thanks for this,felt such a relief to think I can eat and feel some way better soon.So pleased to are feeling better Cant imagine drinking a hot drink and I’m asking for ice constantly!
its also very encouraging to hear that you are doing things 😀
you have a busy day ahead so hope it all goes to plan. Don’t know about you but feel like I want to be in a germ free bubble! So hard with corona virus and the pressure on our nhs.
i got my wig on Monday and was pleased with it.Nurses say my hair will be gone soon so another hurdle to come I know.
i chose not to cold cap in the end after much thought.
Good luck to everyone who is though hope it works for those that are.
That’s EXACTLY how I felt Jowels! And it was hard! But after a couple of days my appetite was back with a vengeance, and I managed coffee and everything else I enjoyed before chemo #1. I had a bit of brain fog too, but this week I did some work and pottered about. A good week! Not sure how I will feel when the chemo goes to weekly though, but I will cross that bridge when I get to it.
Today, three hospital appointments - lympodema check up, wig consultation and dressing change/flush/bloods. I am day 10 after chemo and they say your white blood cells will be at their lowest.
I hope you have a better day today. I felt really crap for two days, then just crap (but eating) on day three, then just brain fog a couple of days after that. Helen x
thank you all for the wishes and tips - I might try the cap again (when they eventually call me back) and go with the flow - while washing hands!!! Coronavirus situation scaring me.....
Fingers crossed for today Julianna. No advice for Hickman line. I would ask them. I have a PICC and they have given me a protective sleeve for the shower. I assume eventually you will be able to get yours wet?
I had the cold cap on my first chemo. It’s not so bad. Yes very cold as you would expect, but you do get used to it. I am not sure I will continue though as it just prolongs my treatment to 3 hours, when the chemo is only an hour. And I am not too precious about my hair. If I am going to lose my brows and lashes, I might as well go the whole hog! So I am umming and arring at the moment. I have a wig consultation today, and I had my hair cut into a short bob yesterday which I love 💕
Anyway let us know how you get on. Have a good day all 😊 Helen
how we all doing?
i am day 3 of first cycle and I’m not going to lie,it’s been a tough few days.This is the first time I could type a message.
The first side effects surprised me and my husband and son as they started 3 hours after getting home.Retching,vomiting only twice but the nausea is something else.I am on Emend,which I know is gold standard thank goodness as I’m unable to have the ondandestron as it interacts with my Asthma meds.
I also have had my steroids and have metaclopramide that I’m also taking.Have zero energy and am only getting up for the toilet and trying to keep doing few of my arm physio from my surgery (not easy to do when you are wiped out).
Oncology say this should be the worst of it and I should pick after 3-4 days.
food wise- managed 3 crumpets since Wednesday,sipping iced water, cordial and a few queasy drops for the taste in mouth.Going to try an ice lolly today and see if this helps.I also have some ginger ale with the lid off to get rid of fizz.Hope this may help also.I eat so healthy normally so it’s so odd not being able to tolerate anything I usually would love.
my advice for anyone about to start is sleep,sleep, sleep and do anything you can to help relax -I’ve got podcasts,music,meditation and box sets.Im finding that if I just take it hour by hour that seems to help.Ive accepted that this is how it is for now but another day closer to getting through it.
Hope you are all getting on ok.
sending hugs to you all x
so sorry you couldn’t get started on your chemo.Such a disappointment when you are all set to go.
hope you get started soon
big hug x
Yep, Hickman line ok, local anaesthetic given, the nurse was amazing!! What I’m struggling now is showering and not getting it wet - anyone has any tips with this?
After having tried the cold cap in action I’m wondering if I’ll go through with it, felt rather sick at some point, but I hear that you get used to it - the worst is on the first 10-15 minutes, is that right? (For those that are cold capping ;-)) xx
OMG Juliana, sorry to hear this.
No wonder you are frustrated. All that anticipation, not what you need!
How did the Hickman line go? Did you have a local anaesthetic?
I’m just back from hospital as due to have had my first chemo today. I was ready to go, 10 minutes in with cold cap running to then be told that they didn’t have a test result report and they would not be able to continue today - really frustrating 😞 hope to hear from them tomorrow xx
Best of luck for tomorrow Julie.
