August 2018 Chemo starters

[Cat67]

Hi Lovely Ladies,

Sue – thank you for your best wishes for my second chemo session (yesterday). Already feeling nauseas despite change to anti sickness regime, last time the nausea started to kick in in a big way on Sunday (tomorrow) so hoping that doesn’t happen again, time will tell…whatever happens I know it’s only temporary!

PrettiestEyes – welcome to the gang! And no cock ups :-). We are all so different when it comes to SEs so make the most of feeling well! I am certainly appreciating the good days more! Agree with your comment about looking at the world through a different lense and appreciating the little things.

Multitasker – I was also advised to avoid probiotics. Aveeno sounds great, I’m also using bio-oil on my scars.

LalLaLand - I was prescribed Omeprazol for indigestion related SEs. The first sign of hair loss for me was a tingling sensation, next day head started to feel sore and strands of hair falling out every time I put my fingers through my hair (I had shoulder length hair) so took decision at that point to shave it of and that take away the soreness for me, so now I have a No.2 with a few bald patches  - my other half has a No.1 cut too so I joke that I never thought I would see the day that he had more hair than me!!:-).  Got lots of scarves but also getting on well with my wig when I go out.

For everyone feeling below par (physically and/or emotionally), which is probably all of us to some degree (!) stay strong, we can do this! Sending you all virtual hugs.

Look after yourselves…

Cat x

[LALALAND]

Due to have my 2nd chemo on tuesday. my hair hurt's does this make sense any tip's welcolm. also acid reflux at night sounding like a right whinger. Have a good weekend ladies enjoy the nice weather. love and hugs xx

[Multitasker]

Thanks for the heads up about pro-biotics, Lalaland. I will stop the kefir and ask my doctor when I see him in a couple of weeks. Definitely dont want to do the wrong thing. Some of the SEs have been so horrible I grasp any little twig I think might make me feel better and I should remember I do have not medical background.

Hi there Prettiesteyes. Some people dont get many SEs, my brother and SIL were fine through chemo, only getting tired towards the very end. It seems random how it affects different people. They were polar opposites in terms of fitness, health, diet etc. Another one of lifes mysteries! Fingers crossed your hair holds on fo the wedding

Wishing you all a great weekend. 

[Jude1962]

Hi Prettiesteyes

Well done on the no ses & I hope that continues for you
I’m very impressed that you have manage to continue to work most days - I’ve struggled this second cycle to even do odd bits from home

Hope it all continues well for you & hope the hair loss isn’t too traumatic

Jude x

[Jude1962]

Hi Cat

Hope today went ok & the ses are manageable - good luck

Jude x

[SallyG63]

Hi Prettiest eyes.

I'm from the June thread. I'd say it's not normal to have no side effects bug it happens. I've had nothing and I've done number 9 today. Like you I've worked everyday except Fridays which are chemo days. Make the most of it!

Sally.

[PrettiestEyes]

Hello all, I'm new to this forum (and in fact haven't used a forum in years so I'll probably cock things up - sorry),

I was diagnosed with invasive ductal cancer in June, had a lumpectomy just over six weeks ago (two small grade 2, stage 2), plus removal of lymph nodes (cancer in three out of 15) and I had the first of 6 chemo sessions ten days ago.

I'm sorry to read that so many are suffering side effects and my question is, is it normal not to have any negative side effects after the first chemo? I was fully expecting to feel sick, tired and a whole load of other things but I haven't (and of course I feel so grateful to have got one under my belt and to feel so well. I know things will get worse). I know my hair will go (currently I'm hoping it might last one more week, as I have a wedding to go to, and then I plan to chop it off and I have lots of hats and scarves at the ready).

I was able to go out for my first post-op run on Wednesday and I've been working as normal (I have a sedentary job) . If anything, I am feeling a bit hyper happy - looking around the world with fresh eyes and thinking how beautiful the sunshine is, how lucky I am to have such supportive friends and family etc. Again, is this normal???

Looking forward to getting to know some of you along the journey.

xxx

[LALALAND]

Hi just reading about kefir my oncologist told me to stop taking pro biotics as  chemo kill's off good bacteria and taking pro bioctics make's the chemo work twice as hard. don't know if this is so just do as i am told. 2nd chemo next tuesday only 4 left. Anyway have a good weekend ladies love and hugs xx

[Multitasker]

Morning ladies

One week on from 2nd EC. I think I feel better and more positive than same time last round. Like Sunflower really looking forward to a more normal week ahead and maybe knowing this is on the horizon helps keep me more positive.

