful. I mean, what a privilege to even be able to say that I've had that experience. Honestly, you get so grateful for these experiences. And it really puts a whole new perspective on eating. Because I think my relationship with food is going to improve, I feel optimistic about that. I also feel a peace about if things don’t change, even if that's long term.

15:50  

I'm not sad about that. I'm just, I think what eclipses that feeling is this illness was so serious and was so treatable. Even if that treatment was quite drastic. So yeah, massively grateful that I could have this operation.

20:31  

The medication you have to take to manage, you know, these big, heavy duty surgical incisions that have gone in your body and gone quite deep, especially on my back, because they've gone through so much muscle. I would love to watch a video of that, but there's probably a reason why they don't record every patient's major surgery! I'm sure they used something motorised, to get in there. Oh my gosh, I’d hate to hear the noises! It's so good it's a general anaesthetic - you're absolutely knocked out.

(On the upper GI Ward) The woman opposite me, I got chatting to her and I said, ‘Oh, you don't mind me asking what you've come in for?’ She'd basically had her bowel removed and her bum hole sewn up. I'm like, Whoa, that is absolutely the point of no return when they're removing your bowels, and the final exit gets sewn up. I'm like,

Oh, my gosh, I was not expecting that reply. But it was sobering talking to her because she'd suffered with colitis for some years and obviously moving forwards had to wear a bag permanently. And just everything that comes with that.

22:26  

Mind blowing? Yeah, I think there was a lot to process after this surgery. Pain medication was a big one. And initially, when they took away my epidural, I was put on something called Oxycodone. In certain parts of the world this is abused as a street drug. I can completely understand why! I hold my hands up and say, I probably am addicted to this pain med. It's been part of my daily routine for roughly every four hours every day, around the clock, including getting up at night to take it. I've been doing that for over four months now. I probably have a dependency on it. And I think that's to be expected. It's going to be interesting to see how I move on from Oxycodone and what the options are after that. I'm slightly anxious about that process.

26:37  

Honestly, in the hospital I had expert, tender care.

Everyone, from surgeons to the care support staff. I couldn't physically walk or get to the toilet. The toilet became problematic. There’s incredible women that were just prepared to deal with the physical, messy care I needed. I had to have physio to get me mobile, even though that was really daunting initially. I was just dealing with a lot of resurfacing trauma. The pain meds prompted unhelpful memories. It was the first time I felt the burnout stuff really creep back into my periphery. It hadn't really bothered me since having my cancer diagnosis.

30:11  

A couple of things I want to mention to round off. What they don't tell you about chemo. The chemo made a drastic change in getting a window where I could eat normally again. Before chemo I couldn't eat for three and a half months. I had everything on a milk feeding tube that went into my intestine. The food tube attached into a small hole below my tummy. When I had chemo pre surgery I knew that the chemo had shrunk the tumour, because I wasn't regurgitating. I was frequently bringing up just saliva. I had maybe about six or eight weeks of enjoying eating normally.

This was when I got to do my last supper - I was able to eat anything and everything off a menu and eat out confidently.

The common side effect with chemo is your hair falls out. Mine fell out quickly, only in the first round of chemo. The thing that they don't tell you is your hair grows back really quickly. Weeks not months. It's quite incredible. I had thinned out hair on top and I got to a point where I was wearing some head coverings but they weren’t empowering. I didn't feel like I was rocking it. So I went to my local barbers. They hadn't seen a woman as a customer. I think the last one that had gone in there was the cleaner. Anyway, I asked for a number two buzzcut, that's what I got. And it felt great! I've got some photos that I will show you. I'm very empowered having that haircut.

You get some weird side effects that are unexpected. I had this tingling. My fingers were very reactive to the cold - especially going in the fridge and definitely going in the freezer. I'd get this intense tingling in my fingers. If I went outside without mittens, I’d get this mad tingling in my fingers. The next side effect, oh my gosh, this didn't happen until the first cycle in the second round of chemo post surgery. I got the most awful nausea. Bear in mind, I’d become very used to being sick and regurgitating. That had been part of my illness for about four and a half months. I was very used to puking. The interesting thing about that - I had zero nausea.

In this second round of chemo I had horrendous feelings - the travel sickness type feelings that come with nausea. And that was a big reaction that lasted for six days solid. Previously sleep had abated it in the past. But it didn’t work this time. And so I’d go to bed and literally puke about every 20 minutes. It was at least three times, sometimes four times an hour. And that lasted for six days. It was debilitating, to say the least. So I had to get a doctor out, come to the flat and give me some injections in my thigh. I’d tried everything, meds wise, but these injections in my thigh eventually worked. It was incredible. The other big side effect that's super common, that's bearable, is exhaustion. After chemo I'd spend about a week in bed, literally around the clock.

36:31  

Sometimes I'd get up in my pyjamas around 6pm.

I'd watch TV. I could manage about two hours TV in the evenings. My sweet brother Nick, was staying with me when I had all those side effects so it just made it more bearable having someone there. That's everything I can think of sharing with you about the side effects and my treatment. I’m looking forward to sharing some more stuff about how this cancer has changed my mindset and some things that have fundamentally healed. Some unexpected conversations with amazing medical people. Yeah, there’s going to be a couple more episodes in this vein. So looking forward to sharing that with you

Keep being courageous x

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