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MAY 2021 CHEMOTHERAPY STARTERS

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

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@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

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi everyone

Im sorry I haven’t been around much it has been a combination of things. I have been trying to keep myself busy and distracted from BC as emotionally I have been very up and down. Today I have a CT scan so I am really hoping for it to show nothing. Apparently it is the protocol before I start taking capecitabine but either way I am terrified about it. I know you felt the same not so long ago @gardengirl200  before you had your tests, I am hoping that like you I get a good result and it helps me to move on a bit because although I consider myself to be fairly strong physically & mentally I feel absolutely drained from this year and would really like BC to be less consuming in my life. The mental torture of always thinking about it and the what if’s is exhausting. I get the results next week. 
I didn’t like to say this before as everyone was coping with RT so well but last time I had it my skin became incredibly sore and broken afterwards, it did heal but took longer than I thought it would. Last time I had 20 sessions, this time I have 15 because of the mastectomy so I hope it won’t be as bad. It will get better @Sammy73 but you may have to be patient. I think the worst point is 14 days from finishing RT and then it will start to gradually repair. 
@Purpledaze  great your husbands tumour has shrunk, I hope you have good news from him scan. 
@Love running sorry you also have been feeling low and unwell with a cold. I am glad you are on the up, I feel a bit suspended at the moment but hopefully I too will be on the up with some good results. You are very good at listening to what you need and I’m sure you will nurture yourself over the next few weeks, my last RT is also on the 1st Dec, I will think of you on that day and we can celebrate together! 
@amy46 how are you doing? You mentioned asprin to @gardengirl200 I have been taking 75mg of asprin since my surgery. I know lots of people who are on post BC treatment asprin trial so decided to take it myself. I also had my cholesterol tested and it is slightly elevated. On the basis there aren’t anymore lifestyle changes I can make the doctor has given me statins and they are lipophilic which are the ones that seemed to have showed better results pot cancer. I know I probably sound desperate and clutching at straws but that’s because I am. A good friend of mine said we all need a bit of hope so I guess I’m trying to give myself that. Did you get any further forward with your onc re statins? I have an appt on 1st Dec when I will mention it. 
Keep moving forward, love to you all xx

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21  Just checking in on you? Are you ok? Xx

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@gardengirl200 Are you TNBC? There seems to be interest in aspirin which you might want to look at x 

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Love running im

glad you are feeling stronger mentally. It’s such a long ride, there are bound to be difficult times.

@Sammy73 sorry to hear you are having a tough time too. Hope things improve for you soon. 

I had my prostap injection Wednesday and yesterday was my first EC. Wasn’t feeling particularly chipper to be there yesterday, but luckily had one of the quieter nurses who didn’t seem to mind my plugging my headphones in. Felt ok initially when I got home but then was a bit nauseous for a bit. Feel really washed out today so not doing much other than a walk with a friend. Taking the steroids even though I hate them! Xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning @Sammy73 

Sounds awful what you are going through. I hope it gets over soon for you.

The nurses at the hospital told me to get ready for this type of reaction post RT😫😥. Once again it is 'when Cancer keeps on giving'. When will it stop...

My friend Lin finished 3 weeks ago and she had the same: redness, pain, itchiness. She also developed a wound under her arm that needs special care.

So I am trying to get prepared mentally and enjoy the present. I have another 8 RT to go and should finish on 1 December. 10-15 days after coincides with my travel to France for Xtmas holidays. Fingers crossed. 

Today I am just happy to have the week-end break - because I am overwhelmingly tired. Yesterday I fell asleep before diner and right after again... 

You are right, let's be kind to ourselves. Wish you a nice calm week-end

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running 

I'm glad your cold has nearly gone, I too had a last call with my oncologist but it was more a general chat. No plan apart from any problems go through bc nurses and not go.

I am now 10 days after last radiotherapy and felt awful yesterday really sick headachy was actually sick, so so itchy and red raw where the treatment has been so went up to the radiotherapy centre and apparently this is the norm!! The 2 weeks after is your body reacting to the treatment!! 

Hey ho just when I thought it was all going to be calmer.

Be kind to ourselves ladies xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

I just lost the long post (don't know what happened - my brain is fuzzy) I wrote to let you know that I was back up mentally and to thank you again for your kind words. 

Thanks @Purpledaze and @gardengirl200 about reporting from your last oncologist appt. and how you felt. It is nice to read that you felt OK with it and even somehow reinsured. I will have mine some time in January. 

