Hi Tbird, I hope you got a call back and you've managed to talk to someone to get some reassurance and empathy with what you're going through. I know what you mean, sometimes even with lots of people offering to support us we need the right person to talk to when we're feeling low who knows what to say. My husband drove me mad yesterday, he doesn't get it when I just burst into tears with no warning. Bless him, he's so good in many ways but us ladies know it takes one small thing to trigger those dark thoughts. Sending hugs and good vibes. xxxx
sorry it is your weird tingly sensation with you nerves on your PICC line, rest assured I'm over my panic now ha ha. I know all about nerve pain so you have my sympathy and I hope it's not too bad. Everyone on this site is allowed to say what they want and vent if need be I just got a bit nervous.
I had my 3rd chemo today (my PICC line will be put in for my next chemo) and a couple of women next to be had PICC lines and they are so happy they have them. I'm just nervous cos my signature song is "if there's a wrong way to do it nobody does it like me" but I have my big girl pants on now so I'm going to smash it.
on another note I have booked for reki in January at my local nhs, so looking forward to that.
ive been so low last last few days I have loads of people to talk to but feel I don't want to upset them with my dark thoughts. So I've phoned the breast care nurses to see if they can recommend someone to talk to. Call went to answer phone so I'm not going to hold my breath to see if they call back (they were supposed to come and see me when I had my last stay in hotel nhs but didn't make it).
hope everyone is keeping safe and well
love Tbird xx
Hi Lou, although I have gone to a no3 my scalp doesn't feel as sore and so feel much better. The maggies centres are brilliant. They run all types of different classes, yoga, relaxation, counselling etc. They are also extremely peaceful places, you can talk or just sit quietly. As unlike hospital as you can get.
Hope you feel better after shaving your head Harkes. Bizarrely I felt so much better and am getting used to my baldy head look now. What are others using to moisturise? I used my Simple moisturiser this morning. It does feel lovely to massage in and doesn't seem to be as sore any more.
I'll get booked into a Look Good, feel better session in the new year at Maggie's. Have heard really good things about these and not been to Maggie's before.
Hope you're feeling ok today juzcooper? Take care over the next few days and hope the side effects aren't too bad for you. xxx
Sorry to hear you have been feeling down tigerlilli, I have been the same these past few days I think it must go in cycles just like the chemo! I have decided to brave the shave and my daughter is going to do it tomorrow, Although I still have quite a bit of hair I have got big bald patches and the skin is getting dry. Daughter says she is going to go for the Annie Lennox look - mid 80's. The reason I have got upset about losing my hair is that for the biggest part of my life - 30 years I always had short hair and just before last christmas decided to grow it, it had just got to the right length for a bob when I got my diagnosis I am going for my 3rd cycle on Friday and just keep thinking half way through. Am booked on look good feel better course at my local maggie's centre in february - looking forward to the free goodies. Wishing everyone the best for christmas xxx
Sorry didn't want to worry you and I'm sure it's fine for most people. It was just the weird tingly sensation I didn't like from the PICC line causing the nerves some bother which I got again when it was redressed. I think the nurse implied they'd not used the best dressing either so it felt better once it was changed. Usually PICC lines go in fine, it was just me (as usual) they had more bother with so I suspect that's why it made me feel icky about having the dressing changed. I'll get used to it I'm sure ... x
Thanks for that I did get a bit worried when I read Lou's text that it hurt - I must have got the wrong end of the stick.
does having the dressing changed on your PICC line hurt, I'm having one put in soon and didn't realise it couLd hurt afterwards 😱.
And if any of you are Billy Connolly fans and missed the documentary on him last week, it's well worth a watch if only for those hilarious clips of him dancing naked all over the world even in the Arctic! I've stored these up to have a giggle to myself when things start to get me down again. I mentioned to the nurse the other day that it was taking my mind off the pain of changing the PICC line dressing. Her "Do you want me to talk you through what I'm doing?" Me, "No it's fine thanks, I'll look the other way and think about Billy Connolly dancing naked!"
Aw really glad to hear that Tigerlilli! Will look up the sparkly pants, great idea Holeinone. My wig was slipping earlier and now realise the straps inside had loosened - no wonder it felt like it was about to blow off my head Saturday.
