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MAY 2021 CHEMOTHERAPY STARTERS

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running 

Sounds very simular path phases to me apart from phase 2 i have x3 taxotan.

Again counting down helps sometimes then also scares the bleep out of me. 

Bought loads of hats yesterday online and feel better today going for lunch with my sister and mum. Might be the worse thing to do as mum getsvso emotional but its a change of scenery.

Have a good day in the rain all xx

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Cumbrian Lady thanks so much for all your tips!  It's great to hear about your experience.  I'm sometimes glass half full and can look for the worst possible scenario in things - totally unhelpful I know!  It's good to see a positive outcome! I've stopped the googling and freaking out that I did at the beginning!  I love the idea of your hair looking like a Badger! I think mine will be like that, I've been dieing it for years, no idea of how much grey I have!  X

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Sammy73 that must have been so hard for you, do take care of yourself  💐 it's so hard this experience, so emotionally draining at the best of times.  Sending you a virtual hug ❤️

I find it very comforting having you lovely ladies on here to share with, to help keep me together emotionally.  I've also had some anti depressants which I know are not for everyone but seem to be working for me at the moment anyway.  Good friends are also helping to see me through. Xxx 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning @Linds7oaks 

A special thought to you. I just wanted to say hi and send you some positive vibes and strengths to help you through your fourth round.

How are you today? I know it is hard but keep on fighting. You are getting closer to the end, every day that passes, gets you closer to it. We will be there to help you through.

take care 

 

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok ha ha!  Yes it's a bit depressing having a permanent bad hair day!  I've taken to wearing a summer hat when I leave the house now anyway! X

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Cumbrian Lady 

Thank you for sharing your ‘positive’ journey. It is good to hear that it also can go ‘smooth’

You are right, this journey is very individual and we all react differently. 

Personally I have had bad days (mostly due to withdrawal of the steroids when I go through a roller coaster of emotions) but overall I have had more good days than bad days so far. Every day that passes, I am getting closer to the end of it. And it is the good days that count the most nowadays. I enjoy them to the max. 

The end of chemo is my first goal.

- PHASE 1: 3 EC down and 1 to go. 

- PHASE 2: 12 paclitaxel until end of September.

I try not to think about PHASE 3 (radiation), PHASE 4 (anti hormone treatment for 10 years) and PHASE 5 (yearly mammogram follow up). I don’t want to worry about the future I can’t control or influence. I focus on the right now, what can I do. 

take care

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Purpledaze it's great to know that your second cycle went well 😀 fingers crossed I'll be the same. I've definitely learnt to treat constipation early rather than end up in hospital in a sat night! Madness! I'm on a two week chemo cycle and due to having a covid test before each one I have to self isolate every other weekend this summer 😩 so I'm keen to have as many good days with friends and family I can squeeze out of each cycle x

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Sammy 73 as love running says don’t be sorry , you wouldn’t be normal if that didn’t have an emotional effect on you 🥲so sorry to here you lost your husband .

cumbrian lady thanks for sharing your journey through this and your tips 👍it gives us hope to better times .

Hope you have a good day ladies xxx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Sammy73 

All my heart goes to you in this tough time and I send lots of hugs and love your way to make you feel that we in this forum are here for you. We got you.

You are an incredible strong woman, and I hope I can be as strong as you. Keep fighting, we will do too together.


Take care,

Cumbrian Lady
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hello Everyone

I finished my chemo on Dec 31st but I just wanted to say mine went well yes I was very tired my hair fell out, it is regrowing but I look like a badger😁 the pills they gave me an hour before I started the treatment worked a treat and I did not have one bout of sickness.
The time did pass quickly, sometimes depending on who was next to me I chatted, other times I watched the TV or just watched the incredible nurses going about their business, they also come to keep checking you are OK so I was well taken care of. Some had their phone, texting away, some slept, everyone had their own way of passing the time.
If I was there for a lunch treatment I got a lovely butty, tea or coffee, bag of crisps and yogurt - which was lovely especially as living alone and doing all my own meals I felt very pampered lying on the bed/couch food being unwrapped and placed in front of me.
I realise that not everyone is as lucky as me with the lack of side effects but it does prove how the treatment varies from person to person. The first week I was waking up at 4.am and making a cheese and piccalilli sandwich if not for the fact I am 64 I would have been worried😁 and the fact I live alone.

