Evening ladies !
Has anyone started TCHP at all ? I wondered how you are feeling. I had HP on Tuesday then TC on Weds and I’m wiped out; really achey. I’m wondering if this feeling is caused by the filigrastim injection or the chemo ?
Lovely to hear from you. Sounds like you have the same treatment plan as me. I was told the same by my nurse about the hair loss I haven chosen to do nothing as yet and will cut it shorter as it starts to fall out. I have head coverings at the ready and even a wig, which I must say resembles my natural hair so much.
I must say I do feel women should get more emotional support around the ops and hair loss. I had a mastectomy which is already a big loss to deal with and next it will be my hair. I just feel more in depth discussions should take place to support women's mental health around this. I'm sure many suffer with depression as your whole femininity feels like it is disappearing before your very eyes.
Good luck with your cycle. Sending love and hugs ❤
Its lovely to hear from you and that you find comfort in our posts.
My oncologist said to cut your hair short but not to shave until you are ready . Unfortunately my husband did a terrible job of mine so I decided it was best to shave it . It’s about an inch long all over now. It’s been a week and I’m use to it now. I don’t start my chemo until Friday .
I made different turban headbands to brighten my head. Maybe a start of a new fashion 🤣.
So there is no right time . You do what you feel is right for you . ❤️
I have just had my first chemo session on 13th May and it's really good to hear that other people feel the same as I do. I had my op lumpectomy HER positive and lmph node removal on 2nd March, 7 lymph nodes cancer positive. Even after the op it's hard to believe that there is still so much of a fight ahead. The nausea, constipation, etc I can identify with over the last few days, but that's one step taken now, 5 more chemo sessions then radiotherapy!
I too have been stressing about my hair as what is best to do, so good to hear other have the same concerns. When I asked how long it would take for it fall out the nurse told me I will have none left when I return for my next session on 3rd June. I am also prepared with scarves caps etc but the dilemma is to use the clippers now or to wait until it starts to fall out. I don't think there is a right answer and it is one that needs to be done when the time feels best.
I would like to say thank you to everyone on here for their brave posts as although this is my first post I get a lot of comfort for reading posts knowing I am not the only one on this journey.
Take care and stay safe
Yes my temperature also seemed to hover about 36 in the first week after treatment. Which meant when it went up to 37.7 and I felt rubbish I knew I needed to do something about it! (Three days in hospital later...)
Sorry you had a scary experience Trish but glad you're weathering it. I'm just near the end of my first cycle now and wondering what the second will bring!
Enjoy the sunny weekend everyone (carefully of course!)
Trish you did the right thing. Thank goodness you have lovely neighbours.
Hope you feel more human by the weekend so you can enjoy the sun .( With factor 3,000 and covering😊) .
My temperature seems to be 36 underarm and in mouth . I’m thinking of getting a second thermometer 🌡. Husband thinks I’m overreacting . I will probably take it with me for my first cycle and compare with the hospital one.
They aren’t easy to get hold of at the moment .
Im unable to take codeine so have to rely on paracetamol. It’s hard to get hold of and then you are rationed even without a pandemic! Luckily they are going to prescribe a decent amount for me.
I’ve been told not to take paracetamol if I have a temperature so it’s going to be interesting if I’m in pain . 🤔
Now I know why they call it a rollercoaster and I haven’t even started yet!
Take Care and thank you for updating us Trish XXX
Oh Trish, bless you! Glad you got checked out, and that you are ok.
Yeah the 1st cycle is a rollercoaster of what's happening now and is it 'normal'?
Everytime I've checked something out it has turned out to be nothing to worry about, and I feel a bit of a nuisance but it's better to be sure.
My oral thermometer never took a decent temp...it was always 35 something or lower! However, we got a better ear one and that's much more accurate.
Sounds like you've got a fab support team around you!
Sending love and hugs. You take care!
Thanks Lisa! Reassuring to hear that your early symptoms were similar. I'm just hoping that after the first cycle I get better at recognising what happens when, and develop a sense for what to worry about and what's 'normal'. My 'someone like me' volunteer advised me to keep a detailed symptom diary to help me track the pattern of symptoms across the cycles and build up a sense of what to expect when. So that's what I'm doing and making notes of what makes symptoms worse or better. There's not room for this in the little book given to me by the unit, so I'm using my own diary.
Glad to hear that you're feeling yourself in week 2 - that sounds like a RESULT to me!
Hugs, Trish x
Oh bless you Trish, what a stressful experience for you. Glad you are feeling better.
