Im so pleased it is going well for you.
I still have to wait for my appointment to start.
I think you are right to take the medication regardless. I have been advised the same.
Hope you get to enjoy the beautiful Bank Holiday weekend.
I thought I would pop on again with an update as I started my chemo on Monday. I don't want to jinx things but so far so good.
I get tired by late afternoon and I wake up really early. Appetite still good and other symptoms minimal. I took the advice and took all the anti sickness medication even when I didn't feel nauseous, I take paracetamol for my head, I've took the steroids and I am giving myself the booster injections. Hopefully this is all helping the cause. I suppose I'm still wary of the days ahead but taking it one day at a time.
Hugs to everyone ❤
Well happy birthday for Wednesday, Fiona! Hope you're over the worst of it enough to celebrate and I will raise some kind of a glass to you - probably ginger beer!
I'm well supported at home thanks - I'm a real planner and have had everything in place since well before surgery! Originally there was a rota of friends who were going to stay over with me at crucial points. That's all had to be cancelled because of coronavirus, but my best friend is my emergency backup and if I need it she'll move in with me. I'm not seeing my friends in person but I talk to them on the phone every day and I have great neighbours who are picking up shopping for me etc. Glad to hear that you and your partner are making it work for you, and I know what you mean about the strangely positive side of going through this during lockdown.
Take care, rest up, feel well
I LOVE the emoticon!!! Yeeeehaaaa!
So glad you are getting the support/info you need.
If you do get an NHS prescription for a wig......drop me a line. I don't know how it works, but the lady I spoke to was FAB!!
I've got a cool bitmoji going on, but not sure I can share it here........
Way cool! I've learned something nooo!
I think you should ROCK the Hollywood starlet mojo "dahling"!!
The lady from Brown's that the NHS orthotics dept gave me definitely had a RIGHT "Wye-aye" gannin on! (I used to work in Sunderland a long, long, long time ago!) If you do get an NHS prescription for a wig, then if Brown's is one of the options (not sure how it works with health boards etc) then she is freaking AWESOME!!
You start chemo on my birthday!! So I'll be sure to remember you on Wednesday. The anticipation is definitely worse....but I think if we all came on and went "chemo's fine, it's the rest that's pants" probably no one would go!! Everyone reacts very differently and I think that is what truly SUCKS. You just don't know until your body tells you! I'm hoping that I'm over the worst of it. I know I am so incredibly lucky not to be dealing with this on my own! My partner is on furlough too so at least she is not juggling responsibilities and we are for a time, financially secure. It makes such a huge difference knowing that. I hate all the toxic positivity that can go around, but I genuinely have been so profoundly thankful that I have (for example) a garden. It's a postage stamp, but still! And bizarrely, I'm kind of grateful that this is happening during the lockdown because (this will sound weird, I know!) it is giving us both "something to do". I hear from family and friends who are ready to commit murder out of boredom and are under each others feet all the time.....we're too knackered to get in our own way! At least, that's how things are just now.
All in all it's just 100% weird ass......
For your chemo start, Trish....do remember to write down any questions in advance. I forget half of mine. And if you are living on your own, get the nurses to take notes for you. Jot things down. Have you got in touch with your community support hubs to make sure you have everything you need? I think your local council will have a note of these, or maybe your gp practice.
DO phone your breast care nurse, the oncology ward and if you are unwell the cancer treatment line. Make use of the resources that are there. And obviously we'll be here for you (*friends* theme music starts playing.........)
I do wonder sometimes if I've lost a marble and found a.............bean bag?
I'm glad to hear that today is slightly better, Fiona, and that co-codamol seems to be keeping the achiness and soreness at bay. It helps me to hear that although it's unpleasant you're finding it bearable. I hope you continue to feel a bit better as the days go on.
Loving the idea of the blonde wig. I am thinking of going red. And off to buy a silk pillowcase like a Hollywood starlet.
So pleased you are coping well.
I’m still waiting for a start date but told it will be most liked next week .
Im talking to Maggie’s about financial situation. They have been really understanding .
Spoken to the Cancer hair/ wellbeing people and they are sending some goodies out . A specialist will be in contact .
