Steroid Head

[Lmc52]

Well here I am 5.00am and still wide awake, had to have extra large dose of steroids with my avastin yesterday as the last two doses I had an allergic reaction to it .This is was on my 10th and 11th but on my 5th and 6th of having it on it own. Rashes on both arms and around my lips 👄. So onc decided to give me more steroids and more piriton and GP gave me steroid cream and stronger anti histomene, I can’t help but feel that this lovely disease (please note the sarcasm there) sees you feel more “New Normal” and says no not yet have a nasty rash and pains in your joints just to remind you I’m still here. So my response it YES but l have friends who will fight you so take that.!!

So that explains no sleep and steroid head, I hate being awake in the night as the box l have in my head creaks open and all the why,what ifs and maybes try to creep out and as quick as you push them back and lock the box another one creeps out. So l got up and decided as l couldn’t talk my poor husband to death I would talk to you lovely ladies , oh and top of everything else my onc tells me the swelling on my side of my stomach by my bellybutton that l was worried about is a hernia (oh joy) quite common she says because of the big operation we have to have. Nothing if anything can be done until finished avastin in January 2019 so I have reverted to ordering big support pants ( how sexy is that, not that anyone is likely to see them,I’m very fussy who l show my pants to.lol😂 even hubby only gets a sneak preview.) as I said a very giving disease. He blames it on my incessant war on weeds in the garden and the bending and pulling , I m sure they laugh at me and pop up in another area with their tongues poking out 😜 unfortunately l think he may be right but one never tells ones husband he is right do you . Lol . Especially as he kept telling me not to again something I ignore 😆 to my own peril.

On a follow up on my hair puzzle I have been trying a shampoo I saw advertised on line called “White Hot” and I must saw very pleased with it for us new white/grey and platinum girls,really made my hair soft and shiny and went for my first haircut in 12 months and hairdresser said what good condition it was in.She cut all the sheep curls of and cut it very short but in a style so hopefully it will grow straighter now really pleased with it and actually quite like my new colour and it’s saving me money so win win 👍

Any way sorry for such a long post I have probably send most of you to sleep anyway who have bothered to read to the end ,so I am really doing a public service 😴😴

Take care all you lovely ladies and sleep tight. 💚🌈💚 xxxx

[Hidden]

Thank you for the “public service “💤💤💤💤

[Lmc52 in reply to Hidden]

Glad to be of service .xxx

[January-2016-UK]

Right now I know where you’re coming from. I’ve just had my first proper sleep for five nights and that’s with a standard steroid dose.

It’s good to tap away with your thoughts in the middle of the night. Like the sound of your haircut.

[Lmc52 in reply to January-2016-UK]

quite therapeutic when it so quiet outside ,had it cut into an urchin cut very short and feathery ,must say I am enjoying the freedom of wash ,run fingers through and leave also not having to worry about roots,grow old disgracefully l say. Lol. Hoping to get a few hours tonight but not holding my breathe.

[Juleswhee]

Oh yes the haircut sounds fab , must do something with mine , my beautiful chemo curls seem to be deserting me and I haven’t had a cut since March 17 so can’t complain . X Julia

[Lmc52 in reply to Juleswhee]

I had never had curly hair so at the back it looked and felt like sheep wool but wispy 🐑 in fact when my hairdresser cut it off I am sure there was enough for a small hat. It is quite exciting to have it cut for the first time again and l am now embracing both shortness and colour and getting used to the person looking back at me from the mirror lol. You’re hairdresser will be pleased to see you after such a long time .Enjoy.

💇🏼‍♀️💚 regards Linda xx

[BeeWild]

Poor You on the steroid rush!

My chemo curls have me looking like side show bob from the Simpson’s but I’ve literally just had my last dose of taxol on Monday with the cold cap (which has worked a treat for me) so can’t yet go to the hairdressers to have any semblance of order on my unruly 1950’s American mom look!

