My posts have done the same all day pain in the A..e Glad today went well for you, just had my locks chopped off. Cold capping too tomorrow. Hope you keep feeling well. X
Won't write much as all my posts have failed today. Glad the cold cap was ok. Just had a Sharron Stone haircut (although I think it's more Jo Brand). So now I am cold cap ready. Hope you continue to feel well and do the Uni visit on Friday. X
Just wanted to reassure anyone considering the cold cap that I just had my first one today and it was not a problem for me at all, though I realise everyone is different. It was bearably cold for about ten minutes and then I noticed it so little I was actually concerned it wasn't working. It didn't stop me eating, drinking, reading, talking to the lovely nurses and only added a bit to my time in there - when they took the cap off it had indeed been working because there was ice all over my head, but by scalp was numb, so I hadn't felt it. Now at home just feeling a little tired and full of steroids which are giving me a marvellous appetite. Having considered fasting as per the articles going around, I can safely say I don't think I could bear it; my body wants to eat and eat it shall! Good luck to everyone in the days ahead - the nurse has given me the go ahead to travel with my family to Exeter (I am in Kent) on Friday to visit my son's prospective university. She said the best approach is to assume you can do things as normal and just play it by ear, which seems good advice.
Aarrghhh! The test post went through fine and then I wrote a long one and it didn't work!
So - quick update and I'll reply properly later
My first chemo went really well, even the cold cap was ok. Starting to flag now. But touch wood no nausea yet, fingers crossed.
I keep telling myself that it's just hair. I've got long dreadlocks and even though menopause did me no favours
thickness-wise , i've still got more hair than most.Now faced with losing it i realise just how much it contributes to my identity. I love my hair not for 'wow look at me 'reasons but because after my marriage to my ex husband broke down , in the face of his relentless nastiness , how i presented myself to the world was the one things that i could control and he coudln't. My hair is also one of the things people know me for.
I haven't told my children about my diagnosis, don't feel able to.They live in England and i'm in France so distance and what's going on in their lives plays a part in that. We Facetime and use Messenger . I've been moaning about the effects of menopause on my hair for ages so now like the world's greatest actress in preparation for hair loss i've been talking up going for a totally new look this year !
I rocked a shaved head for years before i grew my dreads so seeing me with a shaved head won't be new to the kids, although bald might be ! My grandchildren have never known me without long hair so it's hard thinking about hiding it from them , but that;s the choice i've made.However, i've been looking a diferent ways to tie headwraps on Youtube and also how to make a wig. My oncologist said she can give me a prescription for a wig. I'm black and lovely as the area i live in is it's not very multicultural nor is it a buzzing metropolis. The oncologist's face was a picture when i asked her if there were any wigs for black women :)) A stuttering "Non'' was/is the answer.
I'm hoping that i can keep most of my eyebrows. Thanks to my dad, i inherited thick very dark ones. I'll look a proper sight without them Honestly, for someone who\s never been bothered about make up apart from wearing lipstick and putting on some mascara for going out, cue more watching Youtube videos on how to draw on realsitic looking eyebrows.
Someone a few posts ago decribed this illness as a total headf*ck, i can't think of a nicer way to put it 🙂
Trixielady ..If you feeling good go for it... it’s such a headf...k! The whole thing 🤯 Seeing a good pal to talk to can put us back on track and somewhere inside you need to ‘escape’ and get different perspective .... if you got another 200 miles in you do divert to Oxford and come to my girly shed lol😂 This is a time for us to do what we need to do to survive😍Although after just talking to my sister who said she’d take her chances and not do it in my position hasn’t helped my wobble. Just took puppy for second vaccination and started crying in the vet! Feel such a wimp. The puppy was yelping and crying in pain and was shaking .. I couldn’t handle it! Then I saw a woman in car park in her bandana.. she looked serene! And had at least 3 big TK Max bags lol. And my daughter went back to Uni today and husband left for Germany so it’s me and Bonzo🙃
If you feeling good go for it... it’s such a headf...k! The whole thing 🤯 Seeing a good pal to talk to can put us back on track and somewhere inside you need to ‘escape’ and get different perspective .... if you got another 200 miles in you do divert to Oxford and come to my girly shed lol😂 This is a time for us to do what we need to do to survive😍Although after just talking to my sister who said she’d take her chances and not do it in my position hasn’t helped my wobble. Just took puppy for second vaccination and started crying in the vet! Feel such a wimp. The puppy was yelping and crying in pain and was shaking .. I couldn’t handle it! Then I saw a woman in car park in her bandana.. she looked serene! And had at least 3 big TK Max bags lol. And my daughter went back to Uni today and husband left for Germany so it’s me and Bonzo🙃
I replied to another post just now... stupid site wouldn’t let me log on all morning!