 I was worried leading up to my first session but the nurses put me so at ease
Make sure you drink lots of fluid (water is best) sleep if feeling tired it really is the best cure, cut your nails back my fingernails did not go black as told they might, but my toenails did drop off. I made sure I kept myself well moisturised, this will also help if you are scheduled for radiotherapy later on. Eat what you fancy a little often is better than one huge meal, but again I did not lose my appetite at all.
I think we all eventually find what works for us, but stacks of people on here who will offer help.
I stayed off the internet in so much as,  I did not go searching for the bad stuff, I just took what I needed in order to help me through it all.
I had lots of fun buying hats (no wigs) just jazzy hats.

I wish everyone lots of luck you can and will do it.

Poppy xx

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Oh @Sammy73 that's not emotionally ridiculous at all. That's *bleeping* hard! It must have been rough to have it all brought back like that. Big hugs coming your way and hoping that you will soon be lifted again by the incredible strength that is clearly within you x

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Omg you are amazing!! Replying to everyone. Thank you so so much x @Purpledaze 

I had my picc line put in today, i have been so ok and today i flunked big time!! Sadly i lost my husband 4 years ago through bowel cancer stage 4!! 15 months of chemo and obvs it was just pro longing his painful life! 

Not like us ladies at all. But picc lines have a not great memory for me he had a port fitted too and i just was the warrior making everything happen!!

Really bought stuff back today. Sorry. Just felt the worst i have so far really emotionally ridiculous!! 

It would be great to all have tea on wasap or something oneday. I feel i can share with you all. Oh and my **bleep** hair is proper falling out!!! 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Coastal ...sorry you have had a blip 😞sounds like you are back on track now 👍.... I’m the same with my hair! Back of my head is saying if you can’t dry or style it or straighten it what’s the point keeping it 🤔ummm ..... love to all you ladies xx

 

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi everyone,

Hope things are going ok for you all. I've been busy with work and enjoying some a visit from my family for the first time in nearly a year, which was just wonderful. So nice to have conversations in 'real' time!

@Love running how exciting that your balcony garden is taking off so well. I was happy this week to be able to eat lettuce from our mini vegetable patch. It felt like a big achievement and it tasted good! 😊 Now to wait and see if we can get some peas.

It certainly helps to have the distraction of plants / the garden. Just looking out at the trees is soothing when the days are not going so well.

I'm glad things have been easier for you this cycle.  I also found cycle 2 better than the first. Maybe just knowing a bit more what to expect is helpful.

I love the idea of a virgin mojito - a good idea for the weekend 🍹

Welcome @Sammy73 how lovely to hear that you have been enjoying your good days. I'm also a walker -love getting out with my 2 dogs when I feel up to it.

@Coastal I also get the ache in my bones - for me it comes on mostly the last 2 days of the bone marrow injections.  So far I've been able to keep it to a bearable level with general painkillers, a hot pad, and lots of walking around.  

I've continued working through my treatment so far - I take time off when I feel unwell, and when I feel better I work. I'm able to work from home so that makes it so much easier. I wouldn't be working if I still had to go into my work place. I choose to work because I appreciate the distraction it provides me, but I'm also going to take some time off when I have good days so I can do some fun things and treat myself.

@TicTok oooo Jaffa cakes! I love them and for some reason had forgotten this key information (chemo brain?).  Already on the shopping list 👍 I hope your acheyness has gone away and that you're feeling ok. 

@Linds7oaks I think today was the start of your cycle 4?  I've got fingers and toes crossed for you that this round will be kinder and smoother for you.  You are one round closer to the end and you are doing amazingly.  Sending you hugs and strength 🤗

@Karden how lovely that you were able to get out and see friends and your anniversary celebration sounded great.  I've also started planning to see friends and family more - @Bex27 my consultant told me to use my 'common sense' when deciding to meet people etc. So I figure as long as I'm sensible and don't plan to go to any raves 😂 I should be ok!  It just makes such a difference to my mood to know that I've got something nice planned - just meeting up with a friend or two in the garden/park has really helped lift my spirits. Oh and I also treat myself to a pair of funky leggings for each round of chemo 🤣

I've got my 3rd round of EC next week -  I know the feeling of dread will start to creep in the closer i get, but for now I'm firmly focusing on enjoying my days without pills and needles, enjoying the warmer weather and keeping my mind and body 'distractive'

Take care everyone x

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi lovely group
Hope everyone's ok. I've had another blip and been laid low on my second week first with the aches from the injections then oral thrush. Finally feel ok today yay! Actually saw my oldest friend today also for the first time in 6 months which was so brilliant. You are totally right saying we need good normal things to look forward to!

