So sorry to hear you're having a a really tough time , I'm finding I'm close to tears and cry a lot and I mean a LOT ! We all try so hard to be brave but sometimes it just gets too much especially when things don't go right.
My 88 year old mother in law was admitted with pneumonia last night she has dementia and we sat at the hospital for 5 hours waiting to be seen, my daughter in law had a concern on her 20 week babies scan ( all ok now ) and I'm getting increasing anxious about starting my EC Tuesday which I was ok about but now have constant heartburn and am so teary and I'm full of cold , normally I'm pretty strong but we have to be kind to ourselves and realise this is a really crap time and we are allowed to be all over the place
Hugs to everyone this morning KC xxx
i love your poistive attitude to this rollercoaster. Can you send a little my way please as my anxiety off the planet for having my 1st one on tues
Yes Lisa, I hope you are feeling better...day 7 and I feel 85% like myself!
Viv, you look amazing..def not identical twins!..but I would feel really tempted to start playing some practical jokes on your children...I am thinking matching outfits/ cross dressing at the very least.
The food situation is sad. My mouth seems to have lost its usual smooth lining and sense of taste. I am craving small amounts of fatty stodge,...croissants sound perfect! Funnily enough I am not that bothered by sweet food...and I am really worried about my mouth..So rinsing loads with diffculm which I was prescribed.
Let's face it, we can get away with being demanding for a bit....
I am going out tonight to my friends for food and kitchen dancing...I just need to premessage everyone to check they aren't viral or infectious...oh the glamour of chemo!
Vivmc love the photo 😍 I never had pregnancy cravings, but croissants sound a good one to have!
Hope you’re ok Lisa xx
I cries at the docs all over the nurse yesterday having my blood taken - or not as it was! I have crap tiny veins and she couldn’t get enough - called the gp in and he couldn’t draw any either 😩 I just lost on then as she suggested rearranging on the day I’m due to have my hair off 😩 9 year old son was in waiting room as was still off school due to his tummy. He asked if I was ok when I came out and I said ‘Not really...’ and he said It think they should have given you that laughing gas.’ Bless him x
You May not remember but I entered the Optima trial - so I find out on Monday if chemo is actually happening, and it would then start Wed. I am so stressed out because trying to prepare mentally, but can’t commit 100% and it’s driving me bonkers! Anyway, happy weekend ladies x
And if I smile I really do look like Greg Wallace...ha ha, love that one Shi.
I went on holiday just before chemo so now have a slightly brown face and pink head...
How are feeling today Lisa? Hope you got your nausea under control. I am Day 3 and still got a bit of nausea but I was the same last time. Trying to avoid the woozy pills!! I keep getting pregnancy like cravings...yesterday it was fish fingers, this morning hubby has gone off to buy me croissants for breakfast...I am being a brat, ha ha
Happy weekend everyone
Don’t know if you’ve already got travel bands Lisa? Quite a few have used them with good success. Please do ring your unit if meds not working, they will tweak them till they get you on right ones for you ❤️👍 big fat tick first one done lovely 👍👍 now please do be careful ladies one of the May17 ladies thought she had Greg Wallace peeping in her window one night and it turned out to be her own reflection 🤣😂🤣🤣thought I’d share it with you all to hopefully bring a little 😁💕💕✨✨Shi xx
Thank you Helen. They gave me anti-nausea drug there and also some to take home (I’ve taken one). I decided to call them and they said take another at bedtime and call back if I vomit. I knew it wasn’t going to be nice but didn’t expect to feel quite this bad ☹️
Fingers crossed tomorrow will be better.
Hope you are feeling better soon too x
Hi Lisa, hope you're doing ok.. the antisickness meds they gave you before should last the day. Did they give you aprepitant (emend) to take tomorrow and day after? Not sure if they give that in all hospitals.. i felt nauseous and tried to eat a little bit at a time. It's hard to drink water when you're feeling sick but please try, even if just lots of little sips. I gad 2nd round on Wednesday and def better 2bd time round. If it doesn't get better then please ring your centre and they can give you something else..
