Pre Chemo Anxiety

sorry to hear you are having a rough day, but you are right you will have good and bad days and you know what, that's okay!!

I am a long time past my Chemo days BUT I can reassure you that it will be no where near as bad as you are picturing it, promise!! Yes it 'can' have yucky side effects and yes you will lose your hair, unless you are cold capping! But it doesn't change you being you! 

I was working as a nanny when I went through Chemo, one of the children was a year younger than yours and one 2years older! I sat down with them a week before chemo began, talked to them about needing medicine and then told them about losing my hair! I then asked them if they would like to see the wig I might be wearing and the scarves that I had bought! If they had said no I would of left it at that! However they said yes, they looked at the wig and then tried on the headscarves, told me I would look like a pirate with the scarf! Then we sat and decorated the stand to put the wig on! I told them that I might look slightly different without hair and that the medicine might make me a bit tired at times so i might need their help! They accepted this! Then the most important thing, i asked them if they had any questions to which they said no! I told them if at any point they wanted/needed to ask something then that would be okay!

From that day on neither of them batted an eyelid. The first day i came down from upstairs wearing the wig. The eldest asked "have you lost your hair" i said yes i have. She gave me a hug and said I looked lovely and my scarf was pretty! The youngest said "morning Pirate Sal, can I have breakfast now"! From that day forward they just accepted me how I was! So don't assume your little one will be scared of you or not recognise you because you might just find they accept you for who you are their mum!

If i could give one piece of advice to anyone who has children or works with children it would be answer their questions honestly and in as much detail as they need! Don't over explain! Little ones generally need a little reassurance which might be a simple yes I'm okay or yes I'm a bit tired! They don't need you to say why you are tired, unless they ask! Children will always accept people with no questions asked! Ask every so often if they need to know anything but don't push them! 

Now it's time to stop worrying about everyone else and how they feel and concentrate on YOU for a bit! Remember to write down any side effects so you can discuss at your next onco appointment and DON'T sugar cut things! Saying you have been fine because you don't want to 'moan' doesn't help them or you! They can't offer solutions to side effects if you don't mention them! No one comes out of this with an award for being brave and not needing help! So ask for what you need!!

Hope that helps a little and I just want to wish you all the best with your treatment. Just think in just over a week your first dose will be done and you will start the countdown to hopefully being Cancer free! Take care Hun. Sal xxx

P.s if you find yourself unable to sleep due to stress or steroids during treatment. Then pop over to the 'AWAKE' thread! Theres usually someone around and if not theres plenty to read and lots of pics to make you smile! Just remember you are NEVER alone!

Oh and also there is a dedicated monthly Chemo thread where you can chat to ladies who are going through Chemo at the same time as you! But remember just because someone on there has a side effect and is struggling it doesn't mean you will. Xxx

Hi Sal

Thank you so much for your positive reply, it's easy when your feeling down to feel alone and it means a lot that you have taken the time to reply with such lovely advice.  I have read your profile and seen how much you have gone through the last few years and still are, if I have learnt anything it is that cancer is unpredictable, you can never let your guard down!  Your attitude seems to be very positive though and it is very kind of you to help others with advice, maybe I will do the same one day!  I was diagnosed in Janurary and have not spoken to anyone that has had cancer, we are the same age and although I am sorry for what you are going through it is comforting to feel I'm not alone.

Going back to my daughter I have spoken to her about the medicine I will be having and the hairloss and to be honest she didn't bat an eyelid !  It is just me worrying that when it happens she might feel differently but I'm sure as you said she will be fine.  

I expect that once the treatment starts I will feel better than I do now, it is just the anticipation, the unknown !  I will make sure I write down any side effects and report them, hopefully it will all be a lot easier than I am imagining.

Anyway thank you for helping me on a down day, I feel a lot better! x

L Hi 

welcome to the club that nobody wants to be a member of but are so pleased to have found . 

I finished chemo in Dec .. feel free to read profile ..

As Sal says it isn’t as bad as your imagination is telling you . Not pleasant at times but if you’re looking at that list of Side Effects wondering how you’ll cope , then please believe me you will not get them all and not all at one time unless you’re being very greedy  

on the whole mine were minimal and more importantly manageable . Tell you’re team if you feel meds’ arent working to keep nausea at bay they can change meds . 

