October 2018 Chemo starters

[Shi]

👭👭👭😘😘😘hi girls, sending ❤️❤️❤️and see how 💪💪💪you are all hangling onto that bungi chord while you bounce through this 🤪🤪🤪🤪ride. Few more tip, silk pillowcase is gentle on head and will be kinder to hair when it starts returning. Also get your look good feel better sessions booked in with your local Macmillan centres ❤️❤️❤️ if you can’t get on for a while, go to a boots or Debenhams the beauticians on the counters are usually the ladies who do the Lgfb sessions and they will show you at their counter and help you, they will be kind and lovely ❤️❤️❤️ time on the chemo jukebox for tonight for you, we are family by sister sledge 💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻💕💕💕✨✨✨✨Shi xx

[Kip]

Wow ladies you are doing well, the hair/wig issue is a biggie at first but once its gone you do get used to it, go with whatever you feel is right, wigs arent for everyone, mine looked lovely but i still hated having to wear it.  Now its getting colder out there will be lovely snuggly hats to wear.  Somebody mentioned what to do about eyebrows and lashes?  I didnt lose mine until chemo 5 out of 6 but if you can book yourselves on to the Looking Good Feeling better course, its free and you get shown how to draw in eyebrows etc and you get lots of lovely freebies.. its a really good pamper for you and a few hours away from this nightmare!

Keep ticking off the days,, 

Kip

Xx

[Lou45..]

Pinklily ,
I would just like to thank you for your kind words they made me bit teary but i know what you mean i have said to people i am still the same person inside even when i have no hair,
must admit your words have picked me up and i will keep holding on to those hands 🤗,
Lou 💕x

[pinklily]

The scarfs are very fashionable, I've seen a lot of people wearing them, I'm going to wear mine even when my hair grows back.

[Kip]

Ladies if you struggle with continued sickness please speak to chemo or help line there are other sickness pills to try, dont suffer in silence, also have you tried anti sickness travel bands?  

Kip

[ktk]

Lovely ladies, only go for a wig if you really want one. I decided not to bother and didn’t even go and look. In the summer I just went bald but now it is colder I have a plethora of colourful scarves to choose from. Love to all and good luck with your chemo. Kxx

[pinklily]

Hold on in there Lou45, we are here for you and I know you don't feel like yourself anymore, but inside you are still the beautiful person you always have been. I know it's easy to say, but our looks are on the outside, people see us for what we are in our behavior and I know your confidence has been knocked back, but you're not alone and we all know what you are going through. You have to look in that mirror and say, I'm me and I can do this, because we all have our arms around you to give you support and you are you. When this is all over, you will look back and say 'I got through and out the other side and I'm still me. We are all holding hands, don't let go now.

[Lou45..]

Afternoon ladies,
Hope you all doing okay on this cold afternoon,
I havent been on here for a bit but if i honest i have been struggling this week i think its just hit me with what i am dealing with,
I too saw the wig lady yesterday and wasnt impressed i have short hair and everything she showed me was nothing like me, when i got home i was quite upset,

Fiona sorry forgot to wish you luck for today hope all went well and you feeling okay,
The same goes for any other ladies that have had treatment today,
I have my second one on tuesday feeling bit anxious if i honest although my first one went okay and i wasnt to bad i got a feeling i wont be so lucky this time, my hair has started to come out now too i just dont feel like myself anymore i started off real positive but i not so much now 😫,
Take care and stay 💪
Lou 💕

[ElliesMum]

Well done Fiona, one down! 👍💪💕😘

[FiMillan]

Afternoon ladies, so first session of chemo done. No immediate side effects yet other than slight headache 😁
I hope you're all safe and taking care of yourselves 💪💪
Only another 125.5 days to go for me now on this stage, as long as it goes to plan 😜. I've even done post it notes for each week and cycle so that I can tick each day off and see progress.
Big hugs to you all 🤗🤗
💜 Fiona xxx

[reddi]

@Sar_ah My eyebrows and eyelashes have thinned, but as I had pretty thick eyebrows, the change has only been noticeable to me and my OH -- and I am through 5 cycles (3 FEC and 2 TPH, with TPH no. 3 of 4 today). I did lose body hair (armpit, back of legs, pubic) in cycle 1, faster actually than my head hair, which was thin at cycle 2, with a few locks holding on til cycle 5! (I didn't cold cap.) Hair is growing back now -- a few millimetres, approaching a centimetre, despite being on Herceptin in addition to the taxane. I have heard I might lose eyebrows and eyelases in cycle 6 or 7, despite promising hair regrowth.

