I know what you mean Nadz...... On a walk over Christmas, my two, aged 23 & 20 mucking about on a bridge playing pooh sticks! ☺️ And laughing, I love hearing my family laugh.
Oh Nadz, Im so sorry to hear that about you Hun, it's a complete bitch of a disease!
Yeah I'll be on tamoxifen also, but I'm a lot older than you and my family is complete. I'm 49 and if all the **bleep**ty sessions go to plan on the 21 day cycle, then my last one will be the day before my 50th!!
We've still so much to get done in our house (moved in 4 years ago, but things not finished!) My hubby talks of getting this that and the other done, what shall we do/save for next etc? Some days I just want to scream...... That I just want to still be here to see it all finished!!!!
Hi all..... Hope you're all feeling ok.
Nadz, are you having FEC x 3 and T x 3? I'm not having to do injections, assuming these are for white cells? I only had the one injection for that 24 HR after first session. I'm on antibiotics for precaution as my node clearence scar got little red and area felt like post surgery again with swollen feeling! I've got cording in m my arm too and she's referred me to physio. Saw my McMillan oncology nurse who said temp little high and 'just in case of start of infection' give antibiotics for 7 days. Had another blood test but all good with that. I'm due at my Drs next weds 6th for bloods, all being well, second dreaded session on 8th.
Lost a little more strands of hair today than I normally would when washing...... So it looks like it's going to thin. Hopefully the cold cap retains most!!?!! This time next week,,,,,, session 2 will be done!
I can't help thinking of the possibility of it all coming back! And I know I need to get over this thinking for sanity sake. How!?!...... One minute I think, yep, you're doing ok girl, have the treatments, get it all out of you! Chemo, meds and radiotherapy and this time next year done!.... But then I read of it coming back for others..... Is my life going to be cut short? Ongoing problems of insurance, holiday etc affected....
Sorry guys, feeling a tad emotional tonight, hubby going back to work away tomorrow as are both our grown up kids..... Not looking forward to being on my own and I know there'll be lots of tears in the morning! Xxx
Happy New Year to you all too. I'm on day 3 of my first EC chemo, feel okay, being lazy, don't suppose it will last, but hey ho, get on with it and look forward to a great year.
Hi Marie, we are all with you, you will get there soon, time goes so fast. I just hope you don't have too many bad days. My daughter went through, I think it was FEC, herceptin and radio, three years ago, and she is fighting fit considering she was going through a lot of stress in her life, money, home, partner etc., and she didn't tell anyone. She didn't want to worry us. I am a very young 74 and had a lumpectomy in November, and lymph nodes removed, same side as my daughter, and same time of year, spooky or what. I am having EC, and at the moment feel okay, but I'm a very positive person, and know it will be okay when all finished. I know everyone is not the same, and do feel is if there is anything I can say to help anyone I would.
my reasoning is, it's there, get rid of it out of my body and get on with treatment. 2016 will be great for us all.
happy new year and cuddles to you all.
You must have had your first FEC on Christmas Eve, too, Lynne? I reckon sometime from 10th January onwards for my hair to go south!
I felt lousy for a few hours on the first evening but not too much since then. Tired and woozy from time to time...if it didn't get too much worse than this...still, only time will tell!
The interrupted sleep is a bit of a pain though. I had steroids to take for three days but the munchies and sleepless got more pronounced after I had finished the doses, has anyone else found that?
Hope everyone one is doing ok.
hope you are all doing ok. I am on day 8 of FEC and have had very few side effects. Woozy and tired for three days then triuble sleeping, in fact no sleep on three days. Apart from that nothing else. I must be lucky. I do understand each one can get worse because if the accumulative effect.
next hurdle will be the hair falling out, not started yet. Xxx
happy healthy new year to all xx
Hi ladies, just popping in from the October thread with a bit of advice about side effects. I was sorry to see several of you dreading your next treatment as you know how bad you'll feel so I just wanted to remind you that when you see your oncologist the week before and have your blood test, be sure to tell him/her abiut every side effect you have suffered with. I had written them down as they happened so took in the list. They will then change or increase the medicines for afterwards or in more extreme cases reduce the dose of the chemo drugs. My onc always tells me we shouldn't need to suffer, as there is usually something that can help.
