To have the op or try alternative

Hi take charge of it all. Either book to go short/buzz cut with your hairdresser or do it yourself. I did it myself as hubby has some seriously good clippers. Not fully shaved off as you want to avoid nicking your head. Seriously do not need an infection from a cut at the moment

Then rock scarves and hats. I bought some online and sent them back poor quality for me. I looked up on youtube wrapping scarves and found the one I could do easily and I liked. Got my freebie wig which was fine

Good luck lovely lady you certainly have had a time of it

Leolady56

Sorry to tell you but losing all your hair is virtually guaranteed with epirubicin (and its cousin doxorubicin). 

I agree with leolady - it's time to take control. My GP suggested that we buy a bottle of champagne and drink it while hubby shaved my head. We did and it was great fun - made an awful time into a pretty happy memory. 

I chose to go commando all the time as I knew I wouldn't be able to stand wearing a wig, I've always hated hats and the scarf thing just identifies you as a cancer patient. I remember seeing a woman with a shockingly bad wig some years back and hoping then that if it happened to me, I'd be strong enough to go out bald. Honestly, I never felt stared at or made uncomfortable and in fact people were quite lovely. I also got exceedingly good service in cafes and restaurants. 

Good luck with it all.

Hi all

Had my oncology consult today before next cycle. Bloods done so that results could come back for the consult. All good, so can go ahead with Cycle/dose 2 of EC on 12 October. The 1st one was at a reduced dose, the 2^nd cycle will now be the standard dose but may bring further side effects with it. Will deal with that if it happens. Now got some laxatives on prescription to deal with the eventuality of constipation again after Cycle/dose 2 alongside taking the anti-emetics. Oncologist ‘feels’ that boob has done well off the first cycle. Boob has reduced in size and the area surrounding the lesions have become softer.

The MRI for the breast I had done on 21 September has come back with an anomaly in the liver. When having the breast MRI it can sometimes pick up on the top of the liver and it is this top area of the liver that has this anomaly. They can’t say what it is so I have to undertake a whole body CT and an MRI again. Here’s hoping it is not metastatic and just a distortion bug in the MRI images.

Shedding hair like a good ‘un. Woke up to find lots of individual hairs on the pillow. Loads came out in the shower today, sticking to my hands, body, etc. Found two sizable clumps at my feet!  I laughed when trying to cover the bald areas with what hair is left (after drying and losing more hair) – I found more bald spots!  Oops.  And my sister thought I could go out of the door looking like that!!!!!! Haven’t taken the plunge to shave it short, yet. Relying on some being saved so I have a semblance of hair under the beany hat! Will only know the end result of hair loss when it happens. Curiously when in the waiting room for the oncologist consult I noticed the ladies wearing scarves! Really hadn’t noticed them before. Weird, eh!

Watch out for more bulletins!!!!!

Love and hugs to everyone

Hi Ladies, and gents

Well it is Day 5 of Cycle 2. Still shedding hair – haven’t had the cut. Funnily enough I had it on my TO DO list for a hair cut before I started losing hair – don’t need it now! Hair loss started like a Friar Tuck! Has now extended down the back of my head and into the sides. Thinning like a good ‘un overall but I STILL HAVE FRINGE, AROUND THE SIDES AND THE BOTTOM OF THE BACK so when I put my hats on (which I have now received) I still look semi-normal except for the fact I could look like a ‘mad woman’ walking around in this weather with a hat on! Sister likes the hats I have chosen so one good thing. Some tough little hair beggars hanging on in the bald areas – would you credit it. Only small amount of hairs found on pillow now – wonder why! Wear a hair net on me head to minimise shedding everywhere and always have a hat by my side if anyone calls at the front door! Gave fringe a very small trim yesterday.

NB – 1^st cycle it turned out was the standard dose – 150mg - not the 75mg/M2 reduced dose. Not what I was told at oncology consult nor has my booklet been updated! Will bring this to oncologist attention. Next chemo cycle 2 November 2018.

‘The C Word’ came up on another TV channel which I almost watched again, fully (fell asleep for goodness sake) but not before I watched the part where Sheridan Smith/Lisa Lynch hadn’t washed her hair for 2 weeks! When she did most of it had come out in the wash. When washing my hair I was getting loads out and all over my hands so haven’t been washing it as regularly. WILL wash it tomorrow though. I’m putting all my hair loss into a jug for time being until it does all fall out – if it does.

Healthwise – I am good. None of the expected side effects from chemo. Haven’t had a motion today! This is because I had a normal motion on Saturday morning but I did take the Movicol (mild laxative) on Saturday morning and had an explosive diarrhoea poo later on! Had a smaller motion a couple of hours later. Sorry to be so blunt on this but this is something I thought you might want to know with this medication so I didn’t take any more Movicol on successive days. I did go normally Monday so really not so long between ‘normal’. So today at 1pm have taken the Movicol and NOTHING! Will do another one this evening, maybe – 2 a day they prescribe. A little shaky when I get up in the mornings but this soon disappears when I walk about.

