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May 2019 Start

Member

Re: May 2019 Start

Hello everyone, I have just found this group. I had my first chemotherapy on 17th May, second one this Friday. Side effects been minimal so far and I've been able to keep working. Hair started to fall out last week so had it shaved at the weekend but love my wig. Best wishes to you all x

Member

Re: May 2019 Start

Hi Joemic, 

 

Good luck for tomorrow and for Friday 🍀Hope you stay well and thank you for making me laugh with your top tips ( or bottom tips) 😂. Will you change regime after this one to docetaxel ? I saw my oncologist yesterday and advised to have a weeks break as although my infection markers are right  down my white bloods are now high ( I can't win) At least they are working again after being at zero. I feel at this rate I'm never going to get to the middle let alone the end! 

Mangomum xx

 

 

 

 

Member

Re: May 2019 Start

Great to hear everyone is managing fairly well with their regimes. It's my Onco appt tomorrow prior to 3rd chemo friday, hopefully all bloods ok so I can crack on with this, it'll be my half way point so am looking forward to getting it out of the way.

 

I don't know if it will help anybody losing their hair but when I had mine shaved I noticed that as long as the remaining hair was smoothed in the direction your hair usually grows it stopped being sore, I also washed my hair by making sure I only did it in the direction of my hairs natural growth, rinsed and patted it dry the same way. I made sure whenever I took my wig or beanies off I smoothed it down - no discomfort sinceSmiley Happy. Although I've lost an awful lot of hair I've still got a covering, it's very white now; I thought I would have been totally bald now so am just hoping that if it decides not to fall out totally it doesn't decide to do it after my chemo finishesSmiley Frustrated, I'm prepared for it now but I don't think I will be then.

 

I'm going to lower the tone a bit now but top tip, if you've lost your pubic hair be careful when your using public toilets as it can get a bit wet when you hover over the loo - luckily I sussed it before I needed welliesSmiley LOL; oh the joys of chemo.

 

Hope everyone has a good week with no nasty side effects, I'm going out for tea with my manager and ex manager tomorrow, although I'm not working at the moment we still like to keep in touch and I appreciate the fact that they take the time to do this every 3 weeks it stops feelings of work isolation.

 

Joemic x 

 

 

 

Member

Re: May 2019 Start

Good Morning Ladies

 

I am coming out the other side of the brain fog since Fridays’ EC. Had a good nights sleep so now feel more human again.

 

i have tried to catch up with everyone’s progress and what is positive is that we all seem to be finding ways to deal with the challenges, you are all really inspiring. 👏👏👏

 

it it might have been a coincidence but this weekend saw bald patches spreading, I look like one of the very early chicks in Springwatch (tufts etc) but I am very head sore so finding washing it a struggle. I think I will feel happier with it once it’s all gone this in between stage is not the best. I will try the suggested focus on my face.

 

I also ordered a fringe attached to a headband, which should sit under hats/beanies etc technique needs some work 😀.

 

lots of love to all

xxxx

 

 

Member

Re: May 2019 Start

Hi SP, I forgot to mention the vein issue. My vein was still tender today so they used the other vein on the back of my hand, the only other option for me. The nurse said it is hopeful that we can alternate them as they then have 6 weeks to heal. Although I didn't feel any discomfort through treatment this time, since I've come home the vein looks to have collapsed and is quite tender again.

Hope yours heal quickly xx

Member

Re: May 2019 Start

Evening ladies, 

I hope your treatment went well today Mangomum, my own went smoothly but I reacted quicker, felt very light headed during treatment and a wave of extreme tiredness for the next 2 hours. Then mildish nausea. I took DOMPERIDONE then made myself eat a meal - feel much better now😁 I hope the cold cap works for you..

I totally get the whole 'hate looking in mirror' thing, I am forcing myself everytime to drag my focus away from my head and look into my eyes, then smile. It really is still us looking back 😍

Louise, I have not noticed anyone mentioning this before, wrre you told why? I don't know if it is relevant but my oncologist told me the T doses are harsher on your finger and toe nails. Maybe message one of the nurses on the forum.

Good night all, hope you all get a good night sleep xxx

Member

Re: May 2019 Start

Docetaxel

 

Did anyone have Docetaxel first - as opposed to after FEC?

 

If so, did your hair fall out?  And how long before it started to do so

 

Thanks

Louise

Member

Re: May 2019 Start

Hi lovely ladies, 

 

After my windy days on the beach my head became very tender Saturday night and I started shedding quite a lot of hair. Yesterday I shredded loads - but all over and it felt really uncomfortable /prickly. This was day 20 so quite late in the cycle! Today it has calmed down and I took the plunge to gently wash it and its still mostly there but thinned out all over. I'm going to try the cap again tomorrow, but I think this Fec is really harsh on our hair so I'm not holding breath it works this time after how much came out yesterday!

I have a wig coming next week anyway and I have a turban / beanie just in case.

Sounds like every one is getting to grips with the hair loss and wearing whatever makes them comfortable /feel good and I admire all your positive attitudes and funny stories 😊. I know if I have to I can do this!

My main concern is staying out of hospital this time and actually having a whole week at home feeling well with my kids etc. 

 

Good luck everyone!

 

Mangomum xx

Member

Re: May 2019 Start

Good morning ladies, I hope everyone has enjoyed a lovely weekend. Its round 2 of Me-v-C today - let the battle commence! I definitely feel like I won round 1 on points lol. Its great news that you kept the mouth soreness at bay SP, I had 2days with a sore tongue but was only mild, I took your advice with salt water and it went away. I also had a problem with my vein, it started getting painful when the nurse syringed the drug in. I called the chemo unit after a week as it was very painful along the length of the vein, from just after my wrist up to half way up my upper arm. I was told to use hit water bottle and rub ibuprofen gel on it. It is still tender in my forearm so I will let you know if we have to use a different vein today. I had axillary clearance of lymph nodes so cannot use my other arm.

I had been wearing a thin tube of fabric over my head/neck, topped with a pretty silk scarf at work, I was so hot when I left so in the car I whipped off the base layer and just put the silk scarf over my head - it felt lovely but as I was driving with the window open the scarf blew off into the back of the car, so I had my first 'bald in public' experience!

