when i started my chemo only one of my hands could be used. I was getting in such a state that by the time i arrived for my treatment i was already climbing the walls 😱😱
Chemo sister suggested a picc line which i had put in and never regretted it. Made everything so simple and pain free 👍
i also live an hour away from my hospital but you get into a routine going once a week to have bloods taken and line cleaned and flushed through.
Maybe give it some more thought. Portacath insertion is, i believe more of a minor operation. Picc took about 25 minutes, slight discomfort for a few days then all f
Sorry just a quick reply as I've only got a minute but just wanted to say that I have a port and it was a bit painful for a few days after having it put in but it was fine after that and it was really brilliant when having chemo. You can put emla on your skin before chemo and it's then totally painless and no bother between sessions. I'd really recommend it. Hope that helps.
Lots of love and positive vibes to everyone xx
So I had my port checked all okay, I was too overprotective of it and caused my neck to stiffen up and the shoulder and neck area are inflamed because of that. I am also reacting to the dressings, typical! Once it's all healed it should be much better and easier.
When they doing your next chemo session wishuponastar?
Sunnybear I am sorry to hear you thought you were Her2 negative and now you are not. How can that happen? I completely empathise with the news just getting worst...been there!
LornaJ, do you have a portacath then? I thought they were supposed to be great so I am sorry to hear it is getting knocked and is uncomfortable. Whilst I was in hospital the staff were really struggling to get blood as they can only use one side. They said I need to ask about a poracath or a picc line. The thing with the picc line is it needs cleaning every week and I live an hour away from the hospital so really wanted to avoid having to go so often if I can. Helsbels which do you have and how are you finding it?
Shi, I was all for donating my hair but sadly it was coloured and not quite long enough. One of my daughters could not understand why we could not just make a wig out of the hair we shaved off. She even offered me hers! I bought a wig before starting chemo but I hate it and it was expensive. I now feel I cannot justify buying another. I am currently wearing a bamboo beanie with a Seasalt handyband around it for bulk and interest. My friend has also made me some great scarfs that have soft jersey band with the scarf bits attached. I suppose I just did not want the world to know I was going through chemo but I just have to get my big girl pants on and cope. I have done one school run so far. I just hope it gets easier.
Jemmalou, I really hope all of your efforts work and you manage to keep your hair. I had the option of a cold cap but my nurse said with needing 8 rounds of treatments is was very unlikely to work for me so I just decided not to even try.
I am feeling okay now, just terrified of ending up in hospital again. My discharge letter confirmed neutropenic sepsis!
Hi just found that my tumour is HER2 positive after being told it was not! So I start Heceptin on Monday.
just feeling overwhelmed by everything and cold cap is not for me so trying to get a wig!
all the best to those others going through hair loss - embrace your difference!
Awww I completely feel your pain wishuponastar it’s just makes the illness so visual for others, but you’ll own it! Remember It’s a temporary loss and will grow back once you stop chemo, plus sounds like you have lovely children and family around you.
I am trying my hardest not to lose my hair (cold capping, bought the silk pillowcase, been using dry shampoo and only washing when need to, bought the plastic bobbles) but if it’s going to happen it will and am sure your children will get you thorough this (my 7yo wants me to lose my hair so he can have the longest in the family! 😂) children tend to deal better than adults they are so innocent which is lovely, don’t worry about others sure your rocking the look! xxx 😘
Helsbels ❤️ If you are able to buzz your hair to no 1, it is liberating to take control. I’d cut my hair to bob before starting and sent hair to little princes trust that makes wigs for kids. It is a very personal thing when you loose you hair and no one can really understand how it makes you feel. People do mean well but because you are trying to come to terms with your hair loss, you want to tell them to shut up and how would they know. I was a wig girl all the way and had all sorts, coloured bobs, wig for best, wig for treatment, tinsel wigs (Amazon did a great range) sending ❤️ And reminder to you all book your look good feel better sessions with your Macmillan’s ❤️💕💕✨✨shi xx
Wishuponastar I think you are about a week ahead of me so am sure I’ll be standing in the shower with hair all over the place next week! I do think it’s probably the worst thing about this treatment as it makes the illness so public to everyone. I’m also fed up with people telling me it will grow back and it will grow back stronger and thicker! Have you got a nice wig? I’m not a scarf person and never will be but I do love a woolly hat!
