Confused, Irritated Big Time, Lost and for NO REASON!

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Hi all

Have had a sh*tty day but not as bad as my poor OH who has had a worse one - down to me

Very out of character

It’s everything and nothing

I have been skipping about for the last week as I am sooo excited that I only hve 2 to go - so if it goes as planned i’ll have one tomorrow and one left

but it never does go to plan … so i might be delayed AGAIN

Now I’m getting near the end (I still have rads to go) I’m just not sure who I am any more …

What will I look like ? I’ve put some weight on (not much) but i can’t lose it until after rads - that is making me feel trapped …just not in control which is irritating me

My “look” has changed from shoulder length and very curly (sort of gypsy) to short and very straight (sort of very professional) and I don’t want to keep it like this but I do as I’m not sure what else to do and I feel like I’ve had a major change in my image and now I have no vision of who I look like and I’m even worried that having CRAVED thicker hair for years I am just feeling very shocked that I may have it and it’s panicing me - how crazy is that!

so my “inner” is in “turmoil” and i’m not quite sure why …

I don’t know when chemo will finish, when radio will start (its b/dy hot here so August will be a nightmare!), what I will look like and I am not a happy bunny

I seem to have gone from being on a “high” for a week to sinking down a low and have no idea why …

in fact I have been so “chipper” that I almost forgot i have it tomorow …just as well as it may be cancelled again!

anyone else feel like this ?

love FB xxx (looking very well though - couldn’t resist it!)

PS Might be hormonal since periods have disappeared for a few months- I fell like a completely irritated teenager … AAAAAAAGGGGGGGGGHHHHHHHHHHHHH !!!

hope that you are doing far better on an individual and collective basis!

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HI FB,
Babes I am so sorry you have hit a downer, I have read a load of your threads and you have seemed so up beat about the whole thing.
I suppose we can’t be happy all the time.
You will be fine. I was out with an old hairdresser of mine the other night and she said the last time our hair is like yours is now, we couldn’t remember as we were babies.
You will get your identity back just might take a wee while. Our visual appearance has a lot to do with how we feel about ourselves I know but it is only 1 small part of us.
Is there anyway you can do something that makes you feel more like yourself? Dress in a particular manner or something like that.

Our hormones as well as everything else are being given a severe battering by this whole dreadful experience and unfortunately it is those nearest and dearest to us that bare the brunt of it.
I am sure I will be the same as you when I get going with the whole treatment thing.
I start first of 3xFEC on Wed, until now I have been very much of the ‘BRING IT ON’ attitude but I know that I will not be so brave come Wed.
I have planned to get my hair chopped off on Thursday, was undecided today but my friend said at least it is something I can control for a little while longer.
She hit the nail on the head, it is all about control.
We have absolutely no control over what happens in our bodies during this and also what we look like is often beyond our control too.
We will get there eventually.

I have 2 neighbours who have both come through the other side, 1 of them I didn’t even know about until the other went in for recon.
They both look fantastic and have gotten back to where they were, almost.
There will always be something in us that doesn’t let us get back to who we were 100% but I think maybe it can make us better in most ways.

Please please please realise you are almost there, you have doen fantastically well up to now don’t give up just yet.
I am sending you all the positivity I can muster to try to help you get ‘chipper’ again hunny.
You have helped me sooo much through this and you probably are blissfully unaware of it, so thank you for that.

Love and hugs
Lisaxoxo

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Thanks Lisa
You’ve just made me cry which is just what I needed! Off to see OH - thanks so much for your support love FB xx

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No worries babe, take care

Loads of love and big smiles
Lisa xoxo

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FizBiz! You sent me a welcome “comment” even though you have had a s"“” day, so the good person you always were is still in there it’s just that the wrapping has changed a bit for now. The blackness will lift, don’t fight it, keep your self focused on “tomorrow”…IT WILL BE BETTER. think of yourself as having a makeover. Bet the new improved you , who comes out at the other end of all these shenanigans will be STRONGER, BRAVER AND ONE DARNED GOOD LOOKIN’ PINK LADY, INSIDE AND OUT! I’m sending you a BIG HUG! Take care Fiz! Love from KATWOMAN. XXXX

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hi again

just been “for a chat” with OH

he is usually very good at saying the right thing …sadly not tonight … or i am just supersensitive … or both!

e.g. “… but you look fine when you dress up at night with your makeup on” … what does that mean?