Joemic thanks for your kind words xx my newest head wear is so far my favourite - it is like a wide soft Alice band with a  long chiffon scarf attached that you tie into a bow. I bought it for £2 on Wish but it took weeks to come! They are available on Amazon and ebay etc.

Rose2020, I don't use social media either but totally agree it is so nice to hear everyone's experiences in 'real time', glad your wig fitting went well x

Mangomum, I've got everything crossed for your blood result today, I'm sure you won't want to be postponing your chemo. I do hope it goes ahead and that you don't get an infection again! Some time away must have been lovely, I hope you get to do it again. Hopefully your cold cap will be successful, it seems to have worked so far as most of us are now baldies. I have a mole with a few stubborn hairs left, I habe adopted the name 'Baldilocks and the 3 hairs' haha.

Good luck with treatments and symptoms this week ladies xxxx

SP
Member

Re: May 2019 Start

Morning ladies,

 

Just wanted to share that I’ve NOT had mucositis this weekend!! This was the weekend when it was so bad on the 1st cycle!! I’ve kept the salt water mouthwashes going and taken Vit C and it seems to have worked!! Amazing that such a simple thing can make such a difference? I’m chuffed as a burning mouth is truly horrible! This weekend I’ve walked 4 miles both days. This definitely helps to reduce any fatigue. 

 

My sleep pattern is non existent just after a chemo treatment so I am awake a lot in the night. Does anyone else get this? It steadily improves after about a week so now I’m getting longer periods of sleep, which helps. This cycle, the vein which was used for the cannula is aching. I think it’s been damaged by the dreaded Epirubicin? Has anyone had this too? I can only hope it heals over time. I need to get the nurses to use a different vein next time? I had a left mastectomy and sentinel node biopsy. The chemo nurses are only using my right arm but, if the consultant gives authorization, they say they can use my left arm, as I haven’t had any additional lymph nodes removed? So, it’s on my list to ask next time! 

 

I also only wear my wig in short bursts. I definitely think that the bamboo caps and hats are the ones to go for as they are super soft! When I’m walking, I wear these. At home I brave the bald head....until the doorbell goes when I’m panicked into pulling something on my head...sometimes it’s at a weird, jaunty angle as I open the door?! It is upsetting when your hair falls out in handfuls so I agree that getting it clipped mega short or shaved is the best thing to do emotionally. However, I now hate looking at myself in the mirror. I simply don’t recognise the reflection as me and it is a shock every time...

 

Hope we all have a good week.

 

SP

xx

Member

Re: May 2019 Start

Hi ladies

Great to hear everyone seems to be doing well so far.

Thanks Dapple, I think I'm going to give them a swing.

 

Sewbuddy - It is a shock when your hair falls out suddenly but like you say it's strange that when we decide to shave we get a bit of control back - much needed to keep the spirits up I think. I got one of the bamboo wig caps and to be honest I found it much hotter than the nylon one. My scalp and the wig cap was sopping wet when I took it off, an uncomfortable feeling. Nowadays I only wear my wig for short outings and can't wait to take my hair off when I get home and put my beanie on. I'm still rubbish at tying scarves, no matter how many times I watch you tube at this rate my hair will have grown back by the time I manage to make a decent jobSmiley LOL I hope you manage to stay at work if it's helping you cope. Good luck for Monday, I hope it goes well for you.

 

Mangomum - I'm pleased you managed to have a couple of days away and it lifted your spirits - good stuff. Pleased to hear your hair didn't blow off in the wind, that would have been interestingSmiley Happy at least it entertained your girls. Good luck for your 2nd on Monday, I hope it goes well for you too.

 

Rose - It's good to hear that you had a positive wig fitting experience, it makes all the difference, I wait to see what little gem of a wig experience you haveSmiley Very Happy, I haven't whipped mine off in the supermarket since, mind you I think people just think I'm barking because I'm chanting don't forget you've got your wig on all the way around, silently of course but I guess my lips must still be movingSmiley LOL. I agree it's difficult being away from work but console myself with the fact that if I concentrate on keeping as well as possible I'll be back sooner which I am looking forward too.

 

Wishing everyone positive experiences for the coming week

 

Joemic x 

 

Member

Re: May 2019 Start

Hi Joemic (and everyone else!) Just dipping in quickly to the thread this time but saw your question about vitamin d supplement Joemic and I can help with this - asked my oncologist on Thursday if ok to take them and she said absolutely fine. Take care everyone xx

Member

Re: May 2019 Start

Hi all

Lovely to hear everyone's updates I've never been one for Facebook or social media but it does really help reading about all your  experiences and tips on here as at home I want to keep things as normal as possible and not be talking about treatments and side effects all the time. 

I'm glad you're recovering from your infection Mangomum 7 days in hospital must have been awful for you. I know what you mean about work I too was advised to go on sick leave as I work with children but I really miss it I can't believe I'm saying that as all we talked about was retirement when I was there! I really miss having a purpose every day and seeing all my work friends. Talking to the consultant last week she said prepare to be off work for a year to get through the chemo, surgery and radiotherapy I will just have to find some hobbies as life until now has always revolved around work and family.

I too am now without hair! I was lucky to have a really good wig fitting experience in a salon near me run by a lady who had chemo herself 2 years ago. She made what I was expecting to a difficult experience into quite a positive one I definitely feel more like me again with some hair on my head! Everyones stories about whipping off wigs in the supermarket or holding on to them in the wind have made me laugh I'm sure there will be more funny stories before we get our hair back!

Good luck to all for the next week

Love Rose x

 

 

Member

Re: May 2019 Start

Hi Sewbuddy and everyone, 

 

You sound like you started the same day as me! I'm due my 2nd fec on Monday although I'm still on oral antibiotics for my infection so not sure what my bloods will be like! Seeing the oncologist first thing  on Monday so hopefully it will go ahead. I'm feeling fine and haven't had any high temps since leaving hospital on Monday. We had a couple of days away with the kids to the New Forest which really helped me feel better and will try to do that each cycle all being well. I too didn't suffer with sickness or too many side effects until I started with flu like symptoms on day 7. I took my temp and it was 38 so on advice from the oncologist went to A&E where I was admitted and ended up staying nearly a week! I did use the cold cap and touch wood so far no hair loss on my head although I have shed from other areas. It was windy on the beach yesterday and I forgot my hat so all I kept saying to hubby was " I hope my hair doesnt blow off" my girls thought it was hilarious watching me trying to cover my hair so the wind didn't snatch it. That night it felt quite tender but it's still all there!