I imagine that we will receive more info from our hospitals as the weeks go on regarding coronavirus.
My oncologist’s secretary rang today to sort a telephone consultation rather than a face to face appointment next week. Suspect more of this will follow and I for one am happy not to have to drive in, pay parking etc. Still got to have bloods done and next chemo next week!
All the best x
Hi ladies , it's all getting a little bit mad with this virus going round !!
After having my first chemo session cancelled lat week , I am due to start tomoro !! At long last. I'm eager to start but also worried about compromising my immunity. As I'm sure we all feel at some point. Trying to stay rational is easier said than done.
Hope everyone is keeping themselves safe and have minimal side effects.
Every single post on here is inspirational and reassuring. So I'd just like to say thank you.
Hi wildspur and everyone much appreciated for your kind wishes.
ah no it’s a nightmare with little ones isn’t it. I know exactly what you mean.
Hope you are getting on ok and your son picks up soon.Everything seems to happen together doesn’t it.
Hope everyone is getting on ok.lots of hugs x
Good luck Jowels. It certainly isn’t as bad as you think it will be. Big hugs 🤗
I have my six year old off school today with temperature and cough! Although he seems to have perked up now he knows he isn’t going to school...I am trying not to touch him! 😂😂😂
So I’m having a Hickman line inserted tomorrow in preparation for my first chemo on Thursday.... I’m finding that the anxiety is building quite a bit now so have been going to the gym and it does seem to help....
yep, Coronavirus outbreak is worrying me too - we had training sessions on hand wash in my house 😉 xxx
Best of luck for tomorrow Jowels. I found the anticipation much worse than the reality so hope all goes smoothly for you. let us know how you are doing xx
hope you are all doing ok and managing the side effects ok.I know we all at different stages of our March cycles.
i got my wig today -sureal experience to add to all the other we are having these days.Im pleased to say I am happy with it.
im having my first cycle tomorrow and am worrying about the corona virus on top of being immune compromised from chemo.But all we can do is to keep ourselves as safe as we can-difficult with young children.My house is like a hospital ward as it is (typical nurse!).super prepared which is good.
i just want to start it now and will think once I leave hospital tomorrow I’ll be reminding myself I only have 5 more.
anyway sending you all lots of hugs and well wishes
I think advice alters from trust to trust, my onc told me no matcha powder, Rose hip, turmeric, green tea. I just always checked everything with my unit first just to be safe 😁 Anyone not getting on with your antisickness meds, let your teams know ❤️Pace yourselves keep the water flowing through too helps liver and kidneys as they can take a battering during chemo but your oncs will keep close eye on them too 😘💕💕✨✨Shi xx
Just being a mother hen here, please check with your units about any supplements etc to ensure it’s not interacting with the chemo ❤️ You don’t want anything stopping it from doing what it needs to do ❤️ 💕💕✨✨Shi xx
Hi everyone, the thought of a bacon butty will keep me going today. I’ve taken to bed with nausea but luckily hubby has the shopping and kids birthday party invite sorted for this afternoon.
I had my wig consultation this morning. I’m now the proud owner of a medium brunette pixie style wig. I decided I wasn’t ready to embrace my inner grey despite my hair being salt and pepper brunette/grey naturally. I did try a couple of grey ones on and they didn’t feel like me. At least with a brunette one people might assume I’ve just had my hair dyed. I’ve also bought a couple of different hats for days when I don’t feel like wearing a wig. Nice and soft and match some of my outfits.
I might try more white carbs to see if that helps with the nausea and lack of appetite. I only managed one mouthful of coffee this morning before deciding it was making me feel too yucky. I’ve only got one more day of anti sickness meds so might need to see if I need to get some more or if the nausea should stop by then. Probably wishful thinking.
I’ve set up a private blog using the Caring Bridge website because I was finding it too much updating people individually and at least now I only need to post one update and I can control who has access to it.
Thanks everyone who shared your PICC line experiences. I’m not feeling quite as scared about it so it really did help.
Hugs to all
How are you doing?
White carbs was the order of the day for me too for around 5 days. Then thankfully on day 6/7 taste buds back and started to eat normally again and enjoy what I was eating ... so hang on in there!
I am day 11 since first FEC and enjoyed a bacon butty this morning which would have turned my stomach this time last week! Plus I managed over an hour of gardening today.
