Eyebrows and lashes fine. Underarm hair all gone.....arm hair no change.....lady garden thinned. Told may not lose eyebrows and lashes and they may just thin....lets hope so!
Have you lost eyebrows and eye lashes as well or just hair? As you say it will grow back and hopefully there will be enough by christmas not to have a cold head !! 😎 x Cal B
I did sniff about it when it full on started to go, but then got over it quickly. You become very resilient along the way, and now I think..,,ohhh should be back for xmas etc. once it starts it is so annoying that it is vety easy to clipper!
Thanks - I guess that could mean the middle of this week for me then!! I have it fairly short now and will get it shaved once it starts falling out. I hope second treatment goes to plan - just think that will be third done! sending bestwishes. Cal B
Few hairs and minor prickles sensation day 17 morning, full on shed started day after. my advice is clipper asap when it starts as mine was everywhere even though in pixie crop already......but do have very thick hair. Good luck too Geri xx
Hi Good luck for tomorrow. At what time did you hair start falling out. i have had an itchy head but no other signs. I am just starting week 3 of 1st cycle. x Cal B
Good Luck for tomorrow Flower .. I'm also round 2 tomorrow and feeling alot more prepared this time. Hope all goes well.
Hello girls.....well I am in for round 2 tomorrow. not worried this time as effects will be same Dr confirmed. Hair now hardly there....less than a quarter of normal and bald patches. First day of big shed was upsetting and on day after chopped it even shorter, and day after clippered it. It has got everywhere. I wear a softie hat from suburban turban (£15) when wig off and in bed. It is very comfy but I seem to not have it on in morning which I think is probably me as it fits well. I am feeling a lot happier in myself which is good. Have had a really lovely few days doing nice things in the sun. Xx
I agree you are rigth, thank you for your thoughts.
If you order this beanie, which I can recommend, it needs some time to be delivered and if you cut the label, its very soft. xxx
Hi Paprika, glad you are feeling better today. I think we have all had up and down days but I think that is natural with what our bodies are enduring. I think we just have to listen to our bodies and do as much or as little as we feel able. I think this forum is such a help and makes us realise we are not alone. Your cap is lovely think I will get myself one, speak soon love Joanne xx
Hi Sue, so glad you are feeling back to pre chemo fitness! That's great news, long may it continue. I've tried to click on the link you have left but it says page not found will ask my son can he assist later when he comes home. Enjoy your day love Joanne xx
Glad to hear you all do not too bad.
Sorry Sue for your painful experience, good its sorted, thanks for your pm I will reply soon.
I felt quit cold and down last night, but lots of ginger lemon tea made me feel better. Today I feel like before chemo, had a 30 min walk, hope it stays.
Got my beanie cap from amazon, will keep my head warm at night.
hugs for all xxx
Thank you for your kind comments. Yes, the pain has gone and had a wonderful day at the Land Rover Nationals down here in Horam, East Sussex. I felt as fit and well, as I did before chemo started!
Just found this article - and thought it most interesting.
I was trying to figure out, that once off the steroids, why getting a good nights rest is so challenging.
Personally think it may have to do with what is written in this article, although I am by no means an expert. Considering that our diagnosis and the period following is traumatic and that our body instinctively fights against the things it does not like...... http://www.insomnia-free.com/causes-of-insomnia-hyperarousal.html - Hope I am not being to contraversial, lol.
No flowing hippy hair here xxx
Hi Sarah, the movicol has worked thankyou so I will take some when I have my next chemotherapy on the 9th to hopefully avoid the same thing happening again. The dreams sound awful! I hope you get some sleep tonight take care Joanne xx
Hi Sue, glad you got the all clear. As you say a mystery as to what's caused the pain and I hope it's subsided now. You make some good points about making sure we go to the a and e associated with our breast care unit. I find it worrying that a lot of medical staff are not aware of the protocol for dealing with chemotherapy patients. Hopefully you will have no further need for attending now let's just hope everything runs smoothly now for you. Hope you get a good nights rest tonight, take care Joanne xxx
Sorry for the long post - I hope it may be of help to some....My recent 'brush' with NHS A&E has not been too boring, lol. However I would like to share my thoughts and further experience last night with you.
It may highlight a route for all of you to try and make as sure as you can, that you get the right treatment (personallly and emotionally) when presenting at A&E and feeling more confident to do so.
I live on my own, very remotely and do not have anyone to call on, should I feel unwell. So the Chemo Helpline has been an absolute godsent.
The A&E assigned to my address is run by a different NHS Trust to the one which is where the treatment team responsible for me, is based. Living in East Sussex, but close to the border to West Sussex - the assigned A&E is 15 miles away and the A&E of the hospital, where I had my operation and all of my records are held - is 17 miles away.
