Hey everyone - so a bit of advice/pep talk needed. Had a bit if a poop day today. Had a friend take my dd to school this morning as I didn’t feel up to it - felt a bit bad about that as it feels like I was giving in to it a bit.
Slept for a couple if hours, then had a shower and lost another whole heap of hair. I guess I’m struggling with the concept if do I shave it or do I have it to continue to mault? I know I’m thinking along the lines of not wanting to look at myself in the mirror with no hair, hickman line and fake boobs… but also wondering if just letting it shed is almost prolonging the stress a bit - plus it’s getting everywhere.
Sorry to rant on - lot more down this week than last cycle - wondering if it’s cos my steroids are more tapered this week?
Aww crazy times . We’re entitled to feel poop , the hair losing is a big big thing for us , there were lots in the bath when I hung over and washed my hair and I went into a Panic mode for a while too , sat on bed last night and could literally pull hairs out of my legs , it stinks the whole flipping process x my Hubby’s brother is popping over from Spain next Monday for a few days and I really want him to see me with my hair , daft I know ,so I’m hoping it keeps till then xx
On another note after yesterday’s ??time I feel loads better , but just took a chilli con carne out of the freezer for lunch as wants something tasty , will I regret it ???
Hi Crazytimes. I’ve been in exactly same place as you this week. ? I have lost what feels like 70% of my hair but my partner says it’s probably nearer 50%. It was coming out loads but is now slowing down. I am going to try and persevere with it for as long as possible or until the cold cap is too painful. Thinking of you all ?
Can I ask a random question? What is everyone’s diet like during this process. I’ve never had the best diet anyway tbf but since Chemo I don’t think I’ve eaten anything healthy! I spend most of the time not knowing what I want to eat let alone thinking of something healthy and two out of the three weeks my stomach feels very ‘delicate’. Xx
Hi Marie , I keep thinking I’m gonna be a stone heavier at the end of this ! Other than yesterday (cake ) I have eaten as I would normal , I have eaten through the sicky feeling pretty much as I did when I was pregnant , I can’t even say little and often as I have wanted good dinners , today I’ve had porridge , chilli con carne and rice and prob later gonna have peanut butter and toast , I’m not snacking in between but so far my appetite has t wained , other than yesterday ?
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Hello everyone. Day 2 Cycle 2
You all sound quite down due to diet decisions and hair loss. I think we have to go with what we fancy during chemo just to survive. I was on a really healthy diet following diagnosis which I intend to return to once I am feeling better. From reading the chemo survival book I have chosen a few things to eat for what they call the chemo phase which is whilst you are feel ill. My list is:
dry crakers
water melon with or without salt
plain crisps
tomato soup
apple and cheese
greek yoghurt
orange squash to drink
For the rebuilding phase which is usually week 2 and 3 if you are lucky: meals to include
chicken
fish
carrots
grren beans
avocadoes
sweet potatoes
pears
bananas
brocilli
aparagus - although the UK cancer research today have said that asparagus can progress breast cancer once you have it!
As for the hair issue I guess I am slightly different in the fact that I had to have my dreadlocks cut off before starting treatment as they would have fallen out one by one and been very uncomfortable and obvious. When cut off I only had an inch left. This inch of hair started shedding on day two of my first cycle of T and very soon I had bald patches. On week 3 of cycle one I took control and went Grade 3. Now I am practically bald but my head is too sore to shave it off. I just avoid the mirror until I’ve got my head gear on. I only wear my wig out doors as hardly anyone knows what I am going through. All I can say is that it is just hair after all. It is horrible that we have to loose our crowning glory. It is a real shock to the system especially when we are feeling down. My advice is take control of the situation. Hair falling out is scary and heart breaking. So dump the hair before it dumps you!
Today I had to go for a blood test to see how my immunity is towards chicken pox as I don’t think I have had it. My daughter is coming up in spots right before my eyes. Poor thing, Tonight I’ve got the first injection to look forward too. Last cycle my vomiting started after the first injection. I really hope it doesn’t this time.I will let you know.
in the meantime please try to stay smiling and swimming. Lots of love xxx
Shocked that’s awesome news…so happy!
