@Impatience I bit my lip a couple of weeks ago and then bit it a couple more times when I was eating. I used the mouthwash I had been prescribed and it did clear up. I have a real tendency to worry and during my chemo in Feb-March, I became consumed with worrying about every little thing. It was driving me crazy so I decided to relax a bit and I have been fine. Just run anything by the nurses. I was worried about hugging my children due to Covid but then reasoned that I was more likely to pick it up when in hospital. Not hugging them was so bad for my mental health. My sister-in-law also helped to give me some perspective as she is chronically neutropenic but still managed to work throughout Covid, hugs her children etc. I hope you find your balance. xxx
Imp ❤️ Keep vigilant, keep checking temperature and if you don’t feel right always ring rapid response number even with no temperature. Your team would rather you ring and check everything with them, than not check ❤️ You help them get you safely through chemo by being vigilant ❤️ I found keeping chart of temperature during cycles helped, it was where I wrote down when I’d taken tablets too, it just gave me bit of comfort being able to see it all in black and white rather than thinking oh what was my temperature earlier because chemo brain fog can make you bit fuzzy. Hope this helps ❤️💕💕✨✨Shi xx
It's only natural you will worry more and as long as you now careful and using mouthwash, I'm sure all will be ok. Maybe makeup a salt water rinse as well it certainly won't do any harm. I used to get alot of utis and the slightest niggle I worried so much.
Take a deep breath and say all will be ok.
Sending a virtual hug.
I have somehow managed to bite the inside of my cheek. I have used the oral wash and bonjela but now worried sick about infection and low neutrophils.
Does anyone else worry like this? Anyone got good tips on how to control this worry as it is driving me insane?
Yes I did mention the chemo smell during my first cycle. I felt it was coming from my pores and the bedroom and bathroom had the same sweet sickly awful smell. Hubby said he couldn’t smell it but I reckon he was just being nice.
However like Louise said it does disappear after the first week. Like Louise I’m into my 2nd week of the 2nd cycle and feeling okay. I’ve walked 2 miles and my chemo brain has also let me do a huge pile of paperwork/admin. So all good.
Chemo for me is the constant worry rather than the actual SEs. However I’ve always been a worry wort.
I hope you have a good 2nd cycle.
Wishing everyone a good week too.
I've had that both times in my first week however I feel the smell is me. I asked my partner and he said he couldnt smell anything. Its like my body is sweating out the poison and its most unpleasant. I'm now day 12 and no smell and feeling good. Went out to lunch with 2 friends and that was so nice just a bit of normality. Apart from metalic taste in mouth im back to walking dogs, shopping etc
How is everyone else? Hope your all doing ok.
Love Louise xx
@ImpatienceIm pretty sure it was you the other week that mentioned the smell of chemo?
All day i have been trying to find the dirty sock smell around the house then i remembered what you said and wondered if this was it?
Thanks for all the anecdotes. I awoke (as expected) at the ridiculously early time of 3:30am on the dot. Was awake for 2 hours and nearly considered getting up but then remembered i didnt have to do the school run so put my editation on and fell back to sleep for another hour and a half, so better than nothing. Woke up feeling less tired and generally fine in myself. Ate brekkie so I could have the steroids and also eaten lunch early at 12 to have the lunchtime dose. I feel quite full up now!
Im hoping to go for a walk and do a small workout later as im feeling fine and well aware tomorrow i may not feel as good, but i am severly lacking in motivation at the moment! i think ill set my alarm for 2pm and tell my daughter to drag me outside!
Hope everyone else is feeling good.
I am also on EC for three cycles. I was given 150mg of E both cycles. I think there is slight variation in amount based on height/weight but it sounds like you were given half a dose first time round.
To reassure you the only cumulative for cycle 2 was the fatigue. This was much worse days 1-6. I’m now on day 12 and doing okay.
I’m sending you positive vibes that your second cycle will be okay.
Take care. Imp xx
@GonnaGetThruThis I don’t seem to have a treatment book but have an appointment with the oncologist so will ask tomorrow.
@Heels to walking boots can you see the details of your last treatment written down in your book?
I compared my bloods to last time and my white and red cells are lower thsn the first time but not by much thankfully. The injections seem to be doing their job so I shall enjoy taking them again from Day 3.
@GonnaGetThruThis i don't think mine should be different but i will definitely pay attention on Friday as i too think i got off lightly with the side effects. So i would be curious if i am the same as you.
@Heels to walking bootsthe nurse happened to mention it when it arrived. She said we have 3 viles...... last time I only had 2. I had no idea i only had a half dose and kind of wish I knew as it would surely explain how i got off so lightly. Also checked my book on the treatment page for last time and saw Epirubicin 90mg and this time the E was 180mg.
Is there a reason you think yours will be different?