The stroke story is scary! My best friend asked was I going to work today?! He was relieved when I said I had the week off!! Just sitting in bed today maybe go swap the bed for the sofa later. He’s v depressed today wish I could go and see him but equally I can get too much for him so he’s probably glad I’m at arms length for a few days.
Porridge has just arrived... seems steroids are keeping me awake and energy required!
Sorry only just been able to log in!
Barely slept kept waking up sweating and worrying about my temperature. Spoke to the nurse who says I’m reacting to the steroids and to see how I feel tonight, go to GP if still struggling to sleep. Don’t really feel sick more hungry! So a bit tired but just from such a restless night. Taken my pills - no injections until cycles 4-6. Spent all morning sending my unflattering cold cap photos to people!
So far had toast and porridge is currently on order...!
Go and enjoy. Mind I am a good one telling you that. I just had a discussion with the Lymphoedema nurse who said I had been doing too much. But we all want to be normal!! So need to rest a bit more oh and damn and blast wear the sports bra to bed again oh the pain!
Good morning Trixielady,
Thank you, I am definitely resting! It is the first time ever 😁
Thank you for the recommendations too, I will definitely try them xx
How are you too? Xx
Hi Sissy60, I'm fighting with myself at the moment feeling body healthy but head storming, so against everyone's loving advice I feel l have to drive from Durham to Pontefract to spend a couple of days with my best friend before dreaded chemo number 2 all packed and ready to go this bloody thing !! I just can't let it take hold of my brain xx it's only 94.1 miles
Hi Ally2019 and everyone else
Feeling much better today thanks☺
Well it finally happened today, I've turned into Sherlock Holmes🔎, down on bended knees peering .into the shower tray counting hairs.😖. Yep definitely 4 and definitely mine☹. So day 11 since chemo and cold capping, and just starting to shed my short locks. Must remind myself that even with cold-capping I will lose hair , just no too much please. Funnily enough I had call from Wigs4you to process payment for a wig I ordered (by post as VAT form had to be done), so that should arrive today or tomorrow.
Have a good day x
i couldn’t have put it better. It’s how they left it to me to decide and I have done lots of research and it’s a case of knowing both sides and both are unwelcome! I know doctors as pals too and it’s almost too much combined with me being an anxious freak anyway🥺I was told no chemo almost from start so it did hit me hard...only because of borderline oncotype score was it suggested which gave me 81% chance of no recurrence but what if you in the 19pc?!! And it’s just statistics in the end... and we aren’t that are we?! Came to the decision but now I’m doubting it bigtime and thinking maybe just eat broccoli and run up hills🥵take my chances ... but as you wisely say it’s the onwards journey after we look to. You sound like you’re doing great and give courage to this cowardly lion! Xxxxx
Right, that seems to have worked!
wanted to say I am now day 5 post chemo and feeling loads better. Chemo day was a breeze, whatever they put in the drip bloody works, I literally skipped out of there! It was around 2 hours later it hit me, but I will be talking to my onco ref tweaking meds, I will also be eating a lighter meal after chemo, a thick veg soup and whole meal roll was just too much I think...
so to you lovely ladies about to embark on this trippy trip it's totally do able, slowly slowly wins the race, even if you think your up to doing stuff think again, you mustn't put your body under undue stress, I did manage 2 short walks yesterday a day they did me good but they did knacker me out!
Isnt it odd odd how something so enormously scary can bring us altogether, I have been reading all your threads and feel I know you well, true friends......I think we are bloody fantastic xxxxxx.
