66866members
352843posts
cancel
Showing results for 
Search instead for 
Did you mean: 

June 2020 chemo starters

Highlighted
Community Champion
Community Champion

Re: June 2020 chemo starters

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

Highlighted
Member

Re: June 2020 chemo starters

Thankyou Horseylass, I have just bought a hat on-line it seemed the quickest solution.  Sleep well love aNN

Highlighted
Member

Re: June 2020 chemo starters

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. 

Highlighted
Member

Re: June 2020 chemo starters

Hi Ann,

 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 

 Tara xxx

Highlighted
Member

Re: June 2020 chemo starters

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.

Highlighted
Member

Re: June 2020 chemo starters

Hi Cubot,

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.

Tara xx

Highlighted
Member

Re: June 2020 chemo starters

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 😝

xxx

Highlighted
Member

Re: June 2020 chemo starters

Hi ladies,

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

Highlighted
Member

Re: June 2020 chemo starters

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.

Highlighted
Member

Re: June 2020 chemo starters

The wig looks great on you ttyler 

 

Highlighted
Member

Re: June 2020 chemo starters

Hi all

hi cobut

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

 

Highlighted
Member

Re: June 2020 chemo starters

Hi Lam,

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

 Tara xxx

Highlighted
Community Champion
Community Champion

Re: June 2020 chemo starters

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

Highlighted
Member

Re: June 2020 chemo starters

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

Highlighted
Community Champion

Re: June 2020 chemo starters

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

Highlighted
Member

Re: June 2020 chemo starters

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

Highlighted
Community Champion
Community Champion

Re: June 2020 chemo starters

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

Highlighted
Member

Re: June 2020 chemo starters

Hi ladies,

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?

 Tara xx

Highlighted
Community Champion
Community Champion

Re: June 2020 chemo starters

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

Highlighted
Member

Re: June 2020 chemo starters

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

Highlighted
Member

Re: June 2020 chemo starters

Hi Cubot, I was warned that this delay happens regularly, sorry it was your today, fingers crossed for next week.  love aNN

Highlighted
Member

Re: June 2020 chemo starters

Looking good, hope mine is a nice.

 

Highlighted
Member

Re: June 2020 chemo starters

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.

Tara xx

Highlighted
Member

Re: June 2020 chemo starters

6926FDB7-0525-4D18-9306-BECC5D60823E.jpeg

Highlighted
Member

Re: June 2020 chemo starters

ED653F88-4B29-4470-9F8E-403BB25CDBB9.jpeg

My wig

Highlighted
Member

Re: June 2020 chemo starters

My hair now 

4FFF31CE-9B2A-4FF6-BB31-C429F4F56BB0.jpeg

2E3B41A7-5E0B-4803-AA70-A26BB8EEEFC3.jpeg

Highlighted
Member

Re: June 2020 chemo starters

Hi Cubot,

I bet you are disappointed, think I would be too and you have been feeling so well. Hopefully with the extra week you will be stronger to go again.

 It’s raining here all day today too. My husband cleans windows as a job and he has been unable to go out. He is taking care of me but think he is climbing the walls because I am okay and he can’t get out lol.

 The chocolate sounds good. I’d definitely be up for that!

 I have a wig a real hair one my hair dresser is cutting it for me at the moment. I can send you a pic of that if you like and what my hair looks like now, it has not fallen out yet though so have not had to wear it don’t think it will be long though because my head is so sore and itchy.

 Meant to ask you ladies, my skin has become greasy and spotty, any ideas on what I can do to dry my skin out a little.

 Hope everyone is okay

 Tara xx

Highlighted
Member

Re: June 2020 chemo starters

Hi ladies

Hope everyone's chemo went well today, especially the first timers 😊 I ended up not having mine as when I got to the hospital they took my blood again (I had a blood test on Tuesday and it showed low neutrophil and white blood cell levels) and my levels were still too low. The nurses said not to worry and this isn't unusual - lots of people have at least one session where their chemo is delayed for this reason, but it was a bit of a shock because I thought I was doing well.

I never thought I'd be disappointed not to have chemo but I have to wait another week now for my levels to go up and of course that makes my 'end date' a week further away. 

So that, plus the weather (it's raining cats and dogs here!) has made me feel a bit low today. On the plus side I did google 'how to raise neutrophil levels' and found a study that says dark chocolate has a positive effect so will be self-medicating that way 🤣 (medical disclaimer, the nurses said there's nothing I can do so this is purely an excuse to eat chocolate!).

Anyway thought I'd share because once again I've been forcibly reminded to expect the unexpected, which seems a pretty good rationale for getting through this. 

xxx

PS If anyone wants to share wig photos (appreciate you might not want to share them of you wearing them of course) I'd love to see, when yours arrive! I wasn't going to get a wig but now I'm tempted!

