Im about to start the treatment at the beginning of September. I have to say the reality of it is really starting to get to me now. For the last couple of months through surgery - Chemo has just been a word and now it feels very real and i’m very scared.
I’m trying to prep myself for things as best i can, but seem to be winding myself up more. I’ve not met the chemo nurses yet so still a bit in the dark.
Any advice re the hair loss, i have shoulder length hair right now - is it best to cut it all of before hand?? How long do i get with it after first treatment? What are the best websites to order scarfs the ones i’ve seen have not jumped out at me.
Has anyone actually cried through the whole process as i’d hate to be the first…
Hi Sniffer.
Your feelings are absolutely normal, I was fine up until about a week before starting chemo… then just lost it - I think it was the unknown; would I be sick, could I look after my children, could I continue to work…
I cried when I went for my bloods, then as I went for my first session. But as soon as the process started, and it was no where near as scary as I thought I was fine.
So far I have had 4 FEC, 2 TAX, 1 Abraxane with another 2 to go. I have been very lucky, still work, no real change to home life. That said, I do listen to my body, if I am tired I rest, if I cant face going to the office I work from home…
The unknown is always scarier than reality!
Re hair, I had long blonde hair cut into a short bob a week or so before chemo, then as it started to come out, took control and shaved it off. I havent used scarfs, but I am sure someone will point you in the right direction.
Good luck, and its good to cry sometimes
Marguerite
Hi Sniffer
I found the worst bit is waiting for treatment to start! Its the not knowing what its going to do to you!
I had my hair cut shorter before chemo to try and get used to it. My hair started to fall out just before second chemo I got my OH to shave hair in the end as it was getting everywhere and I found this upsetting. Felt alot better once shaved wish I had done it when it started to fall out!
I went into accessorize where a lovely lady helped me with scarfs and hats! I have ended up wearing hats as dont like the scarf look! I havent got on with wig as find it too hot and it arrived after hair loss and family perferred bald look!
Cry when you want to cry! I have tried too hard to hold the tears back and only suffer in the end.
I have just finished my last chemo and as often used on this site I have have found it ‘doable’ its not easy but if you take care and listen to your body you can do it!
Take care x x
I agree with tedoris the worst bit is the fear of the unknown. But i have to say this site really helps - go through the threads and you will find everyone was in the same boat as they started treatment. There is a great hints and tips for chemo. Will try and find it and link it to this thread. After the first one you will know what days are good days and what days you need to rest. I found this reassuring so i could plan for things on the next dose. It didn’t always work but i wanted to keep as “normal” as possible throughout it all and going out with mates was my way of doing that.
I have to say chemo was my worst fear when i had my initial diagnosis back in November. I never wanted it. But it is doable. They take such good care of you at the Unit and all the nurses are absolutely wonderful and very very supportive. After 6 months of E-CMF and 16 doses of radiotherapy here i am today on my last dose of radiotherapy. It hasn’t been an easy ride,but equally it never lived up to my fears either, just do what your body tells you to if you can.
I went for the cold cap in an attempt to save my hair. I had it cut shorter to try and save a bit of stress on my hair before the first chemo. Unfortunately it didn’t work for me and after the second chemo it started to fall out big time. I have a lovely selection of bandana’s. The NHS give you an allowance towards a wig. I went with the lady who visited the hospital, really because i didn;t know any different. In all honesty i wish i would have gone to a specialist wig shop and paid abit extra for a better wig, but it did its job and wasn’t too wiggy.
I am going to start about the same time with you so we can compare notes I am off on holiday before i come back and face chemo.
this is to wish us all the best.
Ola
I just had my first session on monday! I have started on FEC and then going on to Taxotere. I was crapping myself about it - fear of the unknown, but it wasn’t as bad as I thought it may be.
I had a lovely nurse that made the whole thing so much bareable and then it was all done! It didn’t hurt, maybe a little bit uncomfortable because of the needle in your hand, but that was all really. One of the drugs the ‘E’ one gives some funny feelings as it goes into your body, but it doesn’t hurt at all. The nurse will tell you what to expect before she administers it.
I was tired after it, but I think that was as much to do with not sleeping very well the night before. I also tried the cold cap! Not sure if it will work, but not got anything to lose so will see how long I keep my hair for and report back!
So, since monday, well, not much nausea - have been taking all the drugs they gave me which seem to work. Had a wierd hot flush on tuesday morning, but it faded by lunch time and then I think I’ve been ok. Oh, I’m not sleeping which is starting to get to me a little bit cos without my sleep I can’t stop crying!
That reminds me, can you get sleeping tablets prescribed by the GP when you’re on chemo? And water retention tablets? My boobs are so painful cos my period is due - just to add to everything else!!!