Just a question did they tell you that the % of Epirubicin had changed compared to last time or did you ask? I am just curious at whether mine will be different on Friday.
Finally the treatment started after about a 90 min delay but you can see how hard everyone works here so I'm definitely not complaining.
Also interestingly, on my first treatment I only had 50% of the Epirubicin as one of my blood results was high. I think this must have been a factor in why I got away with very few side effects. This time I have the full 100% dose so we will see. I'm trying not to now worry about all the potential side effects but will have to just wait and see.
Treatment all gone through now so I just have about hour of this bloody cap on. It really is borderline unbearable so if it doesn't look like it's worked this cycle I won't continue with it.
Anyway enough of my moaning, how is everyone else? I hope our ladies who weren't so well last week are starting to feel better and it will continue.
Chat later ladies
Will keep everything crossed for you @hopeful1974 that your bloods come back ok for chemo Friday! Also, hope that your energy returns today...i think the football took quite a lot out of us yesterday LOL xx
Big hugs for today, @GonnaGetThruThis . One more chemo you can tick off! I do hope my bloods are ok tomorrow for chemo on Friday - I have felt whacked this morning and only woke up at 10:30. Perhaps the football affected me more than I thought! xxx
@Jennet I have read that too and agree it is very useful - more about the medical side of things. I devoured both books a while back and they were very helpful in coming to terms with all I am going through as well as giving practical advice. Hope all goes well as you get started with the chemo. xxx
@Heels to walking boots you are right im here now. Just got the hair all ready for the cold cap and was told that my drugs are delayed and have to wait another 90 mins. Oh well not like I had any other plans today.....
Thank you for this...really helpful tips @hopeful1974 - the other book I am finding useful is "The Complete Guide to Breast Cancer" by Liz O'Riordan & Trish Greenhalgh. Now off to paint my nails and then go to get a PICC line inserted.
Oh you made me laugh! So much to look forward to...I start chemo tomorrow, off to get a PICC line today. Feel like a pincushion - so many needles.
Thank you for the giggle.
@Louise65 So glad you are feeling better! And a wonderful photograph your smile is soo uplifting and positive!
Hope everyone else is having a good day and enjoying the Wimbledon and the football later.
Hair is falling out a bit more these last two days which made me sad and also a reminder of how real this is but seeing the lovely photographs of everyone really up lifted me and if it comes out it comes out!
sorry for not mentioning everyone this time also doing this on phone which is harder. 🤦🏻♀️
sending you all love!
@Louise65 love the new photo and the fact that you're feeling better and over the first week. Here's hoping it gets better from here so you can 'enjoy' the next couple of weeks.
We are on the same/similar treatment plan as I also have 3x EC then move onto P so it'll be interesting to see how they compare. I've also heard P is less severe than EC as @hopeful1974 says so here's hoping.
I'm about to sit down and enjoy the tennis and using it as an excuse to resr up for tomorrow.
Take care all
@Louise65So pleased to hear you are feeling a little better. I felt awful on EC too so know what it’s like. I have felt so much better on the chemo I am now on, so hope it will be the same for you. I know several people who found Paclitaxel much easier than EC. Fingers crossed! xxx
What a great uplifting photograph! Your smile is so positive. So pleased to hear you are feeling a bit better.
23rd for me too. Together we can do this!
Hope everyone is doing OK. I'm finally starting to feel human again and up and about. The medications are working and yesterday I ate properly which was so nice.
I'm on EC and have 1 left on 23rd so will expect the same again around day 7. Then I go onto PC weekly.
I put a new pic of me on my Facebook yesterday as I don't see anyone alot of people thought I still had hair. The comments I got were so lovely and gave me a real boost. I don't wear anything at home unless my head feels chilly then it's just a cotton hat. When I'm out it's either a cotton sunhat or beanie I just get to hot.
Another day ticked off this horrendous journey. I was talking with my niece yesterday about her wedding 29th December I have my dress etc and so looking forward to it.
Love to all
@GonnaGetThruThis Thank you for your kind comments re the wig. It’s great to have and I wear it a lot. When I’m not feeling so good, though, I take it off and just prefer wearing nothing on my head round the house at those times. I still have a full covering of my grade 1 hair, but I can see little hairs on my pillow each morning so it is coming out slowly.
I’m looking forward to the tennis and football today. I have found some wonderful films and series on Netflix and they have seen me through many a tired moment. Call My Agent is my favourite - it is in French with subtitles, which I enjoy as I lived in France for a few years.
Sending love to everyone today. As many have said, we will get through this together. xxx
I am sorry to hear you’ve had a few tough days and hopefully you are feeling a bit better now. I have found this cycle harder than the first but I guess I knew it could be.
Are you on EC-T regime? I’m hoping to get through the next cycle by telling myself that it’s the last of the EC. EC will be no more! T may bring other challenges but it will only be 3 to go. Cancer has played so much with my head that I’m putting it to good use and trying to use thought in a positive way. Hope you’ve had a better weekend so far.
