hope you can all enjoy a little sunshine today x
Jowels,hope your pains settle. I had a day where they were really bad last time , so will be ready with the heat pack next round. Paracetamol didn’t touch it, I’ll see what the consultant suggests when he calls Wednesday.
i have ordered a night cap in preparation for next week, thanks for the advice.
Hope the pain passes for you soon x
witchhazel sorry you have the hair loss , hope you are managing ok x
has anyone gone out yet with hats etc on yet other than the hospital? I’m hoping I dare walk the dog next weekend x
ah the hair situation is grim isn’t it.
witchhazel sorry to hear yours coming out whilst you using the cap ♥️
i hadn’t realised how cold your head gets -pleased I ordered a sleep cap as it’s really cosy.I have approx a quarter of an inch in patches.I wake up with tiny hairs all over and think it will be all gone in a few days 🙈.
im day 3 now and still feel the usual rubbish.The filgrastim is effective and I’m happy to have them but the bone pains are rotten.Im going in my usual Epsom baths and hot water bottles on my back.
Still only having my toast and plenty fluids.I may progress to some beans today -push the boat out ha ha!
Hope you are all doing ok and sending hugs 💕💓
My hair started coming out a couple of days ago; I have a lot of it so it's not immediately noticeable, but I could certainly have made a couple of birds cosy nests. I don't know if that means the cold cap hasn't worked or if it would have been worse without it, but I assume it will carry on throughout treatment (or until I run out of hair)?
Hi I didn’t know about the hair donations being closed because of covid-19, thanks for sharing ❤️I just used my oh’s babyliss for men 22 piece precision clipper kit, boots and supermarkets usually have ❤️💕💕✨✨Shi xx
Hi unfortunately no hair donations are being accepted at the moment. I had looked into it as my hair was 12”” . This virus is effecting every service.
my husband is wanting hair clippers and I will use them next week when I need to. The ones we had seen at Argos are all sold out . Can people recommend any hair clippers? Thanks in advance
hope you are feeling ok today xx
Hi ju, the liver thing is common during chemo ❤️They always keep check on that. Think about donating your hair if it’s long enough to little princess trust ❤️ Put your make up on before shaving, I didn’t and looked like action man instead of rocking it like Sinead O’Connor or Demi Moore 😂🤣😂🤣😂 💕💕✨✨Shi xx
sorry to hear about treatment postponed more anxiety I know.Hope your bloods will pick up quick.
you may remember I was having FEC but yesterday for cycle 2 this was just EC.
they changed my anti sickness injection to have prior to chemotherapy drugs and am home with cyclizine and metacloprimide.I had a horrific night last night same as last time;retching from 8pm -4am and feel like I’m on a boat again.
🤮.On the plus side my hubby helped me in shower so least I feel fresh and it was a break from my bed.Just sipping fluids as much as poss.
i asked about the chemo and my nurse told me lots are being changed to other infusions such as targeted therapy.She said as i wouldn’t benefit from these I’ll be having a total of 4 cycles instead of 6.So I have two more now.Its a wierd one as it’s been so rough I am pleased I’m not having 6 but I hope it’s not going to change my long term recovery and chances of recurrence.
my hair is balding so I look like a baby bird.Im reluctant to buzz it to scalp for fear of sore scalp or being cut,it’s all over the bed now thank god for a lint roller!
hope you are doing ok with mood and symptoms.Its a hard journey but one day at a time 💓💜
sending love 💓💐
That must be frustrating getting the next course delayed, although I guess it’s a good job they are so careful. My blood test is 8 th so yes treatment on 9th is dependent on that. Such a rollercoaster. X my grandma is 95 next week, and still lives independently. I’m trying to arrange for people near by to help her celebrate. So tough not being with family, especially those not on wi-fi x
Hi Ju72, sorry to hear that your next cycle has been postponed- hang in there, best that the bloods are all good before continuing and less risk for you. I’m having my blood test done today and am on EC too (going on to second cycle) - it may happen to me too, we shall see....
Benj, I have been told that can use Moroccanoil on the scalp by the lady that sold me my wig, but haven’t heard about walnut oil. I have been using Dermol 500 lotion as soap substitute for dry and itchy skin and it has worked wonders! I intend to use it on my scalp together with oil when my hair falls out (or shaved...)
hope you all are coping well under these strange circumstances, I’m a lot better since I stopped watching the news 😌
Morning ladies ,
Had my phone consultation with oncologist yesterday and sad to say my 2nd cycle as been delayed . Due to high liver function result after my blood test. She said it was quite common on ec and recommended I stopped drinking Haha I've not had a vodka for 6 weeks !! I dont feel ill infact I feel quite well. So another week to wait, I'll need another blood test before we can proceed. I may also need a reduced dose of the e drug but not sure yet.
I've been advised to continue treatment but without the coldcap to limit risk to covid . Bit annoying as I'm now day 22 with no head hair loss . But for my safety I've decided no cap the better option. So I get that braving the shave is a massive deal , it makes my stomach churn thinking of doing it. But we will manage it because we are strong !!
I've not heard about the walnut oil working , let me know how that goes if you try it. I cant use E45 as allergic to it. Good luck my lovely sending a virtual hug .
Hope everyone is keeping well and staying safe.
morning ladies, x
Hope you are coping x
thankyou for the tip on Look Good Feel better, I hadnt heard of it so have watched the tutorials. i rarely wear makeup but have ordered an eyebrow pencil now. thanks
i am still awaiting my hair coming out , im on day 15.. my next appointment has been booked for 9th , it was 10th but our hospital has decided to keep Easter weekend clear . This is definitely my next big hurdle.