I hope some of this helps you girls about to start your chemo. I felt just like you and once the first one is done, it feels much more manageable.
Hi Sniffer
I’m also starting chemo (FEC) next Thursday so will let you know how it is.
Will you get to meet a chemo nurse beforehand? I had a long session at the hospital with one yesterday and found it really helpful. He also took me to see the chemo unit, which I would recommend if possible, because it was reassuring - people were sitting around talking, reading, doing their knitting, and while it wasn’t exactly a party it seemed like people were behaving quite normally given the circumstances - nobody freaking out!
I’m going to give the cold cap a go though it seems to be a bit hit and miss whether it works. I’ve been advised that if I go for a wig it’s a good idea to get the person who usually does your hair to style it so it looks as much like your normal hair as possible. Think I’d rather go for something completely different though, like bright red or purple!
Crying is absolutely OK - it’s good for you. I feel like I’ve got a flood of tears but they won’t come out at the moment.
I’m sure the waiting it the worst part - fear of the unknown and all that. I was absolutely terrified of having the op but that wasn’t as bad as I expected.
I’ll be thinking of you.
Amanda
Firstly sorry that you have to become part of this community but secondly welcome to this totally amazing community full of amazing ladies. Waiting for the chemo to start I think is one of the worst bits. The unknown is just horrendous. I was totally crapping myself before my first treatment. I don’t think the word ‘chemo’ helps. It sounds so cold and like some form of torture. I barely slept the few days before my treatment began - I just imagined every horror scene! When I got to the unit I burst into tears and just sobbed like a child. Thankfully the nurses and my oncologist were just so incredible. They became my mum for a bit until I calmed down. My fiance was with me too. So between them they dried my tears. They are very used to all sorts of emotions so when you get there if you need to cry then just cry. I would highly recommend taking someone with you. My fiance was brilliant - he provided the light relief and a reassuring hand to hold. I had my pre-treatment chat with the nurse and to be honest I can’t remember a single thing she said cuz all I wanted to do was get on with it. Before I knew it I was taking a handful of anti sickness drugs and being fitted for the cold cap! The nurses were so lovely and so chatty that before I knew it the first treatment was over! Everyones treatment is different but i was connected to a bag of normal saline and then the nurse injected my picc with three big syringes full of rocket fuel I call it. If you are having FEC the epirubicin (don’t ask me how to spell iT!!) or the E of the FEC is red and will make you pee red for about 24 hours!
If you are trying the cold cap, take a good book and a warm jumper. After a few hours of a frozen head you feel it all over. I end up wrapped in blankets and get given a warming pad! The centre I go to is tiny - only three chairs. You will find that you will chat, very freely, to people that you wouldn’t normally asscociate with. I find the chatting is a great comfort. I look at it like a social event now! Last week I barely read my book for all the chatting!
As for the hair, well it’s a difficult one to predict. The cold cap does work for some, but I think you should give it a go - at least you can say you tried it. I had very long thick blonde locks and for the first two weeks after my first treatment they stayed. Then day 15 - WHAM! It fell out in ridiculous amounts. A very distressing evening. I now have my hair cut very short - which I have to say that I do really like. I had the cap again last week but my hair is still falling. It looks ok at the moment but is getting very thin and my scalp is starting to get dry. I have always worn scarves and hats so for me is not so different. I keep holding on and hoping that my hair will stop falling - but I have a feeling I’ll be getting a GI Jane very soon!! I have a wig on order which should be here this weekend. Losing your hair is just awful but you have to look on the positive side - think of all the fun you can have with different wigs! plus its takes half the time in the shower and you save on leccy cuz you have no need for the hairdryer!!! I must admit though I am getting sick of hoovering and sweeping up hair! Part of me just wants it all to disappear - but i don’t have the balls to shave it yet.
As for after treatment - take all the anti sickness drugs regularly. You may need to stock up on some bowel help! It depends on what drugs you are given. My bowels are suffering terribly! Luckily I have not had any sickness - phew! Bit of joint pain, weird sleeping patterns and extreme tiredness. Do listen to your body - if you need to rest then do so, if you crave something then have it! I have a big craving for tea - just can’t get enough! also for vingary things - which I did love before but now I want them all the time! Weird!
Anyway I’ll stop going on now! I wish you all the best with your treatment. Do stay in touch on here - you will find these forums just the best, be good to hear how you get on. Take care xxx
Sorry you’re having to go thru this - it is doable as has been said, and in th escale of things doesn’t last too long (altho it doesn’t seem like that at the time!). Best advice I was given as it’s so unpredictable how you’ll feel and when was ‘plan nothing expect anything’.
I wasn’t into scarves either - try ebay seller albyn7 in Indonesia(?) - she does some lovely beaded hats which I really liked.
