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MAY 2021 CHEMOTHERAPY STARTERS

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delly
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok - Ooooo (as oppo Oh) on the Amaryllis. Something lovely for you to look at, enjoy and cheer you. Haven't bought myself one yet! I was just thinking, it's a shame they aren't available all year, but then they wouldn't be so special and cheer up the darker months. Enjoy.

Hope you're managing to stay comfortable. As much as I don't like popping pills, I was very strict with myself in keeping up the Paracetamol levels after both my boob ops, even if I wasn't feeling uncomfortable, thinking it best to "pre-empt" and not allow myself to reach a painful stage. And Especially before bed, always popped a couple to prevent waking myself with any pain from unconscious awkward "ouchy" movements during the night. Hope you get your drain bottle changed asap.

@amy46  - Sorry, there's me calling it a "cold", and it's been far, faaar worse for you. Awww, flower, hope it clears up soon.

Again, lots of love to all you other flowers 🤗 on here,  Delly xX❤️Xx   

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Delly thank you ….. ps I had to go and buy a bulb like that lovely Amaryllis picture you put on here 😁xx

delly
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi Amazon Warrior Ladies

Just a quick hi to you all, and not really wishing to single anyone out, as only caught up on a few of your more recent posts, but:-

@TicTok  - I soo hope you heal and recover speedily from your op, and your results are good/favourable ones for you. 🤗

@amy46 - I agree, your wreath is gorgeous. How very clever and creative of you. Hope your nasty sounding cold clears up soon.

@Love running  - Sorry to hear about your family tensions. Came across this "joke"?! “All the women I love in one room, and I couldn’t be more scared for my life!” !! 🤔 

Hope everyone else is coping with your often grueling chemo treatments and they're are all over soooon for you.

Lotsa love to you all,  delly xX❤️Xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok hang in there too. Hopefully your drain get sorted easily tomorrow and you get all the answers to your questions on Friday.

Not knowing and receiving mixed info is excruciating. Sometimes, the more I read the more I get uncertain. I also found that the oncologists do not give all the info at once.... may be it is to protect us as we can't take everything at once. But I keep receiving new info about more treatment, more SE that were not told before...

But hang in there, stay strong.

Lots of healing vibes to you

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 

I really hope that you won't get the sore feet side effect. Sounds horrific. The neuropathy has already changed our running abilities. Fingers crossed that you won't get the sorte feet syndrome. I have two 'dead' or 'permanently sleeping' toes, and one fake cruciate ligament which affects my running. But I have come to accept it as long as I can run.

I use a very fatty cream called Locobase (it actually has cholesterol in it), it is amazing for cracks on the hands from the cold weather. My girls use it as otherwise with the temperature changes in winter In Sweden, their hands look like raw minced meat. Until I found it, the poor things suffered so much. They used to scream in pain when I applied water based cream. So Locobase is my wonder cream. 

I am worried about the SE of the zolendronic injections... especially the necrosis of the gums. Although it is very rare, it freaks me out as I have had so much troubles with my teeth when I was younger. Now I finally managed to have healthy jaws:-), I can bare the idea of loosing my teeth to necrosis. But let's not think about it 😱.

I did a blood test today ahead of the zolendronic injection to check calcium level. Will you too have to take Calcium and D vitamine supplements?  

I cross my fingers for you to find a decently and cheap camper van. Same in Sweden, the price for them have gone insane. People here have rediscovered the beauty of Sweden (me included) the last two years, so they either bought a camper van or summer cottage. Luckily for me, my parents in law have this beautiful cabin by the lake in the north of Sweden. It is gorgeous but the weather up there is unpredictable. variation between 4 and 28 degrees Celsius in the summer. You never know what you get.

have a nice evening may be checking online for the camper van and route to the north and the south

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Michelle 21 my breast care nurse rang later this aft , I will have to go in the morning to get the bottle changed as they are vacuum filled and can’t be emptied.I keep getting mixed info on my next steps it was saying on the internet that the first one takes 6 hours in case of reaction and talk of hair falling out again etc etc ,I have my oncology meeting next Friday so I will see what they have to say before I drive myself mad ! I hope it’s the same as yours then ….. thank you once again xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hang in there @amy46, the end will come. You are almost there, only 2 left it seems.Like @Michelle21  says at some point our bodies are screaming but stay strong. 

Great that it is not sepsis - the antibiotics will kick in and you will be back on track. Delays unfortunately happen and it sucks big time. Remember you are doing great. 

