Good morning ladies
Looks like another beautiful day 🔆..
Thank you so much for all your replies. it’s lovely to hear how you are all doing, troupers through and through.
I eventually called my team as the pain was so severe I ended up not being able to walk. This resulted in paramedics and then a lovely day out in A and E! Turns out I have old bones! ( degenerative disks) and the effects of filgrastin can be magnified. They were worried as they thought I may have had cord compression or that it had spread.... it hasn’t. I now have strong pain relief should I need it for next time. I now feel fine.
So ladies I’m sending love, hugs and big positivity pants your way. Together we can do this.
Good news you have been able to enjoy some good days, understandable you feel aprensive about the next cycle but hopefully it will be better than the last. I love your compartmentalising technique, I might have to try that when the gremlins creep in.
Re sleep my steroid dose is quite low on FEC and doesn’t seem to affect my sleep. However I am struggling in general to sleep and wake in the night so have been prescribed something to help from my GP. He has only given me enough for the next few weeks but I don’t seem to need it for wk 1 of chemo as I sleep a lot then, so hopefully I can stretch them out for a bit longer. Sleep just makes life a little easier doesn’t it? And middle of the night thoughts are the worst.
I hope your next cycle goes well, let us know xx
It’s so great to read how everyone is doing then we can all help each other. Sorry you’re going through this again Michelle, that’s so annoying.
I am also doing well and enjoying the sunshine. My second 3-weekly chemo cycle starts tomorrow and after my last one was so awful, I am dreading it. But I am training my brain to compartmentalise (I just shout “not now!!” internally) so I enjoy the good days and will deal with the bad when they come. I have been feeling really well in week 3, eating well, sleeping well (although I still wake early) and I even enjoyed a couple of glass of rose at the weekend 😁. I also did a few hours of work from home and just loved the chance to be normal. Work are being amazing and totally flexible so I want to repay that by working when I am well.
Bonny, I was achy with the filgastrin too. Do you have any suggestions? I will ask the nurses tomorrow.
I have plucked up the courage to see a couple of friends and it was lovely. I feel brave enough to face people now. I have shaved my hair to grade 3 and even that is very patchy 😬. I am hoping to select a wig with the Macmillan hairdresser on Wednesday so I can feel a bit more like me as I had long red hair before.
Does anyone have trouble sleeping from the steroids? I literally can’t sleep after a couple of days on them and I wondered if anyone had experienced this and been given any suggestions?
OMG just writ the longest reply to you Bonny and lost my internet then lost the message! 🤬
I will try and sum up what I just put! I first had chemo in 2018 and like you got very achey after the injection, usually for about 3 days. Unlike you I only had one injection not 5. I wonder what others here are doing 1 or 5? This time I was expecting to be seriously achey but wasn’t nearly as bad as before although I haven’t done anything differently. Have you spoken to your team now? I hope they have been able to make you more comfortable and have a solution for your next cycle.
Hi Worried Now, welcome to the group but sorry you find yourself here. Tell us a bit about yourself. Have you had surgery or is chemo your first treatment? Chemo is my first but unfortunately not my first time. I had BC in my right breast HER2 in 2018 and now I have TN in my left. Yes pretty unlucky I know, but hopefully will get through this like I did the last time and get back to living life to the full ASAP.
Hopefully we can all support each other through this rubbish time and come out the other side together.
How is everyone else doing? I actually feel pretty good now. The lovely weather helps as I’ve been for some beautiful walks. Cancer seems to make me see life through HD vision, the smallest thing can seem so amazing.
Our vegan diet seems to be going well, I’ve invested in a few cookbooks to help me out like Bosh and Dirty Vegan. We were like you Steph and only ate meat a couple of times a week before but after watching all those Netflix programs It seemed like a good change to make. As this is my second time with the C I think I’m grasping at anything in the hope I get through this and don’t have to go through it again.
After last time with thoughts of life is short I took up Spanish lessons as I’d always wanted to learn. I have my class on Wednesday morning (zoom) so that’ll be a good distraction. I also decided to research and write up as a book my family history and I am going to have a look at that this afternoon, it can be very absorbing.
Are you managing to get any work done Kirsty? How is everyone else filling their time?