@Purpledaze I am glad to read that your husband got good news. Fingers crossed for the scan next month.

@gardengirl200 Sorry to hear about the long waiting Q for reconstruction. 

Cold has almost gone, RT is going fine (so far) and I am almost seeing the end of it. Tomorrow it is number 15 out of 23. I am more and more tired though. More than I had expected. May be it is also the grey and dark weather in Sweden. 

So I am learning to take it easy and to let go. 

Wish you all a nice end of the day

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

That’s really wonderful news @Purpledaze re.  your husband. I can only imagine how difficult it is to start the cancer journey over again with him and have something left in ‘the tank’ emotionally, so fingers crossed that all keeps going well. 

I had my final phone call with oncologist yesterday which I also found really reassuring. Completely ditto on the healthy diet/ everything in moderation info and the exercise. Gave approval to Vit D supplement, said a general multi vit ok but aim is to get as much as possible  from diet. 

I also found it interesting that she said if I had any issue re breast/scar area, I can still phone my BC nurse at any time and they will triage it from there. I had thought I had to go to GP only going forward so that was good to know. The follow up care seems to be emphasis on us taking lead/ patient driven rather than set appointments. 
I’m also going to be put in the very long Q for reconstruction. By the sound of it I may be on it for years!! It’s a shame because until that op has happened I will still feel I’m in the middle of things. But I know in the bigger picture it’s trivial compared to keeping well. 

Lastly she said there were no other drugs/ treatments authorised for either NHS or private treatment but there are some new ones likely to be authorised in the near future.   

Hope u r feeling better @Love running and that radio is still going well. 

xx 

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@gardengirl200 those skiing plans sound fantastic. I am definitely a fan of seizing the moment and I think BC has taught me that more than ever. Good for you booking those trips and looking forward!

@Love running sorry you've been having a difficult time. Feeling physically unwell may have chipped away at your emotional strength. I know that when I am in pain or discomfort, especially when it's not expected, or I don't realise I'm not well, then my emotions tend to go 'sideways' or even upside down 😂 I'm glad you were able to keep going with the radiotherapy and I hope you feel better soon. I think learning to 'let go' of what we can't control is one of the hardest things... But you are right that it's an important lesson to try to learn. At least if I can't let go, I can try not to fret or focus so much on the uncontrollable. At least that's what I tell myself! 😂

I had my last appt with my oncologist yesterday. It went OK and was surprisingly reassuring. One thing that stood out was that he said in terms of diet and supplements there is no definitive evidence of the benefits - beyond following what we already know to be a healthy, balanced diet. However he did say there is 'overwhelming' evidence to recommend physical exercise after BC as extremely beneficial. He clarified that this should be exercise that raises the heart rate and makes you feel out of breath. So if going for a walk, he suggested doing stages of power walking to increase heart rate etc. and not just ambling along. I thought this was interesting advice and something I will follow. With my wrist surgery it hasn't been easy to do much exercise but I'm feeling stronger and a bit more confident now, so will ease back into some energetic walks!

Also interesting and thought I'd share was that I still have some pain / tenderness in the breast that received radiotherapy. This wasn't there before RT. When I mentioned this to my oncologist, he said that evidence shows this kind of pain / discomfort post RT is rarely a sign of anything 'sinister' (his word!), which I found reassuring.

I know we all have different scenarios and diagnoses, but I thought I'd share those snippets from my appt yesterday.

My husband also had appt with his consultant yesterday and had good news that the doctor couldn't feel his tumour anymore! He'll have a scan in about a month and then we will see for sure how much the chemo is working is far, but for the tumour not to be palpable is already good news. Phew! 

Take care everyone and your day is a good one x

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@gardengirl200 

Les Gets/ Morzine in Dec, La Rosiere in Feb and Les Carroz in March sound like a great plan and path to recovery.

I hope that COVID will not disturb it. But my assumption is that the French skiing resorts will do everything in their power to make it safe for the skiers. They have been closed for two seasons and they can't afford another one. The French government is reintroducing some restrictions at the moment (especially regarding vaccination and face masks). You can't enter a restaurant without the vaccine pass or a COVID negative test. A third dose is now mandatory for the ones over 65 if they want to have an eligible vaccine pass.

So hopefully it will be enough to keep the cases at a reasonable level and the hospitalisation as low as possible.

Fingers crossed! 

