Appetite shmappetite

 

Oohhhhhhhhh food. How we love you, how you keep us alive. But is there really any enjoyment of eating when you lose your taste buds, everything you smell makes you vomit, your mouth is in agony with ulcers and the textures are enough to send you hurling? Meh. I’ll just avoid eating, just for a day. Which becomes a week, turning into two weeks and before you know it, you haven’t eaten or drank in almost a month. But you aren’t hungry, so you can get away with it, right? Well yeah, until the nurses put you on the scales and you’ve lost 10kg in weight which results in your chemo being postponed and all your medical doses being lowered. Even as an adult, I was only allowed half a dose of paracetamol when I lost too much weight as they prescribe it based on your height and weight rather than your age, so as you can imagine this didn’t even touch the sides!

8863DDDB-4B3B-4DCE-9248-2E31E95A4752So that’s the first hurdle with poor appetite – weight loss, but there are solutions. All of which I hated, there was nothing I wanted to do to gain the weight – as much as I already hated being slim, I didn’t care enough to do anything about it at this point. Your will power goes out the window, you’re already on intense chemotherapy for cancer, why would I care if I’ve now lost weight? I wasn’t seeing any of my friends at this point so I didn’t care what people thought of me and the nurses are hardly going to judge my appearance are they? This was a really tough time for my mum and I, we are extremely close and get on so well, but this just came straight in between us. My mum was stressing how I will die if I stop eating, and I was stressing how difficult it was to eat, I was aware of how dangerous it was but I couldn’t do anything to stop it! I couldn’t bare the thought of food and there was no WAY I was forcing anything down, 3 times a day just to please everyone else. There came a point where if I wasn’t eating, I was vomiting stomach acid and if I was eating I would just throw it straight up.

At this point I was referred to a dietitian, she was extremely lovely and during her visits I wanted to do everything I could to please her. But the minute she left I would just give up on the ideas of eating. To make it less over facing, the nurses make up milkshakes and add extra ice cream (purely for calorie intake), but even that was not what I fancied. I would tell my mum exactly what I think I could eat at that moment, and she would walk in to town and find me it – we were desperate! But by the time I went to eat it, I had completely gone off the idea and would just refuse to try any of it. Looking back now it seems ridiculous that I couldn’t just pick up a piece of bread and eat it, but it really was one of the most difficult points during treatment. Next they will try and feed you “fortisips” which are basically small drinks full of calories and nutrition. But they were SO thick and tasted disgusting. So that was also a no. I had even gone completely off the idea of drinking water, my tummy was so empty that it would just make me feel sick to drink too much. This wasn’t too much of a problem, as they can hook up hydration IV if you aren’t having enough fluids.F26CD5C7-F1CE-4211-B554-054C7EB68800

I think during a few months of mucositis and soreness of the mouth I literally lived on slushies (bearing in mind this was in winter – they were almost impossible to source). So one of the nurses would buy a bulk of ice lollies and crush them in the kitchen blender for me about 11 times a day, what a hero!! No calories but it was a start. I did some research for how else I could get food inside me without eating or drinking it – if they could hook me up to fluids, surely they could just put food in the same way? Not quite, but almost! I found information on TPN, which is basically a bag of nutrition which can be fed through my PICC line. I can’t remember why, but this wasn’t even considered when I asked the nurses, it’s something they prefer not to do as it is mainly used for other conditions, not mine. I was gutted, this seemed like the easiest way out and they weren’t trying to help me. Why can’t they understand how difficult it is to just EAT?! Besides the sore mouth, I do think the majority of this problem was psychological but that didn’t make it any easier.

Another week or so went by and they decided now something really needed to be done. There was talk of a Gastrostomy PEG being inserted into my tummy, which would allow me to hook up a bag of special nutrition overnight or during the day and it would just feed directly into my stomach. When this was suggested I couldn’t request it fast enough, I didn’t care what it took I was signing up! Unfortunately, before they can take you for surgery to insert this tube, they have to make sure your stomach can tolerate the feeds which will be given. To do this, they first insert an NG feeding tube up your nose, going down the back of your throat and into your tummy.  You are awake for this and they literally just feed it through and you have to keep swallowing the tube as they do so. Honestly, I’m not going to sugar coat this because it was the worst experience I’ve ever had (ok exaggeration – but it was weird and it was extremely unpleasant). The nurses sat my bed upright, I took a deep breath and CRIED the whole time they were poking it in. It didn’t hurt at all, not even slightly uncomfortable, it was just a sensation I really didn’t cope well with. I bet some people really enjoy it (probably not enjoy, but maybe they don’t mind it so much). You probably have seen lots of children with an NG tube in their nose to help with nutrition.9DB5E269-AF88-434C-AD32-A1C1370E7199