Lots of healing vibes your way

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok If I was you I would go back to the hospital unit to have it removed or emptied. Mine stopped filling up and was removed but I then had a hematoma which is where blood starts to collect inside so that is something to look out for, report any swelling. It was fine the nurse drained it a couple of times which was a simple procedure and it just stopped then. 
When I was HER2+ I had pertuzamab and Herceptin with my 4 taxol chemo’s and continued with Herceptin for a year after the first one. It was simply an injection every 3 weeks and other than going to get it done it didn’t interfere with life at all. They are both really good drugs which will hopefully prevent your cancer ever coming back. 
@amy46  so sorry you are feeling so awful although it is good it wasn’t sepsis. I hope you feel better soon and that your final chemo’s run more smoothly. I think our bodies start screaming after a while that they have had enough. This treatment is pretty harsh. 
Thats correct it has to be a lipophilic statin. I am taking simvastatin which is lipophilic and the most common statin prescribed. 
Michelle xx

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Amy46 ….. you poor thing 😕you are really going through it aren’t you …. I really hope you feel better soon ….. sending big hugs xxx

michelle 21 just reading through my next stage of treatment it is herceptin and pentuzumab is that the same as you had ? For the HR2 positive xx

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 I’ve just spent a very uncomfortable night on a trolley in A and E ☹️ My temp went up late last night so I ended up admitted today for bloods and antibiotics. I don’t think I’ve ever felt quite so terrible. It wasn’t neutropenic sepsis though, the peg injection was doing its job and my neutrophils were actually high. Home now in my own bed. Got five days of antibiotics. Feeling pretty unwell still and wondering if this is ever going to end. I’d done so well 14/16 without a major setback, worried now my oncologist will want to draw back 😞😞

Which statin are you on? It needs to be a lipophillic one I think. 
@TicTok that amount sounds fund just would have been good if they’d showed you how to empty it yourself like Michelle said xx

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Michell21 …. Thanks for that 😁……no one has mentioned emptying them so I guess I will have to go tomorrow as it will be nearly full , I have just read it says if it’s been in for 5 days go in for removal regardless of drainage  , so hopefully it will be tomorrow xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning all!

@TicTok I had one of my drains for a week and it was about 80 every day and then it just went really low. You said it’s heavy is someone coming to empty it or have you been told how to empty it yourself? I emptied it myself at the same time every morning so I could record how much was there. I’m sure by 7 days it will be out and you will begin to feel much more human again. 
@amy46 Sorry to hear you have a cold, I hope you can fight it off. Relax and let yourself be looked after. Re the statins I told my oncologist I had been prescribed them as my cholesterol is elevated. She said she has no problem with me taking them but her point was if there was any proof they worked for BC they would be prescribing them. It’s kind of the answer I was expecting from her she deals in facts not potential facts. I didn’t get the impression she had read about any interesting studies relating to statins and BC and she also said they come with SE’s to the liver and kidney. I also mentioned I was taking asprin and she said she has no problem with me taking that in a very positive manner. I didn’t want to ask if she thought that would improve my survival as I’d just mentioned the statins! 
so I am going to continue with the low dose that I have been prescribed (20mg) in the hope it does something although the studies identified 80mg as having the greatest affect and I am continuing with the asprin. 
@Love running Good to hear from you but sorry hear your family are causing you stress. Families are funny things I often think the only thing me and my brother share is blood. We couldn’t be more opposite and over my lifetime he has caused me a lot of upset and I don’t have anything to do with him now. Sometimes that is the only way, when you realise someone has such a negative impact on your life. I hope you can resolve your current problems with your mum and sister but look out for yourself and do what helps you the most. We are all still in a very vulnerable position. 
I’m pleased your final RT is done and you can move on to the next treatments and the next step forward. 
I love the sound of running in the woods with you. I am loving running more than ever at the moment it gives me such a feeling of being alive! Do not worry too much about your comfort eating, we all do it. Im sure now you have your mojo back you will be back to eating healthier. 
Thanks for the tips on arriving ahead of midsummers day and spending it further north, it is something exciting to look forward to. We haven’t purchased a camper van yet, the prices have surged due to the pandemic, we are looking online every day for one that suits us. We are also hoping to go to south of France but we do not have a proper route planned yet. They are just dreams in our head for now. 

I have an appointment on Wednesday for blood tests and I will be starting zoledronic injections. I also start my next lot of chemo, tablets this time for 6 months. I don’t think it will impact on day to day life as much but I am a bit worried about the sore feet side effect. Apparently your skin can crack which would call a halt to walking and running if it gets really bad. I’m planning to slather my feet in cream on a nightly basis and hope that they will not be too affected. 

