Hey Salsa 🌼🐝
Thanks for your message my friend 🌸 So we are not clipped yet as the clippers are delayed until today which for some reason my boys are really happy about lol!
Today is my sons 12th birthday 🥳 a super strange event this year as you can imagine. I needed a rest day yesterday so I had enough energy on the night to wrap his presents and make a birthday banner for him lol! I had started gathering his presents before this all started so at least he had something. To be fair, it was really lovely to sit and make everything.
I have got him a cake ready luckily on the last of the two remaining shopping slots I have before we have to start venturing out in to the wide world whilst waiting for a government issued slot.
How are you my friends? no sunny start yet but birds are singing and another day closer to our goals! 🦋🌈
Stay strong beauties 🌸🌼🌈🌻
sorry about the cold cap. I’ve not heard of this. But these are crazy times. Sounds tough not getting the choice tho.
I do hope everything goes to plan for you this week and you don’t feel too hideous after your next session.
Take care 😘😘😘🤗🤗🤗
so sorry it’s been so awful. It sounds tough. The isolation does not help does it?
enjoy your garden reunions. Great idea which I also have planned with my son this week. It’s all so crazy and so ovewhelming
take care, take one day at a time and sending positive vibes
Nothing has been delayed for me so I hope not for you either. You can self register on a government website there is a link here
Sorry you’ve been feeling so sick 🤢 Glad it’s getting better. Hope it stays that way
It is an emotional roller coaster. I’ve struggled some days. Am doing a lot more Skype calls and FaceTime calls with friends. I really miss catching up with friends. It’s so hard. My son is away too. He’s temporarily moved in with his girlfriends family for a bit. We are planning a garden visit so I’m looking forward to that.
You take care. It is all so much to take in and so stressful at the moment.
Take care 🤗🤗🤗😘😘😘
Sorry you’ve been feeling so bad. I am on weekly paclitaxol. I don’t think the side effects have been nearly as bad as some who have posted here. However, chemo fog and fatigue have been getting to me. I spoke to someone else who did both and she said these were the worse things about pac. Also she stopped after 10 weeks as the neuropathy got too bad. I’ve been warned that if it gets to the point when I can’t do buttons up that is when they stop. I do hope it all works out for you.
So sorry about the hair. It’s all so tough. Feeling for you.
Sending hugs and positive vibes for the future and throughout this crazy time. Take care
Thanks so much for all your fantastic messages. So impressed with your yoga 🧘♂️. I must give that a go tomorrow.
I’m glad you’ve been eating a bit better so I hope chemo went okay today. And that you are not completely wiped again sending lots of love and positive vibes. 🤗🤗🤗😘😘😘
Next chemo only due next Monday 😉 - been feeling pretty well with zero sickness and tiredness, so am aiming to enjoy while it lasts!! I spoke to my breast cancer nurse today and she said that oncologist is doing telephone consultations and chemo is happening as planned (unless you have heard otherwise, which I haven’t) so watch the space!
Sending love to you all in these challenging times!!! 😘😘😘😘😘😘
Are the boys all clipped? Are you? How do you feel about it all. It’s so hard as is it but the added stress and emotional toll over losing hair is tough. Send8ng hugs 🤗🤗🤗
Thanks for all your positive vibes. 😘😘😘
Tried to post this morning but somehow managed to delete it before it went. Doh
So sorry so many of you are feeling rubbish. It’s the pits.
I’ve been feeling better. As in less fatigue towards the end of the week. However, my blood count is still too low for me expected session today. They said normally they would have continued but they are being extra cautious at the moment. A bit frustrating but I quickly got over it. Got home and had a lie down so obviously still feeling a little tired.
But now the sun is shining and my son plans a garden visit in a few days time which will be lovely.
Still scared of COVID 19. It’s all v anxiety provoking isn’t it. But we are staying tight indoors. The only time we’re out is for the hospital visit.