Yes my temperature norm seems to be 36. This is what I find the hardest in all this is to decide what is ok with after affects of chemo and what isn't. What you have described is roughly how I felt after my first one, nausea, flushed face, shivers and lightheaded. For the first few days I can only describe it as feeling like a constant hangover. I'm in my second week now and I feel back to my normal self.
It does worry me though having the responsibility to decide if I need medical attention or not.
Hope you continue to improve, you have done so well and yes not easy when you live alone. We are all here for you if you need to chat.
Good morning you lovely lot!
Just checking in after my first chemo on Wednesday afternoon.
I had an A&E adventure on my first night! After an early night I woke up feeling a bit weird and shivery and took my temperature which was below 36C. These were two of the symptoms on my 'red list' so I called the 24 hour line and was told to check again in half an hour and if it was still low to go in to A&E. This was 10.30pm. Now, I live on my own (which is one of my reasons for being cautious as there's no-one to notice if I should get ill) so I duly checked half an hour later then called my neighbour, whose is my nearest emergency contact, and she got out of bed to take me in. To cut a long story short, I was there until 3am. I was given a full round of tests including bloods, ECG, urine test. Although I was triaged quickly, in a side room, I had to wait for an hour and a half in the waiting room for the results of the blood tests, and then for the doctor to check me over. I felt fairly, but not perfectly safe. It was very quiet, with two or three other 'customers' in, some of whom were doing some restless pacing, and there was a less populated adjacent reception area where I was directed to wait. I would have preferred to have waited in isolation, but that wasn't offered and I was feeling too anxious, tired and queasy to even think of questioning it. I had my dutifully packed emergency bag with me but of course the thing I'd forgotten to put in it was the bag of meds I'd been sent home with in the afternoon, so when I started feeling a bit nauseous about 2am, (12 hours after my chemo started) I had nothing to take. Fortunately I did have a list of my meds with me, I asked a nurse and she got it for me. The next morning I reported this all back to my chemo nurse and she said, 'Oh I wouldn't worry unless your temperature drops into the low 35s'. So I probably risked A&E for nothing, but I know now. Also, having taken my temp daily since then, I realised that normal for me seems to be just below 36, so for those of you who haven't started yet it might be an idea to get an idea of your normal temp for a week or so before you start.
Yesterday I didn't feel great in the morning. I had to call my other nominated emergency friend (now called 'matron') to come over and help me because I didn't feel well enough to get up for a drink of water, deal with my meds, or (most importantly) feed the cat and (especially) remove the poo from the litter tray. It felt a bit like car sickness. I've been taking all my anti-sickness meds, both those I was advised to take and the 'as and when' extra tablet. I wasn't sick, though, it was more that my head started swimming when I sat up, stood up or moved around. So I had the best part of the day in bed with my own personal matron looking after me and 'working from home' in my dining room. She provided me with a little bell to ring when I need help; I felt like a proper invalid. I did feel a lot better by the end of the day, and managed to sit up, eat some tea and phone a couple of friends.
This morning I feel much better although my face has gone very flushed. In fact, I feel so much better that I had a ten minute walk at 5am while it's deserted. It was lovely to get some fresh air.
So that's my first day or so.. who knows how this is going to unfold but I'm thankful that I feel pretty OK at least for now.
I hope you're all getting along great
Good luck today Trish + Sarah! Hope it all goes as smoothly as possible. Thinking of you both 🙂
Loving the animal photos, they're such a comfort on miserable days!
Hope everyone is staying safe + well xx
Good luck to all you lovely ladies having their cocktails today. ❤️
Hello to you all on this sunny day. I often think we are lucky ( as weird as that sounds ) that we are going through this in the summer months . I always find winter a bit depressing .
You can’t beat the love of a pet. My excuse to put photo of my 14 month old Labrador up.😊
You can’t beat the attitude of a cat. 🤣
Oh, do query that because it's not! FEC is 5-flouracil, epirubicin and the c might be cyclophosphamide but I'm not sure. Weird. Hardly reassuring!
Not meaning to be stalkerish but I think I've come across you in a FB group.........kinda weird this social media "meeting"...
I'm ok. Went for a lovely walk this morning and got some lovely gifts. My partner is off for a click and collect shop and hopefully I'll get some Jelly Babies! It really is the little things......
Take care x
Thanks Fiona! I'm having EC today. Been out for a long early walk to calm the mind and body...
Here's my cat. She doesn't care about what's happening so long as she has her fish.
Have a great day everybody
Sarah is indeed correct and happier to go by that name 😀.
I had Herceptin and Pertuzumab yesterday. Minor possible reaction to the Herceptin about an hour later, so they used anti histamine and hydrocortisone on me and monitored me for longer. Ended being there 11 hours. A lower back pain last night but nothing worse than period pain.
