Hi Lilythepink and all you ladies with families.I take my hat of to you all (no hair under it though!)Coping with chemo and all its associated problems is bad enough and I do not know how you all cope. The one good thing for me is that my family are all grown up and left home so on practical issues I only have myself to think about.
Lily, just had a quick look on Google to see if it brought up any agencies who might be able to offer help with childcare during chemo and found one called http://www.chemomums.org who seem to have the right idea but does not say what area it covers. They also mention links to McMillan cancer so perhaps contacting them might help too. My hospital has a McMillan info, office in the entrance. If you have no family or friends able to help try asking a local Surestart, although I don't know if they are the right people they may be able to point you in the right direction. Good luck tomorrow and i will be thinking of you , as others have said if I was in your area I would be happy to give you support. Love Marlix
Hello Lilythepink and all you other ladies!
So sorry to hear you've been so let down by the nhs where you are Lily - it is very hit and miss regionally I think.
The only dvd's I can think of are disney ones or Ice age - or is Up out on dvd yet? 'Cos my two year old girl sat through all of that in the cinema - on my lap but she was transfixed!
I'm a week behind you in my chemo doses lily and am dreading next week's 2nd dose as I felt so ill for a week or so after my first and as you and other mums know, you can't explain why you feel so awful to little kids.
I've developed a case of blooming awful spots - anyone else got those?
Off to my nhs wig fitting tomorrow which I'm hoping will be more fun than I'm expecting!
Lots of love to all you stong women going through various stages of torment,
My two both love "Bolt" and "Toy Story". Their latest favourite is "Monsters vs Aliens" (esp the 2 yr old). And somewhat bizarrly they adore Michael Jackson's "Moonwalker".
For after chemo on Thursday I've bought "Cloudy with a chance of Meatballs" so we'll se how that goes down.
Big big hugs.
Do you have "Homestart" in your area, in norfolk we do, they match you up with a friend who can come and help. I used their services 15 years ago when my twin daughters were tiny and didnt sleep and husband worked away. I know it still exists round here.
Good luck for tomorrow and remember we all need to cry and let off steam sometimes and we also have to cope with still being wife, mother, daughter, etc on top of everything.
i go tomorrow to see about starting this god damn chemo c**p, am really not looking forward to it, feeling s**t because daughter has GCSE chemistry exam tomorrow afternoon but at least mine can cope on own for a while, and maybe if miracles do happen cook tea.
Right, its getting pretty serious on holby at the moment, so carnt stay on long (well its real life to me)
Anyway suggestions on good DVD's for 2 year old boy and 5 year old girl, to keep them occupied....? buying choc buttons tomorrow for bribery.
Last supper before chemo, quorn, carrots and salad, followed by G&T. yummy ohh and 8 mini eggs
Lily - my kids are a similar age too. I have two boys, the oldest will be 5 in March and the little'n is 3 in April. I love them to bits and thinking of them keeps me going when the battle seems so hard but boy can they be hard work sometimes!
Luckily the 2 yr old is pretty happy to amuse himself with colouring or puzzles so I keep telling myself that I only really have to find some energy after chemo on Thursday from 3.15, when I pick the eldest up from school, until bedtime at 7pm. I've bought a new DVD and some unhealty snacks and plan to be a bad Mummy, stick them in front of the telly and hope for the best!
Hi Lily, come on girl, even ivé been out and bought a bottle of red! You know what they say " we´re in the sh-- so lets open another" My OH is buggard of to our local bar, I think ivé drove him crazy today, Ivé been up since 3am and still no sign of sleeping, No seriously sorry to hear your on a downer,
Keep your chin up darling "don´t let the Bas----- get too you"
Lily, your little ones are the same age as mine (my son is 2 in March) and my daughter is also five.
Enjoy your G+T - i will probably have a glass of something tomorrow night too!
Thinking of you.
Lilythepink, hope you enjoy your G&T. Wish lived somewhere near your to come and support you. I'm sure you will be fine and in a couple of days you will look back and wonder what you were worrying about.
Good Luck, think positive thoughts and big hug
My babies 2 and 5, fortunatley daughter at school tomorrow so just the little one to deal with. Thanks Naz and Rozita, actually having a large G & T tonight (prob not advisable before chemo) but what the hell going to get hangover from hell tomorrow so might aswell make it worth it.