Has anyone been to one of the 'Look good, feel better' pampering sessions yet? I might book myself into one in January to give myself a boost, though my lovely niece wants to give me a masterclass in eyebrows. Never before have I been so interested in makeup.
Shire horse legs - ha ha love it! We're all with you on that one Tigerlilli, I'll have to try out my new Ladyshave later. x
With you on the shire horse look, I'm quite annoyed that over the years they haven't thought that ladies having to go through hair loss would really appreciate not having to shave those stubborn calf hairs, they should put something in the mix, so thoughtless
Oh, I had wig slippage the other day, I bought a couple of those wig caps from ebay, think they were just over £1 delivered, but as I now have wisps I thought I would be OK without and just the wig. Wrong! Kept tugging at it and adjusting it all afternoon while we were out walking. Really thought at one point it was going to ping off my head and into the nearby river, where I would be left standing balder than Rab C Nesbitt on the bank, screaming!
Oh Tigerlilli, so sorry you are having a wobble. It's understandable, not just with our diagnosis but also all these drugs we have going through us.
I'm still so grateful for your power words earlier in the month and found these sparkly tough pants languishing on another thread (I've only borrowed them, honest!), they get handed out on the forum when ladies are down and need a bit of a lift. Not sure if they pull tummies in but they have deep pockets for us all to hang around in there with you and keep you company.
Feel free to try on in the comfort of your own home and thrust one fist skywards xxx
So sorry to hear you're struggling. Keep strong, you're doing great! It's so hard dealing with others and how they want us to feel / look. My husband is very supportive but I feel like I'm trying to manage his and other's expectations constantly. I too am usually positive but can imagine coping for as long as you have and 'keeping up appearances' is exhausting. We all need to be allowed time to let our emotions out. Sending hugs. xx
Sals, I cry at slushy films all the time anyway, and remember soon after diagnosis I took the kids to see the Incredibles 2 and was weeping at that - I must have been the only one! Think I told the kids I'd got something in my eye. Polar Express set me off yesterday evening, that lovely song in the middle of it had me weeping again. x
I don't really like wearing my wig as much and my daughter actually prefers my bald head right now which is clearly not practical in this cold weather. I still can't quite believe it will stay on my head in windy weather either, so Satruday's wild weather was testing.
Take care all, let's try not to too tough on ourselves at this time of year when it's stressful enough anyway. xx
I'm back on an upward curve again after chemo 2. Apart from a really nasty reaction to the 1st and 2nd injections again (awful stomach cramps and bone pain in lower legs and pelvis) I found the other 5 ok but I changed to doing them in the morning from the evening. My oncologist / nurse / pharmacist can't explain why the first ones were so bad but this happened last time and I wonder whether it's just my body's reaction to having them again, who knows ...
I'm pleased with having gone for the PICC line, but it jangled the nerves in my hand a bit and after a week of tingling sensation in my fingers of my right hand this has now eased. The nurse was lovely who redressed and flushed it out Friday and very reassuring to keep my arm moving as normal. So if you do have one fitted and it feels a bit weird the first week, please don't worry it will ease. I got a cover and a waterproof tube thing for washing. Apart from not sleeping as well because I don't want to lie on that side, it should really help with the chemo. It just felt like a bit of an ordeal at first and there were tears.
I have the same issue with leg hair, it's just not going ... even bought a LadyShave with some money I was given for Christmas, which will now be hilarious if it all drops out tomorrow!
My husband shaved my head (he thinks he should now be a barber!) I'm now quite pleased with apart from being called 'Egghead' by the kids. I only wear the wig out, or my bamboo headscarf with a bobble hat over it, but then a variety of headscarves around the house.
Hope you're all coping ok? You're all doing amazing, we can do this ladies! xxx
Sending hugs your way Tbird, Liloc and Clarabella, think the ranting and crying will continue to come at us in waves as we continue our way through this journey but we are all in this together xxx
I'm about 10 days post 2nd round and very achy in my chemo arm, and in certain places all over, wound site and chest in general. Not sure why and obviously paranoid about what is going on
Taken a bit longer to get my stomach and bowels (apologies if TMI) back on track after round 2, but I really don't want more medication to sort the side effects out, not sure what to do. Keep having massive drop outs in energy this time too, think I really was on adrenaline first time around!
Lower leg hair hanging on, what is that all about, do the decent thing and drop out like the rest of it!!