It’s Docetaxel and Carboplatin today. The notes my chemo nurse gave me are saying I’m having FEC today so I’ve got to sort that mess out first. I queried it yesterday and she told me it was the same thing but I’m pretty sure it’s not.
How are you ?
Hey Enyoc (I want to say Sarah but I might have got that wrong?) How are you feeling after yesterday? Hope everything went ok and thinking of you.
That's great news!!
I won't forget that date as that's when my next blood test is due prior to chemo round 2 on the 25th.
Here is to some well earned relaxation for you before then.
Hahaha!! I'm DELIGHTED! Told you I'd ramped up the vibes.....
Not strange at all lovely....you can prep mentally, and as you say, relax over the weekend.
I love you Fiona 🤣
Appointment came through today. ( weird ). I was just about to call them .
22nd May 10.00am.
I feel less anxious now. How strange is that? I’m sure I will feel anxious next week but at least I know I can enjoy the sun this weekend. 😊
Love you ladies. I wish we could all meet and have a party after this . ❤️
You are awesome lovely lady! Awesome. And wow...you are doing well, 3 weeks??? I would have imploded! It was bad enough waiting a week!! Major kudos to you.......no wonder you're on edge! I have such respect that you're not a gibberish wreck. I certainly would have been!
Right, kick ass vibes have moved up a notch!!
And try 5am for a walk....you can always go back to bed like I do 😂😂😂😂
Thank you everyone .
You have made me feel so much better.
I will call the oncology department today.
It’s stupid I know but part of me wants to know and another part of me is fighting wanting to know. 🤦♀️
I have had all my bloods and heart scan done two weeks ago. They said 2 to 3 weeks then. So I’m into third week I think 🤔. One day falls into another .
I have contacted Maggie’s as my work are not getting back to me about pay. I feel I’m fighting everything and really don’t need it.
I have everything ready now . Silk pillowcases , soft toothbrushes , hats, moisturiser etc. Fridge and freezer full. Husband can’t take leave as we don’t know when it’s all happening . So I’ve done everything I can.
I have Headspace . I really like it and it works. It comes in waves. I think it’s because I know it’s getting closer.
I have been making hair bands and masks . My sewing area is the tidiest it’s ever been 😊.
I will try all the activities you suggest.😊.
One positive, the surgery scars are really healing well. I had a lumpectomy and a few nodes removed. They were clear. I’m so lucky I know. My breasts are massive so there isn’t any change in appearance . He took the tumour which was deep and towards the chest wall from under the nibble. I have just a bit of glue and a very blue boob to show for it. 🤣
My husband took the dog for a walk yesterday around 6pm and said it’s really busy since the announcement on Sunday. He took her through fields and along a country lane that normally is empty but encountered 3 other walkers. I think it’s going to be harder finding a quiet time to walk but I’ll take advice. I know it’s mean but this isolation was feeling ok because everybody was doing it. Now I think I will feel a bit jealous if restrictions are lifted. I’m not proud of myself for feeling like that.
I’ll let you know how I get on . Thank you lovely ladies And big big hugs 🤗😘
Oh bless you, Tricia!! Waiting (for anything) is torture, isn't it? The ladies have given excellent advice already.
I'd definitely talk to your GP - there is no point struggling unnecessarily, as someone pointed out, the cancer journey itself is gonna take all our resources.
How long ago did you talk to the oncologist about side effects? I'd call the oncology unit to ask them if they know what the delay is, and when you're likely to get a start date, because you're feeling anxious etc and it's having x,y,z impact. They know people are anxious, they deal with it every day so hopefully you should get some reassurance from them. And you wouldn't be bothering them, it's their job, and it's your treatment and you have a right to know what's going on.
It's fantastic that you are doing your CBT and mindfulness - I find it helpful to remember that the goal is not to change how we are feeling, but to acknowledge it as it is. Your anxiety is 100% natural, normal, reasonable etc.
I personally use Headspace, when you become aware of your anxiety and tension (I know - all the time, right?) try to note it as a 'feeling' and go back to whatever you are doing (painting, reading, watching tv, cooking) with 100% attention on the details of what you are doing - the textures, colours, sensations etc. Some people even "narrate" their activities "now I am peeling this potato, there is a rotten piece which I am cutting out, I am picking up the next potato" sounds weird but it occupies the toddler that is our brain sometimes! If you give it something to do it's less likely to rattle its playpen?