So when calling 999 on the first day of my 'challenge' I was taken to the assigned A&E, despite requesting to be taken to the A&E, which would have been better able to work with my case. I understand why - I am not annoyed at it.
If you are taken or go to the A&E of the hospital, which is also responsible for your treatment - you may not have to face these challenges.
Should you be taken to an A&E, which is not part of the hospital, which not is associated with your Breast Care Centre and where you have had your operation and/or tests - there are guidelines to which A&E should adhere to with regards to chemo patients. It may be wise for you tell them, when checking in - and tell everyone, absolutely everyone, who treats you, that you are a chemo patient. Take your 'red card' with you and show it to them, as it has your hospital reference on it, which should encourage them to look up your records on their system easily.
Unfortunately in the first instance A&E staff was not well trained, if at all - in awareness of protocols for chemo patients. Although being in a cubicle from the beginning - I was treated like any other patient.
Not that I am a VIP, lol - but if it can be avoided to have yet another cannula stuffed into your dissappearing veins - it should be listened to. They did not - so now more pain and another massive bruise! And only for taking bloods....... Refusing pain killers was also frowned upon - but I wanted, despite my distress - listen to my body - for as long as I could, to try and understand why it was putting me through this. I felt I was on a conveyor belt - standard practices applied - not matter, whether relevant or not, needed or not. Hence, after 4 hours discharged myself, as the pain had improved - with the comment that I would report in on the chemo helpline.
So I did - they rang me back within the hour with most of the relevant results, which gave me peace of mind that nothing drastic would happen.
The pain came back in the evening, but as not in too much distress (yet) I chose a different route - and, if at all possible will take it again - should I ever need to again.
Again I called the chemo helpline, was advised to attend A&E. Due to the experience previously, I asked whether I could go to my preferred A&E. I could. They even asked whether they should call ahead and let my chosen A&E know that I was on my way. And they did.
So I drove myself up there, checked myself in at reception telling them that I was expected. Although the receptionist did not know, she relayed the message and within 10 minutes a nurse came out and took me to a separate treatment room. I retold my story of the other A&E and they said they would only do things, which were absolutely necessary to make sure I was ok. I was offered pain killers - pain was geting worse again - but told me it was up to me to take them - and they totally understood, why I wanted to wait until it was really necessary.
Yes, it took 90 minutes before a doctor attended - but that is fine! - It was a Saturday night after all. But the nurses popped their head around the corner on a regular basis, ensuring I was ok.
The doctor took her time, understood exactly what my challenges were and told me that she would not only look at my bloods, etc from the A&E visit at 5 in the morning, but also pull together my whole file to review, to see whether there was anything at all, which could be causing this.
And yes - I had to have my bloods done again - but this time....they found a vein higher up in my arm, did not suff a cannula into me and were very gentle about it.
A further hour down the line the doctor came back - having completely reviewed ALL of my information and told me that there was absolutely nothing, nothing at all, which could have caused these episodes.
It actually is a fantastic feeling, when a completely unrelated doctor tells you that your CT scan is as clean as a whistle, lol.
A further 30 minutes later the final results from the in depth test were back - all was completely normal.
So these episodes of pain will remain a mystery for the time being. But I know I am ok!
I was treated with knowledge and great care.
So - if you are worried - and you feel you want to or need to attend A&E - calling the chemo helpline and getting them to call ahead - and attending the A&E of the Hopital attached to your Breast Care Unit - seems to be the best way to get caring and the right treatment. It certainly worked for me.
Hi Sue, what a nightmare! But you sound like you took control of the situation. I'm glad you are feeling better now and what great news that your bloods have already recovered enough! I have just ordered my bracelet off Amazon scary to think medical staff aren't aware most of the time! I had to tell my nurse when I had my chemo you somehow just expect them to know. I hope you get some decent sleep tonight! Take care Joanne xxx
Thanks Sarah, I will try the movicol liquid I think that would be much more palatable. I am sleeping but still everything I do seems to take it out of me which I wasn't expecting not on the first cycle anyway! Anyway hopefully now we are all on the up for a while speak soon love Joanne xx
that looks really nic!
I love the idea of a charm bracelet and adding a medic alert one!
What a night and early morning!
Started to have backpain at 11pm, but thought it was just a twinge, having spent too much time on the sofa. Went to bed - not comfortable, but as I had a busy,active day fell asleep. And at 4am got woken by an almighty thunderstorm and excruciating pain in my back, which I could not relieve at all. It came in waves and got worse, so felt it prudent to get into my car to go to A&E, after haven taken some Ibuprofen.
I made it to my car in the worst rain and hailstorm for a long time, managed to open unlock the iron gate at the bottom of the drive. I cannot remember how I got to the carpark of our local pub 500 yrds down the road, I know it was in my car....that is all. I rang the ambulance lying across the frontseats of my car with the mobile signal going in and out. 15 minutes of screaming my head off later I was in safe hands.