You have all been an inspiration and such helpful tips.
Thank you all so much .
Fiona thank you for being so positive.
I’ve changed my emoji in preparation 🤣
So today is slightly better. Could have SCREAMED yesterday. Sitting wasn't comfortable, standing wasn't comfortable, lying wasn't comfortable! Breathing wasn't comfortable (ok, well now I'm just exaggerating for effect). Felt like I was going out my mind!!
I reckon I'm not doing too bad post chemo#1 Nausea for the first 36 hours and then kept at bay by taking the meds and avoiding milk!! Salty stuff definitely helping on that front.
Then I had fatigue/sleepiness in that I slept for about 24 hours...then photosensitivity, constipation and lethargy (went to hospital with all of those for a check up - everything ok) and since Sunday night every single part of me feels sore, achy and tender. Got some good advice from the NHS wig lady (SUCH a nice lady!!) who recommended a silk pillowcase to reduce friction so that my head turns more easily on the pillow and doesn't result in "hot spots".
For ladies not using the cold cap (I know there are a few of us here) she recommended simple shampoo or baby shampoo (stores own rather than named brands - less parabens?) to wash scalp a couple times a week (other washes/soaps being too strong) and something like e45 or non scented cream 2ce week to moisturise scalp and prevent it getting too tight or spotty?
I'm quite excited - getting a blonde wig!! Never been blonde in my life and I don't have to worry about roots 🤣🤣🤣🤣🤣!
Still quite achey and sore but gp has suggested cocodamol which seems to be helping keep it under control.
I would say my experience has been unpleasant but bearable. Hope everyone here is bearing up ok. Love and hugs
I've been away from here for a bit. Tired, overwhelmed, not feeling great. In fact, feeling too pooped to type! Will check in again soon.....just tired, fed up but fundamentally ok.
Love to all xx
👍earrings and statement necklace if you have one 👍 do whatever you want ❤️ Keep looking into your eyes in reflections, you are still there, just look different but it’s still you, don’t forget that ❤️❤️😘💕💕✨✨Shi xx
Get your lippy and make up on before the clip ❤️ I didn’t and ended up looking like action man, looked better once bit of lippy and face on 😘 just a tip ❤️ It’s hard but empowering ❤️ 💕💕✨✨Shi xx
We bought some clippers online to do my husband’s hair and ultimately mine. Another unforeseen side effect of lockdown - nearly all the clippers were sold out! Daughter did my husband’s hair at the weekend, looks a bit convict-like! Dreading the moment but suppose it’ll come soon
Oh, good luck with that tonight! I've seen lots of lockdown buzz cuts already... I've decided to order some clippers and just go for it when they arrive. Let us know how you get on!
Im in the sane position as you. Thick hair needing to cut it before Chemo.
Only difference . I have a husband that can’t wait to help me cut it. 🤦♀️. If you could see how he prunes our trees . Not good. I know behind his enthusiasm he is very worried for me.
I bought clippers ready. Shaved my husbands to get the hang of them. I’m sure the “hacked look” will be quite fashionable this summer. For Chemo and non chemo people 🤣.
At least no one will see us as we will be shielding . Summer means big hats too.
Just go for it Trish . I’m doing mine tonight after a drink . X
Oh, I've just come across the Cancer Hair Care charity who are offering Hairloss Help at Home support. Here's the link, if you're interested: https://www.cancerhaircare.co.uk/hair-loss-help-at-home-coronavirus-support/
Good morning everyone from sunny South Shields
I now have my starting date for chemo: next Wednesday, 13th May. I'll have a pre-meeting by phone with the nurses on Monday.
So here's my question - I have chosen not to do the cold cap in order to minimise my time on the ward, so I do expect to lose my hair. I have a lot of hair! It's in a bob, not too long but very thick. I had a plan in place with my hairdresser who was going to cut it into a nice short style before I started treatment and then shave it off for me when necessary. Well, that's all out of the window now. I live alone so I'm going to have to manage this for myself somehow. Can anyone link me to any good information about how to do this? If I'm going to be ordering clippers then I need to do so asap I guess. Is anyone else dealing with this alone?