Anyway cheerio for now, have a good day everyone xx

 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Love running I am so glad you have your mojo back and I wish you very good luck for this coming week 💕….. Family can be shit sometimes after all you have been through this year you would hope things could be better 😞best staying home maybe you don’t need stress xxx

can I just ask it’s my 4 th day with my drain and today it was 80 ml it has been quite a lot every day is that normal ?she said not to worry and they will advise me tomorrow 🤷‍♂️It will be full at this rate and getting quite heavy x

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running  I am sorry to hear about your family dramas, but I was pleased to see you had posted. I always enjoy your writing so much and today I’ve been in bed most of the day as I picked up a terrible cold two days after second EC and am feeling absolutely dreadful. I actually don’t think I can remember feeling quite so awful. Sore throat runny nose headache and zero energy just feel totally wiped out and very sorry for myself. Keep checking my temp and have spoken to chemo nurse. Fingers crossed that I’ll fight it off. Feel totally useless though and hate not bring able to do things for the kids. 
Maybe you really should put off going to France for Christmas. You’ve been through so much, maybe you could hunker down with your husband and your girls and save the France trip for the new year? Maybe just put yourself first and choose what you really want just this once? 
Sending lots of love to all of you xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

This week should have been a week of celebration after finishing RT and the end of almost 10 months of heavy treatment. Instead, it has been drama. French drama in all its glory and splendour.

One French song says ‘you choose your friends, not your family´… it has been going in my head all week.

I love my family but there is a reason why I live so far away. While Xmas should be a time of celebration and happiness, it also brings out stress of having to be spending time together. One forgets that even if you are sick and focus on other things, old unresolved family issues just remain as they were and don’t magically disappear. I guess that me having been sick has put an extra strain on relationship between my mum and my sister. It just came down in flame.

Anyway, I have been dealing with this drama and because if this, I did not manage to write, I did not manage to congratulate Michelle for finishing and for having a clear, scan, congratulate Amy on her beautiful wrath, wish good luck to Tiktok on her surgery, enquire Sammy about her French xmas plans (hope you don’t get into the trap of the French drama), tell purpledaze that I could imagine her wonky xmas decorations, as they probably look like mine and thank Fleur on the book tip.

All this drained me of my positive energy and I slid into stress and sloppy eating for which I felt guilty. And when i stress I grind my teeth, now I have pain in my jaw and one of my molar (might need to get to the dentist before I get zolendronic acid on Thursday).

But I took an important decision, if the level of stress and drama does not diminish I will cancel my trip to France and enjoy a peaceful Xmas with my kids and husband in Stockholm.

Below is what I wanted to tell you each one of you… if I would have had the time and the energy.

@Purpledaze I too am hopeless at arts and crafts but love the idea of being crafty…So I never give up and produce 'interesting art pieces' 😂. To avoid serious xmas craft disasters, this year I restricted myself to baking cookies and buns. I made an amazing saffran and almond bun cake – I actually amazed myself. It was a killer. I should have not eating so much of it but it was sloppy eating week.

@Michelle21 On Wednesday I thought about you, about us. I had a beautiful celebration run for us finishing up. Such great news that your scan was clear. I hope you can breath out and look into the future picturing your birthday celebration in 2022 in your camper van in Sweden for midsummer. You will have to come to Stockholm before midsummer day (24-25 June) because the midsummer day, you need to enjoy it more north to get the full experience of the longest day in the year. Also Stockholm is empty on Midsummer day, all the locals leave to the country side. You don't want to be surrounded by tourists 😉. I will be more than happy to show you around Stockholm and even up north. I would also love to take you running in the woods around the lakes close to where I live in Stockholm. Btw, may be your camper van will also take you all the way to South of France and you could visit me down there too to a place called La Londe les Maures (true for all of you laides).

Isn’t it funny how exhilarating it is to run in a group ? I love running alone with my own thoughts (a bit like meditation) but I also get so high from the group dynamic. I have improved my running technic, skills and endurance while running in a group. You get a kick from the encouragements and from a bit of competition 🙂 – you know the : if she can do, I can do it too… I am glad you are enjoying the running club. Going back to Forest femmes on Wednesday next week if I am not knocked off by the flu vaccine (I will get it on the same day). Regarding cholesterol, I definitively should not check it this week because I have been so sloppy eating – so many cravings due to stress. It was too hard to resist, so I thought that it is better to allow it once in a while. I also might need counselling to deal with the stress eating.