Have a massive cyber hug from me!
I know how you are feeling as i feel the same about my third session on Thursday..
Do you have anyone to take the kids off you at all for a few hours tomorrow (how old are they?)
Deep breaths, we all feel how you are feeling. Remember it won't last forever, it is a temporary blip and will be over soon.
It's going to be okay.
dear lilythepink, mega cyber hugs!!!!!! sorry your feeling so low its only natural can u not get anyone to help u tomoro nite thats so stressful 4 u . im a few weeks behind u n will b startin chemo in 1 or 2 weeks will get date thurs. the emotional rollercoaster were on is ridiculous i was so low n swollen yestoday been drained tday n looking forward to a big glass of wine tnite n am feeling a bit better, but u need sum support were r u living? only suggestion i can think is to rent or buy dvds 4 the kids n loads of nibbly food n hopefully theyl leave u alone. good luck n let us know how ur doing were all here 4 u xxxxxxx
Very emotional at mo next chemo tomorrow, bit upset ,plus this discussion still seems to be about hair loss, and to be honest, most of us, are either shedding tears over it or already sorted out a cold cap. I am practically bald, and struggling to deal with it, but apart looking in the mirror, i dont want to have anymore discussions on cold caps (even if you can afford private hire, it makes the rest of us feel s***) no offense meant.
This place is a life line for me, and often i am v tearful, but a hand to hold or a cyber hug is very important.
i am waffling, so sorry.
I am lost today, kids playing up, and woprried bout how i am going to cope with them tomorrow after treatment as husband working lates.
10 credits to anyone who reads this, not quite sure what the credits will entitle you too (maybe an offloading session in return)
Submitting now before change my mind
Am really sorry that you are not getting support from the NHS in your area. I must say that I cannot fault the help/support/treatment I have received, it has been fantastic. It just shows it is hit and miss.
Good luck for tomorrow.
Hi Steph and everyone,
Try the cold cap if you can!
Im about to have my 4th taxotere on Thursday and still have a full head of hair - Im actually getting it trimmed at the hairdressers tomorrow, which I really didnt expect to happen whilst on chemo!
My local hospital also doesnt offer the cold cap, (even though the one 33 miles down the road does), so its a DIY job, caps hired and sister does it all. I really do think the success is dependant on the timings and how long you keep it on afterwards (i carry on having them at home for 3 1/2hrs after chemo finishes, its a long day but manageable - the chemo doesnt cause nausea, so that really helps.)
Just to say - I first had chemo 4 years ago and lost all my hair on day 17 of cyle 1. Keeping my hair this time has made a huge difference to me.
I know it doesnt work for everyone, and also that not everyone feels the need to give it a go, but good luck to anyone who gives it a go, fingers crossed it will work for you.
In sunny warwickshire NO cold caps, no offer, no chance, just get on with it. Hubby v brave shaving off rest of my hair yesterday, but he was sick of waking up gagging on my hair that had fallen out so relief. Plus calls me his GI jane, and desperate to jump me, i said you better do it before wednesday when i have 2nd FEC as i will be sick as a dog again.
The NHS is really the pits! first appointment with Ocon, and she said that still waiting HER2 results, i said to her i was told they were negative before xmas.
I also had a go at her regarding my complete lack of care, got temp thurs, at 4.00pm 38. half an hour to get through to hospital, 1 hour 40 mins for them to phone me back, 1 hour in A&E waiting to be seen, and another 1hour 30 mins before they go me on antibiotics.
Dont you just love the NHS.
Dont get me wrong i can do this chemo thing, even with kids, to deal with, a failing business. But i am worried i will not be looked after if i get ill.
Lilythe pink (cold head, but warm heart)
Yes the cold cap isworth a try, I am due my fifth cycle on the 3rd Feb, and still have hair, it has thinned but I still have a good covering, my chemo was and is FEC T, although a had a bad allergic reaction to taxotere and was switched to taxol,
good luck with your treatment
Good luck to all those starting thier chemo - you WILL get through it and there is loads of support and advice on this forum.
Re the cold cap:
"Am getting my hair cut short this week and may go to a hairdressers that I know sell wigs, so if I get asked why I'm having a style change, hopefully it won't be a complete conversation stopper when I tell them!"
My hairdresser cried when I told her!! Refused to cut it the first 3 times I asked her and we both cried when the deed took place.