Hi, I thought I'd pop in to this thread as well as the April one since I started chemo on 28th April.
I'm Steph, diagnosed TNBC in Feb, I've had a lumpectomy with clear margins and SNB with no node involvement. But being triple negative chemo is a given. I'm having trouble with mood at the moment - feeling very low, just sitting at home waiting for my hair to fall out. I'm still terrified about what lies in store on the chemo journey but I think lockdown/shielding is going to be my biggest challenge.
Nice to 'meet' you all (hi Fiona from April!), sure we can keep each other going somehow.
I'm due to have my first chemo today at 1pm. I had a mastectomy in February and had waited 10 weeks before getting my pathology results. The surgery had took it all away and I had 15 lymphnodes removed as cancer was in 2 of them. I was so resistant and adamant that I wouldn't have this dreadful stuff pumped around my body but in the end the fear of it coming back was too much. I hate being centre of attention, I haven't told everyone I had cancer as I don't want to be treated differently and I am quite shy so the thought of losing my hair has been really hard to deal with. I've ordered head coverings and also a wig to prepare myself as the cold cap isn't offered in my hospital. The only good thing about lock down is I don't have to face many people.
I'm hoping to still be able to do some work for my company from home to help me focus and I'm doing everything to keep as well as possible. It's great to express my feelings on here as I find it hard to talk to family and friends.
Good luck everyone. I see today as one down 5 to go ❤
So I’ve had 2 chemo sessions now, when I go in I take a plastic wallet with all my notes and stuff in. I’ve been given the Macmillan treatment book so my nurse and I have been filling it in and I take that with me.
i take my bobble hat to wear home as I’m doing scalp cooling and after that you’re rocking a fetching wet look hairstyle from the water and conditioner they put on it to protect it. My hair is also cold and wet from scalp cooling so bobble hat helps to keep my head warm on the way home.
I take a bottle of water and snacks. I get lunch on the ward but it’s never enough to sustain me! I also take my iPad with a bunch of stuff downloaded on Netflix to watch during infusions. I’ve taken my book but not got round to reading it yet 🙄 I take a charger for phone / iPad just in case. Lip balm and hand moisturiser. Oh and my fluffy socks to keep my toes warm!
Ask your teams for difflam in your goody bags of meds (2 bottles usually lasted a 3 week chemo cycle) slosh and brush after every meal, oral hygiene very important especially as you probably can’t get in to see dentists now before starting chemo, you always used to get straight in and teeth checked before starting chemo, speak to your teams if you haven’t already on this and take their guidance ❤️💕💕✨✨Shi xx
Welcome to the thread .
Firstly I’m due to start my treatment in the next two weeks but they could just phone and say come in tomorrow. It’s good to be prepared.
They will talk to you and go through all the medication you will be taking home .
They will be monitoring you closely but most go home after 3 hours or so. I don’t think you need to take much . ( I’m sure the ladies who have started treatment will be able to give pointers)
I was told to rinse your mouth out with cooled boiled water with a splash of salt.
There are mouth washes out there which are recommended . Your breast nurse should be able to advise. I bought a pack of soft toothbrushes as your gums get sore.
Bought chemo hats for when the hair falls out . I also bought ginger cake, ginger beer, ginger tea and lots of root ginger incase I feel sick . I bought peppermint tea for tummy .
I like being prepared 😊🤣
Lots of Love
I am surprisingly starting chemo earlier than I had first thought. I thought my appointment on Tuesday was only for consent but I’m being admitted to the dayward after it.
Anyway, my question really is what do I need to do to prepare for this? I received a txt from a friend suggesting oil pulling for oral hygiene. Had anyone heard of this? Does mouthwash not just do the same thing? Also what do I take with me?? I don’t want to be the eejit that turns up with a suitcase 🤣Any tips would be helpful.
Also, I don’t often comment but I do love the support that this forum is giving myself and others xx
I’m Tricia 😊. I just reply to the last message .
You are at the same stage as me. I’m just waiting for the letter to say chemo will be starting .