Such a brave decision to shave your hair off, i am dreading it .
my nurse advised i get some walnut oil for my scalp. has anyone used this . i am currently using E45 on my body. do people use oil rather than cream on their scalp? as a red head it will be whiter than white and will be using factor 50 x
hope the sunshine that is forcast over the weekend helps
sorry to hear about the sickness I was the exact same.I am due cycle 2 tomorrow and was told I can have injections instead of orals or I’ll have a syringe driver for 2 days.I can let you know tomorrow once I’ve been in.
in other news my consultant said I am now have EC and not FEC due to the risks of infection and being admitted with covid 19 nightmare.She also said I’m now having 4 cycles instead of 6.
im pleased I’m continuing but am obviously worried I’m now on less of a regime and less cycles but nothing I can do about that.
did my yoga again loving it ♥️
how is everyone doing lots of hugs 💓💓
Hey everyone, hope we're all staying safe.
I'm still booked in to have my second chemo session next Tuesday, and as they recommended I've been keeping a record of how I feel. My consultant told me that there's a pattern to how people feel post-treatment, so if I felt sick for x days, I would next time too. I've been almost constantly nauseous with the first week the worst, and the last couple of days much better. So is that how it will go next time? And will the level increase, so will I feel sicker? I may need to ask for a longer supply of anti-nausea pills!
Thank you Shi for your kind words it’s much appreciated.
ill keep it all in mind 💜
feel a bit more postive today so holding onto that 💓
hope you are doing well lovely xxxxxxx
Jowels ❤️ Think of it like chrysalis phase now and you will re a merge 😁😁 I found putting my face on helped, if you’ve not had chance for your look good feel better, there are some fab tutorials online that show you how to create a brow and how to fake look of lashes ❤️ Always remember, it’s just part of the journey ❤️ You are midway through the cruise, you go for a 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻With the rest of the thread when bouncing with the steroids, you go for a gin and chemo with the thread and get a fuzzy head for a few days, you go up on the sun deck with the rest of the thread on the 👍😁👍days and captain get you through gives you all a gold star each step and you’ll all be tooting the ships horn soon as you all finish chemo 👍👍 👭 when chemos and rads dine then it’s time for the extra dark Jamaican black castor oil, rub on bonce leave for 30 mins - 1 hour, then wash with the lush shampoo bar that looks like a red dot, think it was called new, but that’ll help hair growth ❤️ 👭💕💕✨✨Shi xx
chuck so lovely to hear you and your son had such a lush day for his birthday.
ive had an emotional day-my lovely hubby shaved my head as I couldn’t bear the shedding.Cancer cannot take any more from me now.Hoping the only way is up after the last 5 months.
my oncologist is doing phone review tomorrow then hoping for chemo cycle 2 Thursday.
hope you all managing xxx
Hey Salsa, Jowels and Ju,
Today was beautiful, what’s app happy birthdays with grandparents as he blew out his candles, they had even made a huge banner when he FaceTimed them lol! He loved the happy birthday banner I made and the card his dad had drawn him, loved the presents he had and devoured his cake. After all that he said ” You know what, this may be the maddest birthday ever but we’re all here so it’s the best! “ 🥳🎂🌸🌼
This afternoon I have shut out the world and painted for a while just to get my head back in gear.
Ju, my treatment is also belt and braces but I opted for intravenous, my hair is just gradually breaking off so it gets shorter each day, however the clippers have arrived lol!! 👶🏻 My next round is the 15th and I intend to go in, get done and get out back to safety as quick as possible. After treatment I walked in striped off put clothes in the washing machine and showered, felt better then. I hope whatever you decide goes well my lovely.
So for now I’m off to put my headphones on, water bottle on my back to listen to a chill out playlist before curling up tonight to watch a funny movie.
Love you all girls, come on we can do this ♥️🌈🌸🌼🌻🦋
Hi everyone, hope you are all getting by .
Chuck , arranging a birthday must be tough, hope there’s plenty of Skype ing and treats for your son. So tough for him, .
Ju72 a really tough decision about the cold cap. Sheffield have stopped them as policy but having to decide yourself when it’s worked so far is really hard. Losing your hair is the scariest bit, another hurdle . I don’t normally wear makeup but think I’ll be learning quickly x
glad treatments are still going ahead as planned.
salsa140 when can you get retested for treatment, sorry bloods were low, do you have to wait another week? Hope you feel stronger soon
keep strong everyone. Seems hard alone or with others to care for. I’m trying to keep my daughter at 16 yrs busy and have a spaniel that’s never stops! Done more baking this week than Iv done in a year. Found food colouring so out of date I darent tell you!!
Anyway stay strong .
my lovely friend got me a bracelet with SPW on , strong powerful woman xx don’t always feel it , but we are ❤️
Chuck , hope your son has the best birthday possible today.
Had a call yesterday from the chemo ward sister saying that they highly recommend I dont do the cold cap to limit my time and exposure to any risk regards to covid19. Seems having the cold cap extends my time by 2.5 hours. I totally get the reason why and asked my friends and family for opinions. I dont relish losing my hair when the cold cap seems to of done its job this cycle , I've not lost any as yet. Although I'm sure I will.
So I've a decision to make. Would be easier if I had lost hair . The whole purpose of me opting for chemo was to prolong my life ( I've already had the tumour removed, this is a belt and braces procedure ) however if I'm further exposed to the virus then potentially I could die. As if dealing with cancer wasnt bad enough , weve all got this damn virus to contend with.
Hope everyone is well and staying safe
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