I've just had the best night's sleep I've had in ages, after the relief of getting my hair off yesterday.
Pre-chemo checks and blood test at 10am today. I'm so ready for my second dose on wednesday, so i hope there are no hitches.
Good luck with yours, Petal88.
My hair started falling out slowly on Friday, but by Sunday morning it was coming out in handfuls, which was ridiculous in the shower, as it was never-ending! Also, the sleep cap that I had slept in over Saturday night was full of hair, and my scalp was on fire. It comes on so quickly. When you get to that stage, believe all of us that have done it already. Get it shaved off! x
I'm feeling back to my normal positive self today. When I heard the word "incurable", I thought "terminal", but Sarah's input above made me realise that was not the case.
Inspired by other members of this group, as my hair was falling out in handfuls this morning, my husband has just shaved it off. So much better!
We are going across to the pub this afternoon, so I am wearing a bandana. Now I want my wig - just need to wait until Monday the 13th.
Click my name here to send me a message, then tell me your name as it appears on Facebook and describe your profile photo. Then I will find you x
Thanks, yes that has helped, Sarah.
Day 18 post FEC 1 and my hair is coming out big time this morning. Just showered and it bunged up the plug hole!
Now wearing a bandana in the hope of preventing it from shedding all round the house.
I pray for every member of this group each day.
I'm sorry about last night's post. I was in a bad place. I feel better this morning, but that news has really knocked my confidence.
Petal88, I think I should clarify what I was told today.
There are several lymph nodes that are larger than usual in my groin and the supposedly clear armpit. They will monitor them with CT scans, but if they turn out to have cancer in them, it isn't curable.
I'm still thinking about all the months that my lump sat in my breast unchecked, and I know that it is very possible that it has already spread throughout my lymphatic system, as it has had plenty of time to do so.
I'll try to remain as positive as possible regarding the treatment, but I now feel like a noose is hanging round my neck.
Oh, and Bean14, and Sarahmummy, all latecomers are wholeheartedly welcomed into our little clan.
If either of you are on Facebook, send me a pm with a link to your page, and I'll add you into our private group there (you won't be able to find it unless I add you)
had my second chemo today and decided not to use the cold cap. I don't want to worry about my hair, It will come back again. I'm going to get a nice wig and get it styled 🙂
Thanks everyone for your good wishes and sharing your experiences.
everyday we are getting better 🙂
My confidence has been knocked today.When I saw my oncologist this morning, she gave me the results of my CT scan and bone scan.
The good news is that my bones and organs are all clear.
Unfortunately there is an element of doubt about my lymphatic system. There are several lymph nodes around my body which are larger than normal. Therefore I will be having regular CT scans to monitor them.
She told me not to worry about it....not as easy as it sounds.
I'd like to add my very best wishes for 2014 to you all. Also to echo what has been said about looking after ourselves and report any changes sooner rather than later!
I am having my 2nd epirubicin ( the E part of E-CMF) tomorrow providing today's blood test is ok. As I was vomiting on day 5 of my 1st treatment after 3 days of anti sickness meds my oncologist is giving me 5 days meds this time so hopefully I will be ok. Most distressing at the moment is my hair as it's falling out fast now, all over the keyboard as I type! We know it is coming but when it happens it is very upsetting. I didn't like the idea of the cold cap, although no one mentioned it to me anyway. The silk pillowcase sounds lovely, I think I'd like that. I'm wearing a light hat at night but it sticks to my pillow and wakes me up! Maybe I'll take the plunge soon and get rid of the rest of my hair but although I have my wig on hand it hasn't been fitted properly yet and needs trimming. I'm hoping to go after my treatment tomorrow if the salon is open as it has been closed for new year.
Starting to drink lots again in preparation. Early start tomorrow leave home at 8 for 9am treatment. I don't expect I'll sleep again tonight. Even though I've done it before I still feel so anxious. So many of you are so inspiring and I'm telling myself 'I can do this!'
I used a silk pillowcase yesterday and it helped. Yesterday my hair was very itchy and sore but today is much better.
thanks everyone for your support and encouragement. thinking of you all. Feel you’re part of my family
lots of love 🙂
I'd like to extend the same best wishes. We can all do this, and we will do it together.
My 2nd FEC dose is next wednesday. I'm ready for it. I have my energy and appetite back. The only side effects I currently have are mouth ulcers and a stye (not sure, but my eyelid is very swollen) but neither are bothering me enough to worry too much, just irritating. Hair is yet to start shedding, but I'm ready for that.
I'm keen to have the next dose now and keep attacking my cancer.
So let's all dive into 2014 together, ready to accept any treatment our oncologists say that we need, so that we can all sit here in a year's time, cancer-free, to welcome in 2015. x
Just wanted to wish you all the very best for the coming year, and to thank you for your support and advice.
Well done to those of you with number 2 under your belts already, hope things are a little easier. Take it a day at a time.