The breast nurse keeps checking on me by phone . I think she may think I’ll do a runner . It had crossed my mind.
Welcome to the group . ❤️❤️❤️
Hi all. It's good to meet you and to have some company on this 'train journey that none of us wanted to board', (thanks for that, Fiona!). I'm Trish, and I was dragged onto the train with a diagnosis of invasive lobular breast cancer on 18th February. I had a lumpectomy on 25th March: Grade 2, lymph node positive, ER+ HER2-ve. I had a phone consultation with my oncologist on Wednesday last week, and she said I'd start chemo in about two weeks - just waiting for a letter that will give me the exact date. I'm very apprehensive, especially given the covid situation, and am just working on taking things step by step, day by day. It's been good to hear on here from others who have started or been through their treatment, and I totally get the comments about fear of the unknown. A friend of mine who was treated for cancer a few years ago said to me that the apprehension and waiting was often much worse than the interventions themselves. I think that has been the case for me so far.
I'm looking forward to getting to know you all and finding some mutual support in all this.
By the way, I couldn't find a way of starting a new thread on here - just clicked reply to the previous message in order to post this. Was this the right thing to do? Tx
Just to say Thank you for posting an update . I was really struggling in thinking this is never ending and to read your message really helped .
I just wondered how do you private message. I clicked on your name but couldnt find a link.
Thanks Daisy xxx
@rubyrose Hey - you're not being nosy at all. Umm, I had nausea on Wednesday and Thursday, but no vomiting. Everything else ok so far. Been so so sooooo sleepy today! Barely gotten out of bed.
The nurse was sitting with me pretty much whole time as the EC is given via bolus, so not much time to do anything really!
Hope your weekend is also going well xxx
My name is Clare and I'm gatecrashing this thread! I promise not to monopolise this invaluable forum so just popping in.
I am 6 months post chemo following a mastectomy last May, almost 1 year with my new boob!!! I guess I'm on the other side, when I was starting out on this journey I couldn't imagine reaching the other side it felt light years away. I hear you and I feel all of your anxieties, fears and concerns. It's bloody tough!
Unfortunately the cold cap was not successful for me but my goodness it was amazing for some of the people on my ward so please don't be put off if this is your choice.
Anyway why am I here as I rarely post on the forum (it continues to be my go to for all questions as theres always answers here). I know firsthand that preparing for chemo is costly both emotionally, physically and financially... it's all consuming. I have lots of chemo hats, scarves and cotton beanies that I'd like to gift to anyone who may need a little help. Please private message me and I'll pop them in the post.
Stay safe everyone, you are amazing, beautiful, courageous and you are in my thoughts. You probably won't feel any of these on somedays but trust me you are! We are now in a girl gang that we never asked to join but we are connected even though we'll probably never meet, speak, text or message... we are intrinsically linked through our journeys.
Sorry I missed some posts including yours.
Pretty much what my nurse said. Temperature temperature temperature. Phone day or night . I will take your advice.
Thank you ❤️
Fiona thank you . We have a Maggie’s and I really want to touch base with them as I feel my husband also needs support . Oncology say they will answer all his questions if he rings but it’s more emotional support he needs. I was encouraged to go through Macmillan for financial advice but I will try Maggie’s.
I wouldn’t mind a blue badge . 😊. Not that we will be allowed out of house arrest to use it 😂
How are you today? Any vomiting ? Bowels ok?
I’m going to have to give it some thought for my song to add to the playlist . Great idea though .
What did you do while you were having chemo? Read a book? Sorry I’m being too nosy. 😊
Have a lovely weekend .
Hi Tricia - just a thought, but try getting in touch with your local Maggie's? They're shut down physically, but I think most of them are running limited services via remote? The welfare guy at my Maggie's is helping me sort benefits and claim PIP and even a blue badge (horrified at prospect) should it come to that! They do have a main helpline number too....if I can find it will pop it on here later.
Laura, what a sweet post! Yes, it's difficult to juggle what we're coping with and there are shades and nuances in everyone's stories.