As someone said, chemo is an endurance test and I guess we all have to listen to our bodies and have the rest and the white carbs as required! Funnily, I too cannot stomach the idea of coffee!
Take care and feel better soon xx
p.s great idea doing a blog! I feel like a broken record at times having to give all and sundry an update on my symptoms 🤣
i didnt have an xray after my picc went in. He just showed me the scan pictures afterwards. Said all was fine.
re multi vitamin pills ?? speak to your chemo nurse/doctor ... i was told to stop all my vitamins once i started my treatment as some can react with the chemo.
mini mad xx 💖💖
sorry to hear about the nausea.
ah I’m dreading the nausea -yack
after I was diagnosed I had a lot of nausea due to having to take morphine prior to surgery and I didn’t eat for days.
i have queasy drops,mints,booked sweets and chewing gum along side rich teas,crackers and rice cakes at the ready.
Im only hoping I have a good combination of anti emetics as I can’t have Ondansetron as it interacts with my asthma meds -honestly you couldn’t write it!
oncologist said she will sort so hope so.
i don’t know if it will help anyone but I’ve been drinking peppermint tea instead of tea as it settles my stomach(good for digestion) and is calming so plan to keep on with that.
Sending hugs to everyone x
I hope the sickness is subsiding! Thanks for the tips.
It all started off so swimmingly for me. I thought, oh this isn’t so bad. I felt great on Wednesday and had a normal day of school runs, friend for coffee and general pottering.
Then the nausea hit me on Wednesday evening. Morning sickness x 1000. I took to bed and that’s where I lay until Friday morning. I then made myself get up and try and be ‘normal’. I called the Greenlea Unit at HRI – that’s where ‘it’ all takes place. I hadn’t taken my meds correctly! I have two anti-sickness tablets (Ondansetron and Metoclopramide) and a steroid (Dexamthasone) which I had got mixed up with. Doh. So fingers crossed after Chemo #2 I will feel so much different. I have generally felt very tired and a bit spaced out too.
Isn't it strange how we are all on different meds / how they are taken etc? Do you take yours and then stop after so many days or are they continuous? Mine was take for 3 days then stop (apart from the steroid which you have to do gradually over 6 days) I haven't been told about the Filgrastim - I will ask about it on next chemo day...
I can't stand the smell of coffee and I have gone from two cups a day to nothing. Thursday I ate nothing. Friday I ate…Toast and butter. Toast and marmite. Chicken soup and bread. Jacket potato and butter. There’s a beige theme going on! I have ordered some queasy drops as they are mentioned quite often!
I had my PICC fitted the day of chemo - 3rd March same as you? I didn't feel a thing. Honestly! The thought is worse than the procedure and it will be much better in the long run, especially as you hate needles. Just don't look at the X-ray if they show it to you of the tube going up your vein near your heart.
Take care for now. Helen x
Thanks Ange - Shefgirl
And thanks for the advice. I took to my bed on Wednesday evening I felt so bad. I couldn't stomach anything! Just water. Yesterday I had bread, bread and more bread. Oh and chicken soup! So a bit more substance.
Are you taking a multi vitamin at all? I might start. I haven't been told about the injections to boost white cells. My bloods were perfect on the first chemo session - I am sure that will change. Next sesh on 24th. I got my meds a bit mixed up hence why I feel crapper than I should.
I am writing a blog for my friends as I am getting so many messages at the moment. I wonder if they will die off?! It just keeps them up to date with what's what and then I am not overwhelmed in replying to everyone.
Onwards and upwards. I am so glad you are feeling better!! That gives me hope Helen x
Hello Mini Mad :cathappy:
I hope all is good with you today. And thanks for your message
I do have a PICC Line. So far so good. I just don't like looking at it! I have ordered a PICC cover. It will definitely be easier in the long run with everything they need to do - all in one place, and yes they say it saves your veins. I also can't think about the tube in my vein going to the heart. Did they show you the X-ray of it in?