Having said that I suppose that going out for dinner used to worry me a lot - preferred lunch - less pressure to look good
But that’s not the point anyway is it …

followed by … wait for it …

“…most normal people just rest a lot but you have to keep on working …” … I did manage not to say F.O. but that was about as posiive as it got!

tonight is not a good night to communicate … am off to bed before we do more damage to each other!
night night love FB xxx

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Nite nite babes

xoxo

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Just dashing out to radiotherapy FizBix, but will write on this thread when I come back in! Biggest of hugs and hope you have gone to bed now and feel brighter tomorrow. Love Sarah xx

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HI FB
sorry to hear you so deeply thoughtful and hope getting it down in words helped you to work through it a bit. Now this is a bad thing to suggest and I am hoping to give you a little chuckle, but I am remembering the burnt penis effect. Only if you really really need to seek revenge of course.
Followed by ’ Dear, but red always was your colour ’
Hope things look brighter in the morning
Lily x

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Thanks Lily, SLSSS, Kat and Lisa!

Made the mistake of having a cup of tea … wait for it … talk about puttng your foot in it …

… he tried to make it better … I said “tried” … not “did” ,…

He first of all asked whether I would I ever be able to go in the sun again ? I said “yes but not this summer” - he said well you can look forward to looking nice and brown NEXT year then … implying ???

and then he said “… because if you couldn’t ever go in the sun again then we’d have to go back and live in the UK …” I DON’T THINK SO!!!

I have always gone brown as a berry in the slightest hint of sun so I’m finding being very white very strange as well …but getting used to it … and he has always liked the fact that I am so brown (without even trying) so to say that I’ll look better next year is quite frankly RUDE! …

off to bed again! thanks again … will let you know wehether I have it tomorrow … let’s hope I’m not rude to the ONC! …I promise that if he says I can’t have it then I won’t tell him where he can put it!
love FB xxx

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Hi again FizBix - Just sat down with a cup of coffee to read this thread through. You know that even when you feel miserable you sound wonderful, and somehow that wonderful sense of irony of yours will get you through. And you know what else, even when your OH has said something that didn’t sound quite right to you (we all get super sensitive sometimes), I still think he sounds lovely - and he is trying so hard!! As to who you are, you will always be you, FB, just a few appearance changes and a whole lot of life experience making things confusing right now. My hair is about 1 inch long now and mousy. But for twenty years it was blonde and in a bob. The two times I have braved going out without a wig people have been very complementary - but it’s not ME! But of course it is ME! All very confusing, but by no means too awful. Eyebrows and eyelashes have put in a sudden reappearance which is good as well.

Mostly I expect you are just worn out with all the treatment - it has been going on for such a long time for you. Will be keeping everything crossed that you can have it today, and that you feel more at peace with yourself, your OH and the world in general - and if you don’t, well, tomorrow is always another day. And you being you you are going to come through all this just fine! You have been so lovely to all of us - make sure you are lovely to yourself as well! love Sarah xxxx

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Hi Fixbiz - first of all I think I know exactly how you feel - I have been going throught this since Feb now (not sure how long you have been on the journey) and just the last couple of weeks I have felt as though its never going to end and I am never been able to lead a normal life again. I look in the mirror and don’t even recognise myself without eyebrows/lashes…sick of not having my own hair, don’t feel like buying new clothes and feeling very tired. All this said parts of what you are saying make me smile…since when do our OH say the right thing - especially when we are in one of ‘those moods’ - you know the sort I mean! I hope you don’t tell the onc where to stick it, that your treatment is not delayed end your OH gets to the end of the week without being punched.
Seabird - nice that your hair etc is growing back - can’t wait for mine 1 inch is better than none!
lots of love to everyoneXX

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Hi FB

I’m sorry you are having such a tough time of it at the moment. I think we all get hit with these ‘down’ moments once in a while - hardly surprising given what we’re all going through!