I hope you are all coping one way or another and able to have some nice times
i started my chemo on 9th and I too had my hair shaved by my daughters! As you say very liberating and puts us back in control 😉 sending big hugs and positive thoughts your way.
Initially the side effects of chemo weren’t too bad apart from the nausea and headaches (extra anti nausea meds added) but I started my Filgrastin injection on Tuesday for 5 days and have been experiencing all sorts! Worst of all joint pain to the point of not being able to walk. Nothing helped, paracetamol, hot water bottle. Eventually called oncology who advised 111 who sent paramedics. All my obs were normal so I was given oramorph as a temporary relief. I am in so much pain this morning and will call my team but I wondered if you or anyone on here had a similar experience or could give me any advice. I expected joint/ muscle pain but not to this extent.
Hi akynzeo and metoclopramide worked very well during chemo for me, not sickness or loss of taste or anything, might be worth asking about ❤️😘hope those helps 💕💕✨✨Shi xx
I am sorry you had such sickness and I really hope your team are on top of it now.I think Michelle is on the top of the range sickness med Emend.Expensive but apparently excellent, maybe worth pushing for if you still feel sick.As Michelle's team said and so did my Oncologist, there is no need to be/feel sick as there will be a med to help you.
I hope you are feeling more comfortable.Thinking of you and sending love
Hi pips sorry you’ve had an awful time of it. My unit always say ‘sickness is unacceptable’. They give me Emend, steroids, ondansetron and metopramide all for sickness. Having said that I still felt queasy, but not actually thrown up. Queasy feels a bit like an understatement because combined with the tiredness of the first few days it’s quite debilitating. Lying down and carbs help me but I think we just have to ride it out to an extent. I am day 6 and feeling almost normal.
I would say contact your unit and see if they can help, you should start to feel a little better each day.
I hope you feel better soon xx
Hi all. Hope your doing ok?
I had my first cycle of EC Monday. I felt a bit spaced out Tuesday like I’d smoked some illegal drugs, but Wednesday I was so nauseous i spent the whole day in the bathroom. I eventually got up to my local a&e where I waited for two hours. Then a lovely man came and jabbed me in the arse with a surprisingly painful injection. But it did the trick. Now I’ve got different sickness meds but they are only taking the edge off. Is the idea of no nausea a pipe dream?
My new meds are called cyclizine
Still feel kind of jittery. No position is comfortable.
I agree Steph carbs are very appealing at the moment!! I could have Toast for lunch and pasta for dinner every day but trying to vary it for the family. Although I made a sweet potato shepherds pie style meal with lentils, chickpeas and veg and ate it on the night but my mind keeps playing tricks and I keep imagining I can smell it and it is making me retch! I’ve also eaten a lot of rich tea biscuits but Today managed a vegan brownie that a friend had sent to me so things are on the up! Xx
Yet again I accidentally pressed send too early!I just wanted to add that I know how strange the whole thing is as I feel like that sometimes.I do try to see friends as long as they are well and we are safely outside.I find I feel so much better after fresh air and being with people.
Do let us know how your wig investigations go.There are plenty of great wigs about and I bet you could get one to match your gorgeous red hair if you wanted.
Take care and sending love
All fine here with me and just had a walk in the park and coffee on a bench with a friend.I agree that the exercise and social chat really helps.
I hope you are feeling OK as the days of the cycle tick by.I had to smile when you said your family had all gone vegan.There is not a chance my partner would give up meat! It had taken me 20 years to get him to do 2/3 veggie and 1 fish dish each week to cut down on meat, so the meat we do eat is free range and organic.
I am eating fine but I find I want toast, baked potatoes and pasta!How are yiy finding food?
Take care and sending love
How are you doing? I agree the sun helps to lift the spirits. It sounds like you were very organised with cooking and freezing. I have some meals that I made in the freezer but the whole family has since turned vegan! I know strange timing, we watched Seaspiracy and Gamechangers and I think for me if gave me something to focus on and something I could control when everything else seems out of my control.
So true, one foot in front of the other, we will get through this xx
pleased to hear you are feeling better. Reducing the chemo dose and upping the anti sickness meds sounds like a good plan, hopefully your 2nd cycle will run much smoother for you. It’s a horrible enough treatment as it is without added complications.