This said, the Swedish government already warned us about the high risk of needing to cancel Xmas travel plans. Let's be optimistic.

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning everyone,

Thank you so much for your kind words. It really means the world to me. You are my rock!

I called in the radiotherapy department this morning, asking whether I was allowed to receive my rads today. Since I was COVID negative and feeling alright (except of constant flow from my nose), I received number 11. This too cheered me up. Tomorrow I will reach the half way milestone. 

I can run 10k because I am in control, I can decide how much I can take, how fast I want to go, but this cold is out of my control. May be this is my problem, I need to get used to, to not be in control. This is so hard as I am a compulsive planner. I need to learn to go and go with the flow.

Lesson of the day: I guess that losing control over the things I can't control is fine. 

Love you all💕 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

thank you @amy46 re insurance- I will have a look on the other threads. Hope your dad is ok. 

 

I guess you are still some way off going back to work. Ive had 7 months off and tbh I suspect Ive gone back a bit too soon. I went back immediately my rads ended and I suspect I am feeling more fragile and therefore more easily stressed as a result. Will you get a full year off given the nature of your job? I hope the NHS are very supportive and understanding as employers. xx 

 

 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running 

ditto what the others have said. I’m so sorry you are having a low spell physically and mentally. It seems we are all  feeling down from time to time. The good thing about this forum is that we all completely understand those low spells and that this is a space where we can express it without anyone misunderstanding or judging. The whole thing is a blooming rollercoaster. I think mental and physical so closely linked. You have been doing SO SO well and you will do so again. But this is HARD. So much harder than I (perhaps any of us) realised?)  at the outset. Big virtual hug xx 

@TicTok  I know what you mean about questioning everything we consume now. Good luck with building up for your op. Xx 

@Purpledaze 

thank you for those insurance suggestions … ItS on my list for tomorrow so I’m hoping to nail it all then. 
I’ve got my end of treatment appt with my oncologist on Tues, phone only. I suspect it is a tick box exercise but it is still the last time we will have dedicated oncologist time so, also tomorrow, I plan to write a list of all the questions that have popped into my head - if I can remember them . I wish id written them down as they came to me. 
I agree about dogs being a good distraction. I don’t know what id do without mine. 

im going to Les Gets/ Morzine in Dec, La Rosiere in Feb and Les Carroz in March. All France. I’m kind of worried about it now … Covid case numbers rising. Wondering if I’ve been a bit rash. But then I think we have to do what we can to embrace life … There’s so much scope for being afraid and giving in to that emotion.  I just want to push back from that a bit. 
@MICHELLE
all well with you?

love to all xx 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Love running ditto to what Amy46 said you have done so well and been there for everyone with your lovely words 💕….I hope you feel much better soon we are soon moving into the unknown zone of bc now when we will be on our own with our thoughts and that scares the hell out of me …. I am just having a glass of red wine and I am thinking should I be having this how much is bad for me and it goes on and on ! It is shit shit shit ….I am sure we will move on step by step …. Sending you lots of hug’s and good wishes xxx

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running 

You can’t be positive all the time and feeling poorly makes it so much harder. I’m sure it’s nothing to do with being complacent so don’t beat yourself up about that lovely lady. Just try to remind yourself that this will pass, you will start to feel physically better and your mind will follow. You have been through such a lot. It’s ok to feel low and fed up sometimes. I know exactly what you mean about feeling sick of being sick. One of the things I hate most about this is the feeling of being robbed of being well. Being fit and healthy was a big part of my pre cancer identity. It was how I saw myself and I think how others saw me.  I have not yet worked out how I see myself now or for the future but I hope it will come. What I do know is that you have been a complete inspiration to me. You ran a bloody 10k between chemo and radio for God’s sake! That is blinking awesome. And it wasn’t long ago you were swimming in the sea without your cap, not caring what anyone thought. You are brave and strong but it’s ok to feel fragile too in fact it makes you even more brave and strong in my eyes. This will pass and you’ll feel ok again I promise. Snuggle into your family and let them look after you a bit xxx

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning everyone,

Long silence this week, due a big mental and physical backlash... 

Radiotherapy was going fine, no pain but I suddenly got super tired. A wave of fatigue just came out from nowhere and dragged me into some kind of fog and dizziness. My brain stopped functioning.