[Sar_ah]

Best of luck today ladies having chemo! Thinking of you all ❤️
Had my port fitted yesterday which went well although I’ve rather suddenly started losing a lot of hair, I had the cold cap so wasn’t quite expecting it and have totally been in denial! I’ve also started to lose a lot of body hair ... I didn’t think that have til later, it hasn’t started to to go from my eyelashes or eyebrows but has anyone had any tips for when it does?
Hope you all have a lovely weekend and get lots of rest when you can

[FiMillan]

All the best Aneeebel for today 💪💪
💜 Fiona xxx

[FiMillan]

Good luck for today ladies 💪
I couldn't agree more with Sarah, if it wasn't for you all going through the same stuff, I'd be even more scared. It helps to know we can talk and know that we truly understand each other.
I had a meeting with the wig lady yesterday at hospital and I too got upset by it. I guess it just makes this nightmare become reality 😢
Oh well, time to get up and get ready for round 1 🥊
Good luck girls 💜 Fiona xxx

[Aneeebel]

Hi Shi... Thankyou so much for your lovely message...oooooouzing with positivity and kindness, made me smile 😘 You're right of course, we're all allowed the odd blip.. But I'll get my karate kid outfit on again...and give it all I've got!! 💪🏼💗💪🏼💗

ElliesMum...Yes, lots of challenges, but we'll get there in the end... (The limbo cover is fab, Tvm x 💗)

Sar_ah... Thanks for thinking of us 💗 I'm glad it's not only me with the wig too...I thought I was being dramatic! 💗💪🏼

💜Fiona... Best of luck for today 💗💪🏼

Best wishes to all us October ladies... Take care and Thanks for being here...xx

💗💪🏼💗💪🏼💗💪🏼💗💪🏼💗

[Badboob]

Morning everyone, just wanted to say that I too have found the whole wig thing really traumatic. The wig provider at my hospital had the most awful selection  with nothing in a mid length. I completely freak out at my first appointment. 

Friends then recommend a local business and I went to see them, what a difference, massive of choice and in fact the first one I tried on I ended up buying. They even had a hairdresser on site who then cut it properly to my style. Back to the hospital to have another go. I realised just how terrible the NHS ones were compared to private. I ended up getting a completely different style to my own on the basis it didn’t make me look like a witch, instead it is more bagpuss! I really feel for those who have no option but to take the free one.

The only positive to come from the day was meeting everyone at the Maggie’s centre. They grabbed me as I came out of the fitting, sat me down with a cup of tea and were really really lovely to me. I just felt so much better after my chat with them.  Goodness, this journey is hard isn’t it! 

Good luck to to everyone who is having chemo today, 

Hugs

[FiMillan]

Good luck for today ladies 💪
I couldn't agree more with Sarah, if it wasn't for you all going through the same stuff, I'd be even more scared. It helps to know we can talk and know that we truly understand each other.
I had a meeting with the wig lady yesterday at hospital and I too got upset by it. I guess it just makes this nightmare become reality 😢
Oh well, time to get up and get ready for round 1 🥊
Good luck girls 💜 Fiona xxx

[Sar_ah]

Good luck for all you lovely ladies having chemo tomorrow, you’ve got this 💪🏻💪🏻💪🏻
I know what you mean about the wigs, I went in a shop, came home and cried! I’m kind of glad to hear it’s a “normal” reaction. It’s so lovely to have all you ladies here in my phone, it can be such a lovely journey while being surrounded my people at the same time but this forum as really helped that 💕

[ElliesMum]

Oh Aneeebel, I’m so sorry to hear that getting a wig upset you. This process has so many challenges for us to deal with! Like you, pinklily, I decided to brave the shave in the week after my first chemo. I went to the barber shop a short walk from where I live and had them shave off my shoulder-length hair. They were fabulous - wouldn’t even let me pay afterwards! It honestly felt really liberating.