That sounds like a good Macmillan service at your hospital, I haven’t heard of that before. I’m cold capping for the first 3 treatments and when I go onto weekly I’ll see how much it falls out before I go for the shave. I do admire those of you who have braved the shave.
Unfortunately this isn’t a new experience for me, I went through it all in 2018 on my righty side and now have BC on my left side. I meet up with friends every weekday morning for a walk. It is the same 4 friends who I meet and I did the same last time. I found it really helped me mentally just to get out and chat about what’s on TV, our kids and other inconsequential stuff. Also it passes the time which helps and being outdoors and exercising is supposed to help reduce infection risk. I’m hope I don’t sound preachy each to there own and you have to just do what feels right for you. I completely understand what you mean about feeling different, I haven’t seen most of my friends since this second diagnosis because I can’t stand to see that look of sadness on their faces.
I seem to be feeling a little bit better and less sick each day. Hoping to have some good almost normal days before the next cycle.
I hope everyone else is doing ok xx
Thanks for welcoming me to the group. I am feeling so much better than last week, thank god. I saw the oncologist registrar today and they are going to reduce the chemo dose by a quarter and also up the strength of the anti nausea drugs so 🤞🤞 for next week.
The lovely Macmillan hairdresser at my hospital cut my hair really short today. It wasn’t too traumatic although when I go to a grade 2 next week, it might be! I have red hair so it’s tricky to colour match the wigs but she is on the hunt. I thought I would be ok with scarves but I just feel more me with hair so will go ahead with a wig for when I go out.
I am having a portocath fitted on Friday. Does anyone else have one? I am covered in bruises from the cannulas so hopefully it will work well.
I hope you’re all managing ok. Are you all seeing friends? I have been a bit unsure about seeing everyone. I feel different and don’t know how it will be or how I will cope. It’s all so new and unknown for us all.....
I am glad you were able to celebrate your daughter's birthday a little-just doing something normal is a boost I think. Although cold, the sun helps but maybe that's just me.
Walking the dog and cooking dinner in week 1 sounds a success Michelle!I too have returned to cooking dinner as opposed to family defrosting and heating up meals I cooked and froze.I will keep those meals in reserve for bad days!I feel surprisingly ok but expect it to change any minute!I have a constantly funny taste in my mouth and keep sipping a drink or nibbling ginger nuts.I also feel tired so I rest between doing things and had an afternoon nap yesterday after a little trip to an outdoor garden centre!
So we go on, putting one foot in front of the other in our bid for a future healthy life. Sending you all love and hugs and hoping you are all doing ok
Welcome to our group and it is lovely to meet you!
So sorry to hear your first chemo was so difficult and you felt so poorly.It must have been so very hard.Please 'go on' when and if you need/want to as we need to get things out and work through cancer experiences and the myriad of feelings they throw up.
Braving the shave was something I did and I am glad I did.I too, did not want to see clumps of hair everywhere.i look a bit thuggish as I still have a cm or so or hair but hats are now my best friend.
Take care and I hope your week goes well
Love Steph xx
welcome to the group Lindsay, I agree the more support the better. Sorry to hear your first chemo didn’t go so well, I hope your next one runs a little smoother and that you are feeling better now.
How is everyone else feeling? I’ve been feeling quite tired but did manage a walk with my dog and friends this morning. However apart from preparing tonight’s meal I have spent the rest of the day horizontal! I remember last time feeling really achey around this time but that hasn’t happened unless it happens tomorrow.
We managed a nice day yesterday for my daughters birthday, the family shared some champagne and I think that brightened it up for her!
Nice to hear your children are coping well Kirsty, it is a difficult time for everyone and I agree Zoom calls are better than nothing but not the same. My youngest is heading back to Uni at the weekend, I think it will be good for her to have a bit of space.
How are you doing Steph as you are a few days ahead? I’m still on/off queasy which I’m not enjoying.
sending good vibes to all xx
Hi, I hope you don’t mind if I join this forum as well as March.,I had my first cycle on 30th & 31st March so I kind of fit into both and it’s nice to get to know more ladies going through the same thing to help us all along.