Have a look at June chemo thread thick it’s the second sticky under discussions at the top of this page . Lots of hints and tips on first page also at least 3/4 people starting chemo this week to chat to . 

I was on EC so hair loss expected like you I like to feel organised and under control . What I did was get my hair cut short pixie style before I lost it . It also means less painful when it shedding . So if you could  ask your hairdresser to fit you in first when they open if she  can . Best thing to do at moment is keep occupied shouldn’t be hard with a four year old lol

but lots of us found cooking meals in advance and freezing  meant family didn’t starve and it kept us busy when waiting . 

Dont forget to visit Awake then you’ll find out how mad we all are . 

Margaret x

Hi Margaret

Thank you for your reply,  I am happy I have found this support even if it is as you said not a club that any of us want to be in!  

I am thinking of shaving my hair off before it starts to fall out as I want to feel in control.  Hopefully my wig will arrive tomorrow and I will like it, might give me the confidence to go ahead!  I have not had a hair cut since March so it's got to be better than what it looks like now! 

From the response I have had today I am feeling more confident that I'll get through this and come out the other side !  I think it just makes it hard when we are in this covid situation and can;t see family and friends for support etc

Thanks for all the advice ! x

Hi

After my pixie cut the next stage was a very short scissor cut hairdresser didnt go a clipper shave til just before my last chemo that worked for me but we’re all different . There are a couple of ladies on a hair loss thread who have just removed hair . 

If you decide to go for it a no 2 with a guard on is best .. no danger of nicking scalp . 

Lastly just to let you know my hair started to grow again end of Feb I now have a shielded / lockdown pixie style quite thick and curly. 

Margaret x

Hi , glad you've found the site, everyone here has been so supportive of me.  I wont say dont worry because I was terrified of chemotherapy,  but although hard to was doable and nowhere near as bad as I expected.  I found on EC I was rough(nausea,headaches,ver tired , brain fog) for first 5-7 days  then perked up and felt ok from about day 10. Docetaxel was ok, just very fatigued, bad acid reflux and 1 episodes of oral thrush. Always mention any side effects because there is usually something that can be done to improve them, and sometimes you think it's just a side effect when its something else ie I didn't realise I was getting thrush just thought it was side effect till 4 days later when the white fur appeared on my tongue!

Re helping your little girl cope,  my daughters 8 and I just told her I had a naughty lump that would make my boob grow do big it might pop, so the drs were going to shrink it with medication that would make my hair fall out. We talked if I should get some silly wigs and hats just in case which she though was funny but we never got round to it! It's a nightmare with coronavirus but if she is st school normally or will be going back (hard decision to make x) my daughters school were amazingly supportive so might be worth speaking to them.

So I've finished chemo now and am nearly 3 weeks after mastectomy and Anc and my post op shows no cancer left just scar tissue. So chemo does work fingers crossed and hold on to that thought during the tough days, they do pass and you'll get through this. Good luck!! And do keep posting if you need support xxx

Hi , me again! Yes we are the same age I did wonder if the 75 might be your birth year! I was just reading your previous reply to Margaret where you mentioned taking control by shaving your hair off!

It is completely your Decision and we all have to do what feels right for us! I don’t know how you have your hair now? But just wanted to mention that I decided to cut my hair to a shoulder length bob! It was down to my bottom so for me that was a pretty big change! But like you I felt I needed to at least prepare for the inevitable, the thought of all my long hair falling out and getting everywhere was just something I couldn’t deal with! Plus it gave me a chance and the children I looked after a chance to get used to me with shorter hair!

So if you decided to maybe trim your hair in preparation, subject to you being able to do that, then that might be the better option! However I personally think shaving it is jumping the gun a bit! Yes I know some people will say it worked for them and they were okay and ready to deal with it! However just to let you know hair loss on Chemo isn’t necessarily immediately! I still had a full head of hair when I turned up for my second dose of Chemo, so that would of been 3wks into treatment! Then it started to really fall out! At which point I had it taken off! Mum cut it VERY short! The downside to shaving it, is one you risk cutting yourself and 2 you are left with tiny bits of hair that gets everywhere! Don’t get me wrong any length of hair gets everywhere, but all I am trying to say is do you want your child to cope with your hair loss before it really needs to happen? My hair (and we are all different) actually started to grow back during the T part of the Chemo! So in retrospect I was only actually completely bald for around 6wks! Which was long enough!! 