I’ve been back at work since shaving my head, wearing a wig. (I tend to wear beanies or hats otherwise.) I personally hated the wig initially and had to be convinced by my husband to go for it (wanted to run out of the shop empty handed and put my head in the sand!). Most people at my workplace don’t realise that I’m going through chemo and I have received several genuine compliments on my fabulous new hairstyle! 😂🙈🤷‍♀️ I’m slowly getting used to the wig and, as Shi suggests, I’m thinking of finding some “fun” wigs too to mix things up a bit! Also buying lots of gorgeous beanies! 🤗👍

Xox😘💕

[pinklily]

Should have said, I had I shaved last Saturday, I want to be in control as much as possible, I'm not going to let the cancer control me

[pinklily]

Good luck to everyone having chemo tomorrow hope it is not too bad for you. I had my hair cut really short four weeks ago, a grade 2, then a lovely man who overheard my conversation on the phone to Sarah at the barbers, wanted to pay for the cost of having my hair shaved, as his sister had cancer last year. He didn't leave his name, just wished me well and paid for me. So I don't have any hair, but I have purchased loads of beautiful scarf chemo hats from Hong Kong and China.
I'm ready for all events, even got the difflam you were all talking about and the child toothbrush.
Hopefully I won't need the difflam.

[Shi]

Aneeebel 👭👭👭it’s good to have a cry our hair is so important, but more important is the beautiful person you are, that shines bright with fight and strength (if you don’t see it yet, it’s there and it will just shine brighter and brighter) as you jump through this a jump at a time 💪💪💪💪try a few luvyababes wigs for around £20 too if you can, it’s good to have a selection, through a few tinsel wigs in too for good measure, I did. On days when you might not see you looking back in the mirror you are there with your karate kid outfit on fighting for all you are worth and all of us behind you too 👭👭👭💕💕💕✨✨✨Shi xx

[Aneeebel]

Hi 💜Fiona... Good luck for tomorrow, will be thinking of you x 💗💪🏼

Hi ElliesMum... Thank you for thinking of me x 💗💪🏼

Hi MurphyC... Yes, I ended up in hospital too! My hair is starting to fall out, it's been okay until the last couple of days but my scalp has gone tender and I seem to be losing more when I wash it! I haven't been brave enough to shave it off as yet! I went for a wig today and when I got home I was so upset it I actually cried! Can't actually get my head around me getting a wig!!
Any way...sorry, I'm waffling... Good luck for tomorrow! 💗💪🏼

💗💗💗💗💗💗

[ElliesMum]

Best of luck for tomorrow, FiMillan, Aneeebel and MurphyC! I will be thinking of you all. 💪😘💕🤞

Pinklily, I believe that side effects usually follow a pattern each cycle, but there are sometimes different drugs (especially anti-sickness medications) that can be prescribed that might work better for you. I’m having FEC at the moment and I felt pretty nauseous and horrible for the first week (especially th first few days), but feel great now 2 weeks later. Hopefully you will start to feel better soon! 🤞😘

[MurphyC]

Hello Ladies

It’s been an interesting first cycle - felt great, then in hospital with high temperature, hair has all fallen out and started to feel OK again...like a number of you, cycle 2 tomorrow!!!

Good luck everyone with your treatment, hope it goes well. xxx

[FiMillan]

Hi Aneeebel
Hope you're well and no 2 goes well tomorrow.
I've just got back from pre-assessment with my anti-sickness pill and steroids ready for tomorrow morning.
Good luck tomorrow to you and all of us 💪💪
💜 Fiona xxx

[Aneeebel]

Hi Pinklily, I've felt sick every day since I had chemo... Not constantly but it comes in waves!
Today is the best I've felt with regards to nausea and I'm going back tomorrow for chemo No.2!!! Typical!
Anyway...it's not getting me again! Haha! At least I know what to expect...I will be more prepared!!
Hope you feel better soon! 💗

Best wishes to all us October ladies...and every other lady of course! 💗
💗💪🏼💗💪🏼💗 xx

[pinklily]

Ladies, do you feel sick after every chemo cycle, or does your body get used to it. I'm drinking loads and have taken the anti sickness drugs, but still feel sick and just nibbling on cream crackers.

