On a positive though I no longer have a slimy tongue and my taste is definitely coming back 
x
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@tinatin Iāve never seen Lucia di Lammermoor but itās given me the shivers just reading the story. Thatās one to put on the list for me then. I think we all have to live from one week to the next at the moment and take those minor wins wherever we can.
@kartoffel the emotional regulation is a problem, itās true. Chemo day does a number on me. The minute I am given that antihistamine and steroid intravenously, I get spaced and then by the time I go home I am distinctly irritable and in tears by bedtime which is usually the sign to do just that. Itās like I have the steroid response but on a minor scale due to the small dose. I am really pleased you have been discharged from hospital and extra thrilled that you have been able to almost taste the pretend Doritos. A good sign.
@kitty77 You have every right to feel a bit sorry for yourself after what youāve been through lately. Keep us posted with your progress. Iām willing you on. Iām with kartoffel on the sleep thing. I have Zopiclone and would not have made it through this time without them. We need our sleep. Everything is thrown out of balance with sleep deprivation at the best of times. Big hug to you. (Although I am mildly jealous of your current tongue health!)
XX
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@kartoffel so great to hear that youāre back at home!
My whole experience with chemo has been surreal. I pretend to lead a normal life as long as I can - going out for dinner, theatre, opera. The only difference is that I donāt work at the moment and perhaps after 10 years of late hours and stress my body is so thankful that it treats me well.
This whole experience has changed my perspective on life, I try to enjoy every moment. My husband (who was a high-flying lawyer at a city firm before my diagnosis) left his job and now works for a start up for half of his salary. At least we can now spend time together and enjoy every day. Iām lucky of course that I continue to receive my full salary and thatās why we can manage financially.
Iām lucky that my taste hasnāt been affected by Taxel and Iām really into cooking at the moment. Again, not something I was doing previously when getting home after a client meeting at 10pmā¦
Iām afraid of the EC and what it brings but right now I just pretend Iām on sabbatical I guess. Checking last minute tickets for Long Journey into the Night for this week, fingers crossed I find them!
@tinatin Iāve been trying to keep on like normal but just in terms of training, working and not telling anyone I have cancer. Maybe I need to take a leaf out of your book since itās clearly working for youā¦ 
I guess different things work for different people, I simply decided to be selfish during this period and prioritise my body and its needs. I actually tell everyone (ok maybe not everyone 
) that I have BC, I take all the support that I can get! At least my friends then find time to go to the theatre with me on a workday which is quite a favour because of their crazy working hours. If I canāt go somewhere because Iām a bit unwell, I just sell my ticket or ask my friends to take someone instead. For me personally it is very important to have something to look forward to, some small trips and events. I just refuse to have 2024 as a write off.
This week itās finally sunny and Iām planning to go for a hike around Whitstable and enjoy some sunshine. I havenāt booked anything but we can book tickets on the day with a Railcard. Just thinking about it makes me happy. There is a word in German, āVorfreudeā which means to be happy now in anticipation of something happening in the future (strange concept, isnāt it? But it works!). Now I deliberately create events in the future to be happy now, even if some of it may not happen or get rescheduled.
I donāt really exercise though, I get exasperated after 5 minutes, so itās just walks and cycling for now. Iām also saving my fat for the DIEP haha 
Hi Vibby
I had the same side effects post docetael. Frequent trips to the loo and passing a lot of wind. I have reduced fiber-rich foods and it did help.
Also had body pains for almost a week. They advised me to take paracetamol and ibuprofen which I did.
Regarding the pain on the wound site, I had few shooting pain whilst on treatment. Iām not too sure if this is one of the side effects but will defo discuss this on my next review.
x
Iāve got a bottle of bubbly in the kitchen that Iām planning to drink at the end of chemoā¦ Iām really looking forward to that 
I think I would be more like you if I hadnāt had the year that Iāve just had. Before I got diagnosed, we had a house fire which meant we were living in temporary accommodation for 9 months, then my husband lost his job, we got scammed out of 12k by a builder in the rebuild, then I lost my job and then the week we were supposed to move back into our house my husband hit a deer and totalled the car. If I had a pound for every time we planned something that didnāt happen, I almost wouldnāt need to win the lotteryā¦ I think I just need to plan things that donāt have a specific date component.