I have a wig booked and some scarfs too but I can imagine the warm weather will make this uncomfortable. I think it's great you have managed to work and don't think you are a martyr in doing so. Trying to feel /keeping things the same if you can makes all the difference. I was signed off straight away as I work with children in a large school - but not working has made me feel out of sorts and guilty. I get lots of messages and updates but knowing they are covering my workload adds to the stress. Fingers crossed for next week.

 

Mangomum xx 

Member

Re: May 2019 Start

Hi everyone, it's great to hear that many of you are doing well after your 2nd chemo. Some interesting discussion about diet and supplements. I had a message on another thread some time ago from nutritional therapist who recommended certain foods and also a link to a study of different foods and there effect on different cancers. I will try and find it and put the link on here. 

I shaved my head on bank holiday Monday after a rather distressing couple of days - I had my hair cut short on the Thursday as I had two big family celebrations to attend on Sat and Mon. Friday my hair suddenly started to come out in tufts! I tried to use hair spray to keep it in place for the Saturday event - just about got away with it but at work Sunday it was falling out badly. By the Monday event I had a large bald patch on top with only a tuft of fringe, I tied a scarf over it and got hubby to shave when I got in. I thought I was mentally prepared but was not expecting it to happen so suddenly. Once I shaved I felt much more in control again. A week later and I am completely bald. I am wearing scarves etc but boy are they uncomfortable - my head gets so hot and itchy. I tried on some wigs but they felt tight and uncomfortable too. Think I might try some bamboo head gear, I've heard they are softer and cooler.

How are you getting on with your nail regime SP? My finger nails seem OK so far but I have 2 toenails going blue. My oncologist said I will lose them after my next chemo. It sounds like you had an awful day for your chemo but I'm glad your side effects are not too bad. Fingers crossed your salt water keeps the soreness at bay.

Over the weeks I only had 3days sick from work, my onc doubts if I can maintain that through the next two rounds!! I have booked a few days holiday in the middle week this time for a rest. So we will see. Although it's tiring it helps me to not dwell on symptoms etc, it's not right for everyone I know and I'm not trying to be a martyr- I certainly won't put my health at risk. Kelly P, commuting is not good, enclosed space with unknown germs floating about is risky.

Bananabrain, I watched a few of the 'you, me and big c' it was very relatable and broached subjects that we maybe don't discuss with our family and friends.

Joemic, I am going to the Headstrong session on 10th, but I'm learning lots from you tube too as I need it now. The look good feel better course will be a few weeks away and yes I believe you are right, mainly make up. But I have been more concerned about losing my eyelashes and eyebrows than my hair lol. I am guilty of always putting my face on before going out so I think I will enjoy it.

I wish you all a lovely weekend, and hope no one has any nasty side effects to deal with. Xx I have my 2nd FEC on Monday. 

Member

Re: May 2019 Start

Hi Ladies

 

Glad to hear things are going well for you and any side effects are being well managed by meds. Hoping your sickness doesn't kick in this time Ruth - I'm so grateful that it hasn't affected me so far.

 

Mominette, Dapple, Ilovehunny, Kelly, Louise and Sewbuddy - I hope your chemo regimes are being kind to you and you are not suffering from any nasty effects.

 

Enjoy the weekend everyone - they say it's changing for the worse again next weekSmiley Sad

 

Joemic x 

Member

Re: May 2019 Start

Hello all

 

Good news SP, I’m so glad your side effects have reduced.

 

i have just got home from my 2nd EC, hoping the sickness doesn’t kick in (4pm last time) but have planned for it and eaten far less this time. I am also trying seabands, so I will let you know if they appear to have any effect.

 

the weather  forecast is good for the weekend, so I hope everyone manages to have a lovely side effect free weekend.

 

xxxxxx

 

 

SP
Member

Re: May 2019 Start

Hi everyone, 

 

Just thought I’d touch base to let you know that I’ve survived this week post 2nd chemo!! The side effects have been milder in that I’ve had less nausea ( new anti sickness meds), which is positive! I did have two days when I could have slept for England and fell asleep everywhere! This was probably brought on by the fact that my nightly sleep pattern is all over then place, so I’m not getting as much sleep each night.....think my body needed to catch up on some recovery time? 

 

I started back on the salt water mouthwashes this week, in the hope that this would stave off the dreaded mucositis.....so far, I’m ok!!! Good old salt water is my new best friend!!! I’ve also been taking Vit C as I’ve been told that this helps with mouth problems. 

 

I am using a hand and cuticle balm at night to hopefully avoid split nails etc. Thought I’d share that I bought some silk “moisturising” gloves to wear in bed, which allow the balm to soak in and not rub off. They are really comfortable and my fingers are definitely softer for doing it! Got them from Amazon as they had better reviews than the cheap, cotton gloves, which can apparently be tight. 

 

Hope everyone is coping? Remember, this is a marathon, not a sprint and each cycle is definitely a roller coaster of physical and emotional symptoms. Unfortunately, I’ve been here before, so know from experience that staying positive is half the battle. I keep telling myself that my 3rd EC chemo is a milestone as then I’m done with the hand syringed cherryade!!  I’ll be half way done?! That will surely be cause for celebration.....?? 

 

SP

xx

Member

Re: May 2019 Start

Good afternoon ladiesSmiley Happy

 

Ruth - Glad your wig debut went well - much better than my first time, I was in the supermarket when I got really hot, momentarily forgot where I was and whipped my wig off, I don't know who was more embarrassed me or the man next to me, he recovered well and said gee I wish I could cool off  like that, we both laughed and I beat a hasty retreatSmiley LOL, I won't be doing that again let me tell youSmiley LOLSmiley LOL. I now wear a sunhat on top of my wig - looks lovelySmiley Frustrated. Don't think I'll ever get over it and am just glad I've never seen him again sinceSmiley Very Happy. Good luck for your 2nd chemo tomorrow, I hope it goes smooth for you.