I'm chemo number 5 tomorrow, no actually that's later on today, can't sleep due to steroids. This will be my second T and they are giving me a reduced dose this time so hoping I won't feel as bad.
Good luck everyone, and happy new year, Chris xxx
Hope everyone who had chemo today is doing ok.
A week after my first FEC and I'm doing ok.Tired and woozy and very disrupted dream laden sleep, but really nothing to write home about, so far!
Staying in for New Years Eve for the first time in years, and won't be with my youngest (20) with us later as she is going out with her boyfriend 😢
Anyway, Happy New Year everyone, have a good evening and let's prepare to kick our C into touch in 2016!
Hi Nadz.....l exactly the same SE as me!...... With you on the hair thing too... Mine short ish Bob but feels very dry at mo. Sense if smell is ridiculous!?! To the point where on a walk I even said to my family that I could smell that someone was having a 'lush' bath and also smell someone's tumble drying!...... We were a fair way from houses!?! It's a mix of a bad hangover and early pregnancy symptoms!? I'm due round 2 on 8th, dreading it as I know what to expect! Day 1-8 found hardest, then on antibiotics day 11!
Are you Cold capping Nadz? Xxx Tina
Hi Marina, before you post you can click the little ABC button with the tick and it does it for you. Once posted I think it is set in stone 😄
nadz, hang on in there I am day 9 and am good today. I find days 4 to 7 the worst. Pleased you mention upper Back and shoulder pain I feel like my handbag and the Hoover are full of concrete my shoulders are quite weak. Oh and the smells, isn't it odd. You will feel better each day now though. X
Will be thinking of you Laura! 👍🏼
Wishing everyone a happy, better, healthier and prosperous New Year! 2015...... You can do one!!! 2016 IS going to be better! ☺️ Xxx Tina
Well done Pam! One done. Take care and listen to your body now. Hoping none if any SE for you 🙏🏼 xxx Tina
im on the 'good' week before round 2. Enjoying a glass of red and even fancied my peanut butter on toast this morning! ☺️
Hi Marina, I started my first chemo today, and just feel fuzzy headed, but otherwise not bad. I had the cold cap which was very icy, but if you can stick it for 10/15 mins, it does ease a bit. I had EC chemo. I am a very young 74, my daughter went through this three years ago, same lumpectomy and same side boob. She had a different chemo to me tho'. I think it helped me seeing how things might go for me. I am a very positive person, but I know it's different and scary for some people. We are all out here rooting for each other, I am thinking of you, but nurses are amazing and have time to talk, everyone at the hospital are so kind. Lots of love and let's get this sorted so that we can have a fabulous 2016.
Just a quick note to wish everyone a very happy and healthy ( in the long run!!!) new year. I will have my second FEC tomorrow don't know what I'm dreading more the cold cap or the after effects of the treatment!! No hair loss as yet but for some reason expecting it all to fall out after fec 2!!! So very nervous!! Won't be posting for a few days, but will be thinking about you all
Love and hugs Nicola
Hi everyone, I wasn't really expecting to be starting until January but I am pleased to join you (you know what I mean!) and have my first FEC under my belt!
Thank you red-robin, this forum has been so helpful, you find yourself moving through various threads as everything progresses!
Neo Adjuvant chemo is usually given to shrink the tumour, then surgery may be less invasive, so they might be able to do a lumpectomy instead of a mastectomy, for example. I went to my oncologist with two pages of A4 of questions, poop woman! If you want to know, ask away, I have always done and had pathology reports and everything, the chemo and breast cares nurses can help a lot. It depends how much information you want of course, but if something is niggling you, jot it down and ask away.
Here is a link to the 'wig' situation although you need to check for variations in you region; http://www.nhs.uk/NHSEngland/Healthcosts/Pages/Wigsandfabricsupports.aspx
I didn't qualify for a free wig and my local supplier charged about £120 for my synthetic wig, and the NHS paid some, I ended up paying £67 for it. I haven't worn it yet, once the hair starts going south, I will go down to the hairdresser who supplies it, get a really short back and sides (I look dire with short hair, mine is to my boob) and get the wig fitted and trimmed. I don't know how much I'll wear it, I imagine I'll be on hats and scarves more, but maybe I'll like it better than I think! This stage of waiting for it to go must be the worst bit I think! go (Like all the other waiting, tests, op's, scans etc!)