Keep going ladies x
Don't worry Tbird, moan away.
I was very weepy before my second and I think I will as number 3 approaches (new year's eve for me - rock'n'roll). I was talking to my sister about it and she can be like the voice of reason at times. She described it as being a bit like the time she went to Alton Towers and on one of the rides where you get plunged from a great height into a hole - she's scarred of heights. The first time you don't know what to expect so you just go with it, you don't enjoy but you get on with it. When she went on the ride a second time at her friends instance she knew what to expect and she absolutely hated it.
For us, each time a chemo date approaches I think we get reminded of how rubbish we felt after each of the previous ones and not enough time has passed for us to have forgotten. It's understandable that really we rather not feel rubbish thank you very much and to deliberately make ourselves feel rubbish - well who would sign up for that if they didn't have to.
sorry to be a moaning ninny but the last two days I can't stop crying I don't know what's wrong with me. I will be have my 3rd chemo Tuesday, I had my blood test yesterday and as they were taking my blood I burst into tears for no reason and can't seem to stop 😭😭
Am having my first proper wobble. Day 9 post chemo 2 and my head hair has decided that today is the day it makes a break for it. I know I should feel lucky that until today I've really not lost any (I've cold capped both times), I just wasn't expecting it to start and for it to come out as much as it has today. What's really confusing is that it has stopped coming out else where which has left me with some interesting topiary in places lower down!
I had my hair cut short for me (from mid back) to a longish pixie before I started the chemo in the hope it would help. Maybe it'll stop shedding maybe not. Maybe I'll need to get the razors out. Might have to get the wig purchased before Christmas.
Ok, rant over. Hope you lovelies are doing ok. Deep breaths.
Don't want to pi@@ on your chips but I think you have lost a cycle amidst the chemo fog??? If I recall your a few days behind me so your half way through and have just finished your 2nd cycle. I did exactly the same in my diary, missed a whole cycle out🙈
I started cycle 3 yesterday so double dose of Tax & Carb and feeling ok. Off to the panto tonight so I've given the hair piece a good old brush! At least it only takes 5 mins to get ready these days 😄
I've noticed a few spots on my scalp. I usually get a few spots weirdly when I have my hair cut so could be something similar for me?
What lotions are people using for their scalps, advice p!ease 👍
Hey lilco, the markers are pretty much the same as the biopsy, they're just dropping something in rather than taking something out. Very quick and not painful. They'll probably do a quick mammogram as well to make sure they're in the correct place.
Hoping all you other others chemo warriors on here are coping well and are well enough to enjoy your Christmas dinner ( those on steroids probably more than those that not! 😉😄)
Take care Lisa xx
Hi Tbird, glad I was able to give you some reassurance about the PICC line and able to ease your worries a bit. I wouldn't say I've got a particularly high pain threshold and I found the procedure ok. I think they might have numbed the area first, I'll have to check with my daughter.
It was a bit of pain sometimes having to have it flushed weekly, but on the other hand I found it quite reassuring to be seen regularly at the chemo unit. It's useful to buy a plastic sleeve for the shower as you can't get it wet. I bought mine at Boots for about £5.
If there's anything else I can help with, just ask or you're welcome to message me xx
thank you for your reply, it has helped me put my mind at ease. I haven't got a date yet when I will be having the PICC line but it will be before 8th January as that will be the date for my 4th chemo.
its good you were able to have your daughter with you to keep you distracted, I will have to ask if I can have one of my sisters with me.
love TBird xx
I too had my last EC yesterday #3 and will be starting T+ Herceptin in the new year although have to change hospitals as my local one doesn't do T, at the moment been told they are at full capacity on the 3rd and will have to defer it a week unless my oncologist says otherwise...waiting to hear from her 😧
Feeling ok today managing the nausea just have a sore arm.
Hope you all have a good weekend xx
Hi Tbird, I'm from the Oct '17 thread and just wanted to reassure you about the PICC line. I had one when I had chemo and I was really anxious about having one, but it didn't hurt when it was put in. I was allowed to have my adult daughter with me, which helped to keep me distracted. When it was removed it took no time at all and again I didn't feel anything. When are you having yours fitted? x
i will be having my third Fec next week also, although it's now only EC I'm having because of side effects. I will be starting T in January.
