The wait is frustrating and worrying. And so many questions!
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Hi there. Sorry to hear of your diagnosis. So much great advice here isn't there? I would just say stop researching about the treatments, your oncologist will guide you with these. They will recommend what treatment to have. The financial side, you seem to of been given a fair bit of info already, I like the idea of touching base with some kind of social worker who you can get to know, and if you need help you will already have a foot in the door. It sounds like you are trying to be organized, try to stop, you can't organize cancer. The goal post can and do change without warning. More than likely you will breeze through treatment with minimal days off work (if that is what you want.)1
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Only managed 2 days back at work... Everything aches, my tongue feels too big for my mouth, food tastes yuck, I have diarrhoea and I can’t sleep... This is exhausting. I’m so sorry for all you lovely ladies going through this. Feeling down.0
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Oh you poor thing @KatWat. I feel you. It's an absolute slog but you'll get through it. Don't suffer in silence. Get onto your breast care nurse, or GP, and get as much help as you can. I've really struggled with my bowels. I had some diarrhoea in my first cycle, but since then, constipation. Finally getting a handle on it now, just im time for the last cycle! For the mouth the best thing I've found is fresh pineapple, frozen. I have some everyday. If you get a white coating on your tongue you may have oral thrush. Easily treated with Nilstat but check with your GP or onc. The bone ache only lasts 2 - 3 days thank goodness. Painkillers, painkillers, painkillers! Mine has got worse each cycle and my oncologist has said I can take ibuprofen for those days. You're not supposed to on TC but she said a short burst would be fine. Check with yours if you think paracetemol isn't cutting it. I steered away from anything stronger like codeine because of the constipation issue. Codeine might be good for you being the opposite! Can't help you with the sleep as I have slept appallingly since November when I got the email calling me back to the BreastScreen clinic. There is a discussion here called 'Who else can't sleep' where some of us hang out in the night hours. Feel free to join us if you want some company in the dark. Hang in there. K xox1
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I think I do have oral thrush, my tongue is white and my throat is sore.0
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@katwat Ring your onc or nurses and tell them what's happening if you haven't already. I made the mistake of waiting the weekend out the first time and it was awful. When I did call them on the Monday, they were able to fax a script to my local pharmacy who were happy to fill it (you need to make sure that your pharmacy will do that if necessary and that they have whatever it is you're prescribed).2
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@katwat so sorry to hear of how you going, it was great you managed 2 days back at work. Everyone is right, hope you got onto your Oncology Team today especially before the weekend. I just remember having it all planned out and I too went back to work after about a week from the first infusion, but for me it steadily got worse with each one. @HIT is right I learnt the hard way, that I couldnt organise Cancer...it organised me. All I can say is, how you feel is so understandable and we've all been there. Be kind to you, nurturing you in whatever way that matters to you is so important and learning to only do 1 day at a time and not look too far ahead. Sending big hugs, go slow xx Melinda1
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@KatWat
Chia seeds soaked in coconut milk with some honey and yoghurt and goji berries saved my bowels. I soak a tin of coconut milk with a quarter the amount of chia seeds. You can sweeten the coconut milk. It sets in the fridge in about an hour and is so variable. Any liquid will do. (Lychee juice was yummy). It was a delicious dessert that I ate every night and changed the fruit mix around. Chia seeds are miraculous, full of fibre, protein and calcium. They will regulate your bowels. Give something for the soft ones to soak into and break down the hard ones. I swear that's how they work. I had no problem with my bowels throughout my dose dense (every 2 weeks instead of 3 weeks but you finish sooner, lol) AC chemo. I hope it's not too cheesy to share a recipe but I honestly believe it was a huge help to me. My major side effect was anxiety. My diet took care of the rest, I believe.
My mouth was a mess from day one but the mouthwash they gave me in a white plastic bottle with blue writing on it saved me. I bought a soft bamboo bristle toothbrush, and mouth washed constantly as well as cleaning my teeth oh so gently 3 times a day. I went thru twice the usual amount of mouthwash and would often have to go back mid cycle to get some more (which was always handed out happily). I made sure I rested it on my tongue for as long as I could after all the gargling. At least 30 seconds, no less. It's a long time. If there was any lapse to my rigorous routine a mouth ulcer would appear immediately and as for pineapple, don't get me going. Even at the best of times I find pineapple to be an irritant. But in one of those mixed cold-pressed juices that I flushed myself out with after the chemo (some of those tumeric based ones are fluro yellow like the chemo, so I was pissing bright yellow for days, lol) I struck some pineapple. OMG, it took weeks to get over that, lol.
I couldn't have managed 2 days at work so I think you're a hero to get that far.
(the mouthwash was bicarb soda based with no alcohol and I couldn't find a substitute in any chemist shop)
These 2 things cover both ends of your body where all the trouble seems to happen. I kept a firm control over both.
I take 2 valium every nite (not before 9pm) and sleep like a baby. Endone suited me during the day.
I also visited a cognitive therapist every few weeks until chemo finished.
And I started to look at life differently from a new and better perspective.
Always look for the good that may come from all of this has helped me to cope enormously.
My spirits are with you.
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Hope you got onto someone @KatWat and that things are improving. I haven't had the thrush but it must be very uncomfortable on top of everything else. I hate things that are too salty so I haven't been doing the carb soda or salt mouthwashes they suggest but have been using Biotene (non-alcoholic) mouthwash that a few people here recommended before I started chemo - so far, no problems and it does help with the yucky taste in my mouth. Like @kmakm I had loose bowels with the first dose and slight constipation with the second - wonder what tricks the third will have in store? I also wondered whether I could go back to work as I read so many have. I didn't as it would have stuffed around with my income protection claim and also because my GP told me not to but I thought I was being a wimp. In hindsight, yes, I could have done a few days, but only a few and they would have been very unproductive days compared to how I normally work (and working in a school I would have been exposed to every teenager who is too lazy to wash their hands properly or use a tissue). So don't feel bad - many of us are too affected by the chemo to be able to work.
Hugs to you and hope you're feeling better soon - I found the first 5-6 days the worst, and life liveable again after Day 10.0