I’m also finding the port a bit annoying but I think it’s just knowing it’s there and i can feel it - I keep this king of the bionic women (showing my age ladies!) I have heard of lots of women who had very little side effects so let’s hope we are those people that just feel a little bit odd for a few days 🤞🤞🤞 I’m trying to fill my time without going out or online shopping! Is anyone working through their treatment?
Well first chemo done on Wednesday. Tolerated cold cap but my poor forehead was a bit battered after and I’ve still got a funny mushy achy head feeling. Will definitely try a headband or some strips of gauze on forehead next time!
Just feel a bit queasy still and more tired than usual. Thank god for my Mum who’s dealing with my little ones for me🙂
Finding the “wait and see” approach to potential symptoms a bit frustrating! Think I might feel alright in a day or two but know some people say symptoms can come at a later stage!!
One of the most annoying things for me has been the port they put in my chest, both boys have hit it, it still is uncomfortable and hurts. Makes it hard to pick up my boys, sleeping has been uncomfortable. Anyone else had issues with their ports?!
I am so pleased to hear how well you all seem to be doing. Sadly, I lost huge amounts of Mt hair in the shower on Wednesday so I had it all clippered off yesterday. This has hit me harder than I thought. My children have been incredible about it though and I am so proud of them.
helsbels20 I feel the same as you, cold capping was fine, didn’t effect me at all just hoping it works! 🤞🏼🤞🏼 I had actually ice stuck to my hair when they took it off so hoping that’s a good sign and it’s done the job!
Fatigue has been a big issue with me, but no sickness yet and still been able to get kids to and from school so am winning in my eyes!
It’s so frustrating as I want to book little breaks away with my boys, but can’t for the fear of the unknown and what’s around the corner I know from what the nurses have said you might be fine one minute and then on your way to hospital the next so not taking it for granted and hoping feeling relatively normal continues.
Mistletoe injections - wow! That sounds really interesting and I agree I’d try anything! I was told to take a bottle of conditioner and a wide sport hair band to protect your forehead and ears from the cold. I didn’t find the gold cap too bad and actually the first cycle hasn’t been too bad (touch wood!) just felt a bit spaced out and tired. It’s more the waiting for things to happen that I find difficult - not knowing what to expect when, today - a week later, I’m feeling nearly back to normal but have a sore mouth! Good luck tomorrow xx
Thank you for sharing your experience. I’m due to get my PICC line fitted tomorrow. I am a little nervous about it so knowing that it isn’t too bad is good.
I am starting chemotherapy on Monday. Having 3 x FEC and 3 x Taxol. I’m dreading it but will be a happy to start it so I can finish it!
I was diagnosed with HER 2- and hormone receptive BC in October and has a single mastectomy in November.
I have decided to use the cold capping so if anyone has any tips on how to acre for my hair, products to use etc they will be gratefully received.
I am also taking part in a clinical trial which uses mistletoe injections to minimise the side effects of chemotherapy.
As you can probably tell I am willing to try anything to minimise the side effects!
Good luck to everyone xx
Hi Catd2504, another handy thingy to take is either some boiled sweets or chewing gum. Good luck with your first cycle 🙂
Thanks LornaJ and Helsbels! I’ve not been given anything in advance so will wait and see if they give me anything tomorrow. I haven’t got a wide headband so hopefully can muddle through tomorrow and get one for the next round. Thanks so much for the tips! Xx
Hi Catd2504 my nurse told me to take a bottle of conditioner, just your usual one and a wide hairband to protect your forehead and ears from getting too cold. A warm scarf or blanket to go round your shoulders would also be a good idea. I didn’t find it too bad but it was only a week ago so have no idea if it was worth it or not! A few snacks and a nice drink as you do have to sit there for a long time but it does actually go quite quickly Wishing you lots of luck for tomorrow 👍🤞🍀
At my hospital, they have me a hot tummy pack, hope they do the same for you. Made a world of difference.
I had a puzzle book and laptop, they had a tv. Take a large water bottle, so you have plenty of water. I put on comfy warm socks. Some people like wearing scarves. They gave me a large/wide tooth comb as they will use that for the conditioner and did they give u a headband? I got them in a charity bag in my appointment beforehand.
