Hello everyone, welcome CactusQueen!
I'm focusing on CactusQueen's comment about the cold cap as I gave it a go. First off: the coldness didn't bother me at all, in fact it was quite soothing! Secondly: I recommend taking a stretchy headband to put around your forehead - the nurses put gauze to protect mine but for me the cap was very tight there so I got a bit of a pressure headache from that. Thirdly: make sure it's fitted tightly - the nurses should too but you're the only one who can feel whether it's snug enough. There are videos on this website which show how it works, I found them really helpful to watch beforehand: https://paxmanscalpcooling.com/patients/ Fourthly: take some conditioner to put on your hair; this is to make sure your hair doesn't freeze to the cap! I took leave in conditioner which meant I didn't have to wash my hair for a while.
Finally, be aware it might not work. I do still have some hair left just over three weeks after one session of chemo, but probably about 25% of what I originally had. I've cut it really short (today - and I actually love it, very liberating if a bit GI Jane!) and you can see my scalp through it, so I'm not going to have the cold cap at my second session. I'd still recommend giving it a go because it does work well for some people! Good luck!
Hope everyone else is doing OK 😊 xxx
Belated welcome cactus Queen. Horseylass, can you where long sleeves, trousers and boots when you go out to avoid bites. Horse flies are really vicious when they get you. I normally have a good bmi though I gained a covid stone since my surgery at the beginning of April. I'm on a 3 week ec cycle, I put on weight in week 1 but I think it was mostly water retention and have now lost that and stabilised now I'm at the end of week two.
To be honest when I am worried about something or poorly the weight usually drops off me, however since finding out I had breast cancer all I have done is eat. For the first 3 days after chemo I struggled because everything tasted like salt, however I am now back to eating like a pig again. I am not necessarily eating bad food but am craving white bread and pasta. I only have to look at carbs and put a stone on lol 😝
My Nan had brain cancer 26 years ago and I watched her tiny frame go through chemo and get smaller and smaller. I am not saying that will happen to any of us but I have go it in my head that if I have a bit of weight to help my fight. However I do realise that being over weight is also not good for cancer. I am just trying to eat at the moment and then will have to go on a diet when I come off chemo. Although I do feel that my fat fingers are because of water retention due to steroids as they are fat from the top to the joint and my face has got fatter too. I’m still in the same size clothes just look a bit more swollen. Trying to drink lots of water to help it.
My mother in law has just been through bowel cancer, stage 3. She is a survivor 2 years clear and she lost lots of weight all the way from having pains in her legs/belly 6 months before diagnosis til finishing treatment. She went from size 14 to size 6. Just back into her size 14 because she has given me some comfy trousers of hers to wear around the house.
As long as you feel okay and don’t loose too much weight which they will monitor I’m sure you will be fine. I would rather loose it than out it on 😝
my fingers have got so fat from the steroids what I type does not always make sense lol 😝
My gnat bite is still there but not as red my husband assures me so think that is what it is and not an abscess which is what the unit thought it could be. The nurse called to check on me this morning and agrees it probably is just a gnat bite lol. I was told to take piriton to help with the itching. This has worked a little.
I know what you mean about walking, I love to have a little walk and 5 minutes to myself. Just have to be extra vigilant with them pesky flies. It’s amazing how carful we have to be whilst going through treatment.
It must be lovely living on a farm, my 7 year old would love that. He has Aspergers but has a great calmness with animals it’s as though he really gets them and they understand him. He says he wants to be a vet and I often imagine when he is older that he will have a house surrounded by animals or maybe a even better a farm like you.
Hope all goes well for you on Tuesday.
hello all you lovely ladies. Sorry I’ve been quiet for a few days. Welcome to the new people sorry I’m useless with names.
well I had my first course on Thursday as as I said a bad day but things have improved slightly. Although I feel like my energy has been zapped all I was to do is sleep. I don’t really feel like eating but know I’ve got to. All I fancied yesterday was Chinese sweet corn and chicken soup so I made the rest of the family endure a Chinese just so I could have my soup and oh my it was amazing. I’m just sleeping as and when I need to but I do feel guilty for the rest of the family. I’m trying to be on my best game by Tuesday as it’s my daughters 14th birthday and don’t want to ruin it for her.
my wigs haven’t arrived yet but my hats from hats4heads have and they are brilliant for the cost. I got 6 different ones for about £40 so can have a change when I fancy it, although so far my hair is all in tact (I think) I’m paranoid when brushing it and check the brush to see if it looks like a normal amount.
still having to take the anti sickness tablets every day and now on a laxative but apparently that’s from the steroids they give you. I’ve not had to have the injections this time but they said they will reassess at my next session.
good luck to those starting their treatment on Tuesday
Thanks for that Tara, that’s really helpful.