 

Rose - Don't worry it wont happen to you, you've got way more sense than me.  I bet by the end of chemo, we'll all have some funny/embarrassing stories on our wig wearing escapades, at least it'll prove BC is not all doom and gloom. Must admit I've got 3 teenagers who between them have managed to age me quite a bit, it's hard going but I wouldn't change them. I'm getting my own back a bit cos I've also got a pink wig and a blue wig, it's amusing seeing how embarrassed they are when I'm wearing them - well that was until their friends told them how cool I wasSmiley LOL, never thought that would happen, trouble is they are now genuinely telling me which other colours would suit me, I only wore them for a laugh but they seem to have made it their mission to choose me the best wigSmiley Very Happy. At least no one is embarrassed about my hair loss nowSmiley Happy. They are all taking bets on how my hair will grow back once chemo has finished.

 

I wish all who are having treatment this week a smooth, minimal side effect time and for those who have just had theirs I hope you are recovering well with minimal upset. We can and will get through thisSmiley Very Happy

Enjoy the rest of the week

 

Joemic x 

Bananabrain - Glad your wig wearing went well in the wind and stayed putSmiley Happy. It must have been so difficult for you when your mum had cancer and then to find yourself in the same position years later, life can be so cruel sometimes. It's great to hear you have had very little side effects from your 2nd cycle, I hope this continues for you - it makes the burden of chemo a little easier to bear.

Member

Re: May 2019 Start

Hi all 😊   Nice to hear how everyone is doing.

 

Joemic - that's so lovely that your daughter was able to open up a bit from your trip to the hairdressers.  I think it is really hard for teenagers especially as they have so much going on in their lives anyway and they're not always the best at expressing how they feel.  My mum had cancer when I was a teenager and looking back I can see how hard I took it but I never talked to anyone about it which was not the best way of dealing with it tbh 😐

 

Ruth - I've read a few times that hair can come back quite different after chemo.  A lot of people experience the chemo curl.  I already have (or should say had!) curly hair so maybe it will be super curly when it comes back!  A friend of mine had chemo for breast cancer a few years ago.  Her dead straight hair came back wavy but over time it has now lost its curl again.

 

Rose - you might feel much better once you shave your hair off - I know I did.  In fact, I quite like my (almost) bald look, so much so that when it grows back I am thinking I will keep it very short.  My hair looked so awful and greasy and thin once it started to go, no hair was definitely an improvement.  The worst was when I got out the car and the headrest was covered in hair - that was when I knew it had to go!  I've been out in my wig a few times now and it's fine.  I even walked the dog on a very windy day and it stayed in place 😁

 

I had my second FEC cycle yesterday and atm am feeling much better than with the first one.  Just some mild nausea which my meds seem to be keeping at bay for the moment at least.  Not sure if not using tbe cold cap has made a difference too as I did feel that contributed to the nausea.  We'll see what the next few days bring...

 

Wishing all a good week 😊

Member

Re: May 2019 Start

Hi all

Good to hear you had minimal side effects after your  2nd EC Joemic. The nurse who looked after me for my 1st said they tended to get worse everytime so it's nice to hear it's not always that way!  I really sympathise with you about your daughter I also have a 15 year old girl who is very emotional and quite low in mood at the moment she's always been quite anxious but is struggling quite a bit at the moment.

My hair started to fall out yesterday I'd already had it cut quite short but think I might have to consider shaving it soon as I'm leaving more hairs on the cushions than the cats do! I've also brought my wig appointment forward to Thursday and have got the scarves and beanies ready it was good to hear your wigs 1st outing went well Ruth! I feel a bit anxious about the first scarf/wig trip out but know it's got to be done!

Take care everyone 

Love Rose x

 

 

 

Member

Re: May 2019 Start - picc line covers

Hello all

 

Really pleased you have had minimal side effects Joemic, I am going in for the 2nd EC on Friday, so always read with interest your experience.

 

I finally took the plunge and my husband and both boys helped me to shave off my hair (down to a no 5 - after advice). I couldn’t believe how much better I felt, I was starting to dread having a shower and dealing with all the hair coming out.

 

so have had my first wig outings today, felt a little self conscious at first but settled into quite soon. I hadn’t thought about how it will grow back Bananabrain, I assumed it would be the same??

 

It must be hard going through this with teenagers, my 2 (8&11) seem reasonably happy to tell me what is worrying them.

 

in terms of weight loss my only experience is loosing 3 stone with Slimming World which I have kept off for nearly 3 years, having said that I cannot eat unlimited potatoes/rice/pasta (as SW allow) and would minimise these portions. I do like quinoa, but does need flavour.

 

i hope everyone is doing well.

lots of love to all 

 

xxxxx

 

 

 

 

 

 

Member

Re: May 2019 Start - picc line covers

Good afternoon lovely May ladies

I hope everyone had a good bank holiday - despite the rain!.

 

Interesting topics regarding foods and supplements. I've always eaten very healthily, love my fruit, veggies and nuts, never (well for 20yrs) added any salt to my food or eaten fried food - apart from the odd egg which I absolutely love but am avoiding at the moment as I like my yolks runny. I still managed to whack the weight on during menopause even though I stopped eating chocolate and sweet stuff only succumbing on the rare occasion. I don't like alcohol (comes from being blind drunk at 14 year old - never touched the stuff sinceSmiley Very Happy) so can only presume I'm eating too much fruit and the fruit sugars have encouraged the weight gainSmiley Sad. Not sure what else I can try - has anyone tried quinoa? I'm wondering if I should substitute potatoes for it occasionally - I like my meat but only very lean and generally eat chicken more than any other. Anyone got any ideas - I'd be more than happy to give them a go.

 

Does anyone take vitamin D tabs - I've read that we should take them daily whilst on chemo but as of yet I haven't taken any supplements as I find the advice confusing in that one study will say you should and another says you shouldn'tSmiley Frustrated, I just never know what to do for the best.

 

I'm nearly 2 weeks post 2nd chemo and feel good, I never felt tired this time or experienced acid reflux although like SP I did experience difficulties with my veins - I'd kept well hydrated and had my hand well and truly wrapped up, they got the vein first time but towards the end of the C part of the EC my vein started aching alot and it started collapsing - she just managed to get the last of the injection in. I had to have my arm wrapped up in the heated blanket for another 30 mins. That vein is still tender now and I can no longer wear my watch but it is the only side effect I have suffered from the EC this last time so I can't complain. The main side effect I suffered was after my last Zarzio injection, I woke in the night with pain in my jaw and I thought my teeth were falling out and my back hurt like hell - I took one dose of paracetamol and the pain went away and didn't come back - strange!.