I also find Aveeno really good for dry skin. I also use Palmer cocoa body oil a couple of times a week. It smells a bit  of chocolate, so cant face using it the days immediatley after chemo but love it other weeks. Its oil, obviously, so takes a while to sink in but as it has Vitamin E in it, I like to think it helps my boob scars too. 

My tummy has been very unpredictable. Crampy sometimes, tho could be period pain, loose sometimes, constipated others. I’ve started drinking Kefir whichseems to help me. There was a telly program a few weeks back talking about gut health. It seemed to make sense to me. I think the chemo kills alot of the healthy gut bacteria and I like to think this helps restore some balance ‘down there’. I was surprised how much I liked the taste and the feeling of it in my stomach. 

Lots of hugs to everyone and wishing all a positive day

[SB1610]

Good luck Cat

I actually found the se a little easier the 2nd round so don't give up hope 😁

Sue x

[Cat67]

Hi Lovely Ladies,

Thanks for the top tips for dry skin……….and welcome to LaLa and Val!

I’m having my 2nd of 3 cycles of FEC today so if last time is anything to go by I will brace myself for a crappy week……but safe in the knowledge that it is only temporary and I have better days to look forward to!

Look after yourselves…

Cat x

[ktk]

At LGFB they recommended Aveeno too. I have been using E45 shower emulsion as well as E45 lotion. Kx

[SB1610]

Let me know it helps Sunflower

[Sunflower18]

Thanks Sue.

[SB1610]

Hi Sunflower

I was recommended E45 lotion for the dry skin. I started slapping it on a few weeks before I started chemo and every day since and so far skin had stayed nice and soft and not dry. Again on recommendation I've also been using a different shower gel - Sanex 0% kids - this has no soap, colourants or parabens (whatever they are) so this may also be helping.

Worth a try maybe

Sue x

[Sunflower18]

Hi all,

just thought i would check in to in to see how everyone is doing.

Im now on day 10, round 2 of FEC (3 x FEC and 3x T).  I have to say that whilst the sickness was way better this time around I am afraid i suffered from mega bouts of diarrhoea followed by the last two days of constipation! What is going on with my stomach, I sometimes dread to think what these chemo drugs are actually doing to my body. 

Hair on head is almost non existent and skin is getting very dry, apart from that plodding on with it all. Some days better than others.

Looking forward to a week and a bit of feeling reasonable before going through it all again.

I can’t believe though that at my next session I will be half way through....Yeah!

Well half way through chemo - still have radiotherapy, hormone therapy and bone strengthening injections to get through!

Best wishes to you all xx

. 

[Jude1962]

Hi Sue

I agree the more fluid we can take in the better!

With regard to the steroids I don’t seem to get the high or mega energy that other ladies get but I definitely get a reaction when I stop taking them. I might ask if I can almost wean myself off them rather than just stop to see if that helps next time

Hi Val & Lala - welcome to the club that no-one wants to be in! It’s good to hear from you but sorry to hear of your se’s & infection - hope you start to feel better soon
It’s actually quite interesting to realise that whilst we may have similar treatment - I’m having 3 x EC & 3 x T + starting herceptin with the T, due to hormone related other diagnosis & age related, additional treatments can be different.

Sleep well all

Jude x

[ktk]

Hi LaLa. Welcome to the club!! Bear with it. You did the right thing contacting the hospital. Let the experts look after you. Decide what you want to do with your hair. You might find it more comfortable to bite the bullet and get it shaved and then you can move onto your wig or scarves or whatever you choose. You should start to feel better now so enjoy the next week until cycle two. Hopefully it won’t be as bad!! Lots of love Kxx

[LALALAND]

Hi there, i started chemo 2 week's ago, i did not realise that you could go through so many emotion's in such a short space of time. The chemo it self was not as bad as i thought it woul be. Day 2 well i am sure that you have all seen the advert you know the ooop's moment well mine was more like the niagara fall's moment' i just lost control of my bladder' up all night going to the loo. No other sign's of anything but i phoned the unit anyway, blood's ect was given intravenous a/b and a course to bring home with me turn's out it was a water infection. Day 5 thrush. Mood swing's up's down's i just don't know tear's for no reason this is not like me at all hence the user name LALALAND because that's where i think i am. Now day15 my hair has started to fall out ah well i'm sorry to sound such a grump but just felt like a moan.  ONWARD'S AND UPWARD'S LOVE AND HUG'S TO ALL