You are all doing so amazingly well in these extremely challenging time. Be kind to yourselves and take each day as it comes. Love to all and loads of positive vibes and hope things are looking up for all of you soon. 🌈🌈🌈🌈 🌻🌻🌻🌻 ❤️❤️❤️❤️ 😘😘😘😘😘
Welcome mini mad
loving the words about hair coming back after 7 Months 👍😍
my locks are going to be shaved off tonight or tomorrow night when my little boy in bed.cant handle finding hairs everywhere. Hugs 💐
Hi ladies re head wear after we have decided to let our locks ' go !! not an easy decision 😔😔 So i got all my beanies n scarves etc off ebay. Just entered chemo head wear and up they popped.. didnt cost a fortune and were good enough for me 👍
different styles, materials and colours.
im 7 months post chemo now and hair has returned thicker than before. See if i can load some photos.... BIG hug to all you lovely ladies out there fighting this CANCER battle.
stay safe and stay well xxxx mini mad xx 💖💖
Benj - just seen your post. At Chemo Headwear i think headwear start at £40 upwards and go upwards depending on style and fabric
So lovely to read your messages and despite the hideous things we are dealing with to just know how we are all in this together. I am really a Feb chemo starter but joined the Jan one in chemo fog brain and have now looked here and wanting to share here too!
Chuck - mouth ulcers - I had them the first time but oddly not the 2nd but I found a gel called Iglu really helped as it seals them.
Ju72 - I got very anxious last week about what was happening with my treatment so called my chemo ward who arranged for the consultant to call me before my planned appt the day before my next treatment. For a couple of days last week I felt like the breast cancer had been eclipsed by covid-19 which was so upsetting but then I somehow became pro-active with reaching out and also called my breast care nurse and came on here, to thankfully find the reassurance I needed. My telephone appt is tomorrow so am rather apprehensive whatever the outcome.
I have also been self isolating Hannah as I live alone, and even though the support from family and friends has been incredible, it's just not the same as being with people. Last week was literally the toughest of my life as i was dealing with the chemo side effects of raw skin down below, rash from antibiotics, lost voice etc etc. I was crying constantly and had to write a daily list to remind myself of the things I needed to do to look after myself. The last 2 days I have turned a corner and what has helped massively is knowing that my 25 year old son will come to stay with me in a couple of weeks after he and his dad will self isolate together first. I wonder how long before I annoy him! Also my partner has built a seating area in the front of the garden for visitors so they can keep the required distance! I'm lucky to have a front garden to make it possible to clap eyes on friends.
Finally, just to say about hair loss - I decided I couldn't handle the cold cap so once my hair started coming out, my head was shaved as I found the strands of hair all over the place quite distressing. Luckily I got some headwear specifically for people with hair loss, the week before. Claire, of Chemo Headwear, Lodsworth, West Sussex was fabulous when I visited her and has a vast array of styles and fabrics. I'm sure you would be able to speak with her and look at styles online. I am pleased with mine and they keep the back of my head warm, which seems to be constantly chilly.
Anyway I seem to have rabitted on a bit but sending warmth and love to you all.
thankyou for my advice everyone I have just phoned our advice line re my rash , which has now gone thankfully. I have a telephone consultation with consultant on 8th they said i must mention it then.
Also yesterday afternoon the pain in my hips and legs got really painful, paracetamol didnt touch it. I asked if i was ok taking ibuprofen as it had been in the news , they said it would be fine for joint pain , as long as not for symptoms of cov19.I did take codeine i was given after my surgery which did help. this has also gone now thankfully so lets hope things settle until cycle 2. and the heat pack certainly helped
Hope every one with children manages through the Easter hols. lets hope it warms up abit
Ju72 hope you get an appointment through. i think the hospitals policies are changing daily,.Fingers crossed things continue for now
on a lighter note i did google Beanies yesterday, clicked on designer to see how they differed.... clearly by cost only. Selfridges have loads over £350-for a hat!