I was advised by my BCN to have my long, thick, wavy blonde hair cut short (sob) pre chemo and that their cold cap success rate was really high. The nurses were really good at frequently changing the caps and making sure they were on tight making a good contact with my scalp. My hair (about 60%+) fell out on the 20th day post chemo 😞
Glad I gave it a go though. The woman I sat next to on the Look Good Feel Better course last week had the same chemo regime as me, FEC-T, and only had very light thinning of her hair - really couldn't tell.
You may as well give it a go 🙂 we all react differently.
All the best
Thank you for sharing your humour - you have made me smile.
Seconds out - round 2 - good luck to you, lets hope SEs not so bad next time.
Rozita/Steph - I tried cold cap (paxman type) - not lost a hair so far (day 12, very early days), but scalp tingling, will have to wait and see. Cold cap not as bad as I expected but did take 3 hours, and made me feel cold. Daughter kept me plied with hot drinks which helped. Have felt pressure of the cap on my head ever since though.
Told OH I might end up with a bald patch to match his - he reassured me that he doesn't find it a problem - great help!
Hope everyone else is Ok
Hi roz and other ladies,
It's depressing to know that most people lose their hair despite the cold caps. If they have to be changed regularly throughout the chemo sessions, then the success of them must partly be due to whether the nurse has the time to keep an eye on when they need to be changed and how cold they get, etc, all seems a bit hit and miss, but still, I'd like to give them a go.
Am getting my hair cut short this week and may go to a hairdressers that I know sell wigs, so if I get asked why I'm having a style change, hopefully it won't be a complete conversation stopper when I tell them!
hi lily the pink hav u been trying th cold cap i get to know my date 4 chemo on thurs was hoping to try it but most women on here seem to loose it anyway. my god that is so scary coming out like like i hope i can be as brave. 1 week after second op to remove lymph nodes n am swollen around cut dusnt look red but dont know if its normal or not will hav to ring bc nurse later see wat they say. thers so many stages to this its 1 day at a time isnt it .xxxxxx
I start chemotherapy this Friday 29th January and had my hair cut last week by niece who cut it really short in preparation for chemotherapy.
I was in M and S Simply Food and walked past one of the chiller cabinets when a lady behind me exclaimed 'i love your hair'. I turned and thanked her and explained my niece had done it and she then replied with 'what made you go so short'? I told her quite freely and realised that I had embarassed her but told her I was ok with it. I then saw her later in the store and she said 'good luck'. Well, that made my day but how I wish I had a card of my neice to give to the lady.
I may however havey hair shaved this week rather than lose my hair in handfuls.
Hilarous, you made me smile, I'd have loved to have seen the ladies face in Sainsburys.
Good Luck for 2nd session on Wed xxx
Hi I too have now stopped working, similar situ, my own business now closed! Pretty sh-- no income, no benifits as not paid enough into spanish system, just to buy the pads for after my op as I was given a drain which was leaking for 3 hellish weeks cost me 17.00 euro´s, now found out ivé got to go to Malaga 36 days running for rads after chemo which is nearly 60 kilometers away and no transport! Oh it gets better daily.
Do me a favour and have another gin on me! Can,t afford is as I would be joining you!
I bet you look great with no 2. As soon as I start chemo mines straight off to the horror of my OH and kids.....
Keep your posts coming you make me feel a sh-- load better!
Love Teresa x
muffet, impressed you are still working, decided i couldnt do the kids, chemo and business, so had to close the business, which has cost me a s*** load of money. but physically and mentally the kids had to come first and dont have the constitution.
I was in sainsburys today buying milk, scratched my head and a load of hair landed on the counter, the women looked at me like i was a freak, so bought a bottle of gin, went home and asked my husband to shave my hair (after a glass of dutch courage). On anumber 2, but the bloody hair is still failing out, itchy itchy.
Bloods tomorrow, feeling pretty good so think will be ok for second round of chemo on wednesday, bring it on.
King of the world!!! soz i mean queen.
Hi, Ivé gotto say well done I love your sense of humour, followed your threads and your great, I´m very simalar to you but kinda shock my fellow work mates! Keep it up!