Got my first FEC chemo tomorrow. I’m going to try cold cap. Just wondered if anyone has any advice of what I should actually take with me for the appt?? Obviously something to read or listen to to pass the time but anything else any of you who have started can advise?? Thank you xx
Fantastic news you are home ❤️ Just always be vigilant while on chemo and watch out for your nadir days, any thrush mouth or otherwise or burning wee even with no temperature straight on those rapid response lines 💪💪💪 keep focused you are ticking them off now 👍👍😘💕💕✨✨shi xx
Just had chemo today, feeling very tired and a little nauseated. Got boys to put to bed then I'll be in bed too. I'm worried the sickness is going to be bad like my pregnancy.
I'm home and my goodness it feel great. Shi I really hope I am like you as I found it so hard being away from my children. They said in all likelyhood my consultant would lower my dose. I had the injections to help with the white blood cells from day 5 and they extended these in the hospital. I wonder if I could get a higher dose of these?
How are the rest of you getting on?
Hi Wishuponastar really hoping your are feeling better and have some idea of when you might be home. Thinking of you x
Wish upon a star, sorry to hear you’ve ended up in casa nhs ❤️ Your neutrophils will start to raise day by day, it’s just pants waiting for them to whoosh up, but they will. I had reduced dose chemo for my remaining 5 after doing casa nhs on 1st Chemo, might be something for you to discuss with your onc if you want to. Right jan thread time for the May17 chemo starters famous neutrophils 💃🏻💃🏻🕺🕺💃🏻💃🏻Don’t ask me why but it works, worked for them and is oct17 chemo starters, do wish upon a star, you pick the tune on the chemo jukebox and jan2020 thread will get neutrophils 💃🏻💃🏻🕺🕺💃🏻💃🏻For you 😘💕💕✨✨shi xx
Hi Drida, I had EC on 7th and felt rough on 8th and worse on 9th but have felt loads better since Friday and pretty much normal over the weekend. I'm starting the bone marrow injections tomorrow so not sure what that will bring. Hope you're feeling better soon.
Wishuponastar, sorry to hear you're still in hospital, hope you can get home soon xxx
Hi Wishuponastar, so sorry to hear you are still in hospital. It is very hard when you have young children as you feel you should be there for them. Hope the ct scan is ok and you get home soon.
Until I started fainting exhaustion was my worst symptom. I did sleep better once the steroids stopped. Sadly I am currently still in hospital and have been here since Wednesday. I am now on oral antibiotics and not introvenious. I am waiting for a CT scan but that may not happen until Monday. It is breaking my heart being away from my three children. They came in yesterday and are coming back today.
I had my 1st EC chemo on Wednesday and sleep has defo been the hardest symptom for me, really fatigued all day and then keep waking at 3.38am or 4.38am every morning and can’t get back to sleep! Please someone tell me it gets easier, no head aches (I feel for you drida! ) but defo have heart palpitations.
Are you taking the steroids and anti sickness tablets? I came home with 3 days worth which finished yesterday and not suffered with sickness yet?
it’s such a strain on our bodies, defo rest if you get the chance and spend the day in bed, it’s time to be selfish and make yourself number one priority xxx
I had my first chemo AC on 10/01. On 11/01 I woke up at 3 am with nausea, head ache, heart beating was racing.
I would like to hear from your ladies when are the sides effects gets better?
I also spent the whole day in bed .
Had my portacath under general anesthetic so been a busy week. They were able to use it next day at chemo as it was nearly 24 hours from insertion. Mine is quite painful currently not helped by being used today I am sure. Spent all day at oncology but feeling okay currently except for being awake at 2:50am 😵
re the trips to the loo whilst " hooked up ".
yes i just got the ok from the chemo nurses, unplugged (whilst having chemo going through) and wheeled myself off for a wee. Obviously i was careful not to catch the tube but it really wasnt a problem.
i used to have migraines and thats why i decided against the cold cap. I did find my chemo regime gave me headaches nearly every day and took regular daily meds.... 1 paracetamol and 1x 400 ibuprofen which worked for me.
my hair was also quite fine, so growing back thicker is terrific 👩🦲 👱👍
if possible take yourself off for s short walk, i did everyday even when i felt grim...
good luck n let me know how things go for you. Mini mad xx 💖💖
Ha! Same here! Early to bed but wide awake since 4! Have taken the dog for a walk and am now having a day with box sets!