Are you ok now after your gnat bite yesterday? I have to say I’m paranoid about insect bites at the moment as I was warned to be careful after my surgery and now with the chemo too. We have loads of cleggs (horseflies) at the moment and the damn things were trying to bite this morning whist I was walking the dogs. My husband says I should stay in the house but it’s my daily exercise and one bit of normality! We shall see. I’ll perhaps avoid it on my vulnerable week.
Ann is right the injections don’t hurt. My mum and husband did mine for me but then the other day I was in my own so did manage to do it myself. Something I was worried about but was really okay. Just sit down pinch your skin between your finger slightly and gentle put the needle in. The you push the liquid in and mind sprang back so that you don’t stab yourself as the needle comes out or before you put it in your sharps bin. The hospital should give you one of these.
Hope everyone is having a good day.
Thanks for the information about the injections Ann. There’s no way my husband will do them for me. We have a farm and I have to do all the injections for the animals. So I guess I’ll be doing my own!
CactusQueen, I know what you mean about phone appointments. My physio one was a real waste of time. I guess we just have to be thankful that it reduces the number of potential exposures to Covid.
Thanks for the welcome everyone
I am having 3 sessions of EC then 3 of something else! I had my pre-chemo appointment on the phone sitting in the hospital car park whilst waiting for my PICC line appointment. I don’t really like phone consultations, I find I zone out when they tell me something negative and don’t really get back on track. I understand why they are necessary though. The nurse might have mentioned injections but I really don’t remember.
Sorry ladies I am such a bubble head. We have got your hand too Cactus queen for Tuesday ladies not tomorrow.
Lots of love
💕 Tara xx
welcome to the ride cactus queen 👍🏻
Good luck for tomorrow Horseylass remember we have all got hold of your hand, you have got this!
Hope everyone is feeling okay today and happy Father’s Day to all of our partners that are daddies to humans, furry people or those dads here in spirit.
Have a nice Sunday!
Sending lots of love
Hi Cactus Queen and Horseylass, I am also on EC Horseylass and you will be given 7 jabs to take home with you, really fine and short needle, doesn't hurt, it helps your white blood cells (hope I have got that right), my hubby does it for me. Will be thinking of you both Tuesday. Cactus queen lots of us are new to forums, this one is a life saver, all welcome.
We’re all friendly here and are here to support each other. I hope that eases your apprehension.
I’m starting my chemo on Tuesday too. Have you had your pre-chemo assessment? I have mine tomorrow and I’m hoping to find out more about what will happen. I’m having six sessions of EC. What are you having? I’m not bothering with the cold cap as I want to spent as little time as possible there and I figure that I’m not really going to be seeing many people so I’ll just cope with hats! No one has mentioned injections to me either. I hope I know more after tomorrow.
I hope everyone else is good today.
I am completely new to forums or any sort of social media so I am feeling a bit apprehensive. I hope I do things right!
What a crazy year it’s been for all of us. I first went to the doctors at the beginning of April, two operations later I’m due to start chemo on Tuesday. Thank you so much everyone for the advice you’ve given. I’ve been reading the posts for two weeks wondering whether to join in. I am very scared about Tuesday and the days after, hopefully it won’t be as bad as I think... I am going to try a cold cap so would love to know any advice/ successes people have had with one. And what’s this about injections?! No-one has mentioned that joy to me.
Happy Father’s Day to all the dads out there.
Thanks for the information Mai. Interesting about the alcohol wipes.