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@kartoffel so sorry to hear that, everything youāve been through is horrendous! Oh my, and BC on topā¦ itās simply unfair.
Thanks for sharing this. I do hope that things will only get better from this point!
It is very difficult to stay positive when so much happens. Do you have access to therapy, perhaps online? Sometimes it helps just to vent for 1h, unapologetically.
Youāre so brave and strong and it will definitely get better!
Oh my goodness @kartoffel - How is it possible to have such a run of outrageous misfortune? Iām so sorry youāve been through all that. And yet, your sense of humour hasnāt left you. That always comes across from you. Here is yet another virtual hug from me. I look forward to the day you open that champagne!!
I tell people that I have BC too and after leading such a frenetic existence for so long, I am now actively enjoying having a bit of a holiday from life. I carried on working through Covid and as I sell messaging software, I was really busy as that is what everyone was doing. Also my drama classes went online and lots of kids did them as their parents wanted to fill their time so I was working Saturdays too. So this feels like the first time I have stopped and made me my priority since back in my 20ās. I try to have things to look forward to (love that word Vorfreude @tinatin and also love Whitstable!) but I make sure I space them apart so I donāt get overtired or overwhelmed. Today I have a reflexology session at MacMillan Centre. Itās actually free! And then I have Ā£200 to spend on post-surgery bras courtesy of BUPA so Iām going to ruddy well spend it all! Although Iāve been told not to spend it all before the mastectomy as my needs will change. There are some lovely things to come from getting this crap disease. Iād say a hike around Whitstable definitely counts as exercise, by the way. I think your attitude to refusing to have 2024 as a write-off is great. It may be a cliche but going through this absolutely definitely makes you review your priorities and I am determined to have more fun after all this. No putting things off until āone dayā as āone dayā is not guaranteed.
@starapple Let us know what they say about pain at the wound site. I had some little pains there yesterday again. I must put that on my list to ask about too.
The sun is finally shining here which makes such a difference. I finish work at 1pm today so I canāt wait to get out in it.
@kitty77 How are you? And you @shonas? And @Vibby and @taniak and @sammybp and @healing24 ? Iām like a Mother Hen! Cluck-cluck-cluck!! 
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@salbert weāre lucky to have you in our thread, your messages always fill me with joy!
Iām getting my treatment today (weekly Taxel) and this time round they decided to give me an iron infusion, letās see how it goes!
Iāll post some pics from Whitstable if I get there. Totally agree on spacing things out, this weekend I stayed at home the whole weekend and my plans to check out Tate went out of the windowā¦ but I had great short ribs for dinner, they were particularly tender after 4h in the oven! Anyway, short ribs might have worked wonders for my hemoglobin, as it has gone up since last time round. Sorry everyone having issues with their taste buds, I might get there too and try to enjoy while it lasts.
@salbert thank you so much for asking after me 
I love reading all your posts and everyone elseās too. Itās lovely to hear all the nice stuff Iām and amongst the crappy parts.
Unfortunately Iāve felt very defeated the last couple of weeks. My lower face is still completely numb after Docetaxel and nothing has helped. Iām seeing my oncologist later today and not sure Iāll be having another round! I need him to get to the bottom of this problem and worried what it could be and also what more of the drug could do.
Iāve booked to visit Chester on 15th May for a long weekend and Iām really looking forward to doing something nice. I also have champagne on ice for when Iām done 
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@salbert cluck cluck, its great to have a mother hen in this group!
Feeling a bit less achy today but still taking the pain killers!
Its actually warm in Edinburgh today but a bit cloudy, still will take that and hopefully out for a walk this afternoon albeit slowly 
.
