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
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
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.
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
@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.
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.
@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
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
@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
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
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.
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).
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 😉
@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
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
@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. 😎🌞😊
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.
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
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
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!
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. 💪💪
I am taking meds 1-2 hours before treatment (betamethason, EMEND and Alexi - 26 pills in total) and last time, my nurse told me to take one primperan right after the treatment and then one more 6 hours later.
This combine with a lower dose made my second treatment more bearable than the first one.
Lots of hugs to all of you. I hope you are all getting better and some rest and peace.
I have done it. I went for the shave and it actually feels good.
I was hoping to look fierce like the Black panther warriors from the Marvel movie, or Charlize Theron in Mad Max instead I look like Sigourney Weaver in Alien, but right after she put a good fight against the Alien 😂. I had forgotten about the scars left from a childhood accident, which I re-discovered on my skull. Quite impressive. According to my soon teenager girl, I look 'bad A...' - like a warrior from the future in a Sci-Fi movie. I can live with that 😉.
@noodledoodle I registered to a makeup workshop for 1st of June and I even got a goodie bag with it:-) I am so excited. Thanks for the tips.
I am not the best at make up so it will be useful even for after😊
Hi @Karden I'm only using what the nurses gave me so far, called docusate sodium. Thanks so much for your suggestions, if there's no joy tomorrow I'll get some senna laxative! It must have been extra hard having chemo during lockdown for you, such a difficult path to follow in normal times! Thanks for all your encouraging words 🤗x
@Bex27 when I went in for chemo I was given an anti sickness pill called netupitant and palonosetrono. The nurses then waited for an hour before giving me the chemo injection for it to work and they said it would stop sickness for a week! They also gave me top up anti sickness tablets called metoclopramide that I can take if I need them. It seems to have worked so far and I haven't needed these extra ones. I really hope it works for you on Friday too! Great idea to be distracted by your puppy!!! Roll on the weekend, and you'll be one down too. 🤗X
I hope you're all getting through the week okay. Fingers crossed the rain has let up for a while which will make the encouraged daily walks a bit more pleasant!
I was wondering if anyone had any advice about getting anti-nausea meds before Dose Day. I haven't been prescribed anything and I am guessing they'll give that to me when I'm getting treatment? My partner read somewhere that it can be helpful to get and take the anti-nausea meds before the treatment takes place. Does anyone have any experience either way? Trying to work out how much effort I want to put into getting something put in place over the next few days!
@Coastal Thank you so much! I have no idea how this is all going to go so it's useful to hear others' experiences of the process. I'll be bringing loads of distractions with me and will be asking my partner for constant videos of our puppy which works every time! 😂
Hi coastal glad all went well for you 😁.... my appointment today was a quick in and out 🤷♂️Asked if I was ok and that was that . I am ready to get my 1st one ticked off now ... bring it on . Take care all xx
@TicTok Good luck with your pre-chemo appointment, at least you will probably get a start date and can start preparing for your treatment. You will find lots of tips on here so please ask, there's always someone who has gone through it with similar side-effects and can give great advice. It's natural to feel emotional, I am up and down all the time but you will get through it and you can pour your heart out on this forum.
@Coastal What are you using for constipation? I used natural Senna laxative tablets (Boots own brand) and they worked for me, I have been ok since. Glad to hear that your 1st chemo went well and hope the cold cap works for you. It wasn't available at Sheffield when I first started chemo in December because of Covid and the fact that it takes longer for each patient. I expect they wanted to get patients in and out as quickly as possible.
@Purpledaze I hope your heating has been fixed, it's the last thing you need at this time.