Well done for getting round 1 under your belt!
So hard to know how long your nausea will last... Did you get anti nausea meds before and after? If so, then you may want to call them if it lasts.
Just remember to drink, drink, drink...
First EC today. Everyone at the hospital was lovely and very efficient. Left there feeling very woozy but not too bad.
A few hours later and I feel very nauseous. I have eaten ginger biscuits, drinking water and taken one of the tablets they gave me, but not feeling any better yet.
How long does the nausea last?
Oh and I wasn’t expecting all the wind!!🙄🌬
Hi Helen, my downturn came day 7 and wiped me for about 3 days, only 1 day in bed but the other 2 were hard work, it was exciting to be able to go for a walk again... I was most excited by water tasting normal again.
Strangely water tastes fine this time round!! Hope that lasts.
Still haven't found a hobby Debknits, seem to be watching too much crap tv instead!!
Can't believe you are managing to create amazing things on chemo....it sounds like things pick up after week 1? I am hoping so...
After 4 good days, I have been wiped for 2 days...greatest achievement today was doing 3o min walk round the park and watching bad TV ....just feeling trippy...but my temp is OK. I have become a bit of a hermit which is unlike me, but feels like the right thing to do at the moment .
Like you Viv, it is hard to know if it is chemo or a virus...but we just need to keep on riding the chemo surf wave!
The bunny was a just because I fancied knitting her lol
The tea cosy is for school. Every few weeks a child from each class along with parents is invited to a Friday afternoon tea party with the head teacher. They have cakes biscuits squash tea coffee etc, I’m making cosies for the events,
Good luck for Tuesday and Wednesday ladies, you got this!! Once you've got the 1st one in the bag it will def help psychologically as you then know what to expect. My chemo nurse didn't tell me any side effects as she said I would then be either expecting symptoms or wondering why I didn't experience the same as others...
I went from shoulder length to short Twinklestar and it def helped going through the transition...
Who is tomorrow, is it you debknits. My fogged brain has lost track.
Don't panic about diarrhoea Twinklestar, just keep washing your hands and make sure he washes his. I bought disposable gloves I use for cleaning so that could be an option. I have hand sanitizer at front door so that anyone who comes in cleans their hand (it's the virus and bacteria one)
I was very sad as my daughter has really sore throat and I couldn't get a birthday hug from her...her card was more artistic than my son's, ha ha
I am also having FEC -T, I started loosing my hair on day 15 after first treatment, I didn’t use the cold cap, I have second treatment tomorrow. I had my head shaved last night, as it was falling out in clumps. I collected my wig this morning, and quite happy with it as it is similar to the style I had it cut to after finding out I was having chemo. I also have a selection of hats.
good luck with whatever you decide, you have got to go with what is best for you.xx
Hi Twinkle I think you me and Kc all starting around the same time so we will all lean on each other to get through this
sending hugs xxx
Thanks Helen - that’s useful to know. I wasn’t sure if I was delayed by a week due to second opinion request - but it seems not x
Chris - I am due to start on Wed Fec-T as well. I have a Bob with highlights I love (did have really really long hair about 6 months ago too). I’m booked in for a haircut on Tues. Not going to cold cap because I don’t want the discomfort and likelihood of hair that is dry, can’t style or hairdry, wash only once a week (I do every day) etc if the hair doesn’t fall out. So - I’m going for a pixie cut. Even if it’s only going to last a couple of weeks and then shave it - I personally feel I need to do it in stages. I’m going to ask for the shortest pixie possible! Really feel for you and your anxiety. I have my info meeting on Monday and have to go alone as husband taking Wed off and he’s got a super important meeting. I’ve already seen the chemo ward, so I hope I can be ok.