[Kip]

Oh thats strange pinklilly it was a chemo nurse who told me.. best to listen to yours then.

[pinklily]

Hi kip
I had my first chemo yesterday and was told not to take any vitamins at all unless prescribed, the nurse said they can counteract some of the chemo drugs. When I asked about my vit c, they said certainly not.

[FiMillan]

Thanks Kip, something else to add to the shopping list 🤣

[Kip]

Hello ladies, sorry to just pop in,  im from the June chemo thread and was just having a thought about the nasty tongues and lack of taste buds due to chemo and remembered this tip.  Get the vitamin c tables (the ones jn a tube which you disolve jn water) and let half a tablet dissolve on your tongue, it helpa cut through the sliminess, yoh ccan do a whole one but they are quite sharp.  Juat a tip to pass on.

Kip

[Shi]

Sarah 😘😘ring your team darling and speak to someone, they have seen everything and will be able to advise you and give you peace of mind. Keep 💪💪💪💪💪you can alll 🥊🥊🥊🥊this ❤️❤️❤️💕💕💕✨✨✨Shi xx

[Aley]

Hi FiMillan,
Read your post and just wanted to say 👋 I have a lump in my right breast 2.6mm and one in my armpit..My armpit one is painful and swollen and the boob one sort of well ‘moves’ a bit..i’ve Had 2 FEC so far and I think they say it’s shrinking a bit! I’m having my chemo up front too which frustrates me a little as although they say from biopsy & ultrasound it’s in 1 node sometimes it sounds like it’s spread more at the time of surgery. Just feels a bit weird having it in me too as I’d wished it could be removed ASAP!! Anyway we just have to trust the medical experts I guess! Have a great day all x

[FiMillan]

Hi Sarah

I can't really comment as I've not had surgery yet, doing chemo first but I would recommend you speak to your team about it asap. My lump Humphrey in my boob has a mate Patricia in the armpit. Both are hard, and the armpit one can hurt. I thought I could feel it growing recently but the BC consultant said that was due to the biopsy and poking and prodding.  The armpit tumour is more sensitive apparently.

Get it checked out as soon as you can so it can be dealt with if necessary or, fingers crossed, it's absolutely nothing to worry about and you can just focus on getting through chemo.

Thinking of you 💪💪

💜 Fiona xxx

[Sar_ah]

Don’t know if anyone can help on this one. I have developed a lump under my armpit, (the side my cancer was) I noticed it at the end of last week and just assumed it was hormonal and would go away but it’s not, it hurts when I poke it’s too and feels quite hard. I’m 12 days into my cycle and feel ok other than the mystery lump.
I feel a bit silly asking but are lumps and bumps appearing just part of chemo!? I wasn’t really worried but I’m having a port fitted Thursday and my minds starting to run away with itself 🤦‍♀️

[pinklily]

Thank you aneeebel, it sounds like it's going to be easy, my veins are a bit small but I'm drinking loads. I will ask if the district nurse can come in, but sometimes they can't come on the same day every week. We don't live to far from the hospital, only 12 miles, so if I have to go there, it's not a great problem. Feeling a bit nervous about tomorrow now, but I've got a busy evening, I hope that helps.