I was given the injections to boost the White blood cells to do from day five after chemo. My eldest daughter is staying for Christmas and had injected herself a couple of years ago after her Caesarian section, so she did my first one and I did one last night, it was much easier that I thought and really didn't hurt at all. I was told these injections could give you pain in the hips and lower back.
If you have any chest pains, don't ignore it; phone the help line, it's probably nothing to worry about but in my 'Red Chemo Book' it is listed as one of the things you should report immediately, just get it checked out then you don't have to be wondering what to do or if it's normal.
Love and hugs to everyone,
hi red robin, and all wig hunters
have you you had a look to see if you can use your voucher on line? Then you can get the name of the wig you like and order it? Most of them you can return if you don't lke it. I got mine from Natural Images in the shop some branches are called hot hair, they have lots of branches. It is hand tied and a monofilament cap which makes the scalp look real and was £196. You automatically get the vat off if you have cancer.
I had had two friends who had cancer before who kept me right. Be careful about getting real hair as it takes lots of styling effort. Take notice of the scalp bit, it is that that gives it away. Remember you can get it trimmed a bit if you need to.
all consultants seem to give different meds, and remember we all have different tumours or had them and are having different treatments. I get an injection of Aloxi, 3 days of Emend plus steroid and then have Metoclopramide to take if the sickness is bad, think I have used 3 over two cycles. Most important thing though is make sure you tell the team how you felt so they can help you next cycle. I haven't been sick but last time felt like I had a huge air bubble or cotton wool ball stuck in my gullet.
good luck x
I'll be with you in spirit on the 8th Red Robin...... I'm number 2 FEC...... Using the scalp cooling system again. Can't bare the hair loss thought.... Still waiting for my voucher to arrive!?! Just in case....... What system are you using? Xxx Tina
Hi all, just want to back up what my October chemo buddy Karen says about coping with hair loss. I have not felt at all self-conscious about going out in one of my hats or turbans and have even had some nice comments about them from people who just think I'm wearing head gear because I want to (not because I have to). In fact there are some lovely items available although I am in danger of spending all the money I'll be saving at the hairdresser and on hair products! I think it being winter time also helps as so many people are wearing hats now anyway.
Good luck everyone - you can all do it.
Hi Marina, you should be entitled to a wig on the nhs. I have just been to a party and no one mentioned my wig at all it looks so real. It does feel like a hat as the day goes on but I dont feel it makes me different to others, I understand how it makes you self conscious but you do get used to it quite quickly. We will all look back in the summer and our hair will be back 🙂 x
Sam I felt very self conscious the first few times I went out wearing a wig, I kept looking to see if I could see anyone else wearing a wig. I didn't want to look like a cancer victim and have people giving me pitying looks but I've not noticed anyone doing that. The wig I've got is really good and even my oncologist thought I'd cold capped and kept my hair. If you're on FB feel free to add me (Karen Roberts Burwin) as I've got photos on there when I shaved my head and wearing my wig if you want to look. Do things when you're ready, we all deal with things differently xx
Hi Sam, I'm from the October thread and have just finished chemo. Losing my hair was very hard for me, because like you I didn't want to look different. When my hair started coming out in handfuls I decided to shave it off as I felt in control rather than my hair controlling me. I don't use my wig very often, in the house I wear scarves or don't bother with anything but always have something to hand in case someone knocks at the door. I thought everyone would look at me when I went out but they didn't. I wear my wig about 50% of the time I go out and the rest I wear a hat. I shed tears when I shaved my hair off but I'm used to it now and it saves a fortune on shampoo etc lol. You have to do what is best for you, but it's not as bad as you think it's going to be. good luck xx
Saw my lovely nurse. Given precautionary antibiotics for possible early infection. Signs showing in scar area and little puffy in arm and hand, have slight temp. Says nothing to worry about, referred me to physio for specific exercises to help with the chording! Ah well..... Can still have a little G&T tonight though as alcohol moderately has no effect on meds 👍🏼😜
day 8 cycle 2 of FEC and feel quite good today got out in the sunshine with my little dog. Felt like I was drugged Saturday and Sunday, just really tired and out of sorts but on the up now. It tricks you for the first couple of days making you think you are ok! At least Christmas Day was ok. 2 FEC down one to go for me then 3 Ts so moving along the bumpy path. I am hoping 3 is not my worst like Jen bless her. Have had my daughter home from uni and that has helped keep me going along with my ever patient hubby.