@amy46 your wreath is gorgeous and as I am not as talented as you, I bought one instead . It was for a good cause too, as it was at my daughter’s school Christmas market. Each class had a stand selling something for either charity or for sponsoring a class trip. My daughter's class sold crêpes - and guess who had to help with crêpes mix 😀

Speaking to you as an anaesthetic consultant, I got the same anaesthesiologist for both my BC surgeries, a guy with Salvador Dali style moustache and great sense of humour. I will remember him for the rest of my life. It still amazes me that one second I was awake and joking with the guy and the next I am waking up elsewhere and few hours have passed and no recollection of it. Right now, I wish I could do that. wake up few days or years later and have forgotten the time in between.

I concur with Fleur, the 3 valleys are a dream destination for skiing. The options are endless, you can ski at Les Menuires or go down to Meribel, or Val Thorens… or go over to Tignes. You are a snowboarder. Me too. Well, I did not snowboard much the last couple of years as I took up skiing again (not successfully as I managed to break my cruciate ligament in Feb 2020). I started skiing again to get on the lift with my eldest one. In Sweden, there are almost no chairlift, it is mostly 2 people anchor types. My husband is tall and it was too painful to ride with her. I had to do it but with the snowboard it was a bit hard. I have been thinking to pick up snowboard again this year – may be gentler on the ligament. We will see. Otherwise I will just country ski. My husband is trying to convince me to buy a new snowboard as mine is 20 years old… He claims that technology has probably improved and I would enjoy it more. He might be right but I love my board with an evil rabbit on it and my flow binding (although it really makes me look like the old fashion snowboard granny by the youngsters). Still three months until then. Meanwhile I will resume my knee rehab and see what my physiotherapist says about skiing and snowboarding and the stability of my knee.

@TicTok I missed wishing you good luck for you op. Another giant step accomplished. I hope you will get over the pain soon. Crossing my fingers for the results. Waiting is excruciating. 

@Sammy73 One more week has passed and I hope that the soreness from RT is gone and eased. Not sure if the plasters I have been given are working wonders or it is a placebo effect. But with the exception of being red like a big sunburn and some itch, I am fine. It is only few days since I finished. I also been told to use a cream with some cortisone if I get serious rashes. No name though. It might help too. OMG - tell me more about your French style Christmas. I hope it is not like my French Christmas, always full of drama… Nice food and wines and pretty clothes but always mixed with dramatic tears, screams and old rancoeur. Like a Vaudeville between my mum and my sister! Very tiring. I wish you the nice food and wines and pretty clothes.

@gardengirl200 I love your approach to skiing, I do pretty much the same but switch the morning coffee by an afternoon one in the glamour cafe or if spring skiing on a sunny terrace. I agree that the prices on the slope are just insane. The same everywhere. 

In Sweden, they have installed grills on the slopes, and you have complementary woods next to them, so you can start a fire and bring your own sausages and grilled them. We usually finish the day with grilled marshmallows and hot chocolates. I love this concept and it is really fun for the kids. Did you get an explanation for your veins? Thanks for the tip on the book, the Science of nutrition. I will look for it. I need to get a grip after my week of sloppy eating.

 

On a positive note, I found my mojo back today and went for a short run to the outdoors gym and trained for an hour by - 6 degrees. I just love it.

Wish me luck for the coming week, less drama and no side effects from flu shot, tamoxifen, hormone treatment and zolendronic acid, all planned this week. 

With that long message, I wish you all a nice end of the day. Lots of love to you

 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Amy 46 lol I was ok the first night but quite sore now ….so I am on them 👍

thanks ladies for your good wishes and always being there 💕

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Glad you are home @TicTok and the operation is done. One less thing to deal with! Hard to have to wait so long for results but hopefully Christmas will provide some much needed distraction.

Take care and hope you're not feeling too sore - @amy46 advice about painkillers is spot on!

Take care xx

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Purpledaze…lol well I would if I didn’t like it I just hope I can taste it 😁🙄

well opp done got my bag and drain attached got home at lunch time, think it went ok but don’t get my results till the 29th so that’s going to be a long wait 🤔
love to all xx

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok also thinking of you today. Top tip - take all the pain killers on offer 😉 I think I might have mentioned previously that I’m an anaesthetic consultant and I must confess to saying I was a bit sore in recovery just to get a bit more fentanyl! I figured in nearly 20 years of giving anaesthetics I’d never had one so I might as well enjoy it!! Xx

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok Good luck today with op! Xx 

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok every year I say I will make a Christmas cake, but it never happens! I suspect not really liking Christmas cake doesn't help 😂😂

Thinking of you today for your surgery. Hope it all goes well and you are soon home x

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Just a quick note again!

Barbara congratulations on finishing. Rads, I thought of you as I lay on the bed machines whirring. We are another step forward!

Tic tok I hope the op goes well. Let us know x

Fleur I hope your mum has power now.

