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5 months post treatment and getting there.

Big day today, had my PEG removed. Managed with just the numbing spray and no sedation, all done in 5 mins. Strange popping to the loo and not having to move tube from waistband! Throat slightly tender, otherwise all good.

Properly back to work tomorrow with mixed feelings. Have got used to being at home with hubbie & pooch, really going to miss them. Sadly can't quite retire at 48! Nervous about being back in the classroom next week after 9 months away from it. Also hope I can stay focused, really struggle to concentrate these days. Reassured not on my own with that from Hazel's post yesterday. Will see how I get on with fatigue and voice too. Had a dog walker lined up to help for first few weeks, but there's been an outbreak of kennel cough, so can't start that for a couple of weeks. 

Eating getting better all the time, even starting to enjoy some meals! Dryness manageable. 

Thank you once again to everyone on here, the support has been amazing. Some of the strength lies in there being people here who have notched some years up post treatment, others at a similar stage and then some who are starting out on this detour, making you feel useful when paying back the help. 

Still a long way to go in terms of recovery, but hopefully will start to see how 'new normal' feels. 

Take care all, Ronnie 

  • Best Wishes for your return to work Ronnie ThumbsupGrinning

  • Hi Ronnie

    All the very best on your return to work tomorrow. You are bound to be a bit anxious it is understandable. You have been through a lot, (as we all have) and your recovery is on going as you say. Things have changed for you, and  your needs for adjustments must be respected. Support and understanding and not overdoing things will get you through. Don't be afraid to ask for extra support when needed and take one day at a time.

    I wish you the very best on your next phase. Well done Ronnie and good luck.

    Nicky

  • Also hope I can stay focused, really struggle to concentrate these days. Reassured not on my own with that from Hazel's post yesterday.

    Chemo brain gets better in time. I brought this up in another group on social media some time ago and must folk replying in the weeks since do report improvements. 
    I’m not so sure if radio brain is an entity. Mental exercise is key. Looking at your erudite posts I doubt you have much to worry about, Ronnie. 
    I bet the kids will have you jumping through those mental hoops pretty quickly. 

  • Hello Ronnie, 

    I'm new to this group and your post was the first I read. I'm so pleased your PEG has been removed. That is something I am working towards. My treatment finished end of April. I had a few setbacks in my recovery so eating took longer than I hoped. My swallowing is ok, my trouble is dry mouth and textured foods in my mouth. I've gone backwards and back on only soft foods like yogurts and only a few spoonfuls. I'd be interested to know how you overcame these hurdles and quantities you were eating before your PEG could come out. 

     I appreciate everyone's different but any tips would be gratefully received. 

    Best Wishes 

    Sarah 

  • Hi Sarah 

    Welcome to the group. Sorry you have needed to find yourself here, but it is the right place. Everyone here has been so helpful and supportive.

    Similar timeliness to you. Also really struggled with eating. Had stopped using PEG by 12 week clinic, but was losing too much weight so had to wait another 2 months for today's removal.

    Swallowing came back after about 4 weeks. Its the dryness, texture & taste of food I have struggled with too. I still have 2 Ensure a day, but drink them. The dietician sent me lots of samples of smoothies, soups,etc. I now have Altrajuice & Altraplen too, less volume same calories as Ensure. 

    It has just been about keeping the calories going. I have been eating my most unhealthy diet ever, chocolate mouse, ice cream, cereals with sugar barely any fruit / veg. It has only been in last week I can have onion, garlic or potato - they just tasted and felt rank. 

    Breakfast is usually weetabix with protein powder  sugar & strawberries. Maybe mid morning Ensure/ soft cake & drink. Lunch is a struggle, gone from smoked salmon, cream cheese, omelette, now able to manage tuna mayo sandwich - always with water. Lots of pasta / risotto for dinner, some fish (haven't eaten meat for years). I have soft cooked veg with them. Usually an Ensure before bed, sometimes one overnight if I wake up hungry but doesn't happen much now. I've had 2 puddings a day. But it's all helped me maintain my weight, my consultant was more bothered about that than what I was actually eating. 

    Not sure if any of that helps. Quite a few people have a cuppa with meals rather than water, or try soda water - apparently that freshens mouth. 

    With some foods I blistered, but skilled caphosol after eating and mouth settled. It really I'd trial and error I'm afraid.

    Good luck with it and keep us updated 

    Ronnie, x 

  • Here's hoping. Take care

  • All the best with your continuing recovery and return to work.

    Regards Ray.

  • Thanks Ronnie for all your advice. I will re think things to find a way. 

    All the very best to you