[ValGJ]

Hi all,
I’m a new poster, just had my second out of three EC to be followed by three of docetexal. I had to laugh when I saw talk of fasting, I’m so hungry I fancy Curry, Chinese, chocolates anything all the time! I’m going to be the only chemo patient to put on weight. I do feel eating keeps the nausea down in my case. Like others I’m a bit groggy the first couple of days and then I’m buzzing from the steroids and waiting to do the hoovering at 7am so I don’t wake the family. Very tearful too which is not like me. I had a very bad reaction to the injections on day 6, so painful in pelvis and lower back, it felt like birth contractions, luckily was eased by painkillers. Not looking forward to next lot though.
I too am having problems about being allowed to go to work, I work p/t for a charity and there is low risk work I could do but as I’m signed off they won’t let me in. I’m going to ask my GP if she can write a sick not that says I can work if I feel up to it.
It’s been great hearing from you all, I think it really helps to know others are coping in their own way with this nasty disease. Best of luck to you all.

[SB1610]

Hello Cat and Jude

I think I'm the same as you in that I don't know if the fluid intake is the thing thats helping or not but I'm not to keen on experimenting to find out so I'm gonna keep on mainlining the water just in case.

Jude - they don't have me taking steroids (other than the ones on chemo day) so sorry but I can't comment on the SE you are having coming off them. I can however really sympathise with the feeling sorry for myself comment - I've had a few low moments myself over the last few days -and I think this is just part of this **bleep** awful rollercoaster we're on. I've decided not to feel bad or guilty about those moments but I'm just going with it at the moment knowing that in a day or 2 I will have hopefully have turned a corner and I'll have some good times before the ding ding ding of round 3. Well that's the plan anyhow........

Nite nite all - hope you all get a good sleep

Sue xx

[Jude1962]

Hi Sue

For my second cycle of chemo I did really up my fluid intake particularly once the sickness & nausea had abated. Not sure whether it has helped or not?

My biggest issue this cycle was once I stopped taking the steroids I had around 4 days where I felt terribly shaky & almost out of it. Today (day 9) is the first day that I have felt relatively normal

Have to admit to feeling a bit sorry for myself a couple of time as well 🙁

Hope everyone is coping ok

Jude x

[Cat67]

Hi Lovely Ladies,

Thanks Sue and Ktk. I'm not sure I could fast but I am trying my best to eat relatively healthily and drink lots of fluids....whilst having some treats of course! When I was suffering with nausea during week 1 everyone was encouraging me to increase my fluid intake even further......it didn't seem to help at the time but may be it would've been worse if I didn't drink so much! 

Thanks Rosie14 for your words of inspiration; lovely that you are all still in touch 4 years later and a great reminder to us all that the light is shining bright at the end of the tunnel

Wishing everyone a great next few days...

Cat x

[SB1610]

Hello all

Not sure how helpful this will be re the decision to fast or not to fast but here goes.....

I'd read about this too on various blogs but nothing that had medical or scientific backing (but I'm not saying that there is nothing out there). I asked my onc about it pre my 1st chemo and there were a couple of docs in the room at the time and they were all quite dismissive of it and one even ventured the opinion it could do harm rather than good. As such I didn't try it.

What I have been doing however is trying to stay really well hydrated. I've been drinking plenty of water - usually I manage somewhere in the region of 4 - 6 pints of water per days plus other drinks - milk / juice / squash and hot drinks - however main intake is definitely water. I'm just on day 6 of round two and from reading comments from others on here I seem to have got away quite lightly so far with the SE. I've typically had a bit of nausea on day 1 (on both occasions an early night sorted it) and then a bit of fatigue on the next few subsequent days but this has just consisted of a bit of an afternoon nap but no more than an hour. It probably helps that I'm not working and that there is only myself and oh in the house but I do wonder if my water intake is helping to keep the SE at bay and to what extent. I must admit now the weather has turned cooler it's not as easy to drink so much water but Im going to try and keep it up just incase it is the thing that's helping.

I'd be interested in what others think - I'm consistently told that all regimes have slightly different se and different people react differently
on the same regime and that my own experience on round 1 won't necessarily repeat on subsequent rounds.