 

Hehe Bananabrain, I wonder what mine will grow back like too, at the minute it's still brown around the fringe, side and nape of my neck, then I have a band of pure white where most of my hair has rubbed off, steely grey on the crown with the odd steely grey and brown tufts at the back. I look like one of those multi coloured cats but not as vibrantSmiley LOL, so goodness knows whats in store for me; I suppose as long as I don't grow whiskers I'll be okSmiley Very Happy.

 

I took my 15 year old daughter to have her hair dyed for the first time today, she's been finding the whole of this very distressing but won't say anything so thought we'd have a bit of bonding. She has been ignoring any comments regarding my hair loss until I bought some raffle tickets whilst we were there; she read me the list of prizes and I said I think I'd like to win the cut & blow dry, initially she smiled and said yes, then suddenly lifted her head and said aw Mum I've just got what you said and we both laughed. When she had the plastic bag put over her hair with the dye on she said ooh mum I look just like you now (I had my beanie on). When she got home she couldn't wait to show her Dad the photos I'd taken of her and proudly pointed out that she looked just like me in the photo. She seems so much more relaxed now, who'd have thought buying a raffle ticket would finally break the ice for her when months of trying to get her to talk failedSmiley Happy, no doubt she'll be back to her moody teenage self tomorrow so I'm going to enjoy today whilst I can.

 

Well too much talking from me, so I will just wish you all very well and hope any side effects are minimal and you enjoy the rest of the week.

 

Joemic x 

Member

Re: May 2019 Start - picc line covers

Hi guys, hope everyone is having a good bank holiday weekend (or at least not a bad one!)

 

Has anyone listened to the 'You, Me and the Big C' podcast?  There is one called 'About the food' which I found really helpful, especially the myth busting information.  I quite enjoy the podcast anyway.  It's chatty and positive but doesn't shy away from the difficult topics. Although (just as a warning) you may want to avoid it if it will upset you that one of the presenters (Rachael Bland) died recently Smiley Sad

 

Well today I shaved my head 😣  The cold cap obviously wasn't working and I was leaving a trail of hair everywhere I went so I decided to go for it.  It doesn't look too bad I guess.  I'm probably a bit weird but I have a fear that my hair won't grow back grey! I got sick of dyeing it so grew it out a couple of years ago and absolutely loved my silver! (I'm only 44, but started greying in my early 20s).  I will be gutted if it comes back brown.  Oh well, it will be better than it not coming back at all ☺

Member

Re: May 2019 Start - picc line covers

Hi SP

Sorry to hear your 2nd treatment wasn't so straightforward but at least it's one more under your belt and fingers crossed for minimal side effects. 

That would be great if you could share any information you get from your consultation about natural remedies/supplements that might help. I've got my next chemo on the 4th June and see the oncologist on the 5th so I'll add it to my questions list! At the moment I'm just sticking to healthy eating, daily walks and have started to do some beginners yoga.

Take care and hope you have a good weekend

 

Love Rose x

Member

Re: May 2019 Start - picc line covers

Hi Dapple

Thanks for your shared info.

My piccline fitting was really well done too and very swift. It was irritating for about a week

but I barely notice it now.

I ordered some piccline sleeves from Annabanda yesterday as well. I got a blue, black and grey

one. They were £2.40 each. I also ordered a few hats. I have being using the cold cap but had a

lot of hair come out about 16 days after first treatment. It came out each day for 4/5 days following that.

I used the cold cap again on my second treatment last Wednesday (22nd May). I have to use the

small sized cold cap and when I got to the hospital for my treatment at 11am there were no small sized

caps (there was only one). I had to come back at 2pm which was difficult as you get yourself psyched up

for it. It was a really sunny day so my daughter and I had lunch in the sunshine (shaded for me) so it wasn't so

bad.

My hair has really thinned and I ordered the hats so my scalp won't get burnt on the sunny days. I

am going to persist with the cold cap. I was diagnosed with coeliac disease in 2012 and by the time I was

diagnosed I was malnourished so my hair really suffered then. Since the diagnosis and having a gluten free

die,t my hair over the last 7 years has grown to shoulder length and was looking really good. My hair grows slowly

so I suppose that is why I am persisting. I have been told it is the red drug, epirubicin in FEC-T treatment that

causes the hair loss and I have one more of those to go before switching to docetaxel. I will see.

I hope you and everybody else is coping well given our regime.

Mominette Smiley Happy

SP
Member

Re: May 2019 Start - picc line covers

Hi Rose, 

 

I have also been investigating supplements and ways of helping my body naturally, as I’m very into heathy eating etc. I have been told ( for what it’s worth) that although turmeric is a good anti oxidant you would have to consume large quantities for it have this effect? It’s also very important that you don’t take anything which could work against the chemotherapy. You need to check any supplement with your oncologist. 

 

You may be interested to know that this week, I had a private telephone consultation (as he’s based in London) with a cancer specialist who is also a qualified naturopath and who believes that an integrated approach really helps support the body through chemo and beyond. I didn’t just randomly  “find” him!! He was highly recommended by a friend, who is a qualified herbalist. I know this line of investigation is not for everyone, but I want to at least consider every option to help my body cope naturally. All recommendations would, of course, have to be discussed with my oncologist. The consultation took 90 minutes so was very detailed. I await the report and recommendations!! I’ll let you know if it’s useful, if you’re interested?

 

I had a very traumatic 2nd chemo treatment yesterday. My appointment time  was “cocked up” because the scheduler apparently changed it to an earlier time but didn’t inform me! So, when I arrived at my time, I was “lost” in the system and then forgotten.  I waited over 2 hours, getting very stressed and anxious that they wouldn’t treat me at all. In the end they did, but the nurse, who was lovely, couldn’t get the cannula in. Two different veins “blew” and it was really painful. I had heated my hands and wore gloves whilst waiting but the wait was so long, this was a waste of effort. A more senior nurse was called and he calmed me down and got the cannula in first time. It seems that stress and adrenaline can constricted the veins....and I had a lot of that going on!!!

