Forum Discussion
KatWat
8 years agoMember
The wait is frustrating and worrying. And so many questions!
Hello, I have been recently diagnosed and it has been a whirlwind of events. I had a lump on my left breast which I was confident was just a fibroadenoma but went to have it checked out anyway. The GP sent me off for a mammogram and ultrasound, then core biopsies of said lump. Whilst having the core biopsies the radiologist asked if I had noticed any changes in my right breast. I had not, neither had the GP. He said there was a lump there too and should be biopsied but I would need a separate referral. I booked an appointment for the following week. In the meantime I went back to the GP and the results from the scans and biopsies confirmed a fibroadenoma in my left breast and that the lump in the right was probably the same. We decided to go ahead with the biopsies. feeling confident it was benign I had no concerns abut the results. Until, taking my daughter to her first day of high school I get a call from my GP reception suggesting I bring someone to the appointment with me! I felt my world cave in. Thank goodness my Mum was with me. I had breast cancer.
Everything happened so fast initially. I was diagnosed on the Tuesday, saw the breast surgeon specialist that Thursday and had surgery on the Monday! Now I'm home 1.5 weeks after surgery, relieved that the cancer has been removed but frustrated waiting on a treatment plan. It was stage II, ER+ and PR+, and node positive. Do I opt for chemo (there is no way I can afford the oncotype DX testing)? Do I use the cold cap thingy or just shave (maybe I'll dye it pink too!)? What about dose densing (more chemo over shorter time so I can get back to normal work sooner)? Radiotherapy? Hormone therapy? The waiting is frustrating, I just want this all to be over and done with. I'm worried that I won't have enough sick leave left for those days I may need off during treatment. How will I provide for and support my darling daughter? Will I be able to pay my mortgage and other bills? How much will the treatment cost?
There is so much going through my head right now... :'( :s :/
Sorry I went on and on... Just needed to get it out. <3
Everything happened so fast initially. I was diagnosed on the Tuesday, saw the breast surgeon specialist that Thursday and had surgery on the Monday! Now I'm home 1.5 weeks after surgery, relieved that the cancer has been removed but frustrated waiting on a treatment plan. It was stage II, ER+ and PR+, and node positive. Do I opt for chemo (there is no way I can afford the oncotype DX testing)? Do I use the cold cap thingy or just shave (maybe I'll dye it pink too!)? What about dose densing (more chemo over shorter time so I can get back to normal work sooner)? Radiotherapy? Hormone therapy? The waiting is frustrating, I just want this all to be over and done with. I'm worried that I won't have enough sick leave left for those days I may need off during treatment. How will I provide for and support my darling daughter? Will I be able to pay my mortgage and other bills? How much will the treatment cost?
There is so much going through my head right now... :'( :s :/
Sorry I went on and on... Just needed to get it out. <3
54 Replies
- SisterMemberHope 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. - PatsyNMember@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.
- melclarityMember@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 Melinda
- SisterMember@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).
- kmakmMember@KatWat Get onto it asap. Nilstat is cherry flavoured, and there's another that's vanilla. I'm not sure if it's prescription or not. Maybe ring yr pharmacy? Perhaps someone can pick some up for you if a script is not required.
- KatWatMemberI think I do have oral thrush, my tongue is white and my throat is sore.
- kmakmMemberOh 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 xox
- KatWatMemberOnly 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.
- HITMemberHi 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.)
- SisterMemberWoww! at work!