Morning to everyone else (I’m sorry I type this on my phone so no chance of being able to list everyone 🙈). I’m loving the photographs and great advice re lipstick. Haven’t worn any since retiring from work but will treat myself! My head has now got a fine covering of baby hair which is still shedding. I wear little turbans around the house and my wig to go out (although other than the hospital I haven’t been out).
It is great to hear that so many have got through the first cycle and gearing up for the next one. Wishing everyone a positive and trouble free week.
Flower123 ❤️ Beautiful photos, always found nice bit of lippy works magic ❤️ And always put lippy and blusher on, chunky necklaces and big earrings or dangly earrings are worth experimenting with too ❤️ You’ve all got the kinder head surprise to look forward to those who are not cold capping, you won’t know what colour it’s going to grow back or if it will be straight or if you get the chemo curly whirly curls 😁 😘💕💕✨✨Shi xx
@ImpatienceI didnt experience awful bone pain but i did still feel like a needle was going into my back bone for a good week after I had finished the last injection. I was also reluctant to take paracetamol last week when my headache was bothering me (also time of the month) but i took my temp 3x on 2 different thermometers and then decided to take just 1 and it did the trick. The nurse did tell me yesterday that it is fine as long as i check my temp, but i can totally understand why you would be reluctant!
@Flower123 You look so pretty with your headscarf on! I have some scarves and will definitely be using them once my hair falls out and when it is too hot for my wig. xxx
@Impatience I was told by my oncologist that I should take paracetamol for combatting the bone pain, but if you are being cautious because of the infection risk, can you check with your hospital? Mine has a 24-hour hotline you can ring. xxx
Sorry I’ve not posted for a few days.
I’m looking for advice. It’s 7 days since I had the g-csf injection. I was only given one so I’m assuming it’s the long lasting one. This afternoon I have awful bone pain. Do any of you have experience of this and is it normal 7 days later? I dare not take paracetamol as I’m paranoid about my temperature given cycle one and the rush to hospital.
Hope everyone else is having a better day.
Thank you. Imp xx
Jennifer, what a pretty headscarf you have on, my hair is shedding everywhere hubby said I’m worse than the dogs, but I have just cut it all close to my head with scissors, think I will be getting the graders on it later, I’ve booked on for the make up class, and did go to boots yesterday and bought a very bold lipstick and a special brush for drawing my eyebrows on, were all walking this journey together and it’s so good to hear how positive we are, enjoy the weekend and the football xx
Hello Everyone, I hope today is being kind to you all .
@GonnaGetThruThis I have bloods on Monday then oncology telephone review Tuesday. I am same as you in the way I’m going to treat it as day one again and take each day .I’m so excited to be going out tomorrow to bird land all outside to see my 1 yr old granddaughter not seen her for 6 weeks .
I had a melt down this morning as hair was coming out in chunks . Have decided to shave of to grade 2. Lots of tears but now feel ok as hair not falling out. Hubby been so brilliant he is my rock , he had been going around with the hoover getting the hair over last few days.
Been 15 days since chemo so hair has done me proud for so long .
Enjoy the weekend
Had the bloods and assessment yesterday. Love how easy it is for them to take blood from the PICC line. She said he would call if any issues and I didn’t get the call back so that means all set for Monday. Last time they wrote the 4 results down so I will be interested to compare them. The assessment part was her going through the list of side effects and asking if I experienced them at all. I was like no, no, no and just mentioned tiredness in week1, dull headache on and off in week 2 and dry eyes this week. We discussed the cold cap and she asked me how the hair was and I was like ‘arrr well you can see its all still here’. I haven’t even had any additional shedding so I said I will definitely give it another go. She said that was all excellent but to be aware that the treatment can be cumulative so the next cycle might not be as easy. So I have to go back to that day 1 mindset and just take each day as it comes. Not looking forward to the side effects starting off again (4am wakeups etc….) but we all know it means the drugs are in our system and working to do their job!
@simplyeve Yvonne so glad to hear that you are doing ok and got things done. It’s a good feeling isn’t it. I am also using your trick of writing in Word whilst running down the BC forum page to try to make comments and/or any questions from as many people as possible. Also thanks for sharing your photos. I hope I have as much guts if/when the time comes. 1/3 way through is a great milestone.
@hopeful1974 love the photos of you and honestly I before I read what you wrote I thought that these were before and after photos so the wig one was your natural hair. You look fab and could never tell it was a wig. It makes me think that if I need to then I will embrace it as well.
@Flower123 if you’re feeling good now then everything crossed for the next week
@JessicaB how was the first session? I love how we all look in our cold cap photos. I remember saying to my husband I felt like a rugby player with special headgear on. Really hope it works for you.