Take care Teresa x
hubby bought me flowers today,made me v happy, glad to be out of hospital, off To bed and bets are on how much hair will be left in morning, upstairs or down? Well happy my body is strong I am currently dealing with chemo pretty well. Just troughed at veggie curry, yum. Making the most before sick next week.
hi everyone thnks 4 all your comments have absorbed them all theyv been great. feeling a bit better just keep taking th painkillers n a few glasses of wine really help me get some sleep just on your back not being able to move without hurting isnt much fun is it but i know in a week or so itl get easier. im healing ok so thts a good sign just got my fingers crossed for thursday results. should get my date 4 chemo then see what cocktails they hav in store 4 me!!! got my hot water bottle ready 4 th cold cap. xxxxx
I've been given three days' worth of steroids (four tablets twice a day) to take for every dose of chemo - although the chemist wrote the wrong thing on the bottle so I took them on the three days leading up to the chemo! The chemo nurse was cross but it was too late by then, so had to take more steroids with the chemo and some more the day after. They certainly stimulated my appetite and have put on some weight but trying not to focus on that and just concentrate on looking after myself as much as possible. I did get insomnia with the steroids too but have been prescribed sleeping tablets which helped.
My hair hasn't started to fall out yet but my scalp's very sore and tichy like I've overdone it with the hair dye!
I've had constipation which wasn't fun and have on going mild diarroea now which's manageable. I can't eat any fruit or drink water as they taste horrid so am eating lots of veg to make up for it and taking some supplements to counteract the effects of chemo.
Lilythepink, I am so sorry to hear of your dreadful problems with the insurance company - what low lifes to put you through this when you're going through this awful stress with your health.
I live near Bristol so am going to the "looking good feeling great" workshop at the BRI in the city centre.
Rozita - I was sent home after my MX with two drains in and no help emptying the bags which was a horrible job. Also found sleeping very difficult as it was so uncomfortable. After a week and a half they were taken out I had lots of swelling which I wanted drained but my consultant said it was best to leave it to be absorbed by my body and reduce my risk of infection. Seems there's lots of regional variation in how women are treated post surgery with drains in or out etc.
I don't know if really helped, but a fried gave my a moss agate pendant to wear and it seemed to go down fairly quickly after I put it on. I'm quite into alternative medicine but know it's not everyone's cup of tea.
I think that amount of steroids seems to be the norm in my unit (Kettering) though some other units use different regimes.
I wouldn't recommend not taking them as they are given to lessen the chances of a bad reaction to the Tax.
Ask next time you go to chemo unit what their policy is in your area.
Hope that helps.
Take care, Debbie. xx
Sorry you're having such a bad time. It seems that insurance companies will do everything they can to wriggle out of paying up. My friend had a similar experience - she had a swollen gland in her neck, went to see her GP who gave her antibiotics, didn't clear so had another course of antibiotics. During this time she bought a new car and took out a loan along with payment protection insurance. 3 months later she was diagnosed with Hodgkin Lymphoma and started intensive chemo. As she couldn't work she contacted the insurance to take over the loan payments, they refused as her initial visit to her GP was before she took out the insurance. It was so unfair as obviously she had no idea that she had anything serious wrong with her (and at that time neither did her GP). EVentually she managed to get a refund of the insurance premiums - on the basis that she wouldn't have taken the insurance if she'd known it would be invalid - but that didn't help much with the actual loan. I hope you manage to get it all sorted out. My friends doctors were very helpful in trying to get the insurance company to change their mind, didn't manage it but did contribute to getting the premiums back, so maybe see if your oncologist or GP can help with a supporting letter.
On the hair front, I have no underarm hair at all and just a sparse crop in the lady garden but my head is still pretty well covered. My current worry is my eyebrows which have been very itchy over the last few days so I'm concerned that they may be on the way out - eek how strange will that look????