Good night Ann and to you other ladies. Sleep well
I just came across this article on nausea which I thought was worth sharing. Written by a nurse who had cancer:
sorry I have not been on much today. Had my last injection last night and it took the wind right out of my sails. I had a pulsating feeling in my bottom and i went all stiff. Call the unit for advice and they told me it would be the white blood cells rebuilding themselves. No temp or other symptoms so okay. Then this morning I woke up with what looked like a gnat bite in my left bum cheek 😝 it is itchy and stinks no puss in it. Called the unit again and doctor has told me to keep a real eye on my temp today and if I get Puss I need to go in to see him. To top it all off I bit my tongue in my sleep and now have an ulcer. Well I can safely say that I am feeling loads better sickness and heartburn wise but feel like I am having my monthly lady cycle, and high I have not had for 7 years due to being in the deli injection. I am currently trying to sit down to eat lunch but everything stings lol.
Rant over! Hope everyone else is okay the weather is beautiful here now after the tai. This morning. On the plus side a had a nice long warm bath this morning and imagined I was lying on the beach somewhere nice with the breeze blowing all over my body. Can wait to feel that again!
Love to you all
Hi Shi & Cubot and all you lovelies, thank you for your words, you are quite right Shi and your comments about looking into my eyes bought tears and relief. You all make this easier to bear. Cecelia if you are in touch with cancer hair care perhaps they would want to know, if not for you perhaps others? Cubot, really sorry you are having such a fight.
Thanks to all love aNN
So sorry to hear that Ann, it is horrible when you're hoping that something is going to be able to make a positive difference and it's a disappointment. Like Shi said you might be able to go and have a look at some different ones if you ask your specialist nurse? I was hugely disappointed when I received my silicone prosthesis and have complained about the whole consultation process. I've fed that back via my specialist nurse and they are going to set up an in person appointment for me with them (rather than the company that is contracted to 'fit' the prostheses). I found it really hard to decide to give the feedback as at the moment anything tips me over the edge emotionally, but the nurses are being incredibly supportive and understanding, so I'm glad I did. Although I appreciate that we can get wigs and prostheses on the NHS it is a bit depressing how limited the options are, I'm thinking of Cecilia's experience too where she said there weren't any wigs suitable for her.
Hope your hat arrives soon xxx
Ann, so sorry to hear your wig is not what you were after, I don’t know if your Macmillan centre is open at your trust? They have preloved wigs that you could buy for a donation, I’m not sure if that’s possible with Covid though. Luvyababes do great wigs (and not just fancy dress ones) I’m not sure if they are online or when their shops are open. I had some good ones from amazon too and they came quickly, maybe order a few to try if you can think some good ones I had were only about £20 or so. Raquel Welch wigs are good too, I had one of those too. (The steroids sent me wig buying crazy during chemo). Hope this helps you get something you feel comfy with, it is usually distressing to start with because you don’t see you, but I promise you, you are still there, look deep into your eyes in the mirror, you will still see you ❤️💕💕✨✨Shi xx
Thankyou Horseylass, I have just bought a hat on-line it seemed the quickest solution. Sleep well love aNN
Oh no Ann, what a shame and how disappointing. There is a website that Shi mentioned further down the thread that sells wigs, maybe they could help? I’ve just looked it’s called luveyababes.
I did start out not wanting to tell anyone but I have since told a couple of friends and some family and it’s actually really nice to have their support.
This thread is for all of us having chemo in June 2020 and I think the idea is that it is just ongoing for us so that we know where to find each other. If you want to start a new thread you need to go to the relevant section on the forum and click on the New post button at the top. For example this thread is in the Chemotherapy monthly threads section. Does that make sense, I’m sometimes not very good at explaining things.
I don’t know how to start a new thread either lol. Not very good with technology unfortunately.
I am sorry to hear about your wig. What a nightmare. I suppose that is the problem with not being able to try them in properly. Bloody virus. Mind you Ann I often say I don’t do things by halves. Look at us we got cancer during lock down and I’m not sure what type you have but I have a really aggressive form. If you are going to get it might as well go all out hey?
Do you know a hair dresser that could tweak if for you to make it look more like your normal hair? Hair salons are back open in just over a week. I’m sure you would look beautiful without the wig but was just thinking if you want to keep your journey to yourself.
There are some lovely hats and scarves out there and the other ladies have included links to where you can get them from.