I hope this note is ok I’m not wearing my glasses! X

 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Ps. Scrap the above … I’ve just seen option above  to add photos 🙄

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@amy46

your wreath - absolutely beautiful 😍

ive not worked out how to add photos to these posts .. any hints? 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Amy 46….. thanks for the good wishes , your wreath looks beautiful really nice and you describe how it us for us perfectly, that is what I say to my friends it’s like you are there but not 🤔…. Sure we will get there eventually…..I have made my Christmas cake this morning which is looking good ….another job ticked off .

love to you all xx

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

745749E9-9F1E-4446-A15F-8CE97E8285AB.jpeg

@TicTok wishing you the very best for your surgery. Another step closer to recovery. As I say to my teenage daughter when she gets a spot, no one else will notice as they are all far too occupied with how they look so don’t give your veins another thought! I’ve never met any of you but in my head you are all beautiful 😊❣️

I really enjoyed my wreath making yesterday although I have to say, I still never feel quite present, it’s like there is an invisible screen between me and reality. Im

almost there but not quite. Hoping this will improve with time 😊

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Michelle21 brilliant news so happy for you 😁glad you are feeling better x

purpledaze I hope the crafting went well nice to do something festive x

amy46…hope you also had a good day crafting ….. a couple of my toe nails look like they might come off also ! They are horrible not black but one looks a bit infected x

gardengirl ..sometimes I think my veins feel like guitar string they go really tight and big at times so  I look even more like a freak x

sammy73 the more I here about radiotherapy the worse it gets ! I thought that was supposed to be the easy part now I am dreading it 😏

well I had COVID test today ,now isolating till Thursday for my opp , will be glad when this week is out the way .

love to all you ladies and take care x

 

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

So nearly 3 weeks after radiotherapy omg um still sore as xxxx in certain areas!! 

The nurse has given me gel medi honey dressings all sorts as I'm had different areas sore. My neck is a turkey burnt crispy mess!! Done everything!! Now taking my own deal  sudacrem!! Worked for a hour longer than anything else!! Just saying xx  night xx

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Sammy73 ,@loverunning , @amy46 
Hi all, how funny so many on this group into skiing! 
someone was talking about nutrition?? If u find a nutritionist  you like, could you let me know?? I hear such conflicting stuff. There is a book coming out in Dec, the Science of nutrition.  I think the author is in the ‘everything in moderation’ camp and there is no cancer angle so it’s probably quite mainstream. But I did see a preview page which recommended having at least 30 different plant foods in a week so I’ve been aiming for that, and at night, to help me get back to sleep, I lie in bed and count them up! So ticking two boxes there! 🤣

happy Sunday everyone xx 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Linda Corinne @Thank you for this. Sounds like u had a pretty good experience with the surgery. I think a diep flap will be my only option. I may go privately for an initial fact finding consultation just so I can at least get info while I sit on the NHS waiting list. Thank you again for coming back to me. 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 The crafting sounds great fun! 

yes a little snow here.. But wind been the big issue.  I’m just back from my mother’s in Callander ( a village half an hour from me) and she only got power back this morning after power cut on Friday eve. Hundreds of trees down around here. Much worse than coverage on news might suggest.  All quite exciting. 

xx 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@amy46 How nice to have the ski break to look forward to. 3 valleys such an awesome area - my son is going to Val Thorens early Jan along with about 300 other Glasgow Uni students so I hope u r going later than that! That whole area has fab slope cafes. My approach is to have morning coffee stop in the nicest / most glam cafe I can find  snd lunch ( usually a bowl of chips) in the cheapest. I am Scottish after all so i can’t fight my DNA😜.  

I have lost my 2 big toe toenails. They didn’t go black but they fell off after chemo and rads had finished. The second one just last week. They’d obviously been weakening for months. Looks awful but not sore cos I think the skin underneath had already prepared itself. I have deep ridges in all my other nails. Hopefully if u can keep the nails on for a while the underneath skin will gradually prepare itself and be less sensitive. 

I have an issue with the veins on the arm I got my chemo put in to. In the last 2 weeks the veins seem to have tightened and now I have horrible vein shaped ridges from my wrist to my elbow in that arm. I feel I look like some reptilian creature out of Dr Who. And it’s weird cos I had my last chemo on 24/8!!! I think I will phone my BC nurse tomorrow but I can’t imagine there is anything they can do. I just hope it doesn’t get worse. Sigh. 

Hope you cope better and better with the remaining EC. Xx 

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Thanks for all of your good wishes!