The sensitivity of this site is a real pain. Any typos are so hard to change as the curser jumps all over the place. I have lost loads of posts. Also find they get lost if you press your back button even if you have already posted. So I now tend to go out and then back into the app after posting. Better luck next time
Morning Ally2019, pleased to hear your 1st chemo went OK, I found that mints, pineapple, ice lollies, baked potato and cheese beans also helps, got a really red face from the steroids by the end of the 2nd day, make sure you get plenty of rest xx don't forget if you feel unwell check your temperature xx big hugs xx
Morning gorgeous ladies,
i have just written a monologue and it went to the ether! So this is a quick test to see what happens now....xx
Sorry I am reading downtown the posts, not a good idea. Yes it's very hard to deal with the whole hair issue. It's such a big part of out identity. I have always kept my hair long too. Earlier this year pre diagnosis I thought a shorter cut would be more suitable for a woman my age .(64) soI cut it and was sorry almost straight away as I justcould not manage it. I have arthritis in my hands so find below drying very difficult so I love heated rollers but of course it was too short. So I have not cut it since and not had it coloured since September. So at 4.30 today the blonde locks will be replaced with grey spikes. I hope you don't find the hair loss process too upsetting although that sounds really stupid because why shouldn't you be upset. It takes a while I think to come to terms with the ravages of this bloody illness, most of the time I try not to think about it, and that's why my boob and underarm are playing up. We can't afford to be complacent with anything or it comes and bites your arse.
I am glad that your session went well yesterday. Mind went well too 🤗
I agree about the cold cap, it was awful at first then I was ok too.
I felt a bit queasy too, one minute my month was dry, then it was watering. I found having loads of water then mints helped me.
How was your night? Mine was fine, I just took my streroids and will take my anti sickness tablets too and rest 😁 xx
Good morning Trixielady,
How are you today?
My daughter is 21, I can only imagine how your parents must feel. It is very hard for family, I haven’t told all of mine yet, now I’m one step closer to being better, I will brave telling them this week x
I will speak with my oncologist, she is brilliant. The bizarre thing is, she was my dad’s oncologist too. Imagine that lol, so shd knows what my sister in law is like. That’s why my whizz the start my treatment was very quick xxx
Thank you for your support, I’m sending you and your family a huge hug xx
Sissy60 , I know how you feel, it's so difficult trying to weigh everything thing up, I'd thought your knowledge would have helped but I suppose it's like they say do as I say not as I do ! It's my 2nd on Monday but although in the space of things it definitely hasn't been as bad as I thought, it's not just having chemo the issues are with is it ? It's knowing the long term issues , the reacurrance, for myself I hate not working they say Becareful what you wish for haha always fancied some time off but not like this, I totally totally feel as though I'm wasting my time to scared to get on with normal life incase I feel unwell, lack more energy it's all just a mess then I try not to stress or listen how bad it has affected others. Xx big hugs xx
Hi MBJ, my hair was long and dark but a few weeks after Diagnosis I took the bull by the horns and beacme proactive and had it dyed dark cherry and cut to neck level and have hated it every since haha until yesterday when it started to want to leave me of its own chemo free will xx
You are right because I have had good movement and keep busy I have not been doing my excercises only stretches when I am in the shower. I will go back to doing them thanks for the advice.
Oh this site is so sensitive when typing 😮
Morning MBJ, have you continued doing your arm exercises? Because my starts every time I forget or stop,
the pain in my arm and mastectomy area always became worse when I started the white blood cell injections but I realised it was because I'd stopped exercises although I thought I had full movement xx
I know it's tomorrow for you I've been keeping an eye because your waiting seemed so much longer hopefully today will go quickly just keep busy and than tomorrow will be over before you know it xx big hugs
Thanks for the good wishes I am tomorrow. I know what you mean by not being able to take the shave plunge. I was going to do it but now am going to hopefully cold cap. I am having a short hair cut (like Judy Dench) this afternoon as in the end I just had to try. Whether I will be able to cope with the cap I don't know. I had a hold of it yesterday it's really heavy and looks like something a person would wear in the electric chair.
As if starting chemo is not enough, my underarm area where the bra side sits has swollen up. It was like it after surgery but had improved, and my are is a bit iffy too so probably lymphoedema. Going to ring the clinic today as need some advice. I do .have an appointment on the 28th but it was really uncomfortable last night. I think I have been overdoing it a bit. But I just wanted a normal week before chemo started. I hope it will settle down as I know there is very little that can be done about it and it's a life long misery because that's what it feels like miserable. Even my coat felt tight yesterday. Oh the joys.
I hope you come a a decision you can deal with soon. Is your hair short now anyway or not?
Morning Edinbird , hope you did eventually get to sleep? how did your first day go? I had all my vomiting on my first, then strange things started to follow the odd pain, dry mouth, no taste bubs. Have you been given any injections to take or other medication ?