There is a race to see which part of me goes bald first, currently in the lead is me bush, me pants are full of hair. The ginger minge is on its way out. Sorry just trying to see the funny side of this situation
Having day from hell, received letter from insurance company, they are stopping payments on business loan as they say i was clearly suffering systoms before i took out the policy. This was not the case when i went to docs bout lump, she said how long have you had it i said i dont know because i have had lumpy boobs for a couple of months round the time of my period (this is normal for me), so she wrote down had lump for 3 months. My business carnt afford to pay the loan at mo, as closed it due to having chemo, and carnt do kids, chemo and my business. What a mess
Sorry but my life is getting worse and worse at the moment with no way out
Hi Rozita - just up and about but not had loads of sleep, Hope I didn@t scare you re. steroids. I am having EC and take 3 steroids a day, for three days. Having read the instruction leaflet I can take them all together so take them early in the morning (before 8.30) so that i have more chance of sleeping. On chemo day they are given at 11.30 ish which is obviously too late in the day for me. Since dx in Aug I have put on 6-8 lbs and that includes a cruise, christmasand been confined to the house due to snow so no exercise. The good thing is that I have no real taste for wine or chocolate so I think that has helped.We have enough to think about during chem than to worry too much about our weight, I'll deal with that in a couple of months.
Rozita - my experience is similar to yours,WLE and SN and then a month later axillary clearance (home with drain). Both were done as a day case but followed up by visits by district nurses to check or change dressings and check and empty drain in required. My BC nurses also visited. Are you getting it this support? If not try ringing your BC nurses for advice re swelling and support. Those first weeks are uncomfortable for sleeping, I found folding a pillow and lying on my good side with it underthe pooly breast helped ( I snore on my back!) Also I moved into the spare bed so asnot to disturb my hubby. Good luck. Marli. x
I am posting a link below to our publication about potential problems after surgery which you may find helpful to read, also, please feel free to call our helpline for further support and a listening ear, it may help to talk things through with someone in confidence. The line is open weekdays 9-5 and Sat 9-2 on 0808 800 6000.
Also rozita - if you have swelling, that should be checked regularly as you are likely to need liquid drained off. I had my drain in for 3 days, and after that saw my surgeon twice a week for about 5 weeks to have liquid drained. It wasn't a problem - he did it with an ultrasound to find the pockets of fluid, took a couple minutes and couldn't feel a thing as area stays numb for quite a while - but each time he took quite a lot out, and said it was completely normal. I would advise you to get this checked out soon - I'm a little surprised you were send home so soon without a drain.
rozita don't worry too much about the weight gain. I am overweight and can put on pounds just looking at food - but haven't had a problem with the steroids yet. For me it tends to even out over the cycle - don't want to eat much for first 4 or 5 days, then starving for 3 days - but luckily my cravings have been for salads, veg and fruit! Have only gained a pound over first two cycles. I only take the steroids for 3 days, so there is plenty of time to lose the weight before the next cycle.
Good luck x
hi all been reading this column 4 a few days. just been thru 2nd op had lumpectomy first n sentinal node out but had t go back in on monday 4 node clearance as node had 6mm in it that scared me!!!had shortage of beds n sent me home next day with drains out cant sleep as swelling up n uncomfortable at moment think must b normal. going back 4 results on 28th so fingers crossed . meeting my oncologist same day n going to start chemo soon after. been reading about the steroids really dont want to pile weight on on top of everything else. do u have to have them? xxxx
Purdey - do you know if 8 steroids is standard on Tax? I move on to tax soon and that is really scaring me! What time of day do you have to take them?
I'm also struggling with steroids - have had 5 or 6 nights of virtually no sleep on my 2 cycles of FEC so far. I take 2x2, last ones by 1pm. Has anyone been given sleeping pills to help, and do they work?
Hi Marli. I sympathise with the steroid thing.
As you can see I am still awake at 4am ish.
I have second Tax tomorrow, so on 8 steroids a day.
Hope you manage to get some sleep.
Hi all Had my 4th EC yesterday(20th) and as you can see unable to sleep due to steroids. Will take tomorrows before 8.30 to help me sleep tonight. Had a lovely chat with nurses and other ladies during session today, swapping advice etc. The ward sister did say that she thought that having a poitive attitude was a big help in avoiding side effects and that they could usually tell who was going to have problems. Interesting theory. None of ladies there had any major problems.
To all ladies worried about wigs, I was convinced the lady opposite had her natural hair but it turned out it was a wig, she and the nurse felt the same about mine. We came to the conclusion that they must be fine to others but because we are so aware of them and the slight movements we feel, we have te problem. It made me feel much more confident. Hope it helps. Hope everyone is coping well.Marli. x
Just had all my hair cut off - what a trauma!! Tried to think of taking control etc etc, but just looked in the mirror and thought Prisoner Cell Block 9 - that gives my age away! Plonked wig on to feel normal and now working my way through a bottle of wine (needs must and all that).