Please don’t be disappointed, keep smiling
Sorry Tara for replying when I actually want to start a new post but can't work out how. My wig arrived today, I waited 3 weeks for it and it's awful, really gutted, I've sent it back and will now not buy one. Since I have not told a sole about my cancer life is going to get challenging if I am seen.
They do yoga at the gym I go to. Think they have been doing virtual classes over lock down, however this may be too intense.
I used to be a competitive swimmer and so miss swimming right now. It really helps me to think and get my brain in order. In fact I have not been swimming since the night before my biopsy results when my friend told me it wouldn’t be cancer and probably just a cyst. Funny how things turn out isn’t it? I am a member of the gym but only use the pool. I take the kids in there and my husband goes in the gym. Then he comes in the pool to watch the kids whilst I lane swim. We have a little process lol.
I was going to get a Nintendo switch and do the get moving exercises on there but due to lockdown I can’t get one from anywhere. I will have a little search in YouTube to see if I can find something low impact.
How is everyone feeling today?,hope all okay.
Cecilia it's good to hear I'm not alone (although obviously I would have preferred we both stuck to our schedules, oh well, that's one thing I'm being taught it's that I can't control everything which I guess is a good life lesson!). I am also probably just going to rock bald/headwraps/turban etc, while the wigs do look amazing I think for me deciding what to choose would be quite stressful! They probably don't do a half brunette half grey wig 😂 which is what would be closest to my previous hair!
Tara sorry to hear you're achy, hopefully it'll pass quickly for you. Exercise-wise I've been doing yoga and gentle walks. My oncologist talked about the importance of keeping active and suggested the Joe Wickes workouts but I've never exercised that much before in my life so didn't feel like starting now! I found that when I was achy the yoga was quite helpful - I was taking classes before this so asked my teacher to help suggest some poses. I also found it helped quiet my mind and with sleeping, so maybe worth investigating? I only do very gentle stretching though, no leaping about attempting to look like an instagram yoga goddess 😝
in regards to anti sickness I had it through my I’ve before chemo and then an emend tablet to take for the 2 days that followed. I also have donperidone to take when I feel sick. These along with the lanzoprazole have really helped.
Cecilia my husband thinks that I should wear a bald head when my hair comes out and a lot of people look very beautiful like this. I think Robyn Roberts an American news reader did when she had cancer and look at Kylie minogue. I bet you look equally as stunning you go girl! My hair has always been important to me do not sure how I will feel without any but am willing to see how I feel.
My body really aches all through the night last night. At one point I went to the loo and seized up so had to slowly get up and walk like a crab back to bed! I watched pesky blinders on Netflix yesterday, really getting into that and did not move much off the sofa. I am going to try and walk around the garden today for exercise. Is anyone else exercising at the moment and if so what have you been doing?
Just off to have a bath now to try and relieve the pain.
Hope everyone is feeling okay and has a nice day.
Love Tara xxx
Hi Lam477, I had the same sickness problem after first chemo and ended up in a & e, luckily they changed my anti sickness for the second treatment so I felt nausea but was not sick, so make sure you tell the nurses. My main issue is food, I can't eat what I want as my stomach doesn't like it so I seem to be living on bananas, chicken and salmon but only tiny portions ie 100 grams a meal so I will definitely not be putting on weight.
like you I was unable to have my chemo on Tuesday due to
low white blood cells count
i need to wait two weeks
and funny enough I was also disappointed when I was told
I've decided not to wear wig just because it very difficult to find the perfect fit a black lady
of certain age
I have been getting a lot of compliments on my point one shaved head
did anyone here have a sun burn side effect from their radiotherapy treatment and
what are you using to relieve the itch
i hope you are all keeping well xx
You have not brought the chat down. That is the whole point of it to discuss how we are feeling good or bad and to support each other through this bloody awful train ride. You have now entered the tunnel and there will be light at the end of it!
Well done you on your first round so brave. Luckily I was not sick but did feel exactly the same as you are describing and was surprised that I was not sick to be honest. As the days go on you should get better. Mine is just aches and pains now really in my lower back and legs I think from the injections. Do you have to have those too?
The flowers sound lovely, enjoy you deserve them.
Hope tonight is okay for you and you feel better tomorrow.