I feel like Doris in the 'finding Nemo' movie...  In some ways it can be comical. Like I started the dishwasher to find later one that I put the washing pellet in my girls wardrobe. I laid on the radiotherapy table with my top on and did not understand why the nurse was waiting and asking me to undress, I though I did. I also got lost twice on the same journey with my car. Although using the GPS, my brain somehow decided to do the opposite of what the GPS told me. left inside of right... I ask where my daughter was, when she was standing beside me. My husband asks me all the time to repeat what he says as I drift away in the middle of the conversation. 

The tiredness was probably a sign that I was coming down with a cold (or a side effect from Zoladex and the constant nuclear war inside myself that leaves me burning hot and sweatty). A massive cold, pain in the ears, sore and dry throat and hard to swallow, running nose and dry cough. We immediately did a COVID test and it is negative (such a relief!). I am now crossing my fingers that I will be better by tomorrow because I have no clue whether I would be allowed to do my radiotherapy session. I will call tomorrow morning to find out.

Of course, the tiredness and being sick got the best of my positivity yesterday and today and I am on the edge of crying all the time. I am sick of being sick!!!! I am sick to be so fragile. Will this feeling of being breakable go away? I also feel guilty and ask myself whether I became complaisant with being careful in public... 

Watching the news about the COP26, the climate, the COVID situation in Europe just make me sad and worried for the future. The shorter, dark and grey days of the Swedish fall are not helping to boost my mood. 

On the top of all this, my new colleague which also got breast cancer (TN) a little after me, just got to know that she carries the BRCA1 gene and that new big decisions have to be taken in terms of treatment. I feel so helpless. How can I confort her? 

My mum has decided that she needs a holiday  and decided to take a organised bus trip to go the Czech republic for a spa week. She did the same in March 2020 (against my will) at the beginning of the COVID-19 pandemic and she nearly got stuck when they closed the borders. It was a big stress. Now she does it again when cases are the rise again. Thank god, I forced her to have her third dose end of September. She is 79, has not travelled since March 2020, she lives alone and feels lonely. I couldn't prevent her to go. But what a stress it will be the whole week until she is back home.

I am not good with handling stressful situation at the moment... hopefully it will get better again.

Sorry for this not so cheerful message.

@TicTok I hope you are enjoying for week away and you get up the weight before the surgery. Fingers crossed for this next step. 

@amy46 sorry about your dad. Ageing parents be far from us is not easy to manage. I always worry for my mum and feel guilty not being there. I just watched a very nice movie/documentary, some kind of love letter from Charlotte Gainsbourg to her mum Jane Birkin (Jane by Charlotte). The last sentences Charlotte has to finish to the movie, are so moving and strong. 

@Sammy73 congratulations for finishing radiotherapy. I am looking forward to doing the same (13 to go) but afraid of the after... the void as you say. Thanks for telling us about the nails. My finger nails are fine but my toe nails are not looking good. I thought it was only because of running. I will take better care of them.

@Purpledaze nice to hear that your wrist has healed, and your dogs are back. All good news brightens the day. I wish you that your trainers take you soon on run or bike ride. These are the moments when I feel the most at peace, running, cycling, training... focusing on the movement and the steps of the present...

@gardengirl200 well done for going back to work. I hope it will get easier with the brain fog and the stress.I have a wonderful team that will support me and I want to go back. On the same time, I am not sure I can handle stress and the endless meetings. Good luck with the travel insurance. I have to admit that I am living in denial and I have not subscribed to any when travelling to France last month and neither did I for our Xtmas trip to France and skiing in February. Probably because we stay skiing in Sweden, so it might not matter so much and I am not sure I will downhill ski due to my newly fixed ACL. I might only do cross country or walk with snow shoes. Where do you go skiing?

@Michelle21 I hope you are doing fine and that you are enjoying the running club. Since I have a cold, it is a bit of set back this week and probably next week too. 

I wish you all a relaxing Sunday.

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning ladies…. Amy46 so sorry to here your dad has had a fall , I hope he gets home soon .

purpledaze…. Yes chemo is all done 😁worst part this time has been my eyes and nose streaming this is nearly 3 weeks and still not gone , thank heaven for masks 😷 been a godsend quite embarrassing as as my nose just decides to pour with no warning , we have come away to Suffolk for a week need to build up before my opp I have lost  so much weight .

I hope all you ladies are doing ok ? I have read all the threads it seems like we are all nearing the final steps of our treatments which is quite scary as that’s leaves us on our own to try and move forward which is quite 😦   I can’t imagine going back to work and living a normal life at the minute . 
take care everyone xx