I didn’t get on well with this tube at all, I don’t particularly have a negative outlook on them, but they just weren’t the right solution for me. I remember one day my oncologist came to visit me in hospital and I was telling her about the experience of having it put in, and even the sheer conversation of events had me throwing up, so much so that the tube actually came back up my throat and out my mouth. It sounds horrific but it’s something that happens quite easily as there’s nothing holding it down in your stomach. I then of course had to have it re-inserted – so my advice if you do have one is try to avoid the sickness! This time I just took deep breaths and was incredibly relaxed the whole time they were putting my new tube in, it was a lot less stressful, but when you’re feeling poorly this is the last thing you want. I didn’t like being constantly aware of the tube, every time I breathed it nudged against my nostril, and every time I swallowed it moved about my throat – so this didn’t really help the eating situation.

Luckily for me I got on really well with the nutritional feeds through the NG tube, my stomach tolerated them and I was feeling better. My oncologist had me down on the emergency surgery list and I was taking down the next morning for insertion of the gastrostomy PEG. Yay! Not something I ever imagined I would be excited about, but that’s just how different life is now. I had a general anaesthetic for this (fave) and it only took an hour or so I think. It was relatively straightforward anyway. When I recovered from the anaesthetic I remember having a really sore throat from where the camera had been down my throat, and my stomach was really sore where they had cut through the muscle (well..) so that hurt every time I moved! 64C61D28-6925-42F2-85B4-754CB75D1238

Then the exciting stuff happens! The nurses keep an eye on your wound, which was really neat and they show you how to look after the tube. Basically, it’s kind of like when you get your ears pierced, you have to turn it regularly to make sure the skin doesn’t heal over the tube. (My life is so glamorous I honestly don’t know how I’m so single). They then showed me how to use the clamp and the bungs to open and access the tube, all very simple stuff once you know how. They do a quick test where they drawback using a syringe to make sure the stomach fluid is the right colour, then you judge it against a pH scale to know it’s in the right place! You also get your own feeding machine from Nutricia. You connect your bag of feed up to this pump, choose all your settings and connect it up to your tube! In hospital it was always on a drip stand, and at home I had a smaller pump I could carry around with me if I needed to go anywhere whilst it was on. I started with one feed overnight which was 1000 calories (amazing) and then I would have smaller, 300 calorie top up feeds during the day. So my weight went up so quickly and I felt so much better.

Nutrition really is super important during treatment, because the more you are eating, the quicker the chemo is absorbed and then flushed out of your system. However I find it SO hard when people give me eating advice. I have asked my doctors, nurses, dietitians and oncologists, and NOTHING has been fully proven within diets to cause or cure cancer. NOTHING. So any advice regarding food is all something that may have helped someone, but it is not medically or scientifically proven. If it was, doctors would be giving me this advice. I appreciate that everyone can do things to their diet and their bodies to help in this situation, but the only advice my oncologist gave me was to EAT. It was a bonus if I was eating at all, regardless of what it was. And I needed the calories!

 

3 Comments

  1. August 7, 2018 / 7:00 pm

    A very informative account Dais, helping us understand the day to day challenges you are enduring with such grace and courage. A shining light to all and an example for the rest of us. Thinking of you always. xx Grandad S

  2. Carol
    August 7, 2018 / 7:26 pm

    You are a true inspiration. I’m so glad the gastro feed is working. 😘

  3. Roberta Kemp
    August 7, 2018 / 8:03 pm

    Thankyou Daisy, I also have a peg fitted as I find it very hard to eat anything. The only food I am allowed to eat is soft food like yogurts and mash. All I ever fancy is a slice of toast or a crumpet which I am unable to eat due to my throat still healing from radiotherapy 11weeks on. I feed through my tube throughout the day with the shakes as they are to disgusting to drink. I used to feed through the night with the machine as you are doing but have stopped that now. It’s so lovely to hear from someone that is going through the same thing and we can understand each other. Thankyou so much for your story. Sending love. Roberta Kemp x

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