 

However, I’m pleased to report that once the treatment started, it all went smoothly. I was exhausted when I got home and didn’t sleep great...but am ok today!!! Let’s hope it lasts!!! 

 

SP

xx

 

Member

Re: May 2019 Start - picc line covers

Morning all

So pleased to hear your mams good news Kelly. You are going through it doubly worrying about your mam as well as yourself xx

Thank you again for all the hair loss advice it's been really helpful.

Just wondering if anyone was taking any supplements? I know there are lots of ideas out there on the internet but was looking at tumeric as it's meant to be a really good antioxidant. I thought I'd ask at my next hospital appointment before starting though. In the meantime just trying to eat healthy and walk a bit more athough I must admit now that my appetite has improved I have had a few evenings on the sofa with chocolate and a glass of wine! 

Take care everyone 

Love Rose

Member

Re: May 2019 Start - picc line covers

Kelly

 

So pleased for your Mum, it must be a bit of a relief for you all, not that radiotherapy is a walk in the park but it's better than having to have chemo too. How great is your son shaving his head to support you, you must be so proud of him.

Glad to hear work is working for you at times I wish I was at work but at others I'm grateful for only having myself to concentrate on during the day, I'm also secretly enjoying being a stay at home mum for the first time ever, making sure tea is ready for when they all get home - its such a novelty but will soon be over so i'm going to enjoy it whilst I can.

 

Wishing you all a more relaxed bank holiday weekend

 

Joemic x

Member

Re: May 2019 Start - picc line covers

Good evening ladiesSmiley Happy

What a busy thread it has been today. It's great to hear that on the whole most people are feeling well in themselves but not so good for those that aren't.

 

SP - I'm with you in that I get very nervous the day before my chemo is due, I guess it's something that will happen each time as we worry how it will affect us. I saw those fringes and am still toying with the idea, I actually quite liked the ones that have the hair that goes all around a hairband, have you seen them too? do you think you might try them?. I hope your chemo has gone well today and you don't end up with a nasty sore mouth this time.

 

Rose - My hair started falling out around day 15 and the majority by day 18 when I had it cut short, I'm day 29 now and still have a fair amount left. I think when the majority fell out it helped me come to terms with the fact I was going to lose it rather than constantly looking for signs of hair loss prior to it happening. Don't worry you will get through it when the time is right for you, until then you can pick up lots of tips from those of us who are dealing with hair loss at the moment.

 

Mominette - We're entitled to be 'bad' with our diet sometimes - says me who ate 4 bags of crisps todaySmiley Frustrated, never eaten more than 1 before. Seem to have had a 'eat loads' day today particularly savoury stuff. Strange really as my favourite naughty stuff is ice-cream.  Fluid retention is very uncomfortable so glad to hear you are feeling better today.

 

Dapple - Great info on picc line covers, there seems to be a lot of ladies who have them fitted. I think Annabandanna is cheap for a lot of chemo things, I like their sleep caps, postage is reasonable and they do post it out first class which is great as I don't like having to wait for ages for my things to arrive. 

 

Mangomum - Fantastic news you are no longer neutropenic, boy I bet you are relieved. Lets hope it's smooth running from now on.

 

Ilovehunny - Hi and welcome to the forum, sorry to hear you have had such a rough start to your treatment. Like Mangomum says the injections to stimulate your white cells can cause lower lumber and pelvic area pain. I was troubled by the lower lumber pain after my 3rd injection but it responded to regular paracetamol and cleared up the day after my last injection. You might need a change of anti sickness drugs if they are not working for you, many people have had to change theirs until they find one that works for them. Don't let them put you off, if you think you need different meds push for them, chemo is tough enough without putting up with side effects we don't need to.

 

Sewbuddy - I went on one of the hair loss sessions where they showed me how to tie some basic headscarfs - it seemed easy at the time but by the time I'd got home I'd totally forgot how to do itSmiley Frustrated, I have had a few sessions following you tube but not very successful as yet - the positions I end up in would be more suited to the karma sutra rather than the elegant poses those ladies seem to manage whilst they're tying themSmiley LOL - the you tube tutorials are a work in progress. I also considered the look good feel better but it seemed to be more about make up, which I don't use so didn't think it would be relevant to me. If you do decide to go you'll have to let me know if they do anything apart from make - up.

 

Hope you all have a lovely bank holiday weekend.

 

Joemic x 

Member

Re: May 2019 Start - picc line covers

Hey ladies

 

just back from my 2nd EC, feel fine, just a little tired. On wed I braved the shave, it really is quite liberating, my son also shaved his hair, bless. As you know I have continued to work through my treatment, I actually worked over 6 hours a couple of times. For me personally, it keeps me mentally stable. And keeps the mind active. I also play games on my iPad to get the brain working.

 

Had some really good news, mums bc hasn’t spread. And she only need rads once a week for 6 weeks, to start in about 6 weeks time, when she has healed. She has been really down, but I think the news today as, hopefully, upped her spirits. 

 

Welcome to all our new ladies.

 

I brought PICC line covers from annabandana. They are 2.40 each. I went for medium, but needed small. They are quite big. I have also brought from amazon, gotta love prime, bandanas.  You get 6 different colours and designs, they are really lightweight. I used a black one has a base, then out a colourful one over the top. Haven’t braved going out without yet, might try over the weekend. I have decided not to get a wig, for me, I think it will be too hot over summer.

 

Hope you all have a lovely weekend 

lots of love 

Kelly xx

 

Member

Re: May 2019 Start - picc line covers

Happy bank holiday weekend!

 

After spending the first week checking hair loss almost hourly, I have relaxed more now and have my wig and scarves ready, great tips about the You Tube tutorials and the Velcro fringes, as I do not look like the sophisticated models when I try to tie the scarves I look like Mrs Tiggywiggle!

 

I find the periods of waiting quite hard, and I am interested that some of you are managing to work, my GP seemed very concerned about this option, and advised not too. I assumed that this was standard but obviously not, I suppose it depends on the type of work etc, mine is quite a commute which would be a bit of a drain.

 

SP, sending all positive vibes for an event free treatment, you sound very prepared and sending lots of love and hugs to all.