Take care x
Had my first chemo on the 13th , had a few side effects but I've managed them ok. Had the filgastim injections too , must admit wasnt looking forward to having to inject myself but I put my big girl pants on and managed it ok. Had more side effects with these than with the chemo. The weirdest one was a warm feeling around the chest area however this didnt last long and happened on day 1 and 2.
Currently on day 17 and so far no hair loss. Although I'm sure it's coming.
Pretty anxious over the virus looming over us and what this means for future treatments. I've heard some have been cancelled, and those thay arent the cold cap option as been removed, is this right ? Or does it vary depending on area. Also heard no plus one whilst having chemo. All speculation for me at the minute . I'm hoping I hear from my team early this week, seems I've got bloods on weds and supposed onco app on Thursday. Not had any correspondence to say it will be a phone consultation yet. But I really dont want to attend a general hospital at this time.
Oh and I've never been so hungry , I'm going to be the size pf a house by the time I've finished treatment.
Hope you're all well and keeping safe . X
Hi all, I started chemo 17 March, 6 cycle FEC-T, so like many of you wondering if it will be continued or cancelled (and where I should turn to for a blood test, as my GP's surgery may not be the best idea!). Am somewhat concerned I haven't had a letter re the dread corona yet, as it may be the only way of ever getting access to an online shopping slot!
I had filgrastim for 5 days after the FEC, wasn't sure I could manage injecting myself but advantage of big boobs was I couldn't really see the the needle! Did bruise myself a couple of times.
Today's the first day I haven't felt constantly nauseous, which has been a relief. One thing I hadn't planned for was having ginger biscuits and mint tea make up such a large part of my diet.
Stay well all x
Benji1812 please just ring your rapid response number in the morning and tell them about itching and rash 👍 always best to ring and get everything checked out while on chemo, it’s not like usual so always ring and check, your unit will be pleased you are being vigilant. If your wee burns but no temp, it’ll need antibiotics not just a bit of cranberry juice, if you get thrush mouth or down below again it’ll need antibiotics and get fluconzole tablets don’t get fobbed off with drops ❤️ Cry, dance, laugh, do what ever you want to ❤️ You are still you and still fabulous don’t forget that ❤️💕💕✨✨Shi xx
sorry to hear you been rough
i feel like I have had a rough few weeks.
i know what you mean about home schooling I’m floored!
i also have the chemo fog so you aren’t alone there
sending hugs ♥️
and welcome to our lovely group.
just to say filgrastim is on one hand amazing and the other painful.I had a few bad days with them.Epsom salt baths,hot water bottles and paracetamol is what got me through.Hope it settles for you soon.
no two days the same and I have regular wobbles and crying.
all here for each other
chuck and Shi HI
thankyou for the welcome.
i think while we are isolating this will be more helpful than ever.
it made me fill up just getting a reply. i have found this week iv just cried randomly, particularly if someone is kind, even just an encouraging text, or for nothing. My hubby keeps says Whats up? and i just say dont know. hey ho
and itching at night -so far iv just used cream or a cold flannel, wasnt sure if piriton was allowed?iv got a mild rash to my thighs and forearms, but only seam to notice it at night
every day is a learning curve.
Benj1812 ❤️ You can get wigs from amazon 👍 I found the steroids sent me into wig buying frenzy back in 2017, coloured bobs, tinsel wigs the lot 👍 hang on tight ❤️The March 2020 gang are amazing and you will all get through together 💪💪💪 use the number at the top of you want to speak to anyone, there is the someone like me and ask the nurse and lots of 👭everywhere on here. 💕💕✨✨Shi xx
Hi from the February 19 ladies xx
I noticed the question on filgrastim. I was only due to have it for docetaxel, I didn’t have it for my first two FEC as I was told the docetaxel was much harsher and so the immune system needed a boost on those cycles. But then I had an infection on second FEC and because my neutrophils and white blood count had gone down I was given them for the last FEC too. I had 10 each time so 40 in total! Hopefully you guys won’t need so many, I seemed to have more than almost anyone else I spoke to online! I think it’s just different at each hospital. Some people are lucky and have one super duper one only but it’s really expensive!