Highlighted
Member

Re: June 2020 chemo starters

Hi Ladies,

welcome to Plumblossom and good luck for today. I had FEC last Thursday and it wasn’t too bad at all. Just drink plenty before and after to get that chemo flushed through! 

 Funnily enough Ann I am waiting on a grey/silver wig. It is the most popular colour at the moment I’ve heard too. We will all be okay if our hair comes back through grey won’t we?lol 😝   


How’s the weather today for you all? It is hammering it down here but there is a lovely cool breeze coming through the lounge window. Just what is needed because I have been so stuffy and hot the last couple of days. 

 Hope everyone is okay and today goes well. Remember we are all here if you need us.

 Tara xxx

Highlighted
Member

Re: June 2020 chemo starters

My wig has been ages in coming as grey wigs are the most popular colour, isn't that bizarre.

Highlighted
Member

Re: June 2020 chemo starters

Good luck tomorrow Plumblossom. I'm 10 days in and felt really relieved once I'd actually started the chemo. I'm looking forward to getting through the first cycle so that I'll hopefully have a rough idea of the pattern for future cycles. Good luck (and keep drinking plenty of water). Tabs

Highlighted
Member

Re: June 2020 chemo starters

hi plumblossom and welcome, I’m not normally one for forums but everyone in here is so supportive and it’s great to be able to talk so openly, it’s sometimes hard with family and friends as I tend to put a brave face on and not worry them all.  
good luck for tomorrow.  
thank you everyone for the well wishes for tomorrow xx

Highlighted
Member

Re: June 2020 chemo starters

Good Luck Plumblossom. I hope it’s ok for you. xx

lam, no I hadn’t planned to drive to my actual chemo appointment just to the other two that I have before. However as we live an hour and a half from the hospital I think 3 hrs diving is going to be too much. I had my op a month ago too. I think part of the problem is that our roads are so twisty it’s a lot of gear changes and steering so worked my left arm a bit more than I’ve been used to. One of the other things was the seatbelt rubbing, I need to get one of those soft seatbelt covers. 

Highlighted
Member

Re: June 2020 chemo starters

Hi Cubot, 

Thanks for your support and good words, these are what we need in this strange time! 😘 xx

 

Highlighted
Member

Re: June 2020 chemo starters

Tara, yes I looked into donating my hair. They weren't accepting donations at the time I was looking due to COVID (though they are now!) and as I didn't cut it off all in one go when clean it would have been very complicated to detangle! If I'd not used the cold cap I would I think have done it, having said that it's still quite hard to commit to the chop in advance so I'm not sure. Plus I'm quite grey and I'm not sure there's enough brown left in it 🤣 I wouldn't want to give anyone the task of picking out all the grey strands! If anyone else has long hair and is thinking about it here's the website https://www.littleprincesses.org.uk/

Highlighted
Member

Re: June 2020 chemo starters

Hey Plumblossom (pretty name!) and welcome! You will be in great hands, my chemo nurses were outstanding 🙂 Hope all goes well, just take it as it comes (such a cliche, but true!). xxx

Highlighted
Member

Re: June 2020 chemo starters

Hi everyone,

I’m new here, just wanting to let you know that I’m so pleased to see so much positivity in this forum.

I’m starting chemo tomorrow morning. FECx3; Tx3. Feeling a bit nervous but I know I’m in good hands. 

To all of you, the June Starters, I wish you all the best! 😊

 

 

 

Highlighted
Member

Re: June 2020 chemo starters

Hi Lam,

Good luck for tomorrow . Remember we will all be there with you.

 You too Cubot hope all goes okay. You will have to let us know how it is and if you feel any different from last time.

 My hair has not fallen out yet but it is dead sore at the roots. Don’t think it will be too long. Were you able to save your hair Cubot as you could have sent it to be used for wigs for children with cancer. Mind you may not be able to use it now you have already had one chemo.

 Sleep well ladies!

 Tara xx

Highlighted
Member

Re: June 2020 chemo starters

Thank you horseylass, good luck for Tuesday.  I was told by the nurses not to drive myself as your blood alcohol levels can be over the legal limit for driving.  When did you have your operation done? Sorry you probably have said.  I didn’t drive for 4 weeks following mine as it keep pulling on the scar.  It’s not easy but enjoy letting other people do things for you, well that’s what I was told.

xx

 

Highlighted
Member

Re: June 2020 chemo starters

Good luck lam, tomorrow. I have my first one on Tuesday. Hospital tomorrow to see the oncologist and then pre appointment on Monday. I tried driving today to see if I’d be able to drive myself unfortunately I’m really quite sore and stiff from that so my husband will have to spend a few hours in the hospital car park over the next few days! It’s annoying but I guess I have to get used to having to have stuff done for me. I thought I had good movement coming back in my arm and shoulder but having used it for half an hour I realise I have a way to go. 