Hi @Bex27 good luck for Friday! I had my first one on Monday, and wore the cold cap. It was definitely doable but good to have some distractions, I had a good book, hot water bottle and lots of blankets. It went numb after 20 minutes for me although the chin strap was uncomfortable. The nurses were so lovely and helpful, which really made a difference. It's so great to have this group too, makes a big difference. Take care and hope your week goes well 🤗x
@Purpledaze thanks, my first one went well thankfully! I'd been so fearful but the reality was better than my fears, yay! I just felt v tired and a bit grotty but ok today. I'm glad your second one went well, and anti sickness meds worked that's great news! Sorry to hear about your heating and hot water though, hope it's fixed now! 🤗X
@Karden thank you! It feels really good to talk to people who understand. Makes it alot less scary for me. I'm so sorry to hear your last one was hard, I really hope they can sort out the sickness for you. That must be really hard to deal with 💐 do take alot of care of yourself 😘x
Hi @TicTok and everyone, thanks so much for your thoughts! First chemo went well thankfully! I didn't sleep that night though and felt quite manic maybe due to the steroid injection and the amount of adrenaline pumping round me. I was knackered yesterday and felt unwell generally, just watched netlix apart from a walk with my sister and struggled to keep my eyes open. Today I feel much better and only have constipation ☹️ I've been taking the constipation pills but no joy so far... The nurses were lovely and v careful with the cold cap. The cold was doable after 20 mins but the chin strap tight and uncomfortable. I took a hot water bottle with me wrapped up in a blanket to keep hot and it made a massive difference. Tiktok I hope your first session goes really well I will be thinking of you ❤️ I've ticked off my first one in my schedule which feels really good. It's so good to have people to share these feelings with ❤️x
Morning ladies I don’t know how to do that either 🤷♂️.... well I am on my way for my pre chemo appointment 🙄quite emotional today last day at work and it’s hit me now 😢
coastal how are you doing ? Been wondering how you got on , hope you are ok .
love to you all xx
I’m liking the new feature on the site for tagging people. This should make conversations so much easier. 👍
May starters: Hope everyone is doing well. 💕
To all of you struggling through your treatments I just wanted to tell you are all how amazing I think you are. The way you deal with things and the support you are giving each other just by sharing your experiences is fantastic.
The one thing I remember being told by my Oncologist last week is that the dexamethasone can give you very changeable mood swings from angry to sad, I remember it because he specifically told my husband that he should blame him (the oncologist) and not me, as it was beyond my control, so ladies allow yourselves time to adjust and be kind to yourselves. You really are incredibly brave and strong and you will get through your treatments.
Gentle Hugs xx
@Carmen Verandah Thank you.
You are right it is hard because I am (was) a quite active person and I need to accept my new me. I am fortunate to have a very supportive husband. He is a very good dad to the girls and has taken a lot on him to help with everything. My girls too are amazing. They don't complain and are very helpful.
@Karden you are just an inspiration. Despite having it rough again, you are helping us all with your kind and positive words.
I am so sad that the reduced dose was not gentler on you. Not sure if it helps, I found that walking and getting fresh air helps me with the nausea. On my walks, I take water and some small things to eat and after 30 min or so, I stop on a bench and have a small snack. I made my own high energy raw balls with dates, walnut and coconut for this purpose.
Lot of hugs
To all of you strong ladies fighting,
I just wanted to thank you for your kind words and support the last couple of days. I am in a much better today. My body and mind finally went over the withdrawal effect and I start to feel 'normal' again.
I feel overwhelmed of gratitude for this group and for my supportive family.
@Linds7oaks Thank you for your words and for telling me that I am not alone.
Today I am in a better place again. I guess my body and mind finally went over the withdrawal effect.
Thanks for that @Purpledaze . I'll speak to my oncologist for the next cycle. I'm feeling slightly better now and have had some homemade veggie soup for lunch. Hopefully, I'm on the mend. x
@Karden sorry it's been an ongoing rough ride for you! For anti-sickness I have Metoclopramide, Ondansetron, and the recent addition was Aprepitant (Emend). I hope you can have some nausea-free days soon. Sending hugs x
I've been reading all the posts over the last few days but have felt pretty grim. 2nd FEC was on Thursday but the reduced dose has just knocked me out again, the fatigue is like nothing I've had before. The low level nausea is getting me down too as I'm having to push myself into eating and drinking.
@Purpledaze Which anti-sickness meds have you been given. I'm currently on Metoclopramide.
@Love running and @Linds7oaks I hope your mood is a little better. It's 6 months since my diagnosis and I have been up and down so often. Worries about the future can be so frightening and must be so difficult when you have young children.
Good luck with your first chemo @Coastal and @Bex27 and welcome to the group.
@Carmen Verandah I have also bought 2 wigs from Simply Wigs and love them, they have made a real difference to my confidence in going out and the staff are very helpful on the phone.
Best wishes to all. 🤗🤗 xx
Loverunning, it must be so hard not having the energy you would like to give to your children, but don’t feel ashamed, you are doing what you can at the moment, your moods will fluctuate and you need to be kind to yourself.