Thanks Kim! & for all the really helpful links. 1st one done today & I'm still vertical! Whole process much better than I anticipated - super efficient friendly nurse who explained everything & made me feel v safe & comfortable. I chose to have it at home, which made it all much less stressful & "normal" & now drinking lots of water whilst waiting for side effects to emerge 🤒
Cold cap almost pleasant for the first 30 seconds, excruciating for 10 mins, but then - as all those in earlier threads have said - Ok. Knowing this kept me going, but can't help feeling that I shall stll be in the wig before long. Haircut booked for Thurs, & hoping to send a long ponytail to the Little Princess Trust, so some good might come out of this..
Meanwhile, still reeling from a relative telling me "well, nowadays, BC is just like getting a cold isn't it?" Fortunately she was on the end of the phone, so didn't get to hear my expletive ridden rant followed by tears for the rest of the day. So, anyone got any good cold remedies? !!! Jan
Good luck Windchime I'm sure it will be ok today, the worry before us the worst. The nurse sat with me the whole way through my first one & kept me entertained with tales of her internet dating! She was single when I started chemo & is now all loved up with a dentist. I've obviously been chemo-ing for far too long😀xx
Another place that offers similar free support to the Haven centres are the Helen Rollason support centres. I've booked my first appointment for next week as breast surgeon had recommended to help me with not sleeping and the wonderful hot flushes !
Claire I feel exactly like you as a teacher I love having the hustle bustle of school life and people around. Have to say the children make everything seem ok, normal. I've been off now for 8 weeks due to the surgery, one of the main problems has been that every day is very similar ( apart from Christmas) and boredom can set in, oh and talking to yourself does occur !! I have been setting myself little targets to do something different each day and getting out walking has really helped because at least you can see people even if it's just a walk up to the bakery. I'm also keeping my hand in school life by doing some admin type jobs and hope I can continue this during chemo.
As you say this forum is a lifeline because at least we know were not alone.
I hope today went ok for you was thinking of you.
The oncologist said my hair is likely to just thin so fingers crossed. I'm not going for the cold cap although I think they would like me to try but I just don't think I could manage it. Thanks for the heads up on the runny nose.
I went out out today and got some supplies, Imodium, baby shampoo, Vaseline, cotton buds and hand sanitizer to name but a few !
Have booked my look good feel better workshop which is held at the local YMCA.
Fingers crossed for tomorrow xx
Hi all One of the biggest issues for me was all the time alone at home, as hub works very long hours. I don't know if anyone has told you about places like The Haven. The people are wonderful & you can dip in & dip out as you wish. They are a really useful source of advice & offer free treatments that help with SEs like massage, reflexology, hypnotherapy (mine did me CD to help with the cold cap) & counselling. There are also sessions on nutrition, lymphoedema, meditation & yoga. If you ask your BCN she should be able to tell you. I found a local one under our Tesco, where I did my weekly shop, who knew!?! The Look Good Feel Better course are also good. Just a thought to fill the day xx
I feel got a list of jobs to do too Kim to keep me occupied. Younger son (18) back to school tomorrow so it will be my first day alone. I am not looking forward to it I have also decided to start walking everyday again. My left side is fine now so I can take the dogs. I am aiming to keep wLking daily through chemo. I don't relish being at home all day on my own. I am a people person and being a teacher I am used to having lots of interaction with children and adults everyday! It's going to be hard. I have just ordered a load of books on Amazon to keep me occupied and I have lots of DVDs to watch. Sitting around just isn't me though. I suppose when we feel ill we won't have much choice. This forum is a lifeline!! Claire xxxxx
Thanks for the link. Every bit of information helps. I have just watched Victoria Derbyshires latest video. She cold capped but has had a lot of hair loss. Like her I have coped well with everything so far but losing my hair is my biggest issue. It's so unfair this horrible thing attacks every aspect of our femininity. However, I just want to get on with treatment now. Onc 11th jan then I hope a quick start. Everyone is back to work today so the reality of what I am facing is beginning to sink in again. It's going to be a long haul! Claire xx
Hi everyone. I start my chemo on 12th Jan and glad I have found this group. I am a teacher from Kent but working in a charity-run nursery (no sick pay!) so I hope to be doing admin from home whenever possible! Really good to read alll your comments.