I can identify with the ‘where have I gone’ feelings - mine are the other way round though lol - I can’t imagine what it will be like to be a ‘normal’ looking person again. If you remember, I have never worn headgear, always gone for the bald look. I haven’t had hair, to speak of, since last December. It fell out after second fec, then because they stuck my rads in the middle of chemo, it grew back to about 5mm, then promptly fell out again with second onset of chemo. I am now 6 wks post the last chemo - and am just beginning to sprout what can only be described as fluff !

But, I have got so used to the bald head, and it’s even tanned now slightly, that I can’t imagine having hair again - I have to keep getting my work ID badge out and checking what I looked like lol.

My OH is also in the ‘I have a diploma in making crass statements’ category - what he doesn’t understand, cos he’s a man lol, is that they become much more crass depending on the mood I’m in - so what might get a laugh one day, gets his head bitten off the next!

I’m also at the ‘don’t know’ stage - going to hospital this morning to find out when they are going to start my herceptin (which depends on whether my veins have recovered from the last chemo extravasion fiasco - still swollen after 6 weeks and can’t turn my wrist, and have great big fat ugly tramlines up my inner arm now!!) - and then don’t know whether I’ll get any more than 2 herceptins due to low muga scan…is it worth it?? Onc thinks so cos of prognosis, but I can’t help thinking what if I only have 2 and end up with a dodgy heart - where’s the gain in that???

All of the above coupled with a prosthesis that appears to have a mind of it’s own (and I’m on my third now lol), an OH who somedays appears to have no mind whatsoever, and myself who doesn’t remember what a normal mind is …means I can completely identify and sympathise with where you are at the moment.

Sending you great big hugs - hope you don’t have more delays with treatment and can soon get back to where you want to be!!

love
Magz

PS I’m also going to be psychologically assessed this morning, prior to attending a stress management & relaxation course that my GP referred me to - now this should be interesting…will report back…am I mad. or just psychologically challenged haha!!

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Hi Fizbix,
I am sorry that you are having a rough time and I reiterate all that the above ladies have said.
BUT dear Fizbix how could you when you feel mad, bad or sad ever write down that there is I quote…“no reason.” There is every reason that you feel as you do. Hang on in there, be gentle with yourself, chemo nearly over and I think that this is the most distressing of the treatments. Very soon I am sure that you will feel more able to cope with the much deeper issues and begin to find yourself again.
love Margaret

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Hello there ladies
thanks very much for your lovely comments

SLSSS - lovely to hear your news and that you are getting your hair back
Holly - you made me laugh re: OKH and the end of the week
Magz175 - you made me laugh, cry and then laugh again - sorry you are having such torturs with the treatment
and Margaret -you are quite right - thanks for the reminder

well … there is good news and less good news … the usual treatment rollercoaster!

I arrived (as you do) and this bored woman tried to engage me in conversation - I made it clear I wasn’t in the mood (by reading and writing lists - forgot my glasses) but she persisited …

then she asked me how often I have them (what a question!) so I said every 3 weeks but never on time and she said … “oh yes my husband has problems but he has them anyway and then has a transfusion the next day” … I just grunted and completely disengaged and she then said … wait for it …

“… you are so young … AND YOU LOOK SO WELL …” she came very lose to wearing his transfusion drip round her next and flying out the window but I thought better of it and moved “for better reading light” …

then I went ot see the onc after a short kipette …

the good news - hes doesn’t think I have lymphodema - he thinks it was something else due to bite - a huge relief - not sure whether to cancel physio appointment tomorrow … any ideas ?

the less good news … someone else had thrown the woman out the window? … only joking …afer a week of immune boosting injections my neutorofil levels are at the dizzy height of 0.5 instead of the 1.5 linit - goodness know what they were like last week!

so … continued

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I have been postponed again … S*D it !