Like I said it’s your decision! But don’t jump into it because you feel you have too! I no you want to feel in control! You are actually speaking to one of the biggest control freaks......but......If cancer taught me one thing VERY early on, it’s that none of this is really within our control. Expect the unexpected! Always be prepared that things might not always go to plan! But take it a day at a time! The one guarantee is you will get through this and you will NEVER be alone, because even during lockdown, we are allowed to give you....

because social distancing is never an issue on here! 

Take care Hun. Sal xxxx

Hi Gracie75 - thought I’d chip in . I understand the feeling of just wanting to be me again - I felt exactly like that because suddenly the control and coping mechanisms you’ve built up over your life ( I am 66) aren’t any use to you ! It took me a few weeks and a few tears to realise I couldn’t do anything about the diagnosis so I needed to get through the treatment . What has helped me is keeping a diary as I now understand my SE of treatment and what has helped or not helped . I have just had week 9 of my 12 week treatment - Paclitaxel weekly and Herceptin Trastuzumab 3 weekly

So what about hair loss? I had shoulder length hair and lots of people said cut it all off - “it hurts when falling out , can be distressing and might as well get it over with “ So I got the wig organised, bought the headgear and scarves and thought well I might as well cut the hair off .BUT then I thought why not just have it cut short then it won’t be noticeable when it sheds and I can always have it cut off . Plus I was a bit intrigued to see how I looked with short hair as not had it since my 20’s ! I am lucky that my cancer unit has a hairdresser on site and he gave me the most fantastic “wow you look younger” pixie haircut! Best cut for years . So what’s happened to that hair? I’m heading for my 10 th week and I still have what some people think is a full head of hair - I have shed a fair amount but I had very thick hair . Head tingles and itches from time to time and I think here we go hair is going to all fall out but it doesn’t and no I haven’t used a cold cap. Everybody now says you will lose it all when you have EC - and yes I probably will but I reckon I’ll probably get to week 12 of this treatment with still a good amount of hair. So don’t rush to cut your hair off unless it’s what you want . I’ve had 9 weeks of hair when I had considered taking control ( because it felt  like the only control I had ) and having it all cut off so I’m happy with that. 

Hope all goes well for you

JJ 

Hi Moppers

just reading your reply to 

I was on 6x EC and was hair loss in first week and chose pixie cut , I agree best cut ever will not go back to bob . 

My hairloss did not start til no 3 with light shedding . Hairdresser trimmed . Real loss not until no 4 kept tidy by hairdresser ..shave with guard on not until just before last one when it needed Shape to grow back into . Worked fine for me hair growing back by Feb and now back to what I call shielding pixie look . Coming back thick and strong same colour but with childhood curls back lol 

margaret 

Hello Gracie75,

Well done for being so honest and coming on here. I can quite understand the lonely side and losing your hair. Putting on that brave face for everyone else is hard when you're in turmoil on the inside. But it does get better as everyone comes to terms with it. Don't get me wrong - I throw wobblies left right and centre. I think of the Weebles. Remember those little toys from the 70s/80s? Weebles wobble but they don;t fall down?!! That is us. We wobble and wobble but we always get back up!!

My hair did fall out but not all of it. I am having FEC-T. Done my four FEC and had my first T yesterday. I had a short bob, very grey, but it was me. I decided just before lockdown to have a pixie cut. My husband took charge of the clippers when I couldn't stand the hair about. I'll be honest - it does get everywhere. The girls on here told me to get a pet sticky fur roller. Brilliant!! It works. Get them out of the cardigans and sofa and off the pillow every morning. Once it stops coming out you begin to feel more normal. I bought scarves and hats but have at last found a way to tie my own scarves. The thinner ones work the best. I still have a little fuzz but being grey/ white it doesn't show up. I going to see how creative God can be when He makes it grow again!! LOL!! Ginger? Black? Brown? or Grey? Curly or straight? Who knows? LOL!

So keep going you are doing well. Lots of hands to hold on here.

Bless you xx