Ps I am also having Herceptin & haven't found that too bad either. The first dose I got a runny nose for a couple of days, but not much else. Subsequent doses, no real SEs at all. You'll be fine. My next one's tomorrow & I see you are Tues, so will be thinking of you. xx
Hi again Windchime Good & bad news on that front . . . I did 3xFEC before the Paclitaxel & was fine until the third one, which decimated my hair, but since then I haven't lost much at all. I am still doing the cold cap (doesn't bother me much & allegedly speeds hair regrowth by a month or two) & seem to have had the worst outcome, 3 other ladies who I have treatment with look pretty ok to me, though they say theirs has thinned, you wouldn't know. One of the ladies in Aug did Pac only & her hair was fine. She also worked throughout. If you're cold capping, book a machine if they have one & take some painkillers an hour before. All the best ladies xx
Glad to hear you are coming to the end and things haven't been to bad for you. Thank you for sharing your experience of weekly Pacitaxel you have put my mind at ease and will start drinking the water tomorrow ready for Tuesday. I've just ordered the oil drops I hadn't heard of them before I didn't think we could do much for the nails so that is great. Thanks for the heads up on the trots too, don't we have lovely things to look forward too !
Do you mind me asking, how was your hair on weeklies?
Thank you again I hope your next few cycles go well xxx
Hi everyone, I'm from October and have done 3 x FEC and 1 X Docetaxel so far. I second Bibi's recommendation of the Onico Life drops. Apart from a little light bruising on the nail bed of one big toe nail, mine are all okay so far. Also the water recommendation is key I think. I spend a lot of time on the loo.
I must have eaten my body weight in pineapple since I started in October and boosted the economy of Costa Rica no end but I find just having fresh pineapple chopped up and accessible in the fridge to nibble on is really refreshing. It cuts through the bad taste, gives you lots of vitamins and, so I've read, contains an enzyme that helps prevent oral thrush which is common on chemo. I've not suffered from this yet so maybe it's true. I suspect I won't go near pineapple again for a long time once chemo is over but I've found it hugely helpful.
And make sure you have meds and eat lots of fibre to avoid constipation. Oh the glamour.
Good luck everyone. It's not always fun but it is doable (well it has been for me so far!). Just be kind to yourself and accept you must rest when you feel tired.
Hi Windchime Sorry to hear about your diagnosis. I'm from August, so nearly at the end of this long road. Just wanted to say I'm on 9th weekly Paclitaxel & have not found it too bad at all. If chemo is day 1, I have been fine days 2&3, a bit more tired in the evening/horrible mouth days 4&5 & ok again days 6&7. Your nose gets a bit dry/can bleed & they recommend putting Vaseline in it with a cotton bud (weird but works). Also whover suggested the 2litres of water day before, day of & day after chemo is spot on. I would invest in some onicolife drops or dada oil for your nails (mine are still fine so far) & get some Imodium in in case of the tax trots (a lot of us have suffered with this on tax). We are all different, so it's not a guarantee of how you'll feel, but another lady did weeklies in August & she was fine too. All the best to all you ladies. xx
Good idea about a tips list 😀 Have found a few things as I've been not doing much for the past few weeks and have numbered to make easier to read.
1.Walking for fatigue - My oncologist has said I need to go for a walk everyday regardless of the weather etc to help fatigue and mood, have managed to build up to 2 miles a day over past 2 weeks so going to try my best to keep up with that.
2. Mouth ulcers - He also said to salt gargle/ mouth rinse 2 X a day to help avoid mouth ulcers.
3. Have read possibly eating little little and often may help nausea
4. Hot flushes- have purchased a chillow( a pillow that chills) this has really helped at night when I feel like I'm sunbathing in the Sahara desert sometimes I just keep it at my side to use as needed rather than as a pillow all night. The chillow is a bit fiddly to sort out each night but I'm finding it useful.
Found this link helpful - Ten tips for getting through chemo-
Also I found this blog useful in preparing for surgery and chemo
Hope info is useful
Hope you don't mind me joining you. So pleased there is a group for January starters as the support on the forums has really helped over the past few weeks. Thank you Kim for starting the thread.