I will read through your stories to get to know you. I was diagnosed in February with triple positive BC so am having 6-8 cycles of TCHP chemo then lumpectomy then radiotherapy then hormone therapy. My first cycle didn’t go well, I ended up staying in hospital for 5 days with neutropenia and a possible infection. I have never felt so dreadful so am really hoping they adjust the dosage next week....
I am shaving my hair off this week as I also can’t bear the disappointment of it gradually falling out. After feeling so bad, I am not really too worried about this now!
I will stop there as I could go on and on.... it will be nice to get to know you all,
So lovely to hear you are keeping positiviy and openess going with your two children.I agree that Zooming is just not the same (Good as it is) and I hope you can get to see your step children soon.
I didn't have an x Ray after the picc line fitting as they felt they did not need it and I just trusted their expertise.I have my weekly Picc line flush and dress today which will be my new Monday morning routine-oh lucky me!
Wishing you Kirsty and everyone else a good start to the week.
Love and best wishes
Welcome to a group none of us envisaged joining.Hopefully we can offer words of support as we travel the Treatment Road.
I bought a couple of wigs from Shein.I think for the price they are excellent.I also bought a couple of beanie type hats from Annabandana but I have a round face and they don't really suit me.I am not really a scarf person but there are loads available and if you Google headwrappers there are free online classes which teach you to tie them.I booked to do a class on Wednesday just out of interest so I will let you know how it goes.I suit hats/caps with brims so I bought a couple of baker boy style caps cheap in Accessorize sale. As you may have read my family cut and shaved my head the day before chemo as I did not want shoulder length hair slowly shedding.Everyone is different and chooses their way to deal with it.
You are certainly not behind in organising anything!If you leave your hair to fall out, I think it is from about day 14 after chemo 1-Michelle may know more.If you choose to brave the shave most Internet orders are relatively quick.
Enjoy a bit of online retail therapy even if it for headcoverings, something none of us thought we would be buying!
Have a good rest of the weekend.
Love Steph xx
Good morning all,
I hope you’re all doing ok?
Welcome Dawn, hope to chat and share experiences with you. Not something we want to be doing but for me being part of this group is making things easier. About headwear...I’m still awaiting some wigs I ordered from Shein but will let you know what they are like when they arrive. From another website (Bold Beanies) I have ordered some beanie style hats (thin soft material). I ordered Thursday and they arrived by post Saturday. They also do some lovely scarfs and picc line covers.
Michelle - Yep, I’m going to stick to the not driving back from sessions. Think it’s for the best. I get my picc line fitted just before my next session, which hopefully if it goes well will be better. On Friday it took them a few attempts to find a vein suitable to use.
A daily routine sounds good, walking and so on. Taking each day as it comes dependant on how we feel. I plan to do similar and only work for the time I feel able to do so.
I have a 10 year old Daughter and a 12 year old Son, both of which keep me busy. They’ve been amazing through all this. Luckily we’ve managed to keep a lot of positivity and laughter going at home, but also answered any concerns or questions they’ve had, which I think has helped us all with what’s going on.
I also have a two step Daughters 21 and 25 but they live further away so sadly not been able to see them for a while, apart from on zoom. The family zoom quiz nights have been quite fun!
I hope your Daughter has a lovely birthday and you all have a great family day.
Enjoy giving that piñata a big whack!
Steph - I get my picc line fitted on the 30th, thanks for the info on what happened when yours was done. Did they do an X-ray to check it after it’s fitted?
It’s good your work is being supportive and that you are home. Michelle’s advice regarding some sort of routine and a walk sounds like something I’m going to try and fit into my day. I completely agree that ironing can wait! And what is it with children and the amount of clothes they get through in the day? I’ve never got an empty wash basket!
Enjoy the rest of your weekends ladies. The sun is shining here and the gazebo is up so I might sit out there in a bit with a cuppa.
welcome to the group, although I’m sure you can think of things you’d rather be doing. I’m also having chemo before surgery. I had chemo with herceptin & Perjeta in 2018 on my right side and it worked well so far. Unfortunately I now have triple negative on my left side.
Im cold capping so can’t give much head covering advice. Steph or Kirsty recommended Shein.com for good quality/value fun wigs.
Although I’m sure like us all you don’t want to be on this path but hopefully we can support each other through this and make it a little more bearable.