Today I had a call from sons school as my eldest had diarrhoea 😩😩😩 He’s Hope now and I am now freaking out in case I get it before Wed 😩😩😩 Have been hand sanitising 😬
like you I’m having my pre assessment on Monday then Tuesday 14.15 it starts , my background is a retired nurse , I retired early because my husband was retiring with the plan to enjoy our retirement together , best laid plans eh ! However my background as a nurse isn’t really helping , it’s the old saying we know a little bit but not enough , so I’m anxious to ,it all felt a bit surreal at first and after Onc appointment it felt very real ! And I now have heartburn and getting headaches which I am sure is all stress related and that’s before I start lol . It’s great your not alone on your journey and hubby sounds a gem.
We will get through this, it’s nice to know someone starting on the same day 🙂
Hugs back 🤗 KC
start next Tuesday and am scared of the unknown so it's making my anxiety go off the planet. Am going for a visit to the chemo ward next Monday so hopefully it will alivate some of my fears.
I know it's not going to be an easy journey and you right everyone if different.
You seem to have a really positive attitude towards you hair which is really brave.
Looks like we are starting on the same day, how are you feeling about it?
I am a bit of a worrier so shall see what I'm like on Tuesday, my hubby has taken the week off, which has settled me a bit.
We shall take this journey together let me know how it goes on Tuesday and we will get through this
sendng hugs xx
Hi Chris I’m having FEC-T and started losing my hair on day 15 which was yesterday, today I’m definitely losing more
didnt bother with the cold cap .
I just had a short cut (pics further down on this thread) will decide as I go along whether to brave the shave or just stick with it.
good luck with whatever you decide. We are here with you xx
I was told by my breast care nurse that my hair will come out after my first cycle of EC around 2nd 3rd week and it will be quite quick when it starts . I took the decision to cut my hair shorter from a bob to a pixiie cut as I didnt think I could cope with my lovely bob falling out . I now like my short hair and am now not too sure about my wig which is a bob cut , it's so difficult as you say , we have so many decisions to make when you really don't know what's best. I have read lots of forum threads and articles but it's such an individual thing , I have chosen to brave the shave when it starts to come out and have my hairdresser on standby , I also know I will probably be devastated when it happens I don't think you can ever be really prepared no matter what , however knowledge is power , I don't like surprises so although I will be upset , I wont be surprised that I am , if you get my meaning .
I decided against the cold cap but that's a personal decision I made as my hair is highlighted and had to be coerced into a style and I understand you have to be really careful with your hair.
When do you start your FEC , I start my EC this coming Tuesday
I was wondering if any of you are having fec-t chemo and how long after did you start to lose you hair.
I am in a bit of a dilemma as to whether to go for the cold cap or just shave my hair off and wear hats.
If any of you lovely ladies can give me an estimate of how long you started to lose your hair, I can ask my friend to shave It off if I take that road.
i have never had to make so many decisions in my life before this rollercoaster
Feeling zonked today. Woke up at about 6 totally freezing, had to put trackies on and hat!! Temperature up to 38 but Oncology nurse was happy for me to take paracetemol and just keep monitoring... still at 38 but hasn't gone up anymore. Could just be a reaction to the chemo yesterday. Anyone else have similar reaction?
I am having chemo 1st too Twinkestar, but they want to do all my targeted drugs 1st aswell as otherwise would have to wait too long inbetween.
My surgery was on 5th September, Chemo on 15th Nov... So very similar to you. I had a mastectomy with implant, sentinal node biopsy and a mammoplasty on the good side. As chemo suppresses your immune system they like your body to be as healed as possible. I know a couple of people whose implants have not taken when they had surgery after chemo... So better to wait a bit longer and have fewer complications ❤️
Hi - those of you having chemo post surgery, how long after surgery did/does your chemo start? Mine will be 8weeks and 5 days. Seems long...?!
Hope you’re feeling better Viv, the card must have cheered you up (it cheered me up and it’s not even my son / birthday! 😂) x
Thank you everyone for your lovely and very helpful replies.
It sounds like trying reflexology and maybe other complementary therapies would be worthwhile and there is a centre not too far where they offer this, so I think I’ll give that a go.
I’m on a waiting list for some counselling too and will look into all of the other suggestions you’ve all made. X
My birthday’s December 1st, we’ll see if my two boys remember mine! Can’t remember who was asking about cold capping - I have done it three weeks and it’s going well. No hair loss as of yet and the cold cap is fine. I just bring warm clothes and tea.