You should post a pic of your new hair do I could do with ideas of styles for when I can have mine done xx

Many hugs

Bev xx

[Lmc52 in reply to BeeWild]

Your reply did make me chuckle 😂 it reminds me off my grandsons reply to me when l told him l was having a wig he looked at me very seriously and l was expecting questions when he said “ Oh Nanna. Great will you look like Ronald McDonald !!” When l had stopped laughing I said No to which he replied “ Oh that’s a shame” and never mentioned my hair again. He is six puts things into proportion doesn’t it.

Big hugs back to you

Linda xx

[Ge0rg1na]

Yes I'm in the same zone as you with all the pills and creams but you don't seem to be suffering as much as me from the itching. It's driving me a little bit mad but yesterday on onc's advice I bought some emollient ointment. It goes on like butter but as it's absorbed I can feel my skin becoming less dry and itchy. I'm now on a reduction regime for the steroids so now all I still need to do is to consciously not scratch. Difficult! Good luck Gina x

[Lmc52]

It made me scratch like mad , which is why l went to GP he prescribed me a cream called Betnovate Cream full name betamethasone valerate ,use very sparingly and he suggested rubbing in body butter after to soften the skin. Don’t know if you have tried it but it worked amazingly for me ,just couldn’t use on face so using cold sore cream on lips. Have to wait and see if extra steroids and piriton help this time. Do hope you are soon feeling less itchy. Best regards Linda x

[Pendle99]

Your post has made me smile. I too am familiar with the evil box in the head that creeps open when it is dark and I am all alone. 💖

[Lmc52 in reply to Pendle99]

I have managed to lock it back down now by forceable sitting on it , till the next time. Now all l have to cope with are my big support pants ,Oh the glamour of it. Oh well onwards and upwards.

💚🌈🤗

Linda xx

[delia2]

Hi. Sorry you’re not getting sleep but I love your attitude! Your hair styling gives me something to look forward to on the other side of my first line chemo about to start Tuesday. Good luck with everything!

[Lmc52 in reply to delia2]

Don’t be too worried you will be amazed at your inner strength, good luck and remember we are all here to support each other. Be prepared to become a different person when you look in the mirror, strong and sassy.

Pull your big girl knickers up and kick it in the bum.

Take care

Linda xx💚🌈

[delia2]

Thank you, Linda. Your words mean so much. xoxo

[Lmc52 in reply to delia2]

It’s a pleasure any time .xxx

[JayGeeCee]

I have an old fashioned apothecary chest with lots of little drawers that lives in my head. It kept me sane when I was working crazy 65-80 hour weeks before I retired 3 years ago. I only used to “open” certain drawers when I had the time and headspace to do so. Mostly I kept the unpalatable locked up tight. Sadly I’ve lost the keys these days and the blasted drawers seem to open at will, mostly during the middle of the night. So when the stent in my ureter wakes me up with a burning pain, like it does at least three or four times a night, the drawers all fight to reveal their contents and sleep becomes impossible. I seriously cannot recall the last time I slept for more than three hours at a time.

I’m glad you like your hair, I cannot get used to the old lady with short slightly wavy grey hair who looks back at me. I look like my old mum in her last photo before she died in 1992. Loved her to bits, but not happy seeing her in the mirror now.

I am seriously considering going very white blonde again, but must admit to worrying whether all the chemo and ongoing Avastin will have an adverse effect .

Enjoy your new locks, short hair is so much easier to manage isn’t it!

Joy 😘

[Lmc52 in reply to JayGeeCee]

I asked my onc about that as like you l am on avastin,she said as long as it was vegetable dye rather than chemicals it would probably be ok but just would not last as long.Maybe just run some strands through it to lighten the darker grey,mine seems to be very light on the front but darker at the back.Mind you in my magazine today “My Weekly” there is a great big article about going grey it seems it is the trend ,so we are trendsetters without trying ,what do you think on that 😀 !!

Also re your posh apothecary chest bungee strap it shut and cover it with a patio chair cover that will stop the pesky drawers. 😂

Linda 💚🌈

[JayGeeCee]

Never thought about a bungee strap! Will give it a go 😜

I know what you mean about everyone going grey, mine’s darker at the back too....badger springs to mind.

We’ll see 🤔🤔🤔

Joy 😘