I had a bilateral masectomy with expander reconstruction 7 weeks ago and recovering pretty well. My chemo starts on Tuesday 5th, am a little apprehensive about the unknown as I'm having weekly paclitaxel for 12 weeks and can't find a great deal about how weekly cycles effects indviduals and what I have read up on conflicts with what my oncologist said. One thing is he thinks I will only suffer hair thinning rather than hair loss but all information I have seen says otherwise, oh well I will have to wait and see. I'm also HER2+ so will also be having Herceptin for a year then after that hormone therapy for about 10 years. Is anyone else having similar treatment plans?
I'm a teacher/SENCo too and I'm missing school so much as I love my job, the children just make everything ok and before my surgery working is what helped me feel normal. Oncologist has said not allowed back during chemo so will have to try and keep my hand in by doing bits at home if I can but not quite the same.
Although I know the next few months are going to be tough I hope 2016 brings us all health, happiness and laughter x
Hi Pop78, I haven't any funding towards my wig as I earn too much money, also I'm getting my wig from someone who isn't the hospitals normal provider. I considered getting human hair, though after discussing it with my wig lady I decided against it as it takes more maintenance and apparently the synthetic ones are very good nowadays. The one I've chosen is around £250, I could get it cheaper online, however the lady I'm getting it through offers other extras such as a cutting and fitting service. I felt a little tearful at first when trying on the wigs, but it was quite fun to try on some styles i wouldn't normally have! The one I've chosen is from natural image wigs and is called fantasy. Sissy xx
Hi Kim, thank you, I'm going to have a chat with school next week, I'm sure they will be great and I do have alot of mums that have already offered there help, I just need to learn to ask or accept help. It's all the unknowns. Look forward to chatting soon.
I am so glad to see this post for January chemo starters! I have done a lot of reading on this forum recently but this is my first post!
I was diagnosed in December with a 6mm mass which is grade 3 invasive ducal cancer, oestrogen positive and her2 positive, I have decided to have chemo before surgery to hopefully reduce the mass which might mean I'll only need a lumpectomy instead of mastectomy. I am 43, I have a 6 year old boy and boy/girl twins that are 4, I am so worried about having the energy to look after the kids throughout chemo, my partner works away sometimes and I do have my mum close by and a good group of friends. Is there anyone else with young childrens?
I had my oncologist appointment yesterday so hopefully I am going to have my first chemo next week, I say hopefully like I am looking forward to it!!! I just want to get started but I am absolutely dreading it!! I went and tried on some wigs yesterday, which was actually not too bad, not sure how I am going to feel when the time comes to shave my hair off and wear it though.
Looking forward to chatting to and supporting each other throughout our not so pleasant journey.
All good wishes for a New Year filled with as few traumas as possible, given the circumstances. As my first session gets closer, (Tues!) I must admit I'm feeling apprehensive
No time to get my very long hair cut over the holiday - & to be honest, putting it off - but I did shop for a wig, which was a much better experience than I anticipated. Came away with something that looks considerably better than my own neglected hair & now convinced it's time I made that appointment for a cut, regardless of whether the cold cap does its job!
Pop78 - the human hair wigs are very much more expensive than the synthetic ones (£400+ as against £60+) & have to be styled etc, so a lot more work. They told me in the shop that it is mostly those with permanant hair loss that buy the human hair ones. I'm working on the assumption that mine will come back, so couldn't justfiy the expense..
Good luck this month everyone!
Hi Sissy , I see you have already sorted a wig - did you have much to pay - what do they feel like, or are you having a human hair one.
Happy New Year to all, and as already said - hope we all sail through this with minimal side affects and with the support of each other feel better and with more ease , knowing we are not alone. I must admit, reading the literature given to me on T.C, which I will be having for the 6 cycles, scares me to death 😨. I have already been told I will definately lose all my hair etc, so with that in mind, have got an appointment with 'Headstrong' next Wednesday , to see scarves etc and to see about a wig !! After having 275 mls drained off my seroma on Christmas Eve , the stupid thing is refilling - hurts when I breathe in and trying to get through until Monday when unit reopens - don't want to have to sit and wait hours in A/E. Hoping you have all had a lovely Christmas and a good night last night - with love and best wishes to you all , Mechele.