Oh, don't you like a little drama?!
By now I had started to figure out, that it might be my kidneys, especially as the E in the FEC can cause some issues there. I feared nephrotoxicity "Nephrotoxicity (from Greek: nephros, "kidney") is a poisonous effect of some substances, both toxic chemicals and medication, on the kidneys. There are various forms of toxicity." Very handsome paramedics, I must say, lol.
I was so glad I had my new medical ID bracelet!
They tried to take BP on the 'no,no' arm - saw the bracelet - and immediately switched. Phew! Proves a point though, lol.
No temperature, BP fine, feeling fine - but in more pain than I had ever been.
In hospital bloods and samples taken - and then wait - and wait - and wait. They offered pain relief, which I refused, as I wanted to judge whether it was getting better or worse. Not that anyone suggested it, but I drank and drank - and drank. The pain improved enough for me to discharge myself after 4 hours without having seen the doctor, explaining I would call the Chemo helpline for advice and whether they could please share the results of the tests. So got myself into a taxi and back to my car and home
Phone calls made, results shared - and again the chemo helpline was absolutely brilliant!
The good news is it was not kidney toxicity - everyone, including me - is a bit baffled, but let see what other test results will show and how it goes over the next few days. My bloods are already good enough for the next dose of chemo! And I am not due until the 9th, lol. But it certainly gives me much confidence that my body is rebuilding very well.
Now trying to drink the English Channel dry!
So lessons learnt
Medical ID bracelet was a worthwhile investment
A&E is not too clued up on understanding challenges of chemo patients (I checked my own temperature)
Drink a MINIMUM of 2 litres of water a day
And NEVER lose your sense of humour, even if it is 'gallows' humour. "Gallows humor has been described as a witticism in response to a hopeless situation."
I feel energetic, and well, despite a remaining dull ache. But that is so very easy to manage at the moment.
Let the weekend begin!
Bottyboo hopefully youre ok now, im home on antibiotics. ...feeling better just for being home! Xx
Hi Bottyboo, sorry to hear you are feeling grim, I have had a couple of bad days this week, mainly nausea, chronic constipation apparently due to the ondesatron my breast care nurse said today, she has told me to ask for cyclizine and to take Senna on my next chemo day but I have never taken it and would be worried it would give me cramps and problems whilst at the hospital! I have started eating the last couple of days but still not been to the loo so she says I should take some Senna now but going to see how tomorrow goes! Are you having treatment at The Christie? Only you seem to be the only one on the same regime as me. I'm surprised how fatigued I am because I had my chemo 8 days ago and thought my energy levels would be picking up! It worries me that if I'm this tired on cycle 1 what will I be like on next one! Hope you are starting to pick up now, take care xxx
That's the nicest bracelet of that type I've seen Sue - thanks for posting the link.
Best wishes to all the May 2016 chemo team from an October 2015 "veteran." You will all get there. xx
I found it on
and it is engraved on the inside
No BP/IV RT Arm
I am so glad my oncologist is a young Spanish lady, lol.
Although my risk of lymphoedema is relatively low (only 3 nodes removed) I rather err on the side of caution.l shall get back to horse riding, once I have recovered from treatment, am likely to go skiing again, - and of course I drive nearly every day. The thought of me being unconcious for some reason or another and the medics merrily using my righ arm doing blood pressure, IV drips, injections fills me with apprehension. So I got myself this!
A medica ID bracelet! I was surprised how pretty they are in nowadays.
Hi Tina, good you feel better! I don't know if it would help you, if I cant sleep, I say ok, switch on the light and write all things down out of my head, or draw cartoons...that makes me tired and my head is empty ready to fall asleep. x
Hi Sue, I was smiling about the link you send. It's funny, true and interesting...the different culture. Sometimes I feel more on the safe way to talk to polish/italien/spanish people, they also use more the direct way, you can't do things wrong.
Good to hear you feel better after your down day. I understand your thoughts and totally agree. I have similar experience, it made me angry and sad but at least wiser.
By the way I can write private messages now, you were right, you have to be a member for some time. x
Glad you are feeling a bit better Tina. Yes it has been interesting re peoples reactions.....have had a relative hear my news and then not heard a thing from them since pre surgery......neighbour of 20 years also distanced herself after hearing. Some though have stepped up well.
I agree it is not easy to know the right thing to say/do but a text takes seconds.....the good thing is we know who are true friends now don't we. Hope everyone is doing ok. I am shedding like a dog. It is really quite dramatic one it starts. Round 2 on tuesday x
Good morning ladies,
Day 9 after first chemo - day 7 was my low point (physically and mentally) on this cycle, so far - and I hope it stays that way. Knowing now that Neutropenia can strike a lot of us, some more so than others - at least explained to me, why some of the things happened, that did. So I feel a little more comfortable, if that is the right word, with it all and am more prepared for the next cycle, when it comes around.