I know it's not good being told you can't go swimming, I'd gone after my mastectomy and before chemo tried to carry on with exercise but my CNurse said walking only has you need your energy. I also found out about a friend of a friend 34 years old who had a stroke because she's gone home the day of chemo and started decorating , the doctor had said she'd stressed her body out, so Becareful xx
Morning ladies good luck for today keep smiling and all will go well hopefully.
Well 14 days and my hair is definitely on the move, now not sure what to actually do about it as in my mind I'd decided to shave it ! Taken advice from the other threads which is to shave it but I'm struggling much more than I thought with the idea of shaving it xx
Re bowel issues!! I had it both ways, constipated at first, due to steroids, then it he opposite a few days later. This only happened in the first cycle. I was also prescribed Maxigol/Laxido which keeps you regular! If you do get diarrhoea make sure you keep an eye on your temp as it could be an infection. Kxx
Morning ladies & Gents, I've just had a thought I'm not aware if there are any men using the thread because we all use other names, well the majority do, so please if there is we're here to support you so please feel free to make yourself known xx
Aw love the cartoon! 💕
Went to sleep for 30 mins woke sweating so took off a layer did temp was still fine but now stressing about sleeping again... chatting to my bestie he seems ok today. Someone drew a Hitler moustache on a Marie Curie collection box in one of his local pubs!! Ffs.
So need to sleep but waking and sweating is normal for me anyway so hopefully I’ll go off soon. Wrote a quick poem (he does rap/hip hop so I sometimes write too) and hoping that’s cleared my brain.
Onwards to day 2!
It really is helpful to hear how well everyone is coping
I'm less nervous now than I was a few days ago, just ready to get on with it now
Great cartoon. Will be thinking of you tomorrow... be good to get number one crossed off👍🏻Sleep well xxx
I’ve only just looked at todays messages and want to wish you all the best for tomorrow.
It’s an anxious wait I know but when you are there it will go quickly I’m sure.
On a positive note I have felt almost ‘back to normal’ since Tuesday last week, a little more tired than usual but apart from that I’ve been out every day even watched my daughter play golf all day yesterday something I didn’t expect to be able to do.
I wil be thinking of you tomorrow xxxx
Yay Edinbird, sounds like you took it like a champ!
Hope you have a smooth night
Here's my plan for the next few days 🙂
I am glad your first treatment went ok., also that the cold cap was tolerable. First on for Mr on Wednesday same FEC. Hope you have a good night. Take care. X
Just finished updating my family and watching my baby nephew have a bath on FaceTime 🙂
Cold cap was a breeze didn’t feel it after 10 mins. Didn’t get much of the back of my head but looked like a ribbed condom from the front afterwards!! Needed to contact my scalp at the top well and if I lose underneath it won’t be obvious.
Sore getting the drugs especially the third one which is F - got a pain in my forearm and a bit of swelling but it went as soon as the cannula was out.
Felt a little queasy a couple of times and been to the loo once since I got home. Soup and a toastie eaten fairly slowly!
Going to bed now, feel anxious about laying down and have to be up to call the sick line at work in the morning but I can just stay there after that if I want! Three lots of drugs to take for the next few days.
So overall - I can handle treatment day just gotta see how I go next. MRI scan on my liver isn’t for 3 weeks so maybe not as urgent as they made out? I’ll have had cycle 2 by then!
Great photos though, especially the underwater ones. Really cool!
I miss swimming SO much, I used to go every day, haven't been since before my initial surgery in January, and I'm not allowed to go again until a month or so after the end of chemo, apparently. Sob!
Hoping to get back to the gym sooner though, if the doc let's me. Until then, lots of walking.
Today has been odd, just moping about getting my head straight for cycle 1 tomorrow. It was really weird putting on nail varnish as usually that means I'm getting ready for something fun! A hot date or night out. Not ..... something that probably isn't going to be very much fun at all 😕
And it is the first time I've painted my toenails since I was about 15. I must have been much more flexible in those days!!! I don't remember them being so hard to reach 🙂
Good to read a couple more updates of people doing well, that's so encouraging for those of us yet to start, thank you!
Edinbird, how's you? Hope it went well today
I followed the link.... There are a *lot* of photos in that album. I saved rhe closest I could find to "wild hair on the left", but now the forum won't let me upload photos like I could before. Maybe it's playing up tonight.....
I have a feeling that Facebook isn’t allowing me to share.