I'm reading the "Book of Joy" by Dalai Lama and Bishop Tutu.....in some ways not the easiest read just now, but in other ways it absolutely is! I love how HHDL frames suffering not as a comparison but as a unifying force. Anyhoo, maybe a bit heavy! I think what we are providing here is fab (IMHO) a space to go "bleeeeeurgh, grrrrraghgle, fraggle-frock!" And have that be ok. And to step away for self care (as you did yesterday) and coming back when we can. And I think it's a great thing to ask too!
Maybe we could come up with the May Chemo playlist to beat all playlists? I nominate Anastacia - Army of Me!!!
Tricia ❤️ Follow your teams guidance, always ring your rapid response, keep check on temp, if your wee burns but no temp, rapid response it’ll probably be a uti and will need antibiotics, if you get thrush mouth again rapid response it’ll need antibiotics, get fluconzole don’t let them fob you off with drops, if your antisickness meds don’t work ring them don’t try and battle through, they will weak them. Keep at least 2l of fluids flowing through during chemo ❤️ Step by step you will all get through together 👭in your own way and in your own time, there are no right or wrongs, do it your way and how you want ❤️💕💕✨✨Shi xx
how are you all today? Apologies I was quiet yesterday, I took some time out whilst having my treatment. It was a longer day than I was expecting as it was cycle 2 for me, but I got to meet my oncologist face to face which was great. I love her! She’s brilliant. But yeah we didn’t get home til 8pm last night and we were both completely worn out. Quick dinner and crash out last night!
How’s everyone doing? I was thinking yesterday whilst I was in the hospital, it breaks my heart that so many of you terrified of the road ahead and the journey were all departing on together. I know that this a really difficult and unsettling time, with even more stress and worry because of other events happening in the world, trust me I feel it too, but is there anything we can do on here to help those of you who are struggling a little more? What can we do to lift spirits?
Hoping everyone is having a lovely evening and has a restful weekend.
Laura x 😘🌹
I have them on my to do list. I’ve never claimed anything in my life before. I guess I’m subconsciously putting it off.
I’ve been making cotton masks with room for filters for friends and family while in isolation and asking them to donate to Macmillan. I started up a JustGiving page. Not exactly in Captain Tom’s league but it helps me feel useful.
I found my employer didn’t pay me my isolation pay. I had to isolate for a week before my operation. I sent the form to them. I don’t have the fight in me to chase them up but I know I have to. I could just do without it .
On a positive note I had a follow up call from my oncology nurse making sure I understood everything the oncologist explained to me the day before.
I now await an appointment to start my first course of Chemo.
Tricia if you can speak to Mcmillan, there have been others who have got financial assistance their Mcmillan teams have helped. You could ring the number at the top here too and ask what forms and how to do it ❤️💕💕✨✨Shi xx
Angie1973 - May Chemo thread here if you are starting in next couple of weeks ❤️ Lovely gang on here will 👭you 💕💕✨✨Shi xx
I have been told to shield myself and not leave the house. My husband has also been told to shield with me. We can walk the dog in the field opposite as long as we wash our hands and not meet anyone on the way . I have arranged delivery of food. Also have a network of friends to leave stuff on the doorstep.
I’m putting a laminated poster on the door explaining the situation so no one knocks and expects me to answer until they are a good distance away .
My concern is , when they lift the lockdown . I guess we will deal with that when it comes .
I am a carer in the community and was told by my oncologist that even without covid, I would not be allowed to work until after treatment had finished.
Not sure what we are going to do financially.
Lots of Love
Hi everyone one on here , hope your all ok . Just wanted to ask what advice you’ve all been given whilst having chemo as regards self isolation and shielding along with other members of your family at home please xx
I'm a little better this morning (touch wood!) And my wee dog (bless her!!!!) Is curled up beside me and won't leave - Scottish Govt haven't issued guidelines on social distancing from dogs 🤣🤣🤣🤣
While I don't disagree with your husband - they're your scars, and maybe feeling all the feelings around that (loss, anger, disgust, denial, whatever, whatever) will enable us to fully embrace them as part of us and our journey? This is a conversation I'm repeatedly having to have with my partner. I love her to bits and she's doing my freaking nut in!!!! I'm like, love, this is my journey. You're on the partner's journey and while we're heading in the same direction, you're driving in a different lane!! You cannot control or determine what will/will not help me. That's how she copes.....fixing stuff and being in charge.....AND she's not looking after herself! However......