 

love Ruth xxx

 

 

Member

Re: May 2019 Start - picc line covers

Hi, thank you all for your warm welcome xx I hope all goes well for you today SP, I totally understand your anxiety but hope you find some peace and calm - another step forward xxx Bananabrain - I too have not been so bad, I am trying to work full time through this journey but unfortunately had to take 3 days sick this week witha 24hr upset stomach followed by a day of total exhaustion. Feeling back to normal now, thankfully. Xx Joemic, it's difficult when we see our kids struggling - I hope he was able to do all his hard work justice. Your fantastic positive attitude must help him.  On the subject of headcoverings and hair loss - I lost a handful of hair on day 5 but nothing since. I had my hair cut short yesterday and I ordered a selection of different scarves, beanies etc from Wish really cheap but took a while to come through. I was given a Macmillan leaflet too about 'Headstrong' - group or 1-1 sessions where they help with all aspects of hair loss etc. Another thing I am going to book in for is a pampering therapy session with Look good feel better. www.lgfb.co.uk  Again run in my local Macmillan centre.

Mominette, so glad you have 'deflated', that must have been a bit scary.

 

I wish everyone all the best and  hope there are no more bad reactions to spoil the Bank Holiday weekend for youxxx

Member

Re: May 2019 Start - picc line covers

Hi, 

 

Are you having injections to the tummy to stimulate white cell as these can cause pain in the lower back /pelvic area as the bone is being  stimulated. I've had a couple of extra ones now in hospital and I definitely feel achy in my lower back /limbs after.

 

Hopefully it will resolve itself once the treatment is over. 

 

Mangomum xx

Member

Re: May 2019 Start - picc line covers

Mangomum firstly, brilliant news that you've overcome the neutropenia. Such a shame that it was the picc, and hopefully you will be able to have another. I'm sure you already know there are other options too if that won't work for you. Onwards and upwards Love Dapple x
Member

Re: May 2019 Start - picc line covers

Hi all,

I had my first chemo (FEC) on 16th May.  Didn’t have a very good start unfortunately. Had terrible diarrhoea and sickness almost immediately ☹️ despite anti sickness drugs.  I’ve been a bit up and down since then but am definitely feeling more ‘me’ now. The only thing that’s niggling me now is awful lower back pain. I got my period 2 days ago so it could be linked to that but I don’t usually get it.    I had a blood test to test for suspected infection but all was ok but my neutrophils were exceptionally low-told to keep an eye on my temperature.  

 

If if anyone else has had similar side effects I’d love to hear from you. I think they think the diarrhoea was down to nerves or a tummy bug but it definitely wasn’t.  

 

Wishing you you all a lovely weekend.

 

 I 💕 🍯 

Member

Re: May 2019 Start - picc line covers

Hi, 

 

Unfortunately it looks like the picc line is the culprit. It did take quite a few attempts to get it in and there is a waver you sign to accept infections are possible. I don't regret having it and hoping I can still keep it once the infection has resolved. Good news is today I'm no longer neutropenic!! So moving in the right direction.

Mangomum xx

Member

Re: May 2019 Start - picc line covers

Mangomum & Mominette it seems you've both been really unlucky with reactions/infection on your first rounds. Like you said, hopefully drug reactions will be sorted for the next round. I think with infections we can all be as careful as possible...but unless we're prepared to live in isolation (no way!) for months of precious time, then it's also a matter of luck.

I wanted to share some info on picc line covers with everyone (will also add to top tip thread): I had a picc line put in this week (I won't lie, it's annoying so far, but I'll get used to it. For anyone worried about the procedure itself, it was over before I knew it and painless). So I thought I'd be organised and ordered a Care+Wear picc cover - they are antimicrobial so I thought the expense was worth it. My opinion? Waste of money - I ordered the correct size for my arm but found it quite difficult to get on and off. Ordered a few cheap (2 quid!) but pretty patterned covers from Annabandana - and they're so much better! More comfortable and easy on and off. Oh also bought a limbO for the shower - brilliant but tricky first time on my own - think this was more a  confidence issue though. I'm certainly no picc line expert, but happy to answer anything about my experience so far.

Love Dapple x

 

Member

Re: May 2019 Start

Hi, 

 

I had very little side effects from the Fec and was coping OK - even out for a walk the day my temperature spiked. I had a very red face, but I think that was the steroids. Easting hasn't been too bad.  Plane food for the few days after. Back to eating pretty much anything this week without any ill effects /nausea. I have tried to be good and only succumbed to comfort eating on a couple of occasions. Hopefully they will get to the bottom of all our issues so we don't face them next time.

 

Mangomum x

Member

Re: May 2019 Start

Hello again Mangomum

Yes it is hard on you that you hit a hurdle first time round.

Did you manage to eat well during your first round of chemo?

I have been eating lots of fresh  fruits,veggies, brazil nuts, almonds, dried apricots.

I am sure you are already doing all these things. I have also been very bad

on some occasions and eaten cake, ice cream and biscuits!!! One night I ate a

tub and a half of HD salted caramel ice cream! I was ashamed of myself and 

won't be doing that again!!! 

I deflated yesterday of fluid so I am actually feeling a lot better. Kick off with the

injections later today. As far as I am aware they didn't alter any of the doses of

anything. Not sure if they just ran more saline through. I have an appointment with the

oncologist on 06/06 so I will mention it then.

Did you bother with the cold cap?

Have you been discharged from hospital yet?

All My Best Wishes

We will soon be through this.

Mominette x

 

 

Member

Re: May 2019 Start

Thanks for the turban info Bannanabrain

SP
Member

Re: May 2019 Start

Hi ladies

 

Apologies for my typo!!! The fringe idea should have said “top tip”?! I blame chemo brain and predictive text!!

 

I also meant to to say that the doctor has changed my anti sickness meds, so I’m hoping the volcano stomach will not happen this time. I’m also being given Difflam spray which contains anaesthetic, in case the mouth problems recur. So, I’m armed with this and my salt water mouthwashes just in case.....let’s hope I don’t need it?! 

 

SP

xx

Member

Re: May 2019 Start

Morning ladies

Thanks for the info about scarves and hats I've finally had a look on Amazon after avoiding it for ages. My lovely sister has ordered me a few bandanas and hats but I've not even looked at them yet as the looking different bit really worries me! 