Thanks so much for your ideas re work that really made me think about whether I want to use my few precious days when I feel ok at work.

@Love running I love the picture!!! You are inspiring me with your running, I actually jogged a bit down to meet my daughter today, it felt really good 👍
@Linds7oaks it sounds really tough, take care of yourself, I really feel for you ❤️
@Bex27 so glad all has gone well, you made me laugh with the 4 krispy kremes!  I've bought difflam mouth wash for my mouth suggested by the chemo nurses and it seems to numb the tongue, really relieved my mouth!
@TicTok my hair is still hanging on in there but looking terrible as I'm worried about washing or touching it too much
@noodledoodle  I was surprised how good my wig looks!
Take care everyone and lots of love ❤️😘xxx

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Noodledoodle.... what could go wrong 😁....I will give it a go and thanks for the info xx

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Bex27 @I have found fruit ice lollies to be good for keeping mouth ulcers at bay and also chewing sugar free gum keeps the saliva flowing. Think you will be able to be prescribed mouth wash if they are a problem

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok  yes you can do with iPad, just need to have the zoom app installed, then you should just be able to join via a link they will send you via email. This will be easy if you have your email and zoom app on iPad. 
good luck!

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning @Linds7oaks,

I am so sorry to hear that you are not feeling well. I wish I could hug you and take some of your pain of your shoulders. I wish I could share some of my energy with you to make you feel better, as I feel blessed today to have gone through Round 3 better than expected.

What we are going through is hard, hard for the body and for the mind, hard for our future, hard on our families, but we will go through it. We will cross on the other side, the side of beating it. So keep on fighting, you are stronger than you think. We all are!!!!

You say today you are feeling better, so treat yourself with something nice, something that makes you happy (meeting or calling friends, going out, painting your nails anything...) to forget about tomorrow. Is tomorrow round 4 the last EC?

Today, I will meet 4 of my colleagues that I have not met in months due to Covid-19. Two of them don’t know yet why I am on sick leave - they believe I am on burn out due my stressful job.  I wanted to meet them because I needed some normality back in my life and also prepare my team for when I go back to work. I know that I will need them to support me and understand what I went through. Also they are very nice people which I miss a lot. 

I send you lots of positive vibes and virtual hugs. 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Linds7oaks so sorry you haven’t been to good ..... I hope your meds work and wish you luck for today xx
Bex 27 I find gently sucking on an ice pole /lolly really helps with the mouth , I haven’t has ulcers but it it does numb any pain .... worth a try .

loverunning ... love the the picture ❤️

Love to all and xx

Linds7oaks
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi Love Running and everyone,

Thanks for asking. Things haven’t been good with me. I just didn’t recover emotionally from my 3rd cycle and have been depressed and very anxious. It has been really tough. I wake up really early which is torture. My GP has been really supportive and I am now on various anti anxiety medications. Today is the first day I have felt better. I just hope it continues......Round 4 starts tomorrow 😬

I am glad that you all generally seem to be doing well. I am dreading this cycle as the previous 3 have been so tough but they have reduced my dose again so you never know, I have to be hopeful.

Best of luck to you all 

Lindsay

Bex27
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Coastal Thank you! Chemo itself went fine - I could bear the cold cap for 4.5 hours and I wasn't feeling too bad. The side effects have been okay so far. Some mild constipation, some insane sugar cravings from the steroids (4 krispy kreme doughnuts in one go!?!?) and general exhaustion. But I'm feeling good today! Hoping to go out and enjoy some of this amazing weather we're having finally.

Is anyone else dealing with mouth ulcers at the minute? I feel my mouth is on the brink of full on collapse and I'm trying to do all the necessary things to avoid it (brushing my teeth, constant salt water gargle, lots of water) but if anyone has any other tips I'd love to hear them! 

It sounds like everyone is doing well right now! That's so encouraging! I haven't done much socialising but I'm hoping it's not too crazy of an idea to spend a few days with a few friends at a beach house next week. My oncologist didn't seem thrilled by the idea but didn't say 'No'. I'm quite nervous about infection but I have been really careful and will continue to be, so I may give it a go. Let me know if any of you has an opinion!