Crazytimes…I tapered my steroids this time too and have just been through the darkest days since diagnosis! In fact worse than diagnosis and I’m blaming it firmly on the prolonged steroids!!
On the hair front as soon as my first bald spot appeared I went grade 4 and ordered my wig. Best thing I did so far because watching it fall out was pants and it looked rubbish anyway because I couldn’t do anything to it.
On a brighter note steroid funk is definitely lifting and I feel T round 2 day 7 like I might be on the way to better days for a week or two.
Starfire…I hope your little ones ok, it’s nice to hear you talk about food. Top tip ladies Marshmellow…gentle on the mouth, can taste them and they are known to settle your tum…no nutritional value at all though xxx
Thanks everyone. ?
Hi everyone,
I’ve had such a busy day and only just found time to catch up with what’s happening on here!
Well my hair is only just starting to fall out so it’s still looking pretty much the same. I’m guessing it will ramp up a bit after cycle 2 next week. Once it gets too thin or patchy I’ll be getting the clippers out, I’m more worried about losing my eyebrows and lashes than the hair on my head - and losing it anywhere else will be a bonus (no shaving = sweet ?).
My diet has not been great either, I blame that on the steroids as well! Week following 1st cycle I was ravenous all the time, and not for anything healthy unfortunately. More like cheese on toast and sausage rolls, but was completely off sweet stuff which is not like me. Thankfully my tastebuds are back to normal now, although water still doesn’t taste great.
Saw the onc today to discuss how I’ve been feeling and what sort of changes they’ll make to my meds. Gonna cut back a bit on the steroids (hope that doesn’t backfire) and get extra anti-sickess pills, one that makes you drowsy which I can take at night.
So I’ve got a meal out with friends on Sat before it all starts again on Tuesday, getting picc line put in on Monday.
? Amy ?
Morning, Day 3 cycle 2
Wide awake at 2.30 following a weird nightmare… the ones when you think you are awake and you are still dreaming. Anyone else having horrible dreams?
Strange pain in stomach and feeling slightly…only slightly sick. Last cycle I was in full vomit mode right now.
About black nails… it helps to keep your nails as short as possible to keep them clean and stop them from lifting off. Shocked your last comment made me smile.
Just checked on my daughter… totally covered in chicken pox… hundreds.
what to do now… read or iPad… husband wide awake too.
See you in the morning x
Oh no Starfire! I hope you managed to get back to sleep. It sux not being able to sleep, been there but haven’t had any weird dreams.
Lol Shocked; we can be the ‘Bald head, black nails swim club’ ???
Aliand that looks amazing !!! Better than my normal hair !!! I’m gonna practice xx
Looking good Aliand! I wasn’t keen on scarves but after seeing you I might give 'em a whirl!?
Since Aliand posted a glam photo I thought I would post a pic of me wearing my new Lion’s Mane. Dealdoh I hope you perk up soon, thank you for your words of wisdom… it means such a lot. Xxx BTW this pic was taken day before Chemo 1 ?last day of EMEND and still no sickness… worried it may start tomorrow?
Awesome pics ladies…All look so glam and healthy…
I just had to go in the loo at work and readjust my wig. Now thats a first
Is anyone using a sleep cap…keep waking on soaked in Hot Flush sweat with a freeziing cold head!!!
xxx
That’s brilliant Aliand , I want to know how to do pics , I only use my phone though ?
Your wig looks amazing too starfire xxxxx
We can rock this !
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Starfire and aliand ???looking amazing girls ???starfire hope your daughter is doing ok, my mum used tcp on me when I had chickenpox bit smelly but no scaring. ??
shi xx
Oh wow, your wigs look great ladies!! ??
Hi aliand yes tcp it soothes and is cool on the skin and didn’t dry like calamine lotion worked ok on me even though it stank, she used the bottle stuff not the cream. For tightness in arm caused by chemo ibruprofen gel and microwave heat pads work well. Get you arm checked out with onc team too just to make sure everything is ok and if you get any swelling or pins and needles in fingers ring the number lovely ???shi xx
Love the photos fellow swimmers you both look great. Will see what my wig looks like when it arrives if ok will try and post photo. Had 2nd FEC today and so far so good. Quite enjoyed my day in the Chemo Unit very comfortable and good lunch provided.