[Aneeebel]

@pinklily I've had a picc line fitted... Was quite straight forward -had an ultra sound scan to check where my veins where and if they were suitable, I then had a local anaesthetic and the line was inserted, I then went for an X-ray to check it was in the right place and then you go back to the unit to have the picc line area cleaned and a dressing put on it... I couldn't really feel too pain afterwards, it's more like having a small cut...cleared up quickly and so much easier than having needles/canullas for treatment or blood tests! The district nurse comes out once a week to flush it and change the dressing! I would recommend it if you have the option! 💗💪🏼 x

[Julesstutt]

Hi ladies, I just went for my follow-up on my mastectomy and the good news is that they did get clear margins. The tumor was 6 cm. Again, just saying...I don’t know how 14 consecutive years of mammograms could have missed that. Anyway, my doctors are saying eight rounds of chemo. Four rounds with epirubucin and cyclophosphamide and four rounds of docetaxel. My tumor is estrogen and progesterone receptor positive. Does anybody have any experience/advice on my type of tumor and the above mentioned chemotherapy?  Thanks in advance! 

[pinklily]

Thanks reddi

I was hoping someone would say they could do walks, it helps me to think I might be able too as well, I know maybe the hills might be bit adventurous to start with, but it would make such a difference to get up there and see those views.

I'm not sure about using my ruck sack at the moment, I can't lift anything heavy with my right arm ever and I'm going to have the picc line in the left and I read I can't lift anything heavy with that arm, although what some people count as heavy, I don't. As you said, I will have to see how I feel, but the sooner I get walking, the better.

I got bitten by something two days ago, used the antisane cream and took a anti histamine tablet, but it's itching and still looks a bit angry, I'm worried that the chemo will cause it to become infected, I will have to see what they say on Wednesday. Good idea to carry a mini first aid kit, we've got one in the house, in the car and we both have one in our ruck sacks, hadn't thought about losing nose hair, but it must make a difference, just as well it's autumn and winter. 

As I'm starting with the EC and the Zometa for the first four sessions, I'm hoping the side affects will not be too bad, it's when they start to add the Paclitaxel as well once every week for 18 to 20 weeks that worries me more.

[reddi]

@pinklily Take it as it goes with the walking -- and treat yourself as you can! My OH and I are keen walkers, and it's been hugely helpful to my  spirits to keep it up. I've managed several 10-11 mile walks during chemo (at least one per cycle, often more), including a 3-day trip to the Wye Valley that involved carrying our "kit" on day 1 and 2 during week 3 of my 3rd cycle of FEC. It can be doable, though it all depends on how your body responds to each chemo regime.

I've found it best to plan a walk that allows for an "early out" in case I'm feeling tired or running short on water. This weekend, we did a 7-mile walk on both Saturday and Sunday -- late starts cut short by dusk/twilight. Both were on relatively flat ground, as I'm feeling it more now that I'm in cycle 5. I've found the taxane regime is harder, in terms of walking -- I'm more fatigued, whether from the specific drug (I've been prescribed docetaxel, not paclitaxel) or the cumulative effects, and I really feel the effects on my feet (soles weary, and a bit of peeling, but no worrying pressure blisters as yet). I also carry a little first aid kit with me -- antiseptic cream, plasters, antihistamines -- in case of bites/splinters/scratches, to reduce chance of infection and deal with extra sensitivity to any pollens in the air (losing nose hairs makes a big difference!). 

[pinklily]

It's good to hear you have a lot of friends and a good family to support you lebbie, I'm sure that must make all the difference. It's just me and hubby and a few close friends, but the support I get from this board is wonderful. I don't know about treating myself after each session, I don't usually do anything like that, but if there is one thing I would look forward to, it would be a walk on the hills. We live by the sea, but love hill walking, probably won't be up to 11 mile walk, but maybe a gentle stroll will make me feel a bit like the old me. I'm glad my surgery is over, can't believe it's been 11 weeks tomorrow, just finished decorating the lounge and the bedroom and feel much fitter, even did a 7 mile walk six weeks after surgery, I just have to keep reminding myself not to lift anything heavy, even when it looks like I'm going to lift anything, hubby barks at me not to do it, I'm lucky to have someone who loves and cares for me so much, I fee so sorry for those who have to go through this on there own. xxx

[ElliesMum]

Pinklily, a Limbo cover is perfect for showering with a PICC line. I was advised to buy one and, in a bid to be super organised, did so before having my line fitted. I believe some hospitals give them out (mine didn’t).

