Hi Everyone,
I am feeling much better now - but then I haven’t had to go to the loo again. I have put cream on (lanacain) that is making it feel better and my sister here helped no end by keeping me company.
I thought I would see how I go tomorrow and if it’s still bad then pop up the hospital. It’s bad enough being sore below at the best of time, but I have my period at the mo too. It’s bad enough having to show your bum to the medical folk, but during my period I cannot bring myself to do it. So tomorrow if all else fails I will bite the bullet and see the doctor.
Thank you so much for all your support!!
I am so lucky that today pup is having a sleep day. He’s been asleep pretty much all day, except the walk I took him on at lunch time. He must be due a growth spurt!!
Alison xxx
PS - Jo - I hope you enjoy the new pillow!!! Fill it with sleep fairies.
Alison,
I wonder whether being on your period has anything to do with it too, I was on mine for my last cycle I got a really sore bum, though not quite as bad as you I don’t think. I found that using moist toilet tissue, and just patting rather than wiping, plus putting on bepanthan regularly did really help, this cycle I’m not on, and no sore bum (yet).
When I had piles after I had my son I found that a cool bath with salt in it (just kitchen salt) helped to sooth too.
Jo
x
Evening Valentines,
Question for those with wigs
How are you managing in the rain? I can’t manage an umbrella and a dog.
Jo , enjoy your new pillow. Nothing better than a new pillow in my humble opinion.
Alison - very relieved you are feeling much better, and I don’t blame you for being reluctant to visit the hospital! There is nothing dignified about this disease. However, a phone call might solve it rather than a personal visit?
Take care everyone Linda xxx
Hi Valentines
Haven’t been around for a couple of days as been keeping busy, trying to take my mind off the fact that I have to go for a field vision eye test next week to get my driving license renewewd. (I have Retinitis Pigmentosa. A rare eye condition that gets progressively worse and can lead to blindness. So rare that even the specialist that diagnosed it couldn’t tell me anything. Did say though that body trauma could make it worse! I guess we’ll find out after 2 surgeries and chemotherapy 
).
Anyway I got a letter today cancelling the appointment and re-arranging for the week after. I spoke to the hospital and explained chemo treatment on Friday will mean I’m in no fit state to do test that week especially as my driving license is at stake (once my eyes are deemed too bad, I will never get it back!). So now I have to wait until April for test and the DVLA have said that if I don’t attend that test, even if it’s the hospital that cancels, my application for license renewal will have expired (wharever that means??). My current license ran out in January and the reason this has gone on so long already was because the first optician the DVLA sent me to “used the wrong machine”. I am so pissed off. I really don’t need this at the moment.
I’m afraid the worry that my eyesight may be badly affected has totally pushed bc and chemo into the backgroung at the moment but I am still reading posts when I can and am thinking about you all often.
Sorry for the rant but had to let off steam and family going through enough already.
Hugs to all
Elaine xx
Symphony
In the morning when I rise,
darkness lies along the road;
and from outside my door,
comes the croaking of a toad
as it crawls along the path,
towards the moonlit fields.
While in a nearby belfry,
a lonely church bell peals.
When the sun begins to creep
slowly up the garden wall,
and darkness fades away,
I hear the skylark call
as deep within the forest,
all the other birds awake
and join the chorus of the dawn,
and the herald of daybreak.
There in the shaded fen
a doe with cautious eye
dips her head to drink the dew,
as she hears a vixen cry.
Love Kath xxx
Elaine , I am so sorry you have this eye disease ontop of everything else. Life just sucks sometimes.
The DVLA is acting in a most insensitive fashion and there must be something you can do to put a stop to this draconian attitude. It may just be some Jobsworth giving you that information, or maybe just spouting incorrect rubbish. I suggest you don’t take this lying down. How can they possibly “punish” you if the optician cancels? Fingers crossed it will all work out for you in the end. xxx
Kath - that poem is beautiful. Thank you xx
Fec T
Fec 2, day 15
One of my better days. Managed to hang some washing out on the line to dry - I know how to live 
. Just chatted to middle daughter on phone, she’s taking me to my next treatment next Thursday (all being well she said cautiously) and staying with me while I have it. Bless her.
Wattie, you are very welcome to our thread, but I’m afraid there are so many of us now that sometimes I forget some of them. Please forgive me if I forget you, it’s just chemo fog.
Sandra, glad the sleep fairy found you, I’ve been trying to write a poem about her, but poetry fairy seems to have deserted me. Good job I have a supply in hand.
Lisa, hope your session went well today. Wishing for minimal SEs for you.
Annabelle, good news about your tumour and your legs, all must be working ok.
Funki, you have done us proud speaking up to DN like that, well done. 