Re the anxiety - I highly recommend acupuncture, reflexology, or shiatsu. I’m getting a session once a week and it’s really helping. Also had an EMDR session with the oncology psychologist this week to start working on some medical trauma issues from a biopsy and port procedure and I could feel it working - unraveling some of the fear and anxiety about procedures.
i definitely relate to your anxiety, hopefully the anti depressants will kick in soon. Is there an form of counciling you have near you. I am going to get some through work starting after my 1st chemo. My know the NHS have something call talking therapies, you doctor might be able to point you in the right direction.
hope your anxiety eases soon xxx
Thought I would send you this to make you chuckle...my 12yr old son has obviously put extra effort into his Birthday card this year, ha ha
Hi Lisa, I was speaking to the reflexology lady (who was a also a nurse for 16 years) and she said it was great for anxiety. Not sure if it's something you want to try in the meantime?
I had a meltdown whilst waiting for chemo today and it really helped. I think watching my hair go down the drain triggered it and the fact I look like a street rescue dog didn't help.
Hope you are doing OK and remember you can rant on here when you want and we will listen.
Hi Lisa 👭😘👭please speak to your team, there are support systems in place at all trusts and they can help with fear and anxiety, so glad you’ve shared on here ❤️ Everyone is 👭👭👭for you, also please do use the ask the nurse facility and the someone like me options on here, it could give you a light bulb moment ❤️ This is a crazy rollercoaster, just hang on, flash your bum at the camera and take it one treatment at a time, once you’ve the first one ticked off, your off and it’s whayyyy heyyyy here I come ding ding Chemo bell, I’ll be ringing the heck out of you 👍 sending big ❤️💕💕✨✨Shi xx
Oh Lisa I’m so sorry you’re struggling with all of this.
hugs to you and know you are not on the road to recovery alone, we all walk alongside you every single step of the way xx
I am not surprised about how awful you are feeling...anti depressants can really work but they may take a while to kick in. So if you are needing help to get you through the first treatment, then have you asked about someone to help you with anxiety reduction in the short term?
Hugs and kisses xxxx
Birthday wishes from me as well... Just think of the fabulous, hairy, and cocktail-filled Birthday you will have next year when we have kicked this chemo period out of our lives xxx.
Hope your birthday was as nice as it could be Viv. I think you will need to have an extra big celebration after your chemo finishes to make up for having the wrong kind of cocktail today!
Hugs to everyone whose hair is going off on its prolonged holiday.
I bought a wig today in readiness and it made me sadder than I thought it would.
I also went to my GP to get some anti-depressants/anxiety and she gave me sertraline. Is anyone else on this and have you had any side effects? I’m a bit nervous about taking them, but I’ve had quite a few days now where I’ve felt I really can’t deal with things and she said it’s worth trying anything to help get through this. All your advice very welcome.
I'm having a lovely birthday chemo cocktail as we speak Debknits, thank you ❤. I did have a treat though and had reflexology while I waited for premeds to take effect..
My head is so tender to touch so all the hair follicles are dying...reckon it will be gone by morning...
Hi Chris, when the nurse’s on the unit spoke about it in our intro meeting I dismissed the idea, the cold part put me off. When it came to chemo day the nurse looking after me didn’t take no for an answer, she suggested I tried the helmet on and see how it felt. It was very cold but after a few minutes it was actually ok, my treatment was around 2hrs in total and managed it for the entire time. I would say to anyone give it a try if you want to, if you don’t like it then you can take it off ☺️ xx
Happy birthday, so sorry you get to have a chemo cocktail on your birthday, maybe you’ll feel upto a real one later
thinking of you Viv, hope all has gone well.
thanks for the link really useful.
Was just wondering what the cold cap was actually like, is it bearable?
I am starting chemo next week and am going to give the cold cap a try, we shall see how it goes, still have got hats and a wig in case it doesn't all turn out good xx