I am also not planning to write off 2024 and have started planning for later in the yearā¦a long weekend away with friends and a music festival ( 80ās) so far, might not be able to dance the whole day at the festival but going to give it a bloomin good try. Think I will buy a neon wig to wear. X
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I probably would benefit from some therapy but I havenāt found a good therapist yet. The last one I tried just annoyed the fuck out of me and I havenāt felt the urge to try againā¦
To be fair, everything thatās happened in the last year has resulted in us ending up in a better place than where we were before - we luckily had good insurance and were able to put the insurance settlement and our redundancy payments into our beautiful new house, we both got better jobs and a new car and the financial ombudsman forced our bank to give us our money back + interestā¦ and then when Iām done with this cancer malarkey, Iāll hopefully have some great new tits out of it and some cash from Bupa to put towards my trip to Japan because of their NHS cash benefit @salbert I missed the part in my booklet about the money towards bras and wigs until I read your message. After everything thatās happened in the past year, I love insuranceā¦
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I also just mentioned to my husband that Iāve used every single insurance that Iāve bought in the last 2 years and he just joked that maybe we should stop buying insurance
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Hi everyone looks like youāre all powering through. Whatās youāre all describing we also went throught it in September chemo starter. The papier mĆ¢chĆ© tongue, the fatigue, diarrhea and constipation, the crying omg the cryingā¦ And more. It does get better eventually (key word!) I am 10 days post radiotherapy and 2 months post op (lumpectomy) TNBC and had neo adjuvant chemo. My taste buds are better but not what they were - as in I like different things now?!- I also have had a chicken nuggets beige phase (life saving btw lol) and marks and Spencer do some delicious ones!
Some of you are having transfusionā¦I had multiple ones. To give you an idea, I am back to 113 just today!!! Still minus but not 80/90 where I seem to be and my neutrophils is still low but thyroid has finally stabilise hurray. So it takes timeā¦
You can get mild fever and be tired post transfusion thatās normal but watch the fever, shouldnāt last more than a day.
Aches and painā¦ Oh my. Yes does happen too but it passes.
For those on movicold I found that taking it a day before helped rather wait for treatment then take it. It works slowly.
All the best . Big hugs 
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@shonas an 80s festival definitely sounds like it needs a neon wig. I got a green, wavy/curly wig from Shein that I havenāt quite had the courage to wear out yet but I think if I go to any festivals this summer then I might have to pull it out.
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Haha I love how your husband jokes about the insurance! It does pay off to have it, I take everything that I can get out it it, Iām with you!
Thanks @salbert for flagging the bra allowance, Iāll check out my policy too. I had a nice allowance for my wig from Axa which I did spend on my wig in full.
Iām picking up my wig this week (hopefully! There have been so many delays) and hope to post some pics here. I still have enough hair to pretend that I just have thin hair (and not a cancer treatment) but with 4 cycles more to go I donāt think Iāll get there without a wig. Still need to buy a baseball hat 
@salbert, you are just great! thank you for checking in, Iāve been using my little chemo vacation eating everything that EC killed my appetite for in the hope that all that the food will help with my HB and neutrophils.
@tinatin I didnāt plan on telling anyone past immediate family and my closest friends, they on the other hand went on to spread the news to everyone who knows me. I was a little annoyed at first, since I canāt change it, I am embracing all the love and time coming my way
@kartoffel Iām sorry last year was so difficult but hooray! to things working out apart from this BC sneaky bastard ofcourse.
@shonas a music festival sounds great and a neon wig even better! If we have to wear wigs, might as well have fun with them. In my pre-chemo-took-all-my-hair life, I was quite conservative with my hair. With the wigs, Iām trying to go crazy with colored hair and stuff like that.
@sammybp Iām keeping my fingers crossed that your oncologist figures out whatās going on today 
Caught a little bit of a flu but Iām feeling so much better this week, this weekās chemo can go ahead.
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Hi everyone
Iām feeling quite good today @salbert thanks for asking.
Managed to get out in the sunshine with my little dog 
heās been great company throughout especially days when Iām in the house on my own.
Also managed to get some gardening done today too which I love 
lawns cut and planted some strawberries and tomatoes then had a snooze on the sofa until my son came in from school!
Appointment with oncology tomorrow hoping they say I can carry on with this chemo but I suppose itāll depend on how my liver is doing.
Iāve got a bottle of champagne ready for after chemo too and Iāve just sent away for our passports renewed today so going to definitely plan a getaway late this year.
Onwards and upwards iām lying in bed now looking at holidays 
my little pal is keeping me company. Heās not even meant to be on the bed 
Xx
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@kitty77 What a cutieā¦ heās like, how can you say no to this face? Good luck with your oncology appointment today.
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