Linda, I know in photo I look completely bald, but when I look carefully in the mirror with the light behind me, I can see lots of tiny white hairs. They are lovely. Don’t like my colour.
Jo, I would go out bald if it was warmer, but the thought of it right now - brrrr! I’m a nesh b****r.
Karen, hope you start to become more normal over the next few days.
Elaine, so sorry about your eyesight. I only hope that you can manage the test in April so you don’t lose your license too early. It’s bad enough knowing that you will have to give up driving eventually.
A big thanks to everyone for commenting on my poems. It’s very heartening, and keeps my mind from dwelling on other matters. Would anyone like a poem that’s a bit spooky next time?
Big hugs to all who are suffering various degrees of SEs. Wish I could send you all lots of sleep fairies to wave their wands over you.
Love Kath xxxx
Karen, meant to say FEEL more normal, not become more normal. 
Just wrote this, so thought I’d post it tonight. Will it do?
The Sleep Fairy
She sits on my pillow and waves her wand
and off I drift to a dreaming land,
where my world is pink and full of flowers
and I wander through meadows for hours and hours.
When I wake up to face a world
that’s full of worries that are soon unfurled,
I long for the night, when sleep comes again
and I can forget this wretched pain.
So blessed sleep fairy, don’t go away
Just live on my pillow, please, please stay.
Love Kath xxx
Fec-T FEC 2 DAY 9
OK so I spoke too soon! I can feel the back/pelvis pain from the injections starting to rear it’s ugly head. Hopefully I have caught it in time by taking some Diclofenac and hopefully it will only last a few days as it did last round.
Re Pillows: The best pillow purchase I made was after my op and because I suffered with sleep apnea post anesthetic and I couldnt lay on my side I bought one of those V shaped cushions that allow you to sleep upright. I only got a cheap one from Dunelm because I thought it was only going to be a short term thing. I still use it now even though I can lay on my side and I sort of lay flat but use part of the pillow to prop my arm on. I couldnt sleep without it now and I am going to upgrade to a more expensive one and purchase more V shaped pillow slips. Oh and it’s great for sitting propped up watching the TV in bed or on the sofa.
<3 my V shaped pillow
totally p…d off, just spent 45 mins going through and writing posts then list the b…dy lot. arrrrrrrrgggggghhhhh.
Evening ladies,ohh by the time ive read through the recent posts ive either forgot what i was going to write or what ive read grr,had a lovely evening last night Son and Grandaughter came to stay the night ,had a bath and when i went back in the bathroom to swill the bath round i noticed lots of hair in the plughole and the floodgates opened son barged into wash his hands and that was it im sobbing knowing ill set him off were hugging away when Grandaughter comes in with the hairbrush saying come on Granny me do your hair,the tears turned to laughter,
you think your prepared but it still hits you…Got 4 hours sleep so hopefully go for 5 tonight,Love the poems Kath im starting to copy them ino a old note book i have that was my Grandmothers,she would cut poems out of her magazines and newspapers and stick them in it…The peppermint tea bags and Manuka honey have been put to the back of the cupboard the thought and smell of them makes me feel sick,cant face fruit only bananas,hope everyone has a peaceful evening and gets some sleep…xx Paula .x
Hi Alison
I dnt normally write on here but have followed each and every ones post from day one ov febs post.
I have same problem as you at moment and have also just been released from hosp.
Aqueous cream used as a cleansing when have been to loo everytime has worked for me i use with toilet tissue have used large amounts but hey se are crap to begin with without this extra prob hope u get some relief soon
karen x
Evening Valentines,
Quick post on mobile, sorry for spelling mistakes in advance.
I didnt get home until 8pm due to late leaving hospital and rush hour traffic home. Its been a long day for sure.
I wasnt given Steroids to start yesterday and being caught up in work completely forgot to see if i needed to take anything so had a double wammie before the course! Think I’ve caught everyones chemo brain and thats before me starting 
how on earth have you ladies coped with the line every cycle? I had trouble with mine prior to getting port fitted and it hurt me bruised me really badly too. The port went well Linda just felt the sting of the anaesthetic, my neck is a little stiff and thats it, no pain from port at all. At the moment I feel ok just tired.
ahhh gremlins got me! couldnt move cursor to end of my post.
love the poems Kath
Alison Ive had piles before and suffered a tear down there too. I found bathing backside in warm water after a loo visit (obviously only when your home!) helped lots.
Linda very brave of you going really short im not sure im looking forward to that happening so first sign and ill be doing the same x
Hope sleep faires visit us all sleep well ladies Lisa xx
OK, so, here we go again. Think i have it sussed this time. Kicked pad into touch and have two windows open on laptop so no need to keep going back and forth, genious, why did´nt i think of it before. Duh, dumb blonde or chemo brain. Actually, can´t say dumb blonde anymore, none left. lol
Alison, so pleased you are feeling a little better.