Hello sniffer I had my 6th chemo in June and am now on Tamoxifen tablets and Herceptin every three weeks. It is horrible at the beginning but you will soon get in to a routine. Here are my tips for what they are worth:-
1.Take all the anti sickness they offer. If you are sick after the 1st chemo ask for the anti sickness next time to be intra veinous before chemo as oppossed to tablets. Push for a drug called Emend to be taken in tablet form with the other anti sickness drugs ( also called Aprepitant) as this was not given to me until I had suffered 4 chemos and horrible sickness and intense nausea. This drug stopped it completely but my Onc had to fight to get it.
2.Don’t eat before or after chemo, again because of sickness.
3.Have sleeping tablets prescribed for you to take on the first few nights. I found this really got me over the worst of it.
Drink lots of water before during and after.
Cry whenever you need to.
Have Omeprazole prescribed to take each morning if you get acid reflux.
Have an anti constipation mixture prescribed and use it the minute you realise you have not been to the toilet as normal. Don’t wait for it to build up as it is very painful.
Put yourself first especially during the first five days after treatment and don’t take on too many commitments. Learn to say no.
Cut your hair short before second chemo and shave head immediately after second. It is very liberating to be without hair and it takes no time at all to get ready to go out. Buy lots of different scarves ( charity shops are good) and get your wig from the NHS and have it styled to suit you.
Take a warm jumper to chemo. I got very cold and shivery with the cold drugs going into me and the stress of it all.
Hope all this helps. Good luck. I hope you sail through it. It wasn’t as bad as I feared and I must admit I was terrified at the beginning.
thank you for your tips i go for my first next monday 23rd at 3.30,so feeling scared about it all,decied not to go for the cold cap,i hate being cold and figure im gona lose my hair anyway as there no guarantee it wont fall out,got a nice wig ready.Will take a fleece with me.the nurse told me to eat normaly before i go to prevent sickness? what do you all do then,i really want to keep the sickness controlled as much as poss!.crikey its like walking into the unknown! my biggest fear is … does it hurt when it goes into your veins,what does it do to your mind?. we are going away for a few days this weekend so hope to be able to relax a bit more i feel wound up like a spring today x hope you all have a good weekend. lynne
Just wanted to add to my post the other day that i’m finding this thread really helpful as I’m definitely getting more nervous as the date for my first one approaches (Thurs 26th). Would really like to compare notes with those who are starting soon, and the advice from those who have gone through it is much appreciated. Thankyou.
Amanda xx
It does not hurt at all when the drugs go into your veins. Have you had a picc line put in? If not then the cannula the nurses put in doesn’t hurt - just scratches. YOu might feel a cool sensation when the drugs go in but thats it. As for your mind - well nothing inititally. It’s the following days! Chemo brain I call it. I find I need to write alot more notes than usual and have a scatty feeling, bit like that clumsy pre-menstrual feeling you get!! Also the crazy tiredness does weird things to your brain - I have to say that my dreams have become very interesting!! Anyway good luck for your first treatment. Let us know how you get on. Have a lovely weekend - hope the sun shines for you xxx
Hi Lynne
I had my first chemo last Wednesday and actually ate during the administration of the drugs! I’d been out dropping the kids off in the morning and hadn’t managed lunch, so the nurse arranged some food for me.
In fact I have found that food is what staves off the sickness, what the drugs can’t keep at bay.
Now I am day 4 and I have finished the drugs they gave me, all I needed was a piece of toast to get rid of the nausea I woke up with this morning.
I am sure everybody is different, go with what you feel like. I can’t manage tea or anything with milk in but I quite like herbal tea so have been drinking that.
Good luck and hope you find what is right for you
X
Rusty
Thought i’d join is as having my first FEC tommorrow. Going to hospital at 10am…reading through the post is great advice and tips.And the same as Amanda it will be good to compare notes.
Hi Emma
I hope it goes ok for you tomorrow. Will be thinking of you. This is a great place to come and talk about how you’re feeling, ask for advise about your treatment or SE’s and just receive lots of support from lots of people going through the same as you and really knowing how you are feeling.
I’m sure you will find it’s not as bad as you probably think it will be. I can’t say how you will be re: side effects as we are all different and all have different experiences of them.
Stay positive.
I’m due to start my chemo on Thursday but today I have had a really bad sore throat and feel like I’m getting a cold. I’m really worried that this will delay the start. Any advice?
Starting chemo on Wed (25). I have to be at the hospital for 8.30am for heart tests in the morning, chemo is scheduled for 12.00. Haven’t been told whether to eat or not so not sure what to do. I have a phobia about being sick and this is what is scaring me the most at the minute. I’d really appreciate any advice - thanks!