I also use square breathing? It's a technique where you split the act of breathing into four stages - inhalation, pause before exhale, exhale, pause before inhale. And you do each stage to the same count. If you're very tense, it could be to a count of 1. Or a count of 2 building up slowly to a count of 4, sometimes 5 etc. That has the advantage of activating both the parasympathetic nervous system AND occupying your 'toddler'.
Hope this makes sense and I'm sure something of what we've written will help. Also, sharing and being heard and seen in our fear and stress is of itself sometimes truly helpful.
I will send "kick ass" vibes out in the ether towards your oncology team! Hope you hear soon....keep talking to us, we're here for you.
Lots of love and a huge hug if you do them.
Oh and Tricia, I had a long conversation with the oncology nurse yesterday about shielding and going out. I go out for a walk every morning really early before anyone else is about, and was dreading being advised not to do so. She agreed with me that it was a low risk activity, as I hardly encounter another person, and never at close quarters, and I should continue to do it throughout treatment because of the need also to look after my mental health. Everyone's situation and advice will be different, but as far as dog walking goes I'd have though that you would be able to make a judgement about how safe it is to walk where you live, and what might be the safest time of day to do it.
I know, too, that feeling of jumping every time the phone rings. I had it every day for the week leading up to my surgery when I'd been told that I may or may not get my surgery due to the pandemic. I know that when I was eventually told (on the morning of the surgery!) that it could go ahead I was so relieved that I was getting it I didn't worry about the actual surgery at all! I hope you get your date soon. When I was dealing with the off-on surgery anxiety a friend of mine said to work on the squeaky gate principle (it's the gate that squeaks that gets fixed) and I did force myself to be more assertive than is comfortable for me in ringing the breast nurses and, at one point, the consultant's secretary, to check up and prompt them for information (very nicely - not in an aggressive way but just being persistent). I don't know if it made any difference but it did make me feel a bit more in control of the situation.
The waiting from day one of diagnosis is the constant mental torture that I have found the most difficult. I can deal with stuff when I know what is happening but it is the unknown that I struggle with. So I totally relate to what you are saying. The cancer journey itself combined with the Covid pandemic will take all our strength to deal with.
I'm sure you will hear soon as there is an acceptable time frame for everything. I just got in the recommended 12 week time frame for starting chemo post op. Once I got a date it was like a whirlwind with scans, blood tests etc.
Even now I find preparing practically, making sure I have everything I need helps to occupy me. Also I have a set of exercises I do everyday, drinks that I make and reading that I do. I find a planned routine helps me get through the day. I video call family and friends which helps too.
Try to make the most of the time you have before treatment as once it starts that brings a whole new set of obstacles.
Sending love and hugs. You are doing amazing ❤
This may or may not work for you, but..
One of the things suggested to me by my counsellor for dealing with anxieties is to write them down on a piece of paper and then literally put them in a box, put the lid on and put the box away somewhere - on a shelf, in a cupboard, or similar. That way you acknowledge the anxieties and get them out of your head and onto the paper, and literally put them away. So you're not pretending that they don't exist (which is impossible!), but you are managing them somehow. I was sceptical but I did it and there is something about it that kind of worked for me. The other thing I'd suggest is to make a call to the Breast Cancer Now line and talk it through with someone there.
It's such a difficult time isn't it. I feel that the pandemic situation is keeping me in a state of high alert, which makes it even more difficult to deal with the natural anxieties related to treatment, especially when waiting for dates or results.
Sorry to hear you're still waiting - how long ago did you see the oncologist? You could try ringing the oncology unit to see if they know when they're expecting you, or the oncologist's secretary to see if your notes have been given a date.
What is it you think is causing the biggest anxiety? Side effects, treatment delays? Maybe we can help to reassure 🙂
If you're really struggling though, your GP would want to know to talk it through. And if you think walking the dog will help, it should be very safe to do so if you're careful!
Hi ruby , no advice really but just wanted to say that I feel exactly the same , I’m starting my chemo on may 21st and frightened and like you so anxious, with this lockdown making it so much worse it’s all I can think about and so hard to distract myself xxx
Good morning ,
Hope you are all feeling better.
I still haven’t got a start date and it’s really causing my anxiety to go through the roof!
Every time the phone rings my heart rate shoots up. I’m not eating ( probably not a bad thing ). I’m not motivated to do anything .
if I could go out in the normal world I would probably be ok. I would have gone swimming , walk the dog and meet up with friends and family . Under the present situation it’s not possible. I’m feeling trapped.
I wasn’t too bad when I went through the possible side effects with the oncologist. Now time is dragging on, my anxiety is bubbling over. I’ve been doing my mindfulness and CBT but it’s not helping . I may have to phone the doctor .