It good to hear everyone moving on a little and making plans. Enjoy your craft days, they seem very popular at the moment. I did fused glass making the other week which was very therapeutic, concentrating on moving tiny bits of glass around instead of thinking dark thoughts. I have a Christmas wreath making session next week and in January am doing lino printing on cushions. I’m not very creative or imaginative but really enjoy these things, they bring out the inner child! 
Sammy, a themed Christmas, what a great idea! Tell me more, what are you cooking, wearing and doing? I’m sure Barbara can chip in on your French theme! I might steal your idea I’m looking for ways of mixing up this Christmas. 

Enjoy the rest of this cold but beautiful weekend, do you have snow Fleur? 

Michelle xx

 

 

 

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Morning on a very cold crisp one!! 

Lovely to hear all are feeling a bit more chipper and maybe the festive season will help us all!!

Great news @Michelle21

@amy46 @Amy4 my nails are lifting as new cells and nail are trying to clear the chemo out !! Keep everything moisturised. My little toe nail fell and nails in general quite painful.

We are skiing in Bulgaria in Feb with a group of friends we have been with b4!! Probally won't ski just enjoy the views and food.

We are having a French style Christmas which I'm very excited as we are dressing up!!

 

Happy weekend everyone xx

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21  Wonderful news my lovely, such a happy post to read, I am really delighted for you 🌸 

@Love running we have booked a catered chalet with my in laws and the kids in me who is only 23 and very ‘cool’ 

It’s in Les Menuires just below Val Thorens. Im not sure yet if I’ll be fit enough for snow boarding but if not I’ll be doing lots of lovely alpine walks. We missed the last two years so I’m looking forward to it

@Purpledaze  I’m going to be crafting on Monday too! My friend has organised a wreath making afternoon for me, my lovely mum and another friend so just four of us, covid safe etc. I’m really looking forward to it.  
I am picking up a bit more each day after my last EC although I can’t see myself getting back to running until I’ve finished now. I’ve read that some people have had quite different side effects after each EC though so who knows! I figure I can do this now however horrible as in five weeks time I’ll be done. Christmas in between to keep me distracted too. 
On a separate note one of my toe nails has gone black! Anyone else have that? Will it fall off?? Xx

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

That's wonderful news @Michelle21 - so happy for you and absolutely do revel in the 'brightness' of this result! I feel lighter just reading this news ☀️🌝

Your plans for travels sound fun and long may the endorphin blast last!

I'm going to a Xmas crafting weekend down the road from where I live. My lovely sister in law and my niece invited me. I'm hopeless at arts and crafts, and with my wrist still sub-par, I suspect the outcome will be some seriously wonky Xmas decorations, 😂 but lots of laughs for sure and that, as we all know, is very much what's needed!

I hope everyone finds some laughter this weekend xx

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Oh @Michelle21 I’m so so pleased for you!! That is wonderful news. 
yes, we have had to ‘take’ the bad news so when I had my clear scan I allowed myself to ‘take’ the good news too. It is something to be felt, enjoyed and celebrated big time!! 
I will catch up on the other posts shortly but I just wanted to reply to this wonderful news now. 
Fleur xx 

 

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hello all! 
Great news my scan was clear. Obviously there are no guarantees but I feel much lighter going forward. Like you said Fleur I am feeling good now so going to live life as much as possible!  
Unlike everyone else here I haven’t booked a ski trip however we are planning an extended trip around Europe in a camper van for the summer. First though we need to buy a camper van! I am also still hoping to be in Sweden for my birthday (treatment dependant) in June so if that tour of Stockholm and info on the best place to spend midsummers day is on offer Barbara then great! I was so pleased to hear your enthusiasm for running with the run club, I am loving running with mine last week my husband couldn’t believe how buzzing I was when I came back especially as I was so low when I went out. It’s amazing what an endorphin hit can do for you. I once heard if exercise was a pill everyone would be wanting it, lucky us for discovering it ourselves! 
Purple Barbara I am pleased things are looking up for your husband I hope that continues. How are you doing? You seem to be coping well. 
Amy glad you are feeling a bit better not long to go now. 
Sammy sorry to hear you struggled a bit after rads, I hope you are feeling better. I wish I had know about the plaster Barbara recommended last time as my skin was a mess than but I will certainly keep a note of it in case it gets worse this time. 
Interesting your Cholesterol was high too Barbara I will let you know what my oncologist thinks of my statins/cancer connection. Whether she poo poo’s it or thinks there is something in it. 
sorry this message is all over the place I have written it in a rush as I am just heading out for RT but wanted to let you all know my results. 
I hope you all have a lovely weekend! X

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

A tip for those undergoing RT:

I have been given a plaster by the nurse to protect the irradiated area and to help with the itchiness and the rashes. It is called Mepilex Transfer (https://www.molnlycke.com/products-solutions/mepilex-transfer/).