I asked how long reads will be when I get there - 6 weeks - and also when they start - about month after chemo - probably start September … so the celebreatory trip we have booked for a few days at the beginning of October (wedding aniversary) will have to be postponed!

was feeling quite ppp’d off and went to cafe while OH drve to pick me up and had 2 packets of crisps (stupid but understandable) and then this smily chap arrived in a wheelchar and I felt quite ashamed of myself!

so … waiting again …

am going to have a sleep so i can start today again … it’s the only way yo get over it mentally or else i end up writing the day off

thanks again for all your support

lots of love FB xxxxxxxxxxxxxxxxx

PS sorry about typos but not in the mood to correct them - just having a dump … (I mean a verbal dump - not giving you “too much information”!!!) …

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…oh no FB - not again, how rotten is that. This must feel pretty endless for you, but you WILL get there in the end. I would strongly advise you to go and see the physio - she will be able to give you lots of good preventative advice, even if you don’t have lymphoedema now. Also may measure your arms and get a base line. By the way, did you ever see all the comments written under your “worried about my arm” thread - lots of useful info there. Hope the sleep helps

and hi Maragaret, have been thinking of you and that it was a long time since I had heard news, and wondering how you were. Sorry this is still such tough going for you. As you say, it will be interesting to see how the assessment comes out, and I hope you really benefit from the stress management etc.

To you both, and everyone else reading this. Good luck, stay strong, keep your sense of humour, together we can get through this! Love Sarah

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Poor you FizBiz

I don’t know how frustrated you are about another delay as I’ve only had one (delay) so far - maybe you’ll have me ranting and raving in a couple of months when I should have finished but haven’t. However I do know how you feel and it’s not surprising that you need to let off steam. As to your OH, isn’t that why the book 'Women are from Venus, men are from Mars (or other way round) is such a best seller? They can be so dumb at times but you have to feel sorry for them, after all they’re only men :wink:

All of this ‘experience’ is cr*p - the only good part is this website where we can all sound off to ladies who know exactly how we feel rather than people who think they know how we feel.

The only bit of good/better news for you is about your arm - I was very concerned when your thread about it appeared. I too had a nasty reaction to an insect bite and if it had been on my bad arm would have been very concerned.

I don’t know how to pick up up from where you’ve gone down to at the moment but I hope you wake up and feel better about the situation - not very easy I should think. I just hope you do get back your great sense of humour - after all who started the ‘who’s still got hair?’ thread which has been the source of a lot of laughter for many of us and some newcomers.

Take care

Nicky x

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Heya Fiz

I think you may have worked your date out wrong… How long are your rads?

I say this because I did work them out wrong.

eg:

6 x fec 3 weeks apart followed by a month and then 3 weeks of rads (15 doses)

here’s what I did wrong. I took the last fec and added it’s 3 weeks to 4 week break before rads. I don’t think that’s what they do I think the 4 weeks before rads closk starts straight after the chemo, eg 3 weeks after chemo, 1 extra week = 4 weeks and then rads.

I estimate if youre chemo had been delayed another week you should finish by mid september I think.

Does that cheers you up at all… did you make the same mistake or is it 3 weeks to let chemo clear and then 4 weeks until rads eg 7 weeks total (I b***y hope not or I’ll be having a proper little tantrum I expect).

PS I think you have a serious case of the are we there yets… bet I’ll be even worse :wink: You’ll get there but you feel free to scream and scream until you are (can I join in :wink:

Lots of love

Angie

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Oh dear, sorry your treatment has been delayed I dread that happening to me as I have a trip to France organised - exactly 1 week after I am supposed to finish treatment.
Sounds like there are now a few people living dangerously within your vicinity - which hospital do you go to?..just to make sure I can avoid it.
When treatment is delayed how long is it delayed for? Not too long I hope.
XX