Tricia, trust yourself. You do you in whatever way feels best. I got my head shaved (grade 1) at the weekend. It was a shock, but I've adapted now and I'm glad I didn't have to process that shock in the midst of chemo while tired/headachey/sick etc. And it's potentially a tiny bit of control. Not looking forward to eyelashes and eyebrows going! Quite looking forward to leg and arm hair going. Very apprehensive about public hair going....I think that may be quite difficult for me, but maybe not. Reality tends to be very different from anticipation so I dunno!
I've mapped out my treatment incl the days of lower immunity. It's all colour coded and everything! Nerd, you say? Me, you say? NAAAAAAH 🤣🤣🤣🤣🤣🤣🤣🤣
Lots of love guys
Hi Daffodil (what a cheerful user name - I like it!)
I think it's great to have a place where you can just let it go and say the things that are maybe too painful/scary to say out loud to loved ones.
I hear your fear and uncertainty. Eventually, I think I went into a kind of survivalist dissociation for the few days before.....not consciously of course but I think my brain went "ok Fiona, enough already!"
I think it's a good suggestion to see if you can wait till the day....and don't forget, you can try it and change your mind?
I'm struggling to decide on whether to go pre/post menopausal treatment (well, rationally I do know, but my heart is going no.....I don't want to close the door on my fertile years even though periods are a total pain in the.....well, everywhere!)
Don't feel rushed, if something doesn't feel right, find out how long you can wait before making a decision (I've got 6 weeks to weigh up the hormone thing!) ask questions, even if you've asked them a billion times before! Take notes, or ask the nurse/whoever to make notes for you.
There's no right or wrong - it's just getting through this in whatever way you can and that looks different for all of us.
Lots of love Fiona x
Waffle on! I think there's a tendency for most to feel like we're doing that, but I view it as being better out than in, and also you never know what is going to be helpful for someone.
I'm really sorry that you feel misled and let down by the team looking after you ☹ The changing news will have been hugely unsettling at a very difficult time.
My team were really good in that they said from the outset, this is what we're hoping for (hormone receptive) but we won't know until lab results, and they gave me dates for those, when they would call etc. I do wish everyone could have that experience as it has made a huge difference to a very difficult journey.
It is good that they removed it all. My oncologist used that term too "as far as we know" and she explained that it's one of those times when there are no absolutes and hence the chemo etc.
Do you know if they removed all the lymph nodes in your operation? I don't know a lot about that tbh, so if you haven't already found out about Breast Cancer Now's Soneone Like Me volunteer service I HIGHLY recommend it. You get matched up with a volunteer who has had similar diagnosis/treatment but who also matches you in terms of interests or personality (as near as they can). My volunteer is fricking awesome and her phone calls (we usually schedule them for Fridays) have been such a lifeline. You can call the helpline for more information or it may be better to email email@example.com
Its lovely to have you on here...this is feeling like a lovely wee group!
Welcome all who have joined the thread in the last few days. ❤️
Fiona I hope you are feeling ok today . Don’t forget to drink lots of fluids. I’ve ordered everything ginger and masses of different water. Our tap water tastes yuk . Oh and my daughter who is a midwife/ genetic counsellor ( she shadows the breast nurses a lot) recommended ice pops / lollies for sore or dry mouth.
Stocked the freezer up.
Ali I know what you mean about feeling liberated but probably sad at the same time . My husband says I should wear my scars with pride. I’m not sure if he expects me to get my blue boob out at any opportunity or he means I should be bald and proud 😊. I said to the oncologist that I’m going to shave my head. Her eyes looked alarmed . “ Oh no you can wait until the third week. That’s when it falls out”. Is there ever a good time to shave? I kind of want to preempt the hair falling out.
I have my appointment in an hour ( phone) . I like the idea of mapping out the journey on a calendar. I will do that once they give me the timetable .
Hope you all have a good day today .
lots and lots of love