It doesn't contain anything active component, it is just made out of silicone. It makes a soft layer on the skin and it prevents the sensitive area rubbing against the clothes. It worked pretty well for me at the moment, especially since I sweat a lot from the hot flushes and from training. What is also good about it, is that you can remove it and place it back few times.

Only 4 RT left for me now. 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@amy46 Great that you booked a ski trip. Funny as this May group seems into skiing 😃. Where about? I would love to ski in the Alps but for the time being we will continue to ski in Sweden as it gives us the occasion to spend the week with my husband's parents. The kids adore this week with their grand-parents, and we too actually. My parents in law are great, because they don't ski themselves, they cook and take care of the dishes and the grocery. This means that we can focus on skiing...

Doing ten thousand steps each day is great. I love too being outdoors even when really cold- something I discovered in Sweden : 'there are no bad weathers, only bad clothes' they say here.

Good luck with the EC - I am glad you are feeling better and I hope you can enjoy the rest of the week until the next one. 

Have a good day

 

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running  That’s so great to hear! I am really happy for you that you were able to get out and do this and that it’s made you feel happy 😊 

I turned a corner today and haven’t felt quite so dreadful this afternoon. My oncologist said I ‘need’ three lots of EC three weekly so by giving be four two weekly it’s kind of more than I need so if I can’t tolerate it I can step back. To be honest if I feel shit for a week but kind of ok the next week I’ll just crack on. Not sure I’ll get back to running in between but that’s ok. I’ve still been doing my ten thousand steps each day which for me is important for my mental health. I just like being outside 🌸

 Sending you all love and positive energy 💕

Oh and I booked a ski trip  

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good evening

After few days of extreme fatigue, I pushed through and forced myself out tonight and join the forest femmes group for a night run with headlamp. It was exactly what I needed to get back the energy and put a smile on my face.

I join the beginners/slow group and we run together 6.3 km in 1h through the woods on trails in the dark. I also used my shoes with studs as frost and a bit of snow laid on the ground. Last time I used them was in February 2020 in preparation for a day and night trail week-end. 

I had not run with this group in 2 years and I had forgotten how fun it is. Going back next week. it sounds nuts to run in the dark with headlamps but it is just so much fun, especially in a group. 

I just wanted to share this moment of pure joy. 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning 

@Michelle21 It was nice to hear from you. I hope that your scan brings you good news. 

I second what you say about needing a break from BC. I just don't know how. I feel that BC is consuming every aspects of my life. I am going to see a psychologist tomorrow to talk about how to get on with life after cancer. My emotions are all over the place and it is overwhelming. May be it is because I am incredibly tired from RT. This affected my training and running and I guess in turn it affected me emotionally.

I started to have a sensitive and itching skin but, I have been given a special plaster by the nurse that should help. Only 5 RT for us, I too will think of you and definitively want to celebrate it with you. We have done so much road together 💕 

@amy46 @Michelle21 your discussion on cholesterol got my attention because I have had an increasing cholesterol level the last 5 years with the highest peak in February, right before my BC diagnosis. Beside the advice on cutting on my French diet (cheese, butter, red wine and read meat etc), my GP worried that stress from my work was one factor behind this increase last year and she started talking about statins. I worked insanely much in 2020 under very stressful conditions. I guess I would need to check my cholesterol level when I am done with RT. 

@amy46 I hope you will feel better soon. Like you and @Purpledaze, being still is not who I am. Hence, the despair of being so tired. I started baking Christmas cookies, thinking at least I choose which ingredients and how much sugar I put in them. I am going to give them away to the people around that were supporting me the last couple of months. A simple way to say thank you and also the solution for not eating them myself. 

To all of you great ladies, I wish you a wonderful day

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Purpledaze 

Thank you. I still feel dreadful but am hopeful it won’t last the whole two weeks. I’m still getting out for shorter walks but I feel so weak and light headed. It’s just so not me. I’m trying to be accepting that this is just how it is for now. I’m getting to spend a lot of time with my mum which is lovely. I just need to be better at tucking up on the sofa and not feeling I should be racing around. I know I have been much luckier than many with side effects so far. Maybe the EC is hitting me harder because I’ve already had 12 weeks CP who knows.  
Ive been making some Gousto meals so similar to your baking thing, ingredients delivered and instructions simple. Last night it was a vegan mushroom and leek pie, surprisingly yummy for a vegan dish! 


love to you all xx

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@amy46 sorry you're not feeling good. It's so hard when emotions and physical symptoms collide, and it can all feel overwhelming. I admire your strength to call it out and name how you are feeling, although I suspect it may not feel like strength to you.