@Love running I'll help you with those virgin mojitos!! 😂

@Coastal If you can take the time off work, I'd do it. I was pretty convinced I was going to work through chemo as well but my partner talked me out of it. This is such a difficult time, not only physically but mentally and emotionally, and when you have good days you should use them for something that makes you happy (unless work makes you that happy!). Just make sure you're listening to your body and taking as much time as you can! 

xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Sammy73 Welcome to the group.

thank you for the advice on sugar. I agree less processed sugar is good - not only for cancer but overall for our general health.

Some natural sugar is good though as our body especially our healthy muscle, brain cells need some sugar to function properly. 

I listened to a very interesting seminar about cancer and nutrition. There is not much strong evidence for a correlation between many of the food items and breast cancer. Soja in processed food have some - and many be too much meat.  But they are probable cause snd correlation. Not strong. 

The most important the clinical researcher pointed out was that many cancer patients suffer from denutrition, loss of weight and muscle mass. 

So ladies we need to be kind to ourselves to keep our body strong. 

have a good day

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

8FAF2406-F23E-4FEE-A2EE-B9FEEBB6BD99.jpeg

I saw this quote on my Facebook feed today and I borrowed it. I think this summarise well this group.

I hope you all have a good day. 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Noodle doodle thanks for the workshop site can you do this with just an I pad though as I haven’t got a lap top and not very good with technology 😳

sammy73 thanks for the sugar tips and advise 

love running so glad you are feeling much better now .......take care all and have a lovely day xx

 

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Coastal 

I too was shocked at how good my wig looked. Would never have thought I would wear a wig confidently but always have it on when going out, more often than not. 
I would take time off work whilst chemo is ongoing. You do want to pick anything up, unless you can do a bit of work from home? You need the time to look after yourself for a change. It’s a tough thing we are all going through and I think work should take a back seat for a short while. They will cope. 
Good luck xx

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok 

The link to book the workshops is here

https://lookgoodfeelbetter.co.uk/workshops/

i found it really good and some very useful tips. Like @Love running  I didn’t recognise myself and now make much more of an effort if I am going out. 
welcome @Sammy73  nice to see you on our little group and thanks for the tips!

I am on day 2 of my second EC cycle. Feel more normal this morning and slept well but was wiped out yesterday afternoon. Nausea managed better with a jiggle of the anti sickness meds. 
Hope you are all keeping as well as can be expected and I agree, roll on September!

xx

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Love running 

Ive made it on here!!!

Ive just had my good week off!! Done loads of stuff, not running but im a walker if anything. 2 weeks since treatment and a week b4 my next, hair is starting to fail me. Like you say, that just pulling my fingers through and clumps coming out. Will wait till next week b4 a short cut or a shave. I had accupunture yesterday(always belived in it) 

Sharing some advice, we all need to steer away from sugary things, theres knowledge of cancer feeding off sugar, so less fizzy drinks, sweets, more 'clean' drinks water,fruit teas. Just thought i would share. 

Apparently our body will get warmer through treatment to. Its the natural way of our body fighting of the chemicals. 

My accupunture lady has worked closely with cancer patients for 6 years, thought it was quiet intresting. 

Good luck ladies bring on september!!!! Xx

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Love running ..Agghh that’s nice to know 😁...I thought I needed to join the next group lol  where do I find these courses?  I could sure do with some tips x
coastal ...forgot to say I am off work now due to working in a shop they said as my immune system will be zero and I haven’t got any alternative of being on the shop floor ! That is if ever my sick note gets here 😏..... night night all xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Coastal 

The ache in the bones is from the bone marrow injections, as it boosts the production of blood cells. I have got some but found that training (Pilates and gentle stretching exercises) helps a lot. I also run a bit (as I am a runner).

 Although I think I could probably work a bit my second week when I feel normal, my job is quite stressful with short tight deadlines, lot of pressure and responsibilities and I am not sure I could cope with it on the top of BC and chemo. I just realised now how much I worked the last couple of years and months before my diagnose. I am also a YES person which does not always help. My boss is very supportive, she told me to take the time I need. I am on full sick leave. At the moment, I am enjoying it as I really take care of myself, which I did not do for a long time. I also spend more time with my family, the kids are happy I am home when they come back from school (which I seldom did before). I have a snack with them and we talk about their days. They love it.