Will face it all in the morning and feeling quite mellow now.#
Sorry - that should be prisoner cell block H - wine working!
Wendy - Glad to hear it all went well for you, hope you continue to feel ok.
Anne- best of luck for tomorrow. I'm sure you'll be fine. The first cycle is the worst, in my opinion, due to fear of the unknown. It's hard when you don't know what to expect or what effect the chemo will have on you. I hope you are reassured by the fact that so many people on here cope very well and don't find the SE's too bad.
Everyone else - hope you're all doing ok and things keep going well for everyone.
I'm now 2 weeks past my 3rd FEC and can honestly say that I'm feeling great! The few SE's that I've had (mainly tiredness and constipation) vanished last friday and since then I've felt absolutely normal. Today I walked my older son to school, went to my GP to organise a new sick cert (feel a total fraud but my job involves close contact with loads of coughing and sneezing members of the public so onc advised avoiding!), spent a couple of hours trawling the local shopping centre for clothes for the kids who both seen to have had a growth spurt, came home and made a batch of pasta sauce before repeating the school run and I feel no more tired than I did before this whole rollercoaster ride started!
I have one more week to enjoy feeling good (hopefully) before my 4th, and final, FEC next thursday. After that I'll be moving on to weekly Taxol which I'm already starting to feel slightly nervous about as it's another step into the unknown.
I'm having chemo before surgery as my tumour was so large (Grade 3 and extremely fast growing!!) and so far it has shrunk from 15cm to 4cm (woo hoo!!!), my onc thinks that I'll probably still need a mastectomy even if it continues to shrink but it's for the breast surgeon to advise. I'm seeing him on Monday for the first time since before chemo started so interested and also nervous to hear what he has to say.
Keep well, ladies.
Pearlysox, glad to here you ok, am getting the collywobbles now, just been to the pub and had a couple of beers, now on the bottled water to get me on the right path (I hope). Saw the wig man today and got three wigs to pick from which were really nice, in fact my own hair looked a mess and thought would be nice not to have to worry and just put on a wig. Will be in touch to let you know how things go tomorrow.
Hope everyone ok and really appreciate all the support
one week on from first FEC and still feeling well,just slight headache,dodgy bowels and sore scalp(feel a bit of a fraud being on the sick from work)....not shedding any hairs just yet but dont think i will get away without that SE. Hope all who are soon to start chemo can take comfort that not all the SE are compulsary and you may sail through it. I know its early days so long may it continue!
Well done pearlsox!!!!!
Lucinda, booked onto look good in April, at the QE in brum, it was the nearest, but would like to go sooner, spent fortune in boots on false eyelashes, and eyebrow pencil, nice smellies and hairband to cover current bald spots, that are getting bigger. Where are you doing the look good workshop? i am warwickshire.
My hubby is going to try and get sometime off so i can get one of these duvet days, people talk about as i am dead on my feet at the moment. Love my kids, but just want to switch them off at mo.
All My next chemo is nxt week, i wasnt offered a line in, and just hope they have better luck next week with finding a good vein.
Slept better last night, maybe it was due to the glass of wine i had, first since chemo, knocked me for six!
Well it all went surprisingly well ! Having the Hickman in was the worst the day before. The cold cap was as it says cold but not bad if i am honest. Bit teary to start with kept it together as i dropped kids to school they were already nervous enough without me leaving them in tears. Got about 50 yards down the road after the school run and burst into tears but then was fine.
Everything was a bit of a revalation i thought the drug would be on a drip instead the nurse sat with me slowly injectng it into my line for 40 mins. She was great - loads of small talk - and then it was over. Had to wait the extra 2 hours with the cap on. But with all the fluids they give you i was up and down to the loo many times i think my bladder must be the size of a pea!
Then home. Kids really glad to see me not asleep or being ill.
So nearly 24 hours on and i don;t feel too bad. Even had a good nights sleep. Got up this moring and did the kids lunchboxes for school. Just taken all my tablets ( i think these are what are keeping me well at the moment ) but long may it continue. My tablets run out Friday so i guess the weekend will be when it kicks in. But am just taking it one day at a time.
Anne i will try and post again before you start tomorrow. Try not to let you mind race away with you. Hope it all goes well.I will be thinking of you. XX