Quick tip for bone pain caused by injections Epsom salt baths ❤️ It’s a tip that’s been handed down the threads ❤️ Also when your hands and feet get dry and no moisturiser works udderly smooth with extra urea from amazon is a another tip that’s been shared down the threads ❤️ You might already know about these from other threads you’ve read but just in case thought I’d share ❤️ 💕💕✨✨Shi xx
So sorry to hear about the nausea symptoms,sounds like eating bits now at least which is good. Just think you have done the first one now which is brill and one step closer.
i don’t have any personal experience of a PICC line but I wish you the best with it.
sending you and everyone hugs x
I was feeling nausea within about 4 hours of my first chemo. I’ve been given dexamethasone steroid anti sick for one day and metoclopramide anti sickness 3 days a time for 5 days. I’m still feeling the nausea despite them but haven’t actually been sick. I’ve been drinking lemon and ginger tea, sipping carbonated water through a straw, eating ginger nuts and sucking queasy drop sweets. I’m managing but not sure which one is the most effective.
I’ve just started on the daily injections of filgrastim to boost my immune system for 7 days. Hoping the bone pain isn’t too bad which it lists as a side effect.
I’m waiting for an appointment to have a PICC line fitted so would appreciate any feedback if anyone has had one fitted already. I’m worried about the procedure but know that it’ll be for the best in the long run.
I’ve checked with my chemo team about indigestion tablets too as I’m finding I get it no matter what I eat now.
I completely lost my appetite on the first day although it’s gradually coming back although I’m finding I’m a bit fussier about what I feel like eating. Bananas, porridge and soup for me so far.
Hugs to all.
well done for getting round one over with!
sorry to hear about the nausea. I had it for around 5 days, like morning sickness. Pitta breads, plain chicken, bananas and porridge helped. Pleased to say that tastebuds now back and eating normally so hopefully you too will soon feel better. Drinking 8 glasses of water a day also really helped.
Are you having the injections to boost white cells? I had a seriously bad back this morning and think it was down to these. Thankfully I’ve got no more until the next round and will discuss with my oncologist.
Hope you feel much better very soon.
you asked about picc line ?
i had one put in after my first chemo session. My veins arent so good and the nurse could only use 1 hand. They recommended it have one.
if you want to ask any questions go ahead.
mini mad xx 💖💖
Happy to hear everyone is managing their side effects without many issues, long may this continue.
I went for my pre assessment yesterday, ( was due first chemo session today ) however my temp was slightly high +0.4 c so they opted to cancel it to makesure I wasnt coming down with a bug. I'm a little disappointed to have this delay but I realise they had my best interests at heart.
I was seen at first by a junior doctor training , she told me I couldn't have the cold cap as it doesnt work with docetaxel......and I would lose my hair ....hmmm
So I challenged this when the oncologist came in as I have read several people have had success with the same treatment plan as myself. I'm having 3 x ec + 3 t. It also states in the cold cap guidelines it works with docetaxel. So not quite sure what the junior doctor was on about. Glad I stuck to my guns . I'm now due to start next friday.
Treats on chemo days sounds good , I think I may take this tip also.
Wishing everyone good luck with se and first chemo sessions.
Have a great weekend.
Good morning ladies.
It sounds like we are all getting into the swing of things.
I had a meltdown yesterday as the nausea kicked in on Wednesday evening. The worse feeling in the world.
Had anyone else had nausea so soon after the treament? What meds is everyone on? I feel a lot better today - I have washed my hair and eaten some toast! Has anyone else had a PICC Line put in?
My first chemo was on Tuesday - which wasn't so bad. I had the cold cap too, which also 'wasn't so bad'!
Beloo7,I like you had long hair.Got it into a short bob yesterday and actually I quite like it 😊such a strange thing for sure after so many years with my long hair.Was so quick washing and drying so taking all the positives ha ha! Glad you had a good experience at the salon and your wig.
Hope everyone is else is managing side effects ok.Sending everyone a massive hug and thanks for your good wishes.xx
Thanks Shefgirl and Sally, yeah my hair is pretty dull, lots of 'roots' and lifeless at the moment but it still feels reassuring being long. The girl at the wig place yesterday was hilarious and made it all so much less scary and i'm really happy with what i tried on- to be honest it looks like how I wish my hair looked on a good day! I figure we are allowed to have little bonuses throughout this journey 🙂 I go back next week for final fitting and she said she could cut my hair then too which I think i might just do and might even start wearing wig.
Edinbird - you were right that LA hair were so nice and made the whole experience fun but they were also so professional which made me feel completely relaxed.