Good luck to everyone else still recovering from number 1 and getting ready for the next. We can do it.
Love and warm hugs to you all
Sure I'm going to use the cold cap again. I heard it works better for European people. I had very thick hair, maybe that's why it didn't work.
Thanks for your support everyone - now at home phew. Seeing oncologist Thursday so will discuss next steps ahead with him.
Wishing you all a Happy and Healthy 2014.
saw my oncologist today, he said the lump is a bit smaller! yayyyyyyyyyyyy 🙂
my life was a bit challenging during the last few months but I'm looking forward to 2015!!!
Happy New Year everyone 🙂
Wishing you all a happy and most inportantly a Healthy new year,we can all get through this,
Bas sorry you ended up in hosp hope you get home today, thanks for the info we should all be more vigilant.
fec 2 day five and feeling really tired, prob cause steroids have kept me awake most of the night.
I had my first fec(ing) treatment on 12th Dec. Have felt fine all the time. A bit hot on sunday 22nd but had been snuggled under duvet in the afternoon. Noticed pale pink mark near scar on Monday and went to gp on Tuesday coz it hadn't gone - was given antibiotics. Notified my BCN and chemo ward. Told if temp went up to go to A&E immediately even though on antibiotics. Xmas day no temp still felt really well but pink mark looking bigger - we went to A&E. Neutrophils .85 on admittance dropped to 0.2 before starting to pick up - sixth night in hosp isolation room as neutrophils not quite at 1 but hopefully will be today on next blood test and I can go home. (am starting to get cabin fever now).
Just wanted to share some of the lessons we've learnt over the last few days:
Go to chemo ward or A&E at first sign of trouble - sore throat, pink marks, temp above 37.5
Insist A&E follow neutropenic guidelines bloods and iv antibiotic within the hour, not everyone has had the neutopenic training and you can look and feel well like I did, but still need immediate attention.
Ensure iv antibiotics are administered at the prescribed intervals (every six hours even through the night)
Drink plenty, the antibiotics are pretty harsh on the system.
Take your already prepared hosp bag with you in case you have to stay. (thank you chemo tips).
Take your chemo caddy with all those little essentials (thanks again to chemo tips).
Let your BCN and oncology team know you've been admitted (BCN been wonderful for emotional and practical support)
On the positive side as predicted my hair started to shed on day 18 - glad it's contained in this little room and not all over our house lol. Incidentally, I had been advised to get my hair cut short by various people but the hairdresser who fitted my wig said leave it longer and tie it back as this helps contain the shedding hair - she was right.
So glad for the NHS service and acute medical ward team where I have been looked after by lots of lovely people for the last six days. But remember your health is in your hands too, and as one of the oncologists said, you may sometimes need to fight your corner to get the treatment as prescribed.
Thinking of all you December Angels, keep well , we can do this. Luv and hugs Jxx
It's tough isn't it. I've not decided yet if I'll carry on with the cap, probably won't decide until Friday. You might not lose much more, that might be it. Hope it goes ok for you on Thursday 🙂 x
Washed my hair 🙂
Thank you Joanne and SJB for reply. My hair felt itchy and sore for a few days, that's why I was scared to wash it. I lost a lot and decided to stop touching it. I'm not happy but I'm not going to give up
No one has mentioned a community cancer nurse to me - that sounds like a great person to talk to in the privacy of your home!
I didn't know there could be a physical reason for the shortness of breath either, so once again I've learned something through this brilliant forum.
Any time you need reassurance, just post here. None of us are far away.
Setareh, if your hair is likely to fall out, it will become itchy and sore first. It doesn't just drop out in one go either, so you are perfectly safe to wash it. Go on, you'll feel so much better with clean hair. Oh yes, and I use baby shampoo as that is the mildest you can get. x
Hi setarah, I had the cold cap and my second one is due on 3rd. I've been washing my hair regularly, have only just noticed today that it is a little thinner but haven't lost any big sections anywhere. Am losing hair in other places now. I would just give it a gentle wash with a mild shampoo and a lot of conditioner. My hair does have a mind of its own now, and the scalp feels a bit odd. If it's going to go it will go whether you wash it or not, and you will probably want to know before your next one whether it is worth carrying on with.
Good luck, let me know how you get in 🙂 x
Good luck tomorrow, Kaz. You mentioned a routine flush - was that a PICC line flush? I get that done by a district nurse at home. The injections they give to boost white blood cells can also be done by her if required. I don't think I could self-inject, but luckily my friend does it for me, as she is a nurse.
Hi ladies, I need to wash my hair but I'm worried to lose my hair 🙂 I used the cold cap...will know if it worked when I washed my hair.
I think I need an encouraging word
Hi Kaz, hope it goes well tomorrow. I experienced the same problem with one of the receptionist and talked to my doctor about it. He promised that it will never happen again. Thinking of you tomorrow. Water is great idea. I love quality street too, I'm going to have some now 😉 me too I wish it was 2015