Lots of love
Lam447, try and keep hydrated ❤️ And do ring your rapid response number, don’t try and struggle through, you don’t need to and your team are there to help you ❤️ I had akynzeo before chemo and then the m one that mai7 has mentioned below and was ok with that, others on the oct17 thread wore travel bands that helped them during chemo. Please do let your team know, they will tweak your meds till they get right combination ❤️💕💕✨✨Shi xx
Hey Lam, so sorry to hear you feel rubbish 😪 If it helps I was also sick twice the afternoon and evening of chemo (the anti-nausea pill I took was probably too late) and once the following day, plus I had a banging headache, so I don't think it's out of the ordinary how you're feeling even though it sucks. The nurses and oncologist have said that they can give me more hardcore anti-nausea meds if I want, so definitely ask your team if that sounds helpful. I did get back and shoulder pains but that was about days 3-6 and was from the injections, so not sure about the kidney pain - maybe call your acute care helpline if you're worried? They were very reassuring when I called them about being sick twice. Btw I also had trouble sleeping for quite a few nights, got really hot and woke up thirsty all the time, so keep a bottle of water on hand. Really hope you feel better soon - you can do this! xxx
Hi lam477, sorry to hear you’ve been a bit pukey. When I was on chemo I took metoclopromide anti-sickness medication which worked fine for me but not for everyone. I know some upgraded to Emend but had to ask for it as it was more expensive. Xxx
Tara loving the wig, when mine arrive I will post pictures. Well had my first round today of Fec, it went really well no issues being given it at all. Came home and felt like I had the worst hangover and sickness possible took an anti sickness tablet which didn’t help and finally at 8pm was sick. Now my back (kidney area) is hurting but think it’s from the wrenching. Has anyone else felt like this after their first one? I’m hoping I’ve got the worst of it today and will be ok tomorrow 🤞 But on a positive I got home to a lovely bouquet from a friend which cheered me up as well
sorry to bring the chat down. Xx
Tara 👍 I had a wig that I wore for treatments, and lots of others for whenever I felt like it, steroids made me 🤪 I had a real hair one then ended up happier in a £20 one from luvyababes (they don’t just do dressing up ones) I had tinsel wigs and the coloured bobs 😁 just do what you want during chemo 👍 whatever makes you 😁 or 💃🏻💃🏻🕺🕺💃🏻💃🏻 On the food front just do what you need to do to get through chemo, your liver and kidneys can take a battering but they check on these in your blood tests 👍 if your usual skin creams don’t hydrate your hands and feet well enough a tip is udderly smooth cream with extra urea from Amazon, it is a tip that’s been passed down the threads and has helped lots of us with dry skin on hands and feet caused by the chemo 👍💕💕✨✨Shi xx
The spots have come out over the last couple of days. Not there on that photo taken at the beginning of the week.
Thanks for the advice Shi I will have a word with the team to see if they can prescribe anything. Didn’t realise they might be able to prescribe something😊
like Shi has Said it would be a good chance for those of us loosing hair to experiment with different wigs and hats. What a fun idea!
I am feeling quite well today a week after the chemo. Not that I have been to bad with se anyway but much more like myself energy wise. I also have my appetite back.
Are any of you ladies changed your diet at all since having cancer/chemo?
Hi ❤️Wig Tara. Please speak to your team if the chemo is giving you spots, it can happen, they might be able to prescribe something to help you. And just go as crazy as you like on the wigs 😁 coloured bobs, tinsel whatever takes your fancy 😁 💕💕✨✨Shi xx
Wow that wig is so glam! My hair has never looked that fabulous (except when I wear a mermaid wig I bought once 🤣). Tara you look great too, I can't see that your skin looks greasy. Not a chemo related problem but I found La Roche Posay products really effective for a terrible spot outbreak I had a few years back, a bit pricey but often on special offer at Boots. It's the Effaclar line I think. xxx
Hi Cubot, I was warned that this delay happens regularly, sorry it was your today, fingers crossed for next week. love aNN
Have another wig on order from the hospital supplier. This is more of a grey/silver colour. Not real hair but looks good.
A lot of the ladies having chemo last week did not have a real hair one and they looked just as good, that is why I have ordered one.