Tracy, thats great the side effects haven't been too bad and i also like the idea of planning treats.
Jowels - good luck with your treatment on Wednesday.
Big hugs to all x
thanks so much for sharing your story. It is good to hear the chemo wasn’t as bad as you expected. Shopping afterwards. Amazing.
Such a good idea to plan some treats. I’m going to do that. I do hope it goes well for you and that you have a relatively easy ride.
You are being amazingly positive. I know it isn’t always possible to stay like that but sending lots of positive vibes and hugs 🤗
so pleased you been ok after your first chemo.Im taking all the positives in prep for mine starting on Wednesday
one day at a time for al of love us
we got this
sending everyone hugs x
I was in the same position as you after I had my pre assessment on the 26th February. There seemed such a lot of stuff to take in and chemo scared the hell out of me even though I knew it gave me the best possible chance of still being around in 10 years time.
I had my 1st chemo 3rd March so 2 days ago now. The worst part for me was getting the cannula in my hand to administer the chemo as I don’t have very good veins. The 1st one hurt and didn’t go in right so they had to try again and use a different vein. But I can honestly say that the actual chemo wasn’t as bad as I’d been expecting. The nurses were all lovely and reassuring. The lady who administered mine had been doing it for over 20 years. They’ve recommended I get a PICC line fitted to make it easier for taking bloods and administering future chemo cycles. I’ve weighed up the pros and cons and decided to follow their advice.
I surprised myself by going shopping afterwards as I felt fine. Slight nausea didn’t hit until about 4 hours later and it was easily managed with lemon and ginger tea, ginger nut biscuits and queasy drop sweets. I was so tired though. One of the side effects of the anti sickness meds is tiredness so I was kind to myself and had an early night at 8pm.
I’ve been advised that the side effects won’t really hit until about day 4 but even then everyone reacts differently to chemo and you don’t usually get all the different side effects. I’ll be at my lowest days 7-10 and then will pick up again just before the next cycle, only to start all over again. The advice I got from the nurse was do what you can when you can.
I’m not quite as scared of the side effects after reading through my cancer treatment record that I was given on the day of my 1st chemo as it lists all the different side effects and what action you need to take, eg green be vigilant, amber call the advice line, red 24 hour advice line or straight to A&E. it seems quite straight forward and I’ve accepted that there might be the odd time when I need to go to A&E to get checked out. Whatever gets me through safely is now I’m trying to look at things.
We’re all here to support you and here to listen. I’m feeling positive right now but I know that there’ve been some low days and tears along the way and there’s bound to be more up ahead. I’ve planned little treats for myself throughout my chemo sessions to give me something to look forward to, a reward for actually turning up and going through it each time.
Hugs and let us know how you get on.
It’s really difficult to know what to do. I went out the day after the chemo introductory session and got myself a wig but I think I’m also going to try the cold cap so covering both bases at the moment.
My Mum had to wear a wig for years so I remember all the stuff she went through. Part of me is dreading it and then I tried my wig on and it really does look good.
I can so understand that thing of feeling you look like yourself. Just having that wig has been a massive relief for me so I feel a little more relaxed about it all now.
Sending love and hugs to all of you though.
😘 🤗 💕
It is really difficult to know what to do re hair loss and whether to cold cap or not.
It really is such a personal decision.
I have never had luscious locks and so having short hair isn’t problematic for me but I can imagine if your hair is your pride and joy not having it would be devastating and could really affect confidence etc
I looked at using the cold cap but decided I didn’t want that extra time added to sessions. A big factor for me was also that being 53 I need to colour my hair and that is a no no through treatment. My hair is dull, flat, wiry and grey at the moment and makes me look old!
But a friend of mine in her 20s used the cold cap successfully during her chemo.
I have gone down the wig route and chosen one close to my current short hair look in a chestnut brown colour. My sister came with me to try wigs and I took lots of pics to show my daughters and hubby. I am happy with it as it looks like me - rather than me in a wig, if you know what I mean 🤣
I am sure when my actual hair does fall out it will be very upsetting but all any of us can do is try and be informed of our choices and get prepared as best we can.