If it's any comfort, my first round of EC was tough, but I did start to feel better after the mid point. I also found the steroids made me very emotional in the days immediately after i had finished taking them. Horrid things!

Like you I struggled to rest - I need to feel like I have achieved something in a day, and resting just doesn't tick that box for me. Weirdly I found baking helped - following a recipe was just right for my flighty chemo brain, and having something to show for my efforts at the end helped me feel productive. I didn't always feel like eating the bake, but the neighbours were happy with the baked goodies!

These are things that helped me and of course you may just feel too rotten for any of that (or simply hate baking!)

I hope you start to feel better soon and that some good days are just around the corner for you. Sending positive energy, sunshine, and hugs x 

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@gardengirl200  I can understand why you don’t like the book it’s a bit mind boggling. I kind of wish I hadn’t started looking at it really. 

I am feeling really rubbish. Really hoping it won’t last the whole two weeks before next dose. I’m so bad at resting though. Just don’t really know what to do with myself. Was really tearful yesterday it’s so hard to stay positive when you feel like crap isn’t it? Hey ho xx

Linda Corinne
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

It was hormone receptive 8 out of 8 for Oestrogen IDC.i had 2 lifts one on each side as I didn't want a mastectomy and it wasn't necessary when I got 2nd opinion from The Marsden Surrey (there are 2 sites). I was going to see someone to discuss an immediate reconstruction to see if it was an option (a diep) but cancelled it. So had surgery for afew hours and 3- 4 weeks recovery. I was too well defined to use my back I went private initially then they helped me change to the NHS. My lollipop scars are minimal now. I kept my nipples which doesn't always happen not sure why. I will have to have another lift on good side 5 years after initial op probably. 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 

I completely understand re the CT scan; I was sick with worry. I have everything crossed for a good result for you. 

@Linda Corinne 

What type of BC did you have? . My lump was 50mm, so similar to yours, and I had mastectomy. Did you have the same and then reconstruction with a lift ( in my case will be a reduction ) on the other side? I’m curious how well they can be matched! Where is your good surgeon based. Is he/she NHS or private? 

@amy46 

No, I’m not TN. Mine is lobular ( rather than ductal) ER+, PR+ and HER -.  lymph extracapsular. I’ve just had a look at that Clinic as I’ve never heard of it before. I did try to read Jane McLellsnds book, How to starve cancer,  but it isn’t for me. Totally stressed me out. I am going to aim to eat as healthily as I can, basically lots of fruit and veg, with the odd treat because honestly my will power is utterly hopeless so I will be delighted with myself  if I just stick to the major cutting back I have done on alcohol, dairy, crisps, sugar, processed food. I’m not sure I could take to the next level. but I do  need to be careful I don’t slip back into bad old ways. 
Hope u r feeling ok on the EC and that sleep not too bad. 
Fx 

 

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21  It’s good to hear from you. I can understand if you’re needing to take a break from these forums as they can be quite consuming. I haven’t talked to my oncologist about anything yet, she was so dismissive last time but I have been looking at the care oncology clinic and i signed up for Jane Mclelland’s online course. It’s quite complex but I’m slowly working through it. I definitely think a statin would be good though if your cholesterol is a bit high your doctor should prescribe. Ask for a lipophilic one though. They have started a big trial in the states looking at atorvastatin and early TNBC.
I’m floundering around not really knowing what to eat so I’m thinking of seeing a nutritionist at some point.

Managed quite a long walk today so off to bed now. Fingers crossed I get some sleep after the steroids x
 

Linda Corinne
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Just read through the thread as I met Michelle in 2019 afer going through treatment in 2018. I have reached 3 years I guess although my last mammogram was August and my op was October. I had surgery in May 19 to lift my other boob. Certainly sounds like you have had bad luck Michelle. Sorry to hear about your Mum. Was she diagnosed before you? My cousin's Dad died when she had cancer the first time too so wondered if there is a link. Anyway sounds like you are helping each other through this ordeal. I think my mind has blocked out alot which someone else said to me. I am having my eyebrows died today as they didn't grow back fully I have realised. Maybe due to chemo or Letrozole and if that doesn't work they can recommend someone who does microblading I think it is called which is semi perm although expensive. I am still in touch with May 18 ladies. We chat about useful stuff now and then. A useful piece of advice is it is safe to use oestrogen cream if sex is painful although that is something I havn't got round to trying yet. It doesn't get talked about as much as it should be but I asked my consultant last year so you do have to be pushy sometimes as not everyone is up to date with recent findings. My Boris was 51mm and I had my boobs lifted by an amazing surgeon as I got a second opinion. Anyway take care and hi to Shi.xx