I am a little annoyed, that my hair has been growing, lol - having made the preparations to minimise distress, when it goes, by shaving it super short. I can now not have it shorn again - and I know it sounds a bit bizzarre, but I will be glad, when it finally starts to shed. Not so keen on the eybrows and eyelashes leaving me though - but it would give me the feeling (rightly or wrongly) that the chemo is really doing its job.
In my head I really crashed on day 7 - so excuse the following rant - perhaps some of you feel or have felt like this, too? I am a career lady and working, but still.....
Why do I have to take other peoples sensitivities into account at this time?
Why can't people accept that Breast Cancer is not a horror story?
I like my wig and really do not mind wearing it, but why do I have to put it on to keep people 'happy' and make them feel more comfortable with me?
I do not want to have to say I am ok, when I am not - as when/if I do say it - I may get judged as unfit/incapable/ineffective/incompetent/weak/not up to things.
Why is everyone advising me not to be open about my current condition, because the opinion that it is a kind of 'stigma' I would carry for the rest of my life - and may hinder my future job prospects and the way people perceive me?
Why do I have to avoid honest answers, when I have to say no to an invitation, need to cancel a business appointment or being unsure of whether I can accept it?
Why does that make me unreliable?
I hate dishonesty - I hate lying - what would they feel like, if they were in my shoes?
Why do I have to ensure that I react 'appropriately', so people do not get upset or think I am derranged - or get that pitying look on their face?
I know it is ok to feel like this - I know it will pass - I just hate not being allowed to me myself apart from my own 4 walls and people who truly love me.
I am not angry at myself or resent, what has happened - I am angry at others, sapping at my mental and physical strength - simply for the sake of 'appearances'.......
Rant over - ....I am fine again now - and and a guess some of the reasons are - 'britishness' - as I am of German origin. Hoping no one is offended - and am well adjusted by now to being British , having been here for a very long time.
This explained a lot to me, lol - http://www.bbc.co.uk/news/world-europe-13545386
Hoping all of you are doing well - Onwards and upwards!
Hi Tina, that's really bad luck and can't imagine being on a trolley all night! Hope you are home now and in a comfortable bed. Take care thinking of you X
Oh no. That is no good at all. Fingers crossed for the temperature then. Hope you will soon be back home with your creature comforts xx
Neutropenic scepscis for me,, arrived yesterday at 9.30, been on the same trolley all night, no beds! On aeu ward alongside dementia patients who've been shouting all night long. Ive literally begged the doc to send me home as i feel better, he agreed i can take oral antibiotics at home as long as my temp stays ok for the next 8 hours....so everything crossed!
Hi again, Paprika,
seems a good idea - and was no trouble at all - so glad you are doing ok.
This picture might appeal to you....
Vielen Dank für deine Bilder, but my page looks different, I got 8 buttons under preferences you got 9 and even I cant read your pics clear (what a work for you, thanks), it looks different. If I click in privacy it looks not the same, but thank you so much, have a rest, I will ask Lizzy from the forum.
I feel quite ok apart from not having the same energy like before but I cant aspect that. Was a long day yesterday, today I feel more like resting.
If you have your downward slope dont forget the warriors have their best time and soon you will feel better, sure!
Take care take a rest xxx
step by step guide follows to sort Private messaging - in pictures......have a look at the highlighted sections once on your own profile page
Lol, cannot get away from work, can I?
Thank you for asking - and just for the two of us - Danke der Nachfrage! - unless there are any more German speakers out there
Generally I am fine, especially mentally, quite mischievous really.
Physically it is becoming a little bit more challenging.
I had a few small dizzy spells yesterday (generally quite low blood pressure anyway) and am on anitbiotics for candida in the mouth - not tonsillitis, as initially thought - thank goodness, still not pleasant tough, but ok.
Started having a little bit of a head ache yesterday, which is building today.
But despite all - still made my 06.30 breakfast meeting this morning! But then home, rest and working from home.
I am not too concerned - after all I am on the 'downward' slope at the moment and all should start to improve as of Sunday. No sickness at all and not taking anti sickness since yesterday and appetite - good as always!
However, I am very aware, that there is likely to be a cumulative effect of symptoms over the course of the cycles, so am taking note of everything to put my coping strategies into place, once the first cycle is complete. Oh - I can be sooooo German, lol
How are you doing?
Hi Cara, I am from Edinburgh, did you start your chemo?
All the best for you x
Hi Sue, thanks for your information, normaly I am not so useless with IT, I work in this branch too, but I am not a programmer. How do you feel today, are you still with no side effects, that would be great. x