Hope you are all ok it’s such a worrying time at the moment, but you’ll all do great xx
When I started my treatment last Wednesday it was so hard for my husband to just drop me off, I felt so awful for him as we had made the pact to get through this together and now I’m on my own. However when I was there and having my treatment, I was able to properly talk to the sister that administered each syringe of liquid. We shared stories and I learnt so much. He is now my getaway driver lol as soon as I’m done, we’re off 🏎!! The funny thing was after he dropped me off, I totally lost my bearings and ended up in totally the wrong place lol!
I’m on injection number 4 💉today so I will await the joy of pain tomorrow 🤣 I do remember my nurse warning me to not take ibruprophen more so due to the effect on your stomach but check with your nurses. Hot water bottles all the way mate ❤️🧡
My hair is just thinning at the minute and breaking off, I’ve got a wig but just going to stick with a beanie or scarf.
Wow, another NHS angel on here 💙 you amazing person, totally get the missing of colleagues, mine are like my family. We have FaceTimed more than ever on good days, I just text on bad ones, but the coffee will brew again hun ☕️ Stay strong mate 🌈
I’m feeling your worries mate, as if we’ve all been landed with one of the biggest battles to contend with, they pile the end of the world on top 🤯 Blooming good job we’re strong enough to deal with it!
Don’t push yourself too hard with the homeschooling of your 6 year old my lovely, the best thing ever sit and read a story or when you’re on a good day, bake. Play shops and have fun! Paint, draw on sunny days a bucket of water and a paintbrush to paint on the walls, just sit and watch. Cosmic kids is a great YouTube video she does yoga to stories, my class used to love them.
The brain fog, man I’m with you! Planned so much for this afternoon but ended up curling on the sofa with my eldest watching Walle! It was great lol! Feel huge amounts of pressure in my head at the minute but paracetamol seems to ease it.
I am on the injections for 8 days they said they were immune boosters against sepsis. My drugs were administered via cannula so maybe that’s a difference? Don’t like them I have to admit, I’ve got stomach ache and back ache but would you believe it’s because I’m also having a bloody monthly lol, I mean really you couldn’t write it 🤣😂
Stay strong hun, and give yourself and your body time to heal, tbh this is the perfect timing to do it.😂 Stay positive, we can do this 🌈
Iv been following this thread this week and has taken me til now to register and be in touch. MY IT skills are poor.
My name is Helen and also started my chemo (EC) last Friday 20th. it is all still surreal going through this and the challenge of Covid19
it is reasurring that I can relate to every one on here.
I had a lumpectomy 4 lymph nodes removed 4th feb,18th march was told I needed chemo, PICC line fitted 19th ,1st chemo 20th. I was told they wont use a cold cap due to covid19,and then i had to be treated on my own as no visitors allowed . Its scary going through it isnt it and then having to do it alone! I understood why , but still struggled with it.
I have done 5 injections of Filgrastim, last one yesterday. ,well my fabulous daughter has(16 yrs, and my rock). my friend warned me she had bad pain with it , and up until today iv coped well , but walking is painful today. have managed on paracetamol and dyhydrocodiene so far but will ring the hosptital if it doesnt improve. Does it get better after afew days???? Id avoided ibuprofen with it being highlighted in the news
On Friday my husband flushed my PICC line which was another challenge, they said it was the safest way to do it. lets hope that gets easier over the next weeks.
So all wig shops are shut, id ordered one quickly Friday before my chemo but now its closed. I know every one is in the same boat but Im on day 9 just waiting for my hair to fall out. my nurse said from day 10 it can happen , what have people found? i have ordered a couple of beanies
My son is at Uni too, like afew, he'd rather isolate with 6 mates than with us but when i have a weepy moment I really miss him here.
I hope i get to know you all over the next weeks/months.
i miss my running and coffee with friends. I also work for the NHS at a hospital and miss my lovely colleagues. I can only hope having a warped sense of humour will get us through this. Iv never had a day off work in 25 years, certainly banking it all now.
