Breakfast: Porridge. Lunch: Leftover chicken and mushroom pasta, mango and peach yogurt. Dinner: Salmon with white sauce, broccoli, sweet potato and coriander mash. Snacks: Hot chocolate
Today I received so many messages of support, it has really made a massive difference to how I feel about doing the challenge. Not only have people been telling us that we’re doing something interesting and admirable (which is very kind and definitely appreciated!). But some of the most touching ones have been people sharing their new found knowledge of dysphagia and posting the link to the JustGiving page with messages either asking their friends to read it, sharing their own experiences of it or even going away and doing their own research. My Grandma even messaged me today telling me that my Great Grandma had had mouth cancer which she received radiotherapy and chemotherapy for in 1992, but unfortunately was then left with swallowing problems. She was given tins of nutritionally complete milkshake drinks for meal replacements once she left hospital to live off. I would never have known this until this challenge started a conversation about dysphagia! I’m genuinely grateful for everyone who has got on board in any way, it helps to make it all feel worthwhile. Sharing the link, talking to your friends and family about it, sending donations or supportive messages all make a big difference. We are really proud that it has spread awareness and understanding of this area. Thank you everyone!
Dinner: Getting the right consistency is still an issue for me and my meals are generally too stodgy. But despite the stodginess, this was an enjoyable meal and I felt that with a bit of tweaking it could be made into something which could be recommended to clients.
Swallowing exercises: 3/3. All going well, although my jaw is aching a bit from the camel one that Lucy beautifully demonstrated in her day 2 picture.
Psychosocial: A group of people from my gym asked me to join them for drinks on Friday night meeting at around 8pm. I immediately said yes, but as I walked away I started to panic “what if they’re expecting to get something to eat as well? That’s around dinner time!”. My brain went into overdrive thinking of pre-planned get outs: “I’ll just stay for one”, “I’m not feeling hungry”, “I already ate”… The option of telling them about my challenge was probably quite a lot later along in the thought process than I would prefer to admit. If it does come to it on the night I will tell them. But if I’m wary about telling new people about doing it to develop awareness and raise money for charity, how can we expect clients to share their sensitive difficulties with people when they are trying to just go about their normal social life?
Old habits in the kitchen aren’t dying easily. When I was cooking my swede the other day I picked a piece out that was boiling and popped it in my mouth to test that it was cooked. As I was chewing I suddenly realised what I was doing and into the bin it went! Tasting your food as you cook is such an automatic part of meal preparation and is another little aspect of life which I would never have considered being affected by dysphagia until I did it for myself. If this was a big role you had around the house or you had a family who enjoy cooking together, this could quickly start to impact your self-esteem and identity when you couldn’t participate as you once could.
Today I met up with a friend and went shopping for a couple of hours together. Her feet were hurting and so she suggested stopping for cake, which I eagerly agreed we needed. Fortunately, she then asked “can you puree cake then, like, if you mash it up and suck on it a bit?”. Oh dear… I’d totally forgotten in an exhausted and hungry moment of weakness! We went to a coffee shop anyway and I had a hot chocolate whilst she tucked into a chocolate chip muffin, which I was quite jealous of. Especially when I took the last swig of my hot chocolate and there was a big clump of unwhisked chocolate at the bottom. I knew I wasn’t allowed to eat it so I quickly spat it out into a napkin. This was fine as the café was quiet and I was with a close friend; but if you had just had cancer treatment and were already embarrassed about any surgery to remove cancerous anatomy, surgery scars or broken skin from radiotherapy, I think you would be extra sensitive to having to do something so publicly embarrassing. It could easily put you off going out to eat and drink with friends and could quickly impact your social and emotional wellbeing.
On the bus home from shopping, I was day dreaming whilst looking at all the restaurants we went past about what I’m going to eat on Sunday to celebrate the end of the challenge. Then I had a whacking great realisation. A realisation which really should have been abundantly clear from the start, but I had yet to really accept the full gravity of: “What if there was no Sunday?”. How would I have really been feeling if this was genuinely forever? Instead of staring at the shops and feeling motivation to carry on for a few more days, I was being smacked in the face by all the things I would never enjoy again. This hard hitting realisation made me stop thinking about my belly for a moment and really re-appreciate why we’re doing this.
Breakfast: Hot Weetabix and milk. Lunch: Carrot, lentil and kale soup (again), banana custard. Dinner: Pizza and peas. Snacks: Avocado, cheesy beans. Midnight snack:
Breakfast: The Weetabix did not fill me up or keep me going in the same way that porridge normally does. To echo Lucy, this week breakfast has strongly revolved around porridge.
Dinner: I read on a puree food blog that puree pizza was good. It was not. I couldn’t eat it. It was just starchy, cheesy stodge that was too thick to eat even with passata blended in to try and make it more of a puree consistency. So I just ate my peas instead. I had only made these as an experiment because our placement supervisor gave us food moulds to trial today. Food moulds can be used to make your puree food into the shape of regular food. There are hundreds of types available when you search on the internet, from asparagus to (shockingly) pizza! As you can see, the pea mould didn’t work and didn’t make my peas feel any more like peas. I think for me the appearance of this diet doesn’t put me off as much as the texture, so I don’t think the mould would have made much difference anyway. But from looking at pictures on the internet of full meals, I think it could be useful to consider if you were with your family having a roast dinner, perhaps on Christmas Day, as it’d make your plate stand out less in a group situation and make you feel more included.
Snacks: Puree cheesy beans are my new favourite food, delicious!
Swallowing exercises: 1.5/3. I got distracted half way through the first set this morning and never went back to them. I’ll definitely squeeze in a full set before bed though.
These are getting longer and longer as we learn more and consider the range of complexities which head and neck cancer treatment creates. So if you’ve read it all, thank you! If you would like to donate to Macmillen Cancer Support, please go to: https://www.justgiving.com/Rachel-Tutty