Tomorrow I have a CT scan to see what’s happening in the liver, mainly, but it is all a whole body scan. Wonder if I can keep my hat on! Will choose one that doesn’t have any metal or plastic adornment. MRI booked for 24 October. THEN we shall see what’s going on inside me.

Boob – still some aches as tumour/s pull on normal breast skin. Dexamethasone helping here but I take the last one today. See how we go. Have noticed some nodules appearing when feeling the boob just under Lesion 1 and in the crease area below the boob. Don’t know what they are and just wondering what they could be! Doc aware of 5 nodules on crease below boob which is why I am having the scans as well. I don’t think there is much difference in the boob from the end of Cycle 1! AND the appearance of the nodules a bit worrying. Still the CT scan tomorrow and the MRI next week will say what they are. Next consult 31 October to get answers.

Other than the above, that’s all I am experiencing with chemo. Don’t like losing my hair but resigned to it. Watch for more bulletins.

Love and hugs to everyone

fingers crossed for your scans

Carolyn

xxx

I had to play around with the laxative dose to get comfortable bowel movements. Preferred diarroeha to constipation though! 

Well people, had an ‘incident’.

Got up to go for wee 12.50am Tuesday night/Wednesday morning ostensibly to go to bed afterwards. Did the wee and sorted out my clothing. All of a sudden I was shaking violently in the legs, body and arms, was unable to continue to stand and had to plop back down on the loo. When I ‘felt’ I could get up again I fell onto my knees. I tried to get up again when I felt I could but again I fell sideways onto my back and just laid there, still shaking. I stayed there for a while still shaking but calming down. This took almost 20 minutes overall. Was able to get up and finally go into bedroom. Sat there trying to take stock. Didn’t know what to do! Thought I should ring ambulance or chemo nurse but where was my card – in my purse downstairs. So downstairs I went. Rang chemo nurse. They couldn’t say what happened. Will get back to me. Came back and said I need to go to A+E. Rang my sister to take me. She arrived 1.45am. Packed a bag just in case but had to go up and downstairs to get things. Tiring. Arrived hospital and taken straight in. Blood tests – neutrophils reading 22, urine test was normal which I cocked up first time trying to give, drink water, and finally went and achieved the sample, ECG, chest X-ray. All came back normal. Had a drip of plasma to make me ‘go’ but water was the best. They were going to give another infusion of drugs for urine infection but this wasn’t needed as it turned out clear for this. Left the hospital at 6am for home, finally. No treatment needed. So what was all that about!!!!!

Was as weak as a kitten next day and wasn’t fit to get to hospital for CT so rang and cancelled but organised to have CT on day of MRI scan. Spent most of the day in bed sleeping. Today I managed to get a shower and washed my hair, still losing it. Still trying to get back to normal – whatever that is now!

Absolutely shattered and have no sparkle. Staying close to home. Has anyone else experienced anything like this? I recall a scene from The C Word where Lisa/Sheridan couldn’t get out of the bath! You watch/learn things but you really don’t truly take it in until it happens to you. What a gift this chemo is!!!!!!

Boob – has been hurting since. Taking the Paracetamol daily which is stopping this but how long can I take it for? Chemo nurse says to take it when it hurts! Just what is happening there? So many questions! Rang yesterday the chemo nurse about the Filgrastim injections I should be taking every evening. They say not the cause of the collapse BUT it happened 1 hour afterwards Tuesday night. I quoted the 22 count for neutrophils. We agreed not to take the Filgrastim until they could get the results from the A&E I attended. Supposed to call me today – no sign yet.

Love to you all.

what a nightmare !

at least you got checked out and all seems okay for now

I found that the BCN wasn't that up to speed on all of the side effects I experienced 

Chemo is incredibly toxic so I'm not really surprised that we have reactions to it. 

I was always cold, wrapped myself up in fleeces and ugg boots and then had two peel layers off if my temp went up.

Good thing your sister was around !!!

hugs

Carolyn

xx

 , how upsetting. big hugs xxx

Some of the side effects of chemo come out of the blue and the team just look at you blank ! If you were deeply asleep when you got up you might have dropped your blood pressure …..there is something called " micturition syncope " where people feel faint ……( so many things have got nice complicated names !!! ) ...but it is reassuring that you were checked over and nothing found …..after all , you were trying to avoid this nasty toxic stuff …...lets hope it is being as nasty to the critters as it is to you …...best wishes …..