Hope youve alll had a lovely weekend. thanks in advance
Just saying hello all. And to Hannah and Chuck!
It has been a strange few days. Just reading through all your threads! Wow you have been busy! Looks like we are all very much in it together at the moment! I still feel extremely overwhelmed by all of this, the chemo, the Covid, the homeschooling of a 6 year old. I am sure I will find a new normal but at the moment I want to just hide!
I had my second chemo on Tuesday - I am having EC (epirubicin and cyclophosphamide). The third of this treatment will be in three weeks and then I will go on to weekly Paclitaxel (taxol) for nine weeks. Still have to go on a Tuesday for PICC flush etc. Quite strange going to a nearly empty hospital - at least I can get a parking space! Is anyone wearing a mask to hospital?
The chemo hit me hard on Tuesday. I was fine with just a headache then felt very nauseous on Tuesday evening, then ok'ish on Wednesday. Thursday and Friday was a complete write off and I was in bed for both days - no food, just liquids. On Saturday I felt a bit better and managed to eat (beige food). But I have a massive chemo fog which is stressing me out. I wonder if it gets worse as the treatment goes on?? I can't concentrate on anything and it is so hard when my son (rightly so) is demanding attention! Hopefully tomorrow will be better and I can try and get organised with a bit of home schooling.
Is anyone else on Paclitaxel - I wonder if this has less impact as it is not as intense - smaller infusions every week instead of a massive hit of poison every three??
My hair is coming out massively now. Hair bloody everywhere. I decided not to continue with the cold cap as I don't see the benefit - also if I am at home for 12 weeks, who cares! I have bought a couple of beanies. I will shave it off eventually but need to be in the right frame of mind.
Also. I asked about the injection Filgrastim as a few of you ladies seem to be having it. I am not? I wonder why? Have you been told that your white blood cell count is down? I wonder if is a NHS Trust thing and it is just pot luck.
Sorry I haven't replied to all your comments, but like I say we are all in it together and seem to be going through the same sort of cycles/symptoms etc which is reassuring! I hope you are all as well as can be in the **bleep**e situation!!
Hi Hannah and chuck and everyone
I managed my yoga 🧘♀️ whoop.It will be a while before I can perfect it I suspect but practice and all that!
so good to hear we are able to do something nice on our good days.
i have cooked for us today too,now I’m shattered ha!
This week I’m hoping to go in for bloods and chemo so trying to eat what I can to build myself up 🤞
have a good rest of the day lovelies 💐💓
Good Afternoon lovely ladies 🌺🌿🐝
So today I got up, showered, put some make up on and did breakfast for everyone, FaceTimed friends and family whilst I felt decent and now that’s me done lol! Plug pulled no energy so back on the sofa with my book 🛋 lol!
Loving the jigsaw 🧩idea, can’t remember the last time I did one. I’m teaching myself to knit too, aiming to knit squares to form a blanket, by the time all this is over I’ll be like bloody rapunzel but instead of hair it will be a blanket falling down the front of my house! Wool and the gang do some amazing, easy to follow videos on YouTube.
Sending hugs and love ladies 🌼🌸🌺
glad you are feeling up to a bit more today Jowels! You are right, no two days are ever the same. How did you find your yoga?
i am spending a chilled out day today doing a jigsaw and trying to relax.
I hope you manage a good amazing of food today as well!
hoping everyone else is ok today.
sending lots of love
hope you are all doing ok?💐
I am hoping to enjoy my yoga again today as not felt up to it the last couple of days.No two days are ever the same are they.
hoping to manage some decent foods today 🤞
hope we all managing what we can ♥️
lots of hugs 💝💐
Chuck, that was such a lovely message 😊 - thank you!!!