I’m really sorry to hear you are unwell and away from home which is where we all want to be at the moment but as my nurse keeps telling me ‘There’s no heroes in chemo!’ Just try to keep calm and know you are in the best place. I’m a primary school teacher and know that children are very resilient- at the moment it’s much harder for you than it is for them - so try not to worry about them. Have a good cry 😢 I find I do it quite a lot now but it does make you feel better. 👍👍🤞🤞
Sorry to hear you're not well , hopefully it wont be too much longer before you are home with the family. Glad the hospital staff are looking after you. Good luck with the rest of your treatment x
Thinking of you Wishuponastar and hope you recover soon but you are in the best place. Hope you have help for your little ones. Keep fighting and smiling
Hi mini mad, thanks for your kind words, it helps to know that someone else had same issues especially re the loo! We’re you able to unplug while the chemo was going in? My nurses were reluctant to do that.
It is good to hear that you didn’t loose all your hair despite not using the cold cap as I used it but found it very uncomfortable and am debating whether to continue! I also get headaches and now have a migraine, so not a good sign. Actually getting thicker hair as a result of loosing is an incentive as mine is quite thin!
i am feeling shaky but determined to get outside for a walk today.
take care and good luck to everyone on this journey
Oh Wishuponastar that sounds horrible. Hope you turn a corner soon. Sounds like you're in the right place. Thinking of you xxx
Sadly I am still in and not leaving any time soon. I am neutropenic, fighting an infection which we do not know from where, and keep fainting. I was out for over 4 minutes during one.
Oh my wishaupon a star, hope you are okay now? It is horrid being away from your children and so hard for them to. I hope you have plenty of support. Keep being strong, hopefully we can all get through this.
Blimey Wishuponastar! Hope you're ok? What happened? Thinking of you and sending lots of get well vibes xx
Helsbels20 am the same, had my chemo yesterday at 9am I was in bed last night at 8pm! Downside I have been up since 4am...😴🥱 struggling with sleeping at moment ( or should say staying asleep!) please if anyone has tips, nothing on my mind as I have tried to have note pad and pen and I just wake! Xx
Oh no wishuponastar! Glad to hear your back at home where you belong! Take it easy and get yourself better!!
I got told days 8-10 are the worst so am not looking forward to next Thursday already! Keep us posted.. xxx
I had a port fitted last Friday and it was fine, I had a small sedative and was a wake all through it. A little sore afterwards but doing normal things, even went for a run, do don’t worry! It was a little sore yesterday being connected to the drip but after that nothing and others who have had a port tell me it a really good thing as they take all your bloods etc from it. Just the waiting ... again.... 🤞😘
I have had a similar journey so far to you starting my chemo tomorrow 6 cycles FEC-T then radiotherapy, herceptin and HRT. Busy waiting for my portacath insertion today its been a busy week so far. I'm 43 and have HER2 positive and hormone positive BC. Hopefully tomorrow will go well
Sorry I have not been posting but I have been admitted to hospital. All very frightening and I hate being away from my children. I only made 8 days.. I thought I was doing so well.
i had my first chemo session today - have been dreading it but it was actually fine! Did the cold cap which also wasn’t as bad as I expected and now just feeling a little tired so fingers crossed for the next few days. It is really reassuring to hear there are others going through the same things and so many positive comments. I’m 47 and have her2 positive. I had a lumpectomy in November so was actually really pleased to get going today as the waiting is the worse. Good luck to anyone about to under go treatment - I really think all the uncertainty and waiting is the hardest bit (but then again I’m only on day one of chemo!!) 👍🤞
Thanks for the reply and for the tip , I'll try the salt water rinse.
I've just purchased some manuka honey today , not a massive fan but prepared to try anything I can.
Hope your treatment / recovery is going well.
I use a teaspoon- and starting out you could start with half a teaspoon and work up to the teaspoon. I do a quick salt water rinse and then I enjoy a teaspoon of Manuka honey which apparently also has healing properties. According to others, your teeth will benefit from the oil pilling too!
All the best!
After reading a post on here I thought I'd give oil pulling a go before starting chemo. Just to get my mouth in the best possible bacteria free condition as possible. Nothing ventured nothing gained.
I watched a few you tube videos on what to use and how to do it. Some say a tablespoon some say teaspoon. Well all i can say is a heaped teaspoon was way too much I ended up gagging and swallowing some . Quite funny looking back. Hope it doesnt cause any side effect but I suppose time will tell. I'd definitely say a level teaspoon is enough to start the process.
I used it with 3 drops of clove oil as stated in the you tube video.
Mouth feels clean but whether it works is another matter when I start having chemo. My node clearance op has now been brought forward to next week. Which I'm thankful for because I find the waiting around the worst part. As anyone else tried the oil pulling ? What was your experience?