Any advice would be gratefully received .
Ignore my last comment, I read it that you had 4 side effects hit on the same day but having re-read it I see you mean you had all 4 drugs on the same day. Foggy brain, sorry !
😂😂😂😂😂😂😂😂 flipping 'eck! How stupid do I feel? That's classic, and I will ask!
I'm on a FB group for bc, and someone posted a "word of the day".....exhaustipated. Too tired to give a 💩💩💩 😂😂😂😂
Alternatively, knackered after trying to have one!! Sorry but these did make me laugh. Hope they make you smile too.....
Eek, poor you x
did you have H&P on day one then T&C on day two? They’ve told me that’s what they will do for the first round x
Oh sorry, cba is can't be @rsed! Don't think you're allowed any remotely bad language on here!?
I don't know whether they're an over-precaution, especially given we're all shielding. It might be worth asking the question though Fiona. Apparently they don't usually give them but they're trying to reduce the cell count drops cos of Covid-19.
How many days post chemo are you now? I'll cross my fingers your hair stays put! Period on top of chemo side effects, delightful! No idea if it usually stops them from first cycle, maybe takes an accumulation? I'm getting Zoladex injections, not sure if that'll stop them or not.
Sarah -started TCHP last Thursday. No issues at all on the day, but getting 4 of them on the same day took me to about 9hrs on the ward! They only make up the Herceptin/pertuzumab when you arrive with the drugs being so expensive, so was a bit of a delay. Take something to read 🙂 and snacks! xx
What is cba, please? And should I be worried that I'm not getting white cell boosting injections?
Aw, Sam I SOOOOOOO hear you on the tender face thing! I'm using that mouthwash too.
My scalp isn't so tender now and I wonder if that means I'm not going to lose my hair or if it's going to take longer, oh, and I have my period too!! I thought chemo was supposed to stop them? Maybe too early......
Let's embrace the ragey rants and the venting then. Thanks lovely ladies xxx
Welcome Sarah 🙂
Strap yourself in for a fun ride! Sorry to hear you're on board with us and that it sneakily disguised as cysts at your recall, that's so frustrating and thank goodness you followed it up.
Don't google, whatever you do! It will have you dead and buried and feeling hopeless. What you have instead is a good plan of strong chemo, the anti HER2 meds, I imagine some radio, hormone tablets and a surgeon - each of these things added up give you the best chance, regardless of stages or grades or google.
Snap with regards to your drug combo. Makes for a looooong day but you'll get through it. We're all here for you with any worries/rants/anything you need xxx
Dear me, no upset and nothing at all to apologise for! Maybe just me but I think rants and vulnerabilities really help drive home how much we have in common going through this - your rage emoji is very much me today Fiona!
I'm glad you're feeling a little better, chemo does actually suck and I really hear you on the bee stings front! Today I am fuzzy headed, irritable, have a sore mouth, bit of indigestion and a tender face - all combined to make me quite low level aggro, haha. Plus I love food and it is distinctly less enjoyable than usual right now!
I picked up some Difflam (benzydamine) mouthwash before chemo started and trying to swill that when I notice my mouth is sore - maybe worth an investment! It kinda helps?
Really cba with the white cell boosting injections, not sure if they're causing more stomach upset than the chemo! Will persevere and just whinge each evening 🙄
Whoever said they feel like they have a hangover - YES. It is RUBBISH.
Hope everyone has a good day. This WILL end. xxx
Aw, thank you.....I did feel just a wee tad silly, but thank you ladies!
I do feel a bit better (every cloud eventually moves on, right?) and my mouth is definitely less sore, so yay. I think it's the Nystan that's helping so maybe I did have a wee touch of thrush....lovely 🥴
Lesson from this....never delay picking up the phone to oncology team, they really are there to help, and it is much, MUCH better to nip things in the bud than develop bigger problems by ignoring.
We got this. Ups, downs, uturns and everything. We got this.
Absolutely not, Fiona! If we can't say what we really feel on here, where can we say it? We're all here to support each other. Hope you're feeling a bit better.
Hey guys - sorry. Feeling a little (lot) foolish and a wee bit like I messed up....hope I didn't upset anyone, and true apologies if I did....
Im from the feb 2020 group and just wanted to send you a hug. Im.48 too with 2 children. Diagnosed in january with triple negative breast cancer grade 3 with 2 lymph nodes and i necrotic node . Im currently half way through chemo cycle but a different regime to you. Then will be looking at sugery not sure what that will be as yet. Currently awaiting on results from gene tests
Just wanted to say hello and if i can help in any way just ask. Same to any other person on here.