To all those starting in January I hope we all have the best start to 2016 we possibly can. We will get through the next difficult few months and this time next year it will be a memory! Good luck and we will support each other through the treatment, hair loss and side effects. Thank goodness for the support that is to be found here!
lots of love Claire xxxxxx
i am am from Decided 2015 group and had my second dose of FEC on Tuesday. It is not as bad as I expected, everyone seems to react a bit differently but I haven't been sick once and have managed to get through well so far. I feel a bit tired and lose my appetite and sense of taste. I didn't cold cap so have lost my hair but my wig is really good and have only worn it since Saturday and is just part of me now.
just ask if you have any questions there are lots of us who are midway and can offer support.
I had a small ductal tumour and a 3mm bit in my sentinel node, if it had been 2mm I would have escaped chemo, but feel reassured that it gives me the very best chance to be cancer free. Gillian x
I too am starting chemo - 1st EC on Jan 5th. Trying not to think about it over Xmas, & that includes putting off decisions about the hair. I've opted to try the cold cap, but even if it does work, I can't see how 6 months or so without being able to touch up grey roots is going to be a good look!
Katy - so good to hear your story & to know there is light at the end of this tunnel, your words of encouragement are so appreciated!
I'm finding all the earlier threads so helpful. Although I'm far from prepared, at least I've an idea of what to expect - just hope I don't get all the side effects at once..
Hope everyone manages to get to enjoy Xmas..
Hi Kim, my husband grew up near Shorwell and has lots of family still on the Island so we go back regularly. We live in Kent now though. I have just been to see my BCN for a prosthesis fitting and she reassured me that putting off seeing the onc till Jan was ok and won't make any difference. I just need a bit of breathing space before chemo starts. She also talked to me about the cold cap. It may work and she had just seen a patient who had kept most of her hair. I have got pretty thick hair and don't suffer from headaches so it's worth a try. Nothing to lose! well except my hair!!
I am a teacher and I am very worried about how I will cope with being off work so long. I love my job. As you say being at work was the best medicine for me pre op. I teach year 6 but I am also deputy head so I may be able to go into work on the good week to do some admin jobs. I definitely won't be allowed too much contact with the children.
we must keep telling ourselves this is only a small part of our lives and we will be doing it to ensure our future! Hard though!
have a great Christmas.
Thanks Katy. I am petrified about chemo but I have decided to put it out of my mind until January.I was offered an appointment to see the onc next Tues but we have a big family gathering planned on the Isle of Wight and I can t let them down. I am sure another week won't make too much difference as some people have to wait far longer than me. All my nodes were clear bar one and they don't seem too bothered about scanning me to check for spread. I have had nothing but stress and worry about BC since I first went to the GP at the beginning of September so I reckon I need a break from it before I face the next very big hurdle. Enjoy your first Christmas post treatment! Claire xxxx
Just wanted to say hello to all you January starters. I was a January starter in 2015 having been diagnosed in Dec 2014 I want straight in to chemo. I urge you to use this forum as much as you can to support each other - there was nothing more powerful for me than being able to write all my innermost thoughts and fears in such a safe place with people who completely got it.
I finished active treatment in October and am now just taking Tamoxifen, I am celebrating a very different Christmas this year and know that you will all get there however long the road appears now. Sending you love and hugs, I'll drop in every so often if I can offer support. Katy x
I will be a January starter too. Waiting to see onc prob 4th jan then starting as soon as poss after that. I had two ops long story but ended up with bilateral mx and lymph clearance on right side. Second op was 3rd Dec. I Had op results yesterday. Only the sentinel node affected on right. Other side clear but got to have chemo. I am absolutely dreading it but I know I have to do it to ensure my future. Hair loss is my biggest hang up but I will try the cold cap. Not looking forward to not being able to work for so long either. There are a few of us on the just diagnosed thread who will also be staring in Jan so I am sure we will all find our way over here. Let's hope the mutual support will help us get through it.
I am going to try to forget it over Christmas than face it again after that!
Hugs Claire xxx