Steph thanks for the info re picc line, I’m not looking forward to another trip to the cancer centre but like you say it saves the veins especially as I’ll be going on to weekly after my first 3 FEC.
Hi al. I’m starting my first round of chemotherapy on Monday 19th. I need Herceptin so I’m doing chemo before my mastectomy.
I feel a bit behind in organising some different head coverings for when I lose my hair. I’d be grateful for recommendations.
I am having 3x EC (no F) and 3x Docetaxel with trastuzumab and pertuzumab.
The picc line fitting was ok.It's under local anaesthetic and once they found a suitable vein it went in without a hitch.It seems to be standard to have the picc line flushed and redressed 24 hrs later as it does bleed quite a bit and they pack it with pads to absorb it. The flushing and dressing was painless and quick.Back on Monday for the weekly flush and dress.Yes more trips to the cancer centre but no hunt Steph's veins which has been a nightmare in the past.
Yes you are right about making a routine even without work, but I will put the ironing off as long as possible!
Hope you have a good weekend
Love Steph x
I think our last posts must have been sent in sinc Steph! Good to hear you haven’t experienced and more sickness.
I haven’t had my picc line fitted yet and am a bit nervous about it and not looking forward to weekly flushing. Are you finding it ok? I’m sure it’s better than mashing up my veins each cycle. Steph are you on 3FEC 3T? That’s similar to what I had last time and the steroids were ok on the FEC but ramped up on the T and that’s when I found the come down worse so fingers crossed you’re ok for now.
I fully understand not wanting to work in a school whilst undergoing treatment. As I said in my last message I think a routine helps but that doesn’t have to be work. My plan last time was to walk every morning and make the dinner every evening (my husband is a great support but cooking not his forte!) In between walking and dinner just do what I can. I have a few projects in the go and there’s always the ironing!😁 xx
Hi Kirsty and Michelle
I pressed send too early-a classic Steph trick!
I just wanted to say I hope you a both ok send have a good weekend.
Sending love, hugs and positive vibes
Glad treatment went well Kirsty. I was told I wasn’t able to drive back and have to say not sure I would have wanted to. Although I didn’t feel too foggy I felt quite fragile and just wanted to be home.
Ive been stuffing the anti sickness meds down and thankfully they are working well. I fell asleep early last night, it was a very broken sleep but a long one!
Today I’ve been for a walk and now resting and reading. Do you both have the injection 24 hours post chemo? From memory that makes you feel quite achey for a couple of days but I think it stimulates white blood cells so must be good.
Taking work day by day is a good plan Kirsty snd great that they are being understanding. I think having a routine helps get you through this.
It’s my eldest daughters birthday tomorrow, she will be 23. I’m hoping I don’t feel too bad so we can celebrate. We’ve got a piñata to smash as a bit of a joke, I might give it a few wacks pretending it’s cancer!! My other daughter is 21. I think you both have younger kids, I’m sure they keep you distracted and busy.
Speak soon xx
Hi Kirsty and Michelle
Glad your first chemos went well.It is a strange experience and I yes I do think there is alcohol in EC which I had and in others.I got a lift to hospital and home-its only 10 minutes away and my partner still works from home so arranged things around it.I am planning to do that dmfor the other chemo but I drive myself there for the exciting weekly picc line flush and dress!
After that one episode of sickness on day 2 I have been fine.Taken required meds but have not as yet needed anything extra. I am also just taking one day at a time and expecting a downward swing after steroids stop today-but who knows?!
I am signed off work and have been since my op at the end of January. I work in a school closely with pupils and my type of work means I cannot work from home.Luckily school is really supportive and understand I will not be back for a long time. I can understand the need and want to work but I really hope Kirsty that your employers understand and support you if you feel unable to work.
I do find it strange being at home and I potter about trying not to do too much-as is my want when I feel ok!A mixture of gardening, cooking, TV, reading, a nap or a short walk depending on energy levels!
Hi Steph and Michelle,
Glad to hear both your treatments went well, sorry to hear you were sick though Steph - hope you’re doing better now?
My treatment went well, I just had the odd feeling of sickness later in the day and first thing this morning, which I find passes when I’ve taken the sickness meds or if I eat sugar free mints in between.