Good luck with Movicol and the aftermath of it. I hope it works out for you.

 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi coastal got to be worth a try 👍..... injections are going ok but I am the same aching a fair bit  and not so perky now I have finished the steroids but ok . How’s your hair is it doing ok , mine looks a mess but it’s still there , I need to sort my wig out 👩🏼 ASAP.

hope you are all enjoying this lovely weather ....love to all xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok No way, we won't let you alone. I would not make it alone. You are stuck with us😱

Nice to hear that you coped well. I have to say that my 3 round is so far gentle. I also took one prinperan directly after the infusion and one 6 hours later which worked as wonder

I had a good night sleep from 22:00 until 05:00, which let me today with lot of energy. I even managed a Pilates session today and a walk. 

I also took the make up course. It was a blast, I have learnt to wear foundation for the first time in my life without looking like bozo the clown. My eldest thought I looked stunning when she came from school. My youngest is more honest and thought I looked that i have been too much in the sun. Myself I thought I looked amazing. Definitively going high maintenance from now on. I am looking forward to other such courses.

Now it is time to go to bed for me and get some beauty sleep.

 

 

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hiya @TicTok Jaffa cakes sounds great suggestion!  They don't stay long in the biscuit tin so will be fighting my daughter for them!  😂. Hope your injections are going ok, I'm on my last this cycle! Hurray!  Bit of respite before the whole cobootle starts again on Monday!  

I picked up my wig today, looks really ok!  I was pleased.  

😘Xxx

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running that really made me laugh!  Definitely movicol on the shopping list and hope it will lighten the mood next week!  😂. I hope your 3rd cycle is treating you kindly ❤️

This week I've just been a bit achey in my bones (no temperature) I had wondered whether this might be to do with the bone marrow injections.  Does anyone else have achey bones?

Also is anyone working at the moment during chemo? I'm currently on sick leave but have been asked by my employer to say when I might go back in a phased return.  I had thought maybe I should try a couple of days in the second week between cycles or maybe I'm just a glutton for punishment! I tend to be a bit of a yes person at work ... Maybe I should just take the time off!  What do you reckon

Hope everyone is doing ok 😘❤️💐xxx

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi ladies you had me worried it went really quite for a couple of days I thought you had all left me on my own 😁.... now you are all back at once . I have not been to bad this week so far , first day without steroids today been for a walk and alls ok , got to start my injections tonight my husband can’t wait to do it 😳.... coastal I found Jaffa cakes very helpful for constipation but I didn’t have to take any extra  anti sickness pills only for one day .

nice to have you all back love to all xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Purpledaze just wanted to let you know that my garden is taking over my balcony. I will have a salad week on the menu soon (planted too many at the same time). The fresh mint is wild and does not stop growing. My hubby offered to sacrifice himself and drink mojito but he can't keep up with the mint. So he is making virgin mojito for me and I have started with fresh mint tea (both cold and warm) and it is delicious. Especially when your taste become a bit funny.

And my strawberries are blooming, there are quite many now and I can't wait until there are ready.

How is your garden going? any harvest yet

Take care,

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Linds7oaks 

How are you doing? I hope you are getting on the top of this emotional roller coaster. After being deep down, I came up again. I spoke to a lot of my friends, my kids and to my hubby to explain what I am going through and that I needed help and support. I also talked to my oncologist who told me to continue the steroids one more day at half the dose, to be gentle to the body and the mind and to dampen the withdrawal effect. Although I don't want to more meds in my body than needed (I have a family history (my mum) with addiction to meds so, I am very scared), I probably will try this week.

I also started to plan fun activities for my good days, to make me feel normal. I realised that I got sad from the lack of plans. Just booking few activities gave a good boost. 

Keep on fighting, we will beat this. We are, you are stronger than you think. I promise you. 

Send you lots of hugs and positive vibes

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@noodledoodle 

I agree - it does feel liberating in some strange ways. My kids are not bothered about it at all. What a relief! 

I am so excited for tomorrow's course - I just hope I will good enough to fully enjoy it, I got EC round 3 this morning. I am hopeless with foundation and blush, I always end up looking like a 'spooky doll' when I try. 

I definitely will sign up to other available courses. I would love to know if what my colour is - I am probably off too.