Wishing you the best of luck with whatever you decide to do for you xx
To be honest I'm really not keen on the idea of cold cap as I can't bear being cold/ any more uncomfortable than i will be anyway - I think I'm a bit of a woose! And i figured it would just stress me out on top of everything else but in saying that it would be great to see how you got onwith it. Yes its LA Hair I'm going to today x
Bel are you planning to cold cap? I know it doesn’t work for everyone but I’ve got lots of pictures as I went and I can show you my hair in person if you want! Where are you going for the wig? I went to Lifetree but LA Hair Solutions are very good too.
I’ll send you my number by direct message if you want to chat xx
It's taken me a little while to get back on this as I think i was still trying to get my head round it all and if I didn't post anything then maybe it wouldn't all be true?! I love reading all your posts and all the wee tips on how to deal with various side effects are really great. I have just been given date for my first chemo -16th - so i'm off to see about getting a wig fitted today.. i have mixed feelings about getting my hair cut before it starts coming out - I like your idea jowels of getting into short bob - I just don't know what to do.. part of me wants to stay looking as much like 'me' as I can for the longest I can but the other part of me knows I will break my heart when long clumps of hair start falling out.. Hmmm, i just don't know.
Sending lots of love and big hugs to everyone x
so pleased you finding things manageable.Loving the tips of pineapple,pleased I have plenty of that and rich teas are something I like to quell the nausea -used these a lot pre and post surgery!
Being out in the sunshine certainly helps like you say.I try and get out running when I’m able and hope to be walking on my good days.
Im off to get my hair cut tomorrow into a short bob as couldn’t face losing my long hair.I am booked to cold cap but you just never know how it will go so best to be prepared I guess.
sending hugs and positivity to you and everyone x
It is a week since my first infusion of FEC and definitely feeling more normal as each day passes. All side effects so far have been manageable. Couple of things have worked really well- pineapple from the fridge for cotton/metallic mouth; rich tea biscuits for mild nausea and chicken noodle soup. I feel like I have been suffering from morning sickness so eating small amounts throughout the day rather than big meals. And dried apricots/prunes for constipation.
Managed some short walks and trip to local shop and going for a longer walk with hubby today before collecting my wig!
The sunshine is definitely helping my mood.
Finding managing my day very strange as not at work and kids are independent so need to get a bit of structure sorted or the days seem quite long.
Hope that your treatment goes well next week. Found the anticipation far worse than reality for round one.
Good luck to you and everyone starting soon xx
how we all doing?
How did you find your first infusion?
I got my time for first infusion -which is next Wednesday.Just want to get on with it.Im having 6 cycles of FEC.
sending hugs to you all
thanks it’s good to know it wasn’t too bad. I did allow myself a few little treats after I’d finally organised and reorganised clashing medical appointments. Apparently dark chocolate is good for scar healing. Along with jelly cubes. Who knew. Anyway I’m not complaining. 😋
You are so right. The waiting, the uncertainty and the fear of what next is definitely the worse. I am trying to take heart in the advice of treating one day at a time but sometimes it just doesn’t come that easily. In the meantime chocolate and jelly 😆😆😆
Take care and I hope everything goes well for you. 😘
I think we all go through those emotions - it is such a life changing shock to the system. Some days I still don't believe what it happening! And you are allowed to feel like you do. It will get better honestly. For me it was the waiting - waiting for results, waiting for appointments, waiting for chemo day. And also yes they do bamboozle with information. I still am a bit unsure of what treatment I will be having going forward!
I was diagnosed on 20th December. Op to remove lump on 14th January, and today first chemo 3rd March.
You just have to remember the oncologists and staff really know what they are doing and you will be in their best care. They have been amazing to me, and today hasn't actually been that bad. I do worry about the side affects over the actual 'strong medicine' as my 6 year old calls it! But so far (touch wood) I feel 'normal'.
Keep busy, and try not to sit and dwell about 'what might be'. We are in good hands. Take care, we are all here for you. Helen
Thank you Ju72
It is all so overwhelming at times. So much info to take in and an emotional overload. I did need to take some time out today. I visited a fantastic Macmillan drop in centre and they were so lovely.
I do hope it all goes well for you on Thursday and Friday. One appointment one day after another without much time to process so take care of yourself. Feel for you already.
It really did help me to post on here today so thank you everyone. Feeling more positive again.
Sending love and hugs 🤗 💕