My veins are so sore from the chemo so I am having a PICC line put in for the T. I am such a wozz and am terrified of having the PICC put in, any advice ladies, does it hurt.
i am terrified of everything but am pretending to family I'm fine, I suppose a lot of you ladies are the same.
have a lovely weekend Tbird xx
Hope you’re all doing well.
Im off for FEC round 3 this afternoon 😨 but thankfully this will be the last FEC for me, the halfway point before starting T in the new year.
Tigerlilli, I want to thank you for what you said about thinking of chemo as a friend that’s trying to cure me, I’ll hold on to this thought over the next few days when (or hopefully “if” 🤞) I’m feeling dreadful. Xxx
Hi Ladies, managed to crawl my way out of chemo fog land!
Tigerlilli, thank you so much for the virtual hug, you helped lift my spirits when I was stuck down there in a pit of dispair. Although I don't wish this on anyone, it really is comforting to know that we are not alone, we can do this as many before us have done. I take on board your positive way of looking at your chemo treatment, it's a good outlook to have. Oh, and you are not alone with windy issues, I've never belched so much in my life, it's not pleasant! xx
Sals, so very sorry you have discovered another SE that results in more meds and stays at casa NHS, hope it is all plain sailing for you from now on.
Have to agree with Po, no way could I work through this, I'm out for the count for a week after each chemo (FEC) but happily this time have not been up all night with sweats after getting the liquid intake up. Hats off to ladies working through this. I'm self employed but we are drawing on savings now as I'm not able to function and really need rest.
Clarabella, try some chewy mints through chemo, I did this by accident for round 2 and have not lost taste buds this time. Also brush tongue gently when you do teeth.
Liloc, yay, cheese on toast is a winner every time! Although I think I will be treating myself to some bags of Thorntons before Christmas as well
Feeling a lot brighter today, hubby only has to do two more filgrastim injections and then we have semi normal time until round three just after Christmas. Managed to do some household bits and bobs today, might be up for bathroom cleaning tomorrow!
Hair, I've not shaved my head so have lots of straggly hair all over the place, still have lower leg hair but nothing on armpits or arms (jeez, sound like a gorilla!) Most of my head hair fell out in the third week of round 1 and the couple of days after round 2.
Rumbly tummy, onco said this was due to steroids so I have less steroids and some tablets to calm tummy, and it has helped this time, no longer trying to eat the contents of the kitchen! I'm drinking three large glasses of squash a day plus some when I wake at night (always waking at night now due to fluid intake!)
Cannot believe the chemo fog, I'm like an old woman, I dither and get confused, and ramble, which I think is what I'm doing now!
Anyone looking after their nails? I don't like nail varnish so I'm just using cuticle oils and creams twice a day and hoping. No changes so far after two rounds, I suppose the nails go on T?
Keep well lovely November ladies, we can do this!
Ahhhh.... so Monday was rough. Felt like I'd got full blown flu, everything and everywhere ached and was so sensitive to touch. I've never had proper flu and quite frankly if that what it feels like I never want it. It felt a bit like my thighs wouldn't support my weight which was quite scary.
I noticed someone else mention cheese on toast - post my first round that's all I wanted to eat. Just cheddar on toast. I've had friends offering to buy me fancy cheese boards and I'm like nope just mature cheddar.
I'm lucky enough to live in a town where we have a branch of The Haven and I've been to see their nutritionist and she said it was likely down to the body wanting the protein, carb and fat combination. She said go with it if that's what you want but try to eat more dark green vegetables on the better days.
I've got my first counselling session scheduled with them next week so that will be interesting. If anyone else has a Haven in their town I'd recommend looking them up.
This time round my taste buds are only just coming back and it's a bit like when you've a hangover and you want to eat all the naughty food (chocolate cake, sausage sandwiches with brown or red sauce, cheese on toast). Tea is still a no no and milk chocolate really doesn't taste like it used to. Dark chocolate (my favourite) is more palatable than milk.
i have just finished my chemo treatment but I have to be honest... there is no way i could have worked throughout it. Apart from the nausea, the sheer exhaustion after chemo is overwhelming. Could be that everyone is different though. Good luck x
I went for about 4mm myself for the first cut but feel i look like a concentration camp victim so will probably take it all off this weekend if it doesnt fall out on its own.