Did anyone walk out of their treatment feeling a little like they’d had a few glasses of wine (bit wobbly and taking a little longer than usual to process stuff, I think they call it chemo brain!)?
I was told I could drive after treatment but luckily I didn’t this time and I’m not sure that’s right? I’ve read somewhere that there is some form of alcohol in the chemo meds! Do either of you drive and if so what were you advised about driving after treatment?
Michelle I do work full time in admin (from home at the moment) and actually came home and worked after treatment. Things took a little longer for me to do than usual, but it was ok. However, I am going to take it day by day and work when I feel able to. Luckily my work have been massively supportive.
Keep me posted as to how you both are. Speak soon, big hugs
Hi Steph and Kirsty
i am back home, all ran smoothly, just waiting for the queasyness to hit. I’m drinking lots of squash to try and flush through. I don’t know if this actually works but it feels like you’re doing something. Sorry to hear you were sick on your first night Steph but good thing seem to be improving. I had FEC-T last time and they upped the steroids on T which I hated the come down of. I think it is lower dose on FEC so hopefully not as much as a come down.
I hope your treatment ran smoothly Kirsty and you are home and feeling ok.
Do either of you work? If so what are your work plans during chemo? I don’t work but have planned a few things to get on with when I can focus.
Hope you both enjoy the weekend xx
All ok here thanks and yes writing things down daily is really helpful.As I said to Kirsty, the steroids effected my first nights sleep but slept better last night.
Hope today goes well for you and will be thinking of you.
Love Steph (LML) but I am called Steph xx
Good luck today.I am sure it will all go well and it is a great feeling to get the first one done. I have felt ok i think.I couldn't sleep well on the night of the chemo as I had it late and so the steroids kept me awake.I was sick when I woke up but once I took the meds I was given, I felt fine.I have just woken up from a better night's sleep having taken my last steroid at 2pm yesterday.No sickness or nausea just tiredness and a feeling of being hungover but without having had a good night out!
Glad your hair experience went well and I too reach for my normal shampoo for long, coloured hair!I need a good sort out to put all haircare stuff away.I am not going to be using straighteners for a while!
Again,good luck today and will be thinking of you
Love Steph (LML) but I am called Steph xx
Sorry I’ve just seen your update after replying to a previous thread!
Glad all went well and hope you managed to get some rest.
Take care, speak soon
Hope you’re doing ok and managing to get your head around the change of plan. I find they sometimes give you loads of info at once and it can be a lot to take in.
Would love you to still be part of this group and keep us updated with how you are doing.
Take care and speak soon
How are you feeling after your session yesterday?
My pre assessment went well and I am still due to start chemo tomorrow.
My hair was cut by my chap and our daughter last night. Did the same as you with photos and fun styles, made it easier 🙂 It did take a while as my hair was very long and really thick!
Your right regarding the shower, however I did find myself still using my miracle moist shampoo, out of habit!
I’m having my treatment tomorrow without the Picc line, they couldn’t fit that in until just before the next session.
Take care and speak soon
Hi LML, pleased to hear it all went ok for you. Are you making a note of how you feel each day? I did that last time and each cycle seems to go the same so it’s handy to keep a note.
I hope you continue to feel well and I will let you know how it goes for me tomorrow xx
Good Evening All
All went well with Chemo 1 (EC)and the nurses were just lovely.They really put you at ease.As I expected the picc line fitting before it was a bit of a kerfuffle as my veins hide-hence needing a picc line On attempt 4 they did it and again, the staff were so lovely.
I feel fine now-but that will change i am sure.Off to bed as shattered after it all.
Hope you are all ok and look forward to hearing how you are all doing.
Love and best wishes
Glad you now have a plan of action, being in limbo is a hard place to be. There are so many different treatments now I hope this one runs smoothly for you. I will miss you on the group as you are someone else who is going through this again so please do pop in and let us know how you are getting on. There are lots of different threads I’m sure you will find one. It is always comforting finding others with similar experiences. Less lonely.
I wish you well
Yes I imagine you are trying to get your head around a lot of new information. There will certainly be others who are on that treatment journey who will be able to give you first hand information.There are so many amazing drugs and combinations available and you sound as through you will be very well monitored.
Do keeping touch and let us know how you are doing.
Love and best wishes