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @TicTok 

I hope you have got your circadian clock back on track and managed to have some decent nights of sleep. 

I just wrote to Coastal what works for me. Not sure if it can help. I copy it back down here.

I try to not sleep too much during the day (few small short naps) and get some sort of gentle physical exercises (just enough to have my pulse rise and get a bit sweaty) - this way I get more 'naturally' tired then go to bed earlier (latest 21:30). I managed to get some decent nights of sleep under steroids, usually waking up twice around midnight and 4-5 am to wee (due to the massive drinking I am doing to flush the drugs out of my body😅). Sometimes around 4, it takes me some time (30-45 min) to fall asleep but eventually I do and manage to sleep again until the house gets wild (kids getting up). 

take care

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Coastal 

I have tried movicol after my first round (after 3 days without going as preventive measure) one bag before breakfast. I have been told that you can take up to 2 bags per day. The taste and consistence are not on my top 10 list of mocktails (sweet and salty on the same time). 

It worked for me but be aware that you might get the most uncontrollable loud gases ever 😂 (a bit embarrassing at time but my kids laugh their head off - so I took it with philosophy). 

The steroids are a nightmare - I try to not sleep too much during the day (few small short naps) and get some sort of gentle physical exercises (just enough to have my pulse rise and get a bit sweaty) - this way I get more 'naturally' tired then go to bed earlier (latest 21:30). I managed to get some decent nights of sleep under steroids, usually waking up twice around midnight and 4-5 am to wee (due to the massive drinking I am doing to flush the drugs out of my body😅). Sometimes around 4, it takes me some time (30-45 min) to fall asleep but eventually I do and manage to sleep again until the house gets wild (kids getting up). 

Not sure it can help you. 

I am glad you had a fabulous day with your family. It makes such a difference to the mood to met people. After COVID-19, and now this, I am longing for normality... I already planned a picnic on Thursday with my closest colleagues to catch up on us and work. Most of us have not met in person in months. So it will be so nice. I hope I will be in a good day.

Good luck with the Movicol and the nice sound effects 😉

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi everyone

@Bex27  really hope all went well on Friday ❤️ and @TicTok really hope you've had a reasonable time this week ❤️

@Love running I'm so glad that you've had a good week, thank you so much for your inspiring words, makes me feel like I can do this!!! Good luck with your next round 😘 I hope steroids are not so difficult next time.  I couldn't sleep with them and was totally exhausted when I stopped, such strong drugs we have to take, do take care ❤️ 

@Karden  I'm so happy you've had a good week, hope your mouth ulcers are ok ❤️

I've had a rough week with constipation, just no movement at all. V painful! Got enemas prescribed and ended up being told to go to hospital to have bloods checked on sat. Incredibly busy but they did prioritise me which was reassuring. Bloods ok, and was told to stop taking stool softeners as they were irritating my stomach! So difficult to know what to do for the best. I'm finally ok today! 👍 Such a relief and hopefully should be fine until next chemo!!! I'm v keen to try to avoid this next time, has anyone tried movicol? This was suggested by the bladder and bowel team.

I felt a bit better yesterday and had my cousin and sister here for lunch. Was shattered by the evening but it was so fab to have a normal day!

Hope you're all having a lovely bank holiday day 😘 it's so wonderful to have you there and know that I'm not alone in this xxx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Karden 

It sounds that you too had a lovely and social time lately and felt better from it. I am a very social person so meeting friends is important. I actually met a new friend during my last treatment, she is one of us. We have been meeting for walks and we share our feelings and experience and best tips. 

Eating out in a restaurant is a dream - have done it yet, the COVID situation here is still quite serious, although vaccination has picked up in speed. Will need to wait a little more.

Have a nice day 

Karden
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running I cannot agree with you more. I too have been quiet for the last few days as I have been busy with work ( from home) and have had more social activities in the last 2 days than I have had in the last 7 months.

On Saturday I met up with 2 dear friends who I started school with and who haven't seen me since my diagnosis last November. We had a stable tour of a local stately home and had a great catch up over lunch. It made me feel so normal and they were very complimentary about how well I am looking including my wig. It really lifted my spirits.

In the evening, my husband and I celebrated our 13th wedding anniversary at our favourite local restaurant, another first for us as we hadn't eaten out since last year.

On the Sunday we enjoyed a Bird of Prey experience which was a Christmas present from my stepdaughter in 2019. It was our 3rd planned date, due to the Coronavirus.