I've had my hair cut short which I'm still getting used to and have made an appointment to get a wig in a few weeks so I'm keeping fingers crossed it stays put until then!

Good luck to everyone having treatment today

Love Rose x

SP
Member

Re: May 2019 Start

Welcome to all new ladies from me too! I started the May thread so it’s good to know that we can help each other. Mangomum I’m  so sorry that you were hospitalised. This must have been very scary and upsetting. 

 

I’ve had a good week with daily walks and some normal living!! I’ve clocked up 33 miles this cycle so the doctor was impressed! My chemo log was also praised for its detail?! 

I lost my hair last Monday. It was falling out at an alarming rate so I asked my husband to shave my head as I couldn’t cope with the hair falling everywhere. I have a wig and also a selection of bandanas and hats. My tip fit today is that I bought a fake fringe! It Velcro’s under the scarf so softens the look...less chemo look?

My anxiety levels are high today as it’s my next chemo. It’s strange that as soon as you start to feel normal, you’re slapped down again?!

 

SP

xx

Member

Re: May 2019 Start

Re: headwear, sorry ladies forgot to mention there are loads of videos on you tube on how to tie turbans etc. There are lots of scarfs on amazon and ebay if you want to have a go. Look under hijabs.

 

Member

Re: May 2019 Start

Hi Louise, the turbans are from Amazon.  I'll let you know what they're like when they arrive 😊  I'm having problems posting the link but they are by Ever Fairy and Zac's Alter Ego, both on Amazon.  I just searched for vintage turbans.

 

Member

Re: May 2019 Start

Hi Bannanabrain

 

I like the sound of your vintage turbans - please can you let me know where you got them from.  Thanks

 

Louise

Member

Re: May 2019 Start

Hi Sewbuddy and Rose - welcome to the forum none of us really wanted to join but hey here we all are and will be plodding along with each other, keeping us all going as best we can. I wouldn't worry about stalking for a while before joining, I bet we all did before we took the plunge to say hi, I know I didSmiley Happy. At least you can both start counting down - you're both one down so one less to goSmiley Happy, it seems a long slog but we will all get there, I'm 2 down now but thinking positive this time next month I'll be 4 down and only 2 left whoohoo, just got to get there firstSmiley Very Happy

 

Mangomum - You really are going through it aren't you, it's heartbreaking losing a pet, sending you lots of hugs to help get you through. I hope your hospital stay is sorting you out and you'll be home soon.

 

Mominette - What have your chemo team said to you about your reaction? It doesn't seem at all right to me, make sure you follow all the advice they give you - you can't be too careful. With any luck the rest of your regime will be plain sailing - have my fingers crossed for you.

 

Bananabrain - Like you I started to lose my hair on day 15/16 (Sat) by the following Tues what I thought was the majority of it fell out so I had it cut to a grade 3, strangely although some still seems to be falling out every day I've still got a head of hair, albeit thin in places but no bald patches - I got my son to check it because it looked as though a thick band across the top was bald - he laughed and said my hair had actually turned white!!! I don't know what's worse grey or snowy whiteSmiley LOL. I've got a variety of headwear, wig, headscarf, beanie, turbans and bucket sunhats in funky SPF50 colours. I change what I use daily and just like  to wear jazzy colours - it's my way of showing the BC where it can goSmiley Very Happy. Must say I'm not very good at tying the headscarfs yet but it's fun trying and I've just got myself a pink wig to wear when I go out, I'm determined I won't let the BC rule my life. Anyway after all that rambling what I meant to say was maybe give the cold cap another go if you can bear it, you might still lose hair but maybe not all of it or you can decide not to and embrace your new look, it's still a tough decision for you. I chose not to cold cap which is why I'm a bit confused as to why I still have as much hair - I don't know maybe it will have all fallen out by my next cycle. It's all very strange this chemo thing and individual responses to it isn't itSmiley Frustrated. Good luck with whatever you decide.

 

Ruth - I don't think he did as bad as he thought he would but his heart is on uni and it's hard on him especially since he didn't get the grades last year. He finds it harder because a lot of his mates who got into uni aren't really bothered about being there and tell him so; it upsets him because he dearly wants to be there. We'll get him through it though - just wish I could take his darned nerves off himSmiley Sad. Hope you are not finding your treatment too trying and are managing well

 

Joemic x   May Ladies - We've got thisSmiley Happy

SP
Member

Re: May 2019 Start

Hi all, 

 

Welcome to all our new members from me too! I am so sorry to hear that you have been hospitalised, Mangomum. That must have been very scary and upsetting. I hope that your white cells soon bounce back. 

 

I’ve had a good last week of cycle 1. However, my hair has also fallen out at an ever increasing rate. Yesterday, my husband shaved my head as I couldn’t cope with it any longer....hair falling everywhere! I’ve worn my wig and also have turbans and bandanas.....so I  can choose...... the soft bamboo hats are a lovely break from the wig, which can get hot after a while. One tip to share is that I’ve also bought a Velcro fringe!!! You can velcro it to the inside of the hat/ bandana etc and it takes away the bareness and “chemo look” It looks more natural to have some hair on my face....

 

Today I have had blood tests and my clinic appointment. I took my chemo log and was praised for its detail!!! I’ve walked 33 miles over the last 20 days....so not bad!! The oncologist has changed my anti sickness meds so I’m hoping that I’ll avoid my stomach erupting like a volcano this time. I’m also going to have Difflam mouth spray, in case the mucositis flares up again, as it apparently has anaesthetic in it! So I’ll be ready this time with my salt water mouthwashes and Difflam! 

 

So, my 2nd chemo is tomorrow and I’m feeling anxious again. It’s strange how life can almost feel normal, then just as it does, you know that you will be slapped down again.....? 

But, after tomorrow, I’m one step closer to finishing this phase...hurray! 

 

SP

x

Member

Re: May 2019 Start

Hello All

This is my first post. I am also a May 2019 chemotherapy starter. I had my first cycle on the 14th May (1 down 7 to go! )Just reading through all the previous posts have already helped. Thank you for the link to the life after Lola website I've tried to avoid reading anything other that what the hospital gave me until now but found this to be a big help especially around feelings and coping mechanisms. I look forward to following everyone's progress and will share anything useful I come across 

Thanks

Rose x