@Heels to walking boots Day 20 for me and no sign of the hair going. Mind you it is really oily and needs a wash but I am avoiding that. I comb it once or twice a day and leave it out (mine is shoulder length and straight). I hope it works for you. What sort of stats did they give you? I remember the nurse saying it is about 60% effective. She told me stories about people is totally worked for and totally didnt work for. She said everyone has their own idea of success as well. I tried not to laugh when she told me one lady had longish hair and she just had a bald patch in the middle so kept all the front side and back so had a hat or scarf on and no one had a clue she had this huge bald patch. For her this was acceptable
@Louise65 I have been thinking about you this week and when you didn’t post I was wondering if you weren’t so well. Sorry to hear that you have been struggling but hopefully a few days in bed and no youre in your 2nd week you will start to feel better and get more energy and the pain will go.
@Impatience how are you now the first week is over? Hopefully your strength is also returning.
Loads of you had mentioned the Look Good Feel Good workshops so thanks for the link @hopeful as I also clicked and have booked myself on in a couple of weeks time. 23rd I think.
@Trowster did you book on? Also how are you feeling now?
I'm positive ive missed people but hopefully we all know we are tough and strong and will get through this. And thank goodness we still have some good tennis to get through this weekend. No idea what im going to do the next few weeks if im not feeling the best! Must scroll through Netflix to see whats on offer. Enjoy the weekend ladies.
@Louise65 I am so sorry to hear that you have been feeling really low. That happened to me when I was doing EC chemo back in Feb-March. I went on antidepressants and had counselling (from Macmillan and from the volunteer-run Centre at my hospital) and both seem to have helped a lot. I felt low because I wasn’t able to eat much at all and I wasn’t sleeping. I was given sleeping tablets and then the antidepressants kicked in (those take 4-6 weeks to work fully). I did the 3 rounds of accelerated EC and then had my mastectomy to give my body a break. Fortunately, this new round of drugs has been kinder to me and so I am in an altogether better place. I think I was also expecting the worst so this has been a nice surprise. I just wanted you to know that you are not alone in this and that things will hopefully get easier. There are always things your team can do to help you. Sending lots of love and hugs. Siân xxx
@JessicaB So glad you seem to be coping well and I love your photo's, Thanks for posting them. I know you had one on your profile, but I really like the short hair cut too.
Much love Yvonne xx
So sorry to hear you are struggling at the moment Lousie and I fully get the horrible mouth as that is exactly what I started with after my first treatment, I now have an antiseptic mouthwash which was given on 11 of my first treatment, the improvement was almost immediate and I would highly recommend asking for it. I was originally advised to take it 4 times a day, then as mouth improved I reduced it to morning and night and then followed up with my aloe vera toothpaste, I talked about it on the unit yesterday and was told if I had similar problems again I could up it to 4 times a day again, I have managed so far today, but if I feel my mouth is deteriorating again I will definitely increase it. Hope this is helpful to you.
I have been lucky with the bone pain, I do have a painful shoulder as I broke it a few years back, but it is really only when I sleep on it so I usually sleep on my back or my front atm.
Love Yvonne xx
Hope everyone doing OK, I have been reading all the threads just been very low. I've spent last 3 days in bed and today my oncologist was happy for me to see my GP as couldn't face a 50 min car journey each way to get checked. All ok apart from oral thrush it seems day 7/8 my body shuts down and uses everything I have in reserve to get through.
I'm having horrible bone pain in the leg I had knee replacement which is really unpleasant.
Hope everyone has a good weekend.
Love Louise x
@JessicaB Great pics and I'm glad to hear it all went well. I hope you continue to feel well and that the cold cap works for you. xxx
@hopeful1974 sorry to hear you are delayed but hope you enjoy your nail workshop instead today..i am hoping to book myself on one of these soon.
Also, looks like you will get the weather next weekend for your trip 😁
@simplyeve -hope things are still going well for you and you have a wonderful weekend.
I am well and hair is still in tact so far Day 15 so i am hopeful that the cold cap is working.
@GonnaGetThruThis hope bloods all come back as expected, I am pretty sure they look at things quite quickly and as Yvonne said i think they would run them again if need be ...i saw a lady have that done at my first Chemo session. I can also understand how emotional you are feeling and i am glad you are well enough to enjoy the leaving activities it quite a milestone. My eldest has finished school completely so have everything crossed that she will get her University Place! I still can't believe i have am 18 year lol..do not know where time has gone.
Thank you Sian and Yvonne for sharing your beautiful pictures earlier lovely to put a face to name.
@Flower123 Glad you are feeling good the second week, i must admit i also feel the same and have everything crossed that it continues this way. I am even going to venture out on the bike this afternoon as feel good.
@JessicaB how are you doing after your first session?
@Impatience --love the rhyme going to be my mantra from now on.
To anyone else who wishing you strength and wellness.