Linda, well done with getting your hair cropped, its much more comfy and does´nt seem to bother so much when it´s falling out. And I thought we all looked liked Halle Berry. Think of it as being liberating. Now youreally can wash and go. lol.
Jo, wish i could do that, still very concious going out in scarves.
Funki, glad you gave her what for.
Jo, we should´nt have any problems tonight as Kath has summoned the sleep fairies.
Kath, thanks, love the poem, inspired.
Karen so sorry you are feeling low today, tomorrow is another day and one day closer to normality. I take dex also on tax 2x4mg vials in am and 2x4mg vials in pm day before, day of and day after. Make me red in the face and neck for the three days but otherwise ok.
Anabelle, great news, agood luck for the rest.
Mandy, you lucky thing, I love Meadowhall but I only get to go when I visit my daughter twice a year.
Millymolly, do hope you are back on top soon, we are all with you hun. x
Lisa, hope your first was´nt as bad as you anticipated and all se´s are little ones. x
Apologies if i missed anyone out or have doubled up.
Sleep tight all xxxx
Lisa - glad it all went OK, albeit a long day. You must be very tired now. I hope you get a good night.
When did you have your port fitted? The way it reads, it sounds like you had it done just before your chemo. I have to have mine fitted at a different hospital from where my chemo will be.
Featherbird - that’s what I do on my PC. Have two or three tabs open at once. You sound very upbeat this evening.
Valji welcome to our happy band. Another Karen. Oh No … one is bad enough! 
Joke!
FEC1 Day 28
Hi Valentines,well good news,had bloods done and not had any calls from chemo unit,so all should be well for no.2 in morning.Big decision last nght,decided will not bother anymore with c/c as only have thin hair covering sides and back and a fringe.Hair is now going frizzy too,so its wig on every day now,with my own fringe showing too.It feels very comfortable and light,went to hospital,then Tescos kept looking at people to see if they noticed my wig.LOL with get over that when confidence goes up.Then went to pick Annie up from stables and everyone there was calling out to me saying how nice my hair looked and asked how I was feeling,really gave me a boost to know that they all knew about my plight,but were there supporting me,I don’t even know many of their names.I am so fed up with hair everywhere,I put my little towelling turban on,the hospital gave me,when I put my PJs on.Another new look for me,hubby thinks he got three wives now (He wished)LOL 
It seems everyone is feeling very low at moment,some nasty se’s going on,lots of remedies recommended so hopefully all will start to pick up tomorrow.Annie gave me a lovely card from the depths of her school bag,it was for mothers day,but for grandma,she really says it from the heart,such a lovely thoughtful girl,brings tears to my eyes.
Kath I really hope your sleep fairy works on all the insomniacs tonight,new pillows and all.
Good Luck Valentines with treatment,se’s and remedies,a peaceful night for all.
Love to all our gang Chris xxxx<3
Good morning all
Bloods went ok yesterday not problem like last time in getting any!
Thank you all for your words of encouragement regarding the illegal squatter! as long as its having its backside kicked not matter how small the chemo must be having some kind of effect on it.
Welcome Valji sorry you find yourself here but you will find may words of encouragement.
Linda the scan I had was a ultra sound its called a Doppler test.
Jo and Alison I really feel for you and I hope you begin to feel better soon
Loving the poems Kath you are one talented lady keep them coming
Chris good luck with today it will be good to get another round ticked off
Well I’m up dreading round 3 today I can taste the Chemo in my mouth already that’s before I’ve even started YUK!
Just a thought for all the ladies struggling with sleep I was prescribed some sleeping tablets I do not take them all the time only when I really need a good night of unbroken sleep and my GP said that they are not addictive like most other sleeping pills
They are called Zolpidem.
Wishing everyone well with minimal side effects.
Annabelle xx
WARNING THE FOLLOWING POST CONTAINS STRONG LANGUAGE,TYPOS AND MOANING…SORRY!!!
Cycle 2, day 8, cc
F#*k, B!%*#*r. S*#t…
Good morning Valentines
Admitted to hospital last night. Same story as last time. Felt unwell yest temp went up in evening went yk A&E eventyally admitted neurs at 0.3 bu%#*r!!! Id just finished 5 days of GCSF injections too!!!
Bl%#*y H#*ll surely cant be going through this every cycle.
I never swear but that rant made me feel goid!!!
Good luck Chris today round 2 at last. xx
Thinking of u all .Keep thinking It’ll soon be summer and on our way to normality. Yeahhhh!!
Take care you are all such lovely ladies xxx
J xxxxx