Sam, Marina - have been wondering how you are coping with your hair loss. It feels like ages now since I lost mine and wig is part of me. I did forget myself this morning though and put shampoo in my hands. Hope you are ok and managing it.
Best wishes to you all Gillian
Thanks Jen xxx 😚
Left message for My Macmilan nurse. If she doesn't get back to me by this aft I'll ring my doctor.
I know exactly what you mean about eating!! I'm iff shooing Friday and plan to make a few dishes to freeze for myself. Though worry about fancying any of it as my sense of smell can be acute or nauseating!?! Ill try and get my bum shifted to go for walk even if just round the block!
Glad your hubby home for NY 👍🏻☺️ You have it harder than me Hun. Do you have family near? I don't. I'm in north Scotland and family in South Wales!
Yes we must keep thinking we can do this! 🙏🏼😖 Though, will this sinking feeling of what the future holds ever diminish? Folk say, oh it'll soon be over and you'll be ok...... Um? Will I? Afraid to ask the odds on it returning!?
Up and down, down and up!.......
BCN just rung back...... Going in to see her this afternoon. 👍🏼
Hi Kim, my last (2nd one! First on 8th October) surgery was the 12th November, nearly 7 wk ago...... Week before first chemo BCN said I had slight swelling but nothing to worry about and wasn't going to drain as my body would deal with it. It subsided and got better, until a few days ago..... Wondering if chemo affected my system and its built up again!? I'll let you know, I'm off to ring her now, failing that it'll have to be my GP?
Wushing you good luck for this afternoon xxxx
Hi all, Not been on here for a while, hope you all had a good Christmas? How are you all? Claire? Amanda? Marina? Jen? Gfinich?
Not sure whether it was fate? ( notifications ended up in my junk box!?) But I'd decided to try and avoid the forum for while as reading posts (though I felt 'OK') was making me more paranoid and fretting!? Good to hear that those who've recently started getting this **bleep**e into them are doing ok. I have been thinking about you all.
I'm on day 11, (post session FEC 1)
I've had a few SE's from nausea, constipation, woozy head, tiredness, mood swings, forgetfulness, sore mouth and tongue, sensitive nostrils (runny nose, and slight bloody one nostril!?), headaches etc. Nothing too major, though I'm expecting every next time will get worse? I tried the scalp cooling system, going for it again but dreading it so much. My hair feels so dry even after washing and has a mind of its own. Last two days it's felt itchy, 'warm' and tingly in parts....... Assume this is the time normal regrowth would occur but not happening? Like you Marina, worried about showering and seeing it fall out. I don't think the cap went right down the back of my head either?
Next one due on the 8th providing bloods ok on the 6th. I'll be on my own for this one, during and after. Hubby has to return to work (4/5 HR drive away so lives in the Mess) he's due to be home again end January, few days post session 3? My two grown up children will be back in Uni and work but both about hour and half away. It's going to be hard to start with as he's been home with me, all but a few days, (and I know I'm lucky to have had him here) since my first procedure on the 8th October! So, I'll have to face any SE on my own and do meds. Not the first and won't be the last to do this and I'll just have to get on with it. Plenty of offers from friends to be in hand should I need anything, but you know what it's like? They've their own families etc and I don't want to put or rely on them unless I really have to!
I'm having to ring my BCN today for advice. I've continued with exercises (maybe not as much as I should have, but movement etc has been normal and underarm scars etc were healing and feeling good) But the past three days the discomfort and soreness has got worse again? Movement feels like I've got that ball feeling I had post surgery after drain out!? My lymph clearence scar area is looking bit red too and slight swelling above drain site. Only way I can explain feeling is if you've shaved under arms and maybe nicked skin (which I haven't! Nor intend to for a looooooong time! 😂) resulting in a shaving rash or how it feels sore on growing back?
Hooecyou all have a good day, sending lots of hugs xxx Tina