As an aside, given that I ended up with a Hickman line, I now have one surplus to requirements! 🤦‍♀️ I can send my unused Limbo cover to anyone who could use it - let me know if it could be useful and I can post it to you! Xox

[pinklily]

Just wondered if having the picc line inserted is very uncomfortable and did anyone have any problems?

Also, I've got a Limbo arm cover that I used when I had surgery for golfers elbow, would this be suitable to use with the picc line when I shower or should the hospital give me something?

[Sar_ah]

My second cycle is also the 1st. I must say I wasn’t entirely convinced by the swimming but we will see.
I’m hoping to go to Pilates tomorrow and taking a day at a time but I must say after that run (maybe not that day, it was a loooong day!!) I have felt more like me which I was really struggling with before.

[ElliesMum]

Great work with the running, Sar_ah! I too am trying to exercise through chemo. Most of my first week was a write-off, except for gentle walking, but managed some hiking and a little jogging on the weekend. Felt fabulous after (even though it was very slow) - I love an endorphin high! 😂💕

I don’t have a port, but I have a Hickman line. (I had asked for a PICC line but this wasn’t possible.) I’m not going to lie, it was super painful for a few days after it was put in! 🙈 It took an hour to be inserted, under local anaesthetic in theatre. Felt a bit uncomfortable but tolerable. Was surprised at how sore I was for the next few days - lifting my little girl was simply not possible, and I hadn’t expected that. However, it is totally painless now. Having chemo through it was a breeze. Also have bloods taken from the line. Fewer needles is a winner in my books! I was told not to shower (or to fashion a cover of sorts and be careful) 🤦‍♀️ but that I could have a bath, provided the water level was below the line (so it doesn’t get wet) and the water isn’t too hot (so the skin under the dressing doesn’t get super sweaty). My oncologist recommended no swimming to me anyway - even without the Hickman line - due to the infection risk of water-borne nasties. Maybe we just have unhygienic public pools in my area! 😂 I’m not a big fan of swimming, so I didn’t question her recommendation.

I can understand what you mean, lebbie, about having lines hanging for little hands to grab. My little one has been great, luckily. I just wear tops that cover my chest - my usual style anyway, especially now with my plethora of surgery scars - and she can’t get her hands on the lines. All good so far! 👍

After an interesting first week, I’m off to work tomorrow (have been working from home as and when I felt up to it thus far - so not doing much haha). Yay! 🤗💪

Best of luck on Friday, FiMillan and Aneeebel! 💕💐🤞 I’ll be thinking of you. Xox 😘

[FiMillan]

Hi Sarah
That's amazing that you went out running, well done you.
Keep going, from what I gather exercise helps with the effects of chemo.
I might have to get my running gear out soon 🤣
💜 Fiona xxx

[lebbie]

Hi @Sar_ah  The advice I was given was not to bath because of the risk of infection due to the bath water not being fresh running water like a shower. If they tell you any different, or give you any tips when you see them, please let me know as I would love to have a bath again!

Which day to you have your 2nd chemo? My 2nd one is due on the 1st November.

Good luck for the port fitting, I had mine done with sedation, which helped with the anxiety of it all, and I didn't feel a thing

Well done for the 5k, that's amazing! I would have been exercising more but once I got this chest infection, I wanted to conserve my energy to help me get better, plus I don't think my lungs would have handled getting out of breath!

[Sar_ah]

Thank you for the advice on the cold cap Lebbie I’ve had it once so far, round two next week, it wasn’t as bad as I was expecting but simple shampoo does nothing for my hair either!
I’m having the port fitted this week but didn’t realise I wouldn’t be able to bath, they told me I would still be able to do everything as normal, even swim! I guess I might need to double check that.
Is anyone exercising through there chemo? I’m trying to do what I can, I’m finding the fatigue is the most upsetting thing for me. I managed a 5k run on Saturday and felt like a superhero 💪🏻

[lebbie]

@Shi - thanks, sounds great!  I'll get tuned into that jukebox now lol, and get on to the thread you mentioned straight after xxxx

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