I feel a bit tired but otherwise ok despite a few mouth ulcers. Today is going to be spent quietly in the garden doing some gentle weeding and planting.

I would urge you all to make plans based around your chemo dates, you will find out when your best days are likely to be, and also for when active treatment ends. It really does give you something to look forward to and creates some normality in your life.

I hope everyone is feeling reasonably well and enjoying the bank holiday weekend. 😎🌞😊

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good evening,

I have been silent, because I have had a good end of the week. So I took the opportunity to do many things that made me happy to get lots of good memories to go back to when it gets tough. I have met friends outdoors, I trained quite some, I spent lots of time with the kids playing, watched my plants grow and even painted a wall...

Tomorrow, I am having Round 3 (EC) of 4 (getting closer to the end of phase 1 of my treatment). The good news is that I will have the lower dose again. It seems that it will be enough to do the job. The higher dose was too harsh on my immune system, they could not count my neutrophil😬. So I am hoping that I will cope as well as last time. Fingers crossed, as one never knows.

I wanted to share few things I learnt this week too:

- for those that are affected like me by the withdrawal effect of the steroids Day 6-7, my oncologist told me to take half the dose of steroids one more day so, that the stop is not so abrupt and give my body and mind the time to adjust. I might try it this time although I wish not to take more meds than needed. 

- Exercising is really doing the trick for me. My guess is that I am producing endorphins that makes me happy. I got much more energy after training and in the evening, felt naturally tired in a good way. This actually helps to stay awake during the day and sleep during the night.

- my mood lifted so much when I booked three fun activities in the future (one before my last round, one after the last round and even at the end of the year). I did dare to plan or book anything since I started chemo. I had put everything on hold, my whole life. I was so worried to not been able to do anything and to have to cancel, but I realised that not having any fun activities/plans to look forward made me depressed and sad. So I have booked a safari camp week-end for the kids and us in two weeks: one night under a tent, campfire dinner and safari in a park during the day. I took the extra insurance in case I would need to cancel at the last minute. At the end of my last round and before I start the weekly Paclitaxel treatment, we are planning a short holiday (5 to 10 days) to my in law summer house, 600 km away from Stockholm in the beautiful north of Sweden (if I can fix the logistics around the cleaning of the PICC line and the blood samples). I also booked myself and two friends for the Breast cancer awareness 10 km race in October. I should be done with chemo by then and on waiting to start the radiation. My friends will support me to run or walk these 10 km. Having plans just made feel normal and gave me so much joy.

For all of you that are struggling, I send you lots of hugs, love and positive thoughts and energy to go through the rough times. I really hope that most of you are now having some good days too and are able to enjoy a 'normal' life.

Keep on fighting. We are stronger than we think.

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Morning ladies All be it 2.30 am 😏first night after chemo i am fine in my self but my eyes are wide open still and won’t close 🙄must be the steroids like coastal said , so I have just had a cup of tea and ginger nut biscuits so it’s not all bad 👍going to give it another go now . Love to you all xx

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Well done @TicTok so glad all went well! 💪 🤗x

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi coastal got on ok thanks  the medication went well I managed the cold cap which was quite an experience 😱I am back home now , see what happens next I think I am running on steroids so all good at the moment 👍
I hope everyone is doing ok lots of love to all and take care xxx

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hope everyone enjoyed some sun today.  🌞  Managed to get a lovely walk in today with my sister, we'd booked a national trust property.  Had to take it really easy though as felt v tired and run down.  Still have constipation (trying senna and prunes tonight) 😂 I've also had a flushed face probably from the cocktail of meds!  Looks like I've been out in the sun.

@Love running well done brave lady with your hair, I'm sure you will be rocking the look! 

I hope everyone's doing well today, good luck @Bex27 for tomorrow and hope chemo went well @TicTok 

❤️X

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Well done with the hair @Love running ! I agree, it does feel strangely good. I am used to the new look already. Feels quite liberating 

I really enjoyed the makeup course. It had loads of good tips. I have now signed up to the wigs, lashes and brows and also the body confidence. Apparently the latter advises on which colours suit you best etc, which I am also useless at. Definitely going to go from low to high maintenance after all this😂😂

well done everyone on all your good work beating this thing! Keep it up. 💪💪

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Selma59 How are you doing?

I really hope that you are getting better.