I haven’t had mouth ulcers (yet) but was told to gurgle warm water with salt - they did say they could give me something if the ulcers developed - so perhaps worth a call to your nurse? 😘
Chuck thank you for your lovely positive message.Think lansaprozole the key defo working for me.
ive managed to eat again today thank goodness and am trying to build upy nutrients before next weeks bloods and hopefully chemo.
for mouth I use biotane mouthwash ;expensive but worth it)and brush teeth quite a bit during the day.
im also having quite a few ice lollies to numb the mouth.Not nice I know but if hurts less as time goes on,well until next cycle!
hope everyone is ok and doing what they can to get through the horrors this is throwing at us.
i sat outside in pjs,dressing gown,hat and sun glasses was lovely despite me looking deranged ha ha !
lots of hugs 💝💓💐❤️X
just a quick one, anyone got any magic solutions to mouth ulcers? They are starting to appear and annoy me already lol! X
So good to hear good days are happening for you and the garden has been the saving grace at the minute for many people 🌺🌸🌼. Good luck for your bloods and next round.
Teammorris, don’t think anything prepares us for losing our hair and the timing of yours 😢 Just look forward to next years. Our hair clippers are arriving soon so I’m practising with whichever of my boys hasn’t finished their homework first lol! Then my husbands hair and then they are shaving mine off! I may selfie our haircuts lol! Stay strong hun 🌻🌈
Hey Jowels, hope you’re ok🌺 I phoned oncology yesterday and they said lanzaprozole too. I have made do with rennies so far as I can’t wait in the queue online of 202,945 people at boots lol, seriously! 🤣
Stay strong ladies, one day at a time and even though times are crazy just try to think of it in a different way, the world has gone on hold so we amazing people can heal with the love and support from all around us. The sun shines to give us hope and the birds sing over the sound of us throwing up, peeling, crying, aching but getting there! Here’s to the good days 🌸🌈🐝❤️ Love you all and sending hugs 🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰
so pleased you feeling better.Yes home schooling hard going for sure.Lush at the same time.
good luck for bloods and next chemo xx
and welcome Hannah and Sheryl
since my last post I’ve been feeling much better, had friends calling and making me a feel a bit more cheerful. I’ve also decided to not watch the news or go on Facebook anymore- to live in oblivion to this nightmare will protect my mental health! I have been busy keeping my 7 year old boy busy with homeschooling (even though I’m not putting him (or me!) under pressure, while trying to cook healthy meals for the family. Fatigue hit me badly Wednesday and Thursday when standing up was enough to make me feel I had just done high impact exercise (very odd feeling) in combination with back and leg pain because of the injections- but today was a much better day, hurray ! 🥳 and even enjoyed a bit of sun in the garden 😊
I Hope I’m fully recovered by next Friday so that I can come in for bloods and then second chemo treatment on Monday 🤞
sending positive vibes to you all 😘
Thanks Shi ❤️ hope you ok
in my area we only have access to Oncolgy nurses Monday -Friday and on call reg over the weekend.We rang one time and he said he knew very little about cancer and chemo!
my nurses Monday -Friday are amazing so that’s postive.
❤️Remember to check things with your rapid response numbers ❤️I know trusts have a lot on but they are there for you too and keep safe ❤️💕💕✨✨Shi xx
sorry to hear about the pains,hideous for sure.I spent a lot of time in Epsom baths last week as it’s the only relief I got.
hope it disappears soon
so sorry about the hair and the timing of it too.Its the pits.
im with you emotionally wise lots of crying and generally fed up.
Hopefully tomo a better day for us all 💕
so sorry to hear this about your husband.I hope they can him in soon and everything crossed for him 💕
the fatigue is a total bitch isn’t it.
i feel shocking today due to heartburn which then caused me to vomit 3 times -not ideal at all given the sodden sickness I had at the beginning of the cycle.My lovely dad takes lansaprozole and I know that is what I’ll get so I’m starting that tonight.Gaviscon not touching it.An advantage of being a nurse I guess.
feel emotionally I’ve hit a wall-so tired of it all,new symptoms all the time and my bloomin head is killing. Like it’s not bad enough you lose your hair you are sore.
So sorry about the moaning lovelies.
Im doing the same re news I can’t face it anymore.Just praying we still get our chemos.
sending you all hugs ❤️