I got some of their hats too, they’re a lot more reasonable than some of the other places I’ve found. 

Good luck Cubot too, I’m glad it isn’t as daunting after the first one. 

I hope everyone else is ok. x

Highlighted
Member

Re: June 2020 chemo starters

Thank you Cubot I’m so nervous about tomorrow.  Sorry to hear about your hair I’m dreading it.  I’ve ordered some beanie hats from hats4heads they should be here in the next couple of days, they were so reasonable with the prices, I think I’ve ordered 5 plus a sleeping one and it was only just under £40.

 

good luck tomorrow with your second round and also to anyone else have a round this week xx

Highlighted
Member

Re: June 2020 chemo starters

And lam477 thinking of you too! I was so nervous before first chemo, definitely much more relaxed about this one. xxx

Highlighted
Member

Re: June 2020 chemo starters

My hair is pretty much all gone now (I have my second round of FEC tomorrow) - I used the cold cap but didn't work for me. My mum cut it off into a very short bob today - first new hairstyle for 22 years so I'm aiming to embrace the change - got quite excited thinking about the different styles I can try out when it starts growing again! It was definitely a shock when it started coming out, especially as I'd kept my length (way past my shoulders) in case the cold cap worked, but now I'm a bit relieved I don't have to deal with it on the days when I'm feeling rubbish.

I've been using regular summer scarves to cover up my remaining wisps but just ordered some cheap vintage silk ones from Etsy which I'm looking forward to arriving. I used this video tutorial https://thewrap.life/blogs/tutorials/beginners-go-to to help work out how to tie the scarf and keep it on my head, it's quite dramatic (!) but there are some other less funky ones if you don't want a big bobble at the front of your head 😄 I also treated myself to a fitted turban: https://www.suburbanturban.com/infinity-band-kimmy-chemo-hat-set.html 

Whoever said they'd go mad if they stayed indoors all the time - I'm with you on that! I go out most days for a short walk with my mum - I did have to shout "please stay further away I'm critically vulnerable" at a couple who got too close but they were very nice about it and stayed away (I think they were quite confused 🤣)

Hope everyone's doing OK - Butler10 thinking of you tomorrow as I'll be having my second chemo too.

xxx

Highlighted
Member

Re: June 2020 chemo starters

Thank you both I will have a look, I’m the same with hats ect think it may be a bit warm in the summer with a woolly hat on xx 

Highlighted
Member

Re: June 2020 chemo starters

Horseylass  I got a couple of there. They didnt take long to get them either.

Highlighted
Member

Re: June 2020 chemo starters

I’ve had a look on heads4hats they’ve got some nice ones and not too pricey. I’m not a big fan of hats apart from my woolly ones that I wear all winter for work. Harder in summer though. 

Highlighted
Member

Re: June 2020 chemo starters

Thanks for the advice re sickness I know we don’t always force ourselves to eat when we feel sick but I suppose little and often.

i had my lump removed middle of April and starting chemo Thursday, I think by the sounds of it everyone is different.  

I had my chemotherapy talk today so got to ask all the questions I had so it’s put y mind at ease slightly although still really nervous.  

cancer hair care called me yesterday as well and they are sending me some eye lashes along with the doll.  My children are slightly older, 14 and 10 but my 10 year old has autism and I know he will appreciate the doll to explain things.

I want to look at getting a head scarf can anyone suggest where to go or what to get as don’t want to look like I’m playing a gangster with a bandana on 

xx

Highlighted
Member

Re: June 2020 chemo starters

Surgery is 4 months off for me so no idea.  

 

Highlighted
Member

Re: June 2020 chemo starters

Hi Ann,

 Thanks for the advice on sickness. I was feeling a little nauseous this morning but okay now. I think it is getting used to our bodies again. I now know that having a little to eat helps with the sick feeling even if I don’t think I’m hungry.

 Do you know what type of surgery you are going to be having? You may have already said and if you have I am sorry just sometimes have trouble remembering what people have told me lol 😝  

 I had a phone call from cancer hair care yesterday. The lady was very nice, she is going to send some eye lashes and a woollen doll. It shows children how your hair will come out. This I thought would be ideal for my 7 year old, he can take charge of that and will be able to explain the process to family and friends when lock down is over. I thought it would help with his Aspergers. The team are helping people all over the country at the moment which is good.

 The weather here is warm today however I think a storm may be coming!

 Hope everyone is feeling okay today 

 Tara xx

Highlighted
Member

Re: June 2020 chemo starters

Hi Cecilia sorry you are having such a bad time, if it helps I had sickness from my first treatment closely followed by an upset tum which was partly caused by overeating and the wrong food, probably won't learn but here's hoping.  Hope you are feeling a little better now.