Good luck all

Sue xx

[ktk]

Hi Cat. There is a good thread on fasting with all the info you need. However, only do it if you feel you can as this is hard enough anyway without suffering unduly! I was able to reduce intake for the first couple of cycles but found I couldn’t keep it up. Re the Picc covers, they do come in different sizes, and they stretch! Just run a line of stitching down the side. Should be fine! Kx

[Cat67]

Hi Lovely Ladies,

I hope you all maaged to enjoy the Bank Holiday weekend!

I was lucky as feeling good a couple of weeks after my first chemo (FEC). I  had a meal out with family on Saturday and even had a couple of G&Ts!! And I had a lovely day out yesterday walking in the countryside and a pub lunch. All of this with my new wig on; it gave me a bit of a headache but maybe I just need to get used to it?

I was interested in the comments about reducing calories/fasting day before chemo - can anyone tell me more about that?

Thanks foe the PICC line cover advice - great ideas. I ordered a PICC line cover but have found that it slips down my arm. 

I will be having my secod chemo (FEC) on Friday so for those of you who have had second session already it's helpful to read how you are all getting on; in the meantime I will make the most of feeling close to normal for a few more days!

For everyone having chemo this week, good luck! And for everyone else good luck with the SEs!

Stay strong...

Cat x

[Multitasker]

Hi Millsy

I think its very common to feel emotionally low around halfway through chemo cycle. You’ve just managed to battle through the physical effects and then when you get your breath back your mind goes into overdrive. Be gentle with yourself. You have had soooo much to process mentally and to go through physically.

I hope you can work something out with work, be tenatious. You have started treatment now so you can explain how it effects you and what you can do. They probably want to err on the side of caution.

If you feel you are up to the festival go for it. Its good to enjoy normal things. My hubby lives in Zurich and my oncologist gave his ok to visit him, days 16&17. I was worried and he emphasised taking temps, emergency antibiotics and get to a hospital etc. Probably worried too much, but that is natural. It was fine and it was lovely to do and most importantly took my mind off the Big C.

[Millsy]

Morning ladies I’m on day 10 of first chemo and dare I say have returned to feeling somewhat normal physically sadly not mentally have had a couple of really low days but I know that’s to be expected.  I had cold cap and hair still intact currently, skin on my fingers started to peel yesterday so creaming a lot more.  My work have said no to working from home sadly and I need to see occupational health, I feel they would just prefer me to go off sick, I have spoken to an advice lime and they were helpful and sent me a good letter template to request reasonable changes to my work, I do a clinical job working with under 5’s which is is not good because of my immunity so will request working in the office doing some admin, going by the first chemo I feel I definitely wouldn’t be able to work first week but Weeks 2&3 feel like I could do some work maybe on reduced hours to try and get some normality in my life, I feel I will go stir crazy being at home🤪 I am hoping to go to a festival next weekend if I feel ok still? Bit anxious but feel it would cheer me up and in England so can easily get to hospital if needed, I have put PICC line off as they wanted to put in ready for 2nd chemo, I know it’s a gamble and really hope my veins hold out but just not ready to have something in my arm restricting me for baths etc. I will probably have it in ready for round 3 of 8.  I don’t write on here that often but regularly read the threads and find them so comforting, wishing you all a good bank holiday weekend and hope the side effects are kind to you 🙏🏻

[rosie14]

Good morning ladies!

i have just dropped in from the April 14 thread! I have come to offer you the assurance that this treatment will come to an end and although it takes several months for hair to grow back and to begin sleeping for longer it will happen!

I used to get up anytime between 2.30am and 4 am ! One morning at 5 am I was cooking meat and another I was washing the patio down at 6.00am! 🙀It’s the steroids that make you wakeful!

The treatment is harsh but there are thousands of us still alive because we went through it. Continue to support each other each step of the way and together you will make the journey! 

5 of our ladies still post regularly and we have just had our 4th annual meet up!😃

Stay strong ladies for those that love you! 🌸

[Jude1962]

Hi Georgie

2nd lot of chemo is gruelling isn’t it, it certainly doesn’t get any easier
I don’t have a picc line but it sounds like you are very enterprising regarding a cover!
My oncologist has been brilliant so feel for you regarding yours, it’s not that you’d wish this on anyone but a bit of empathy doesn’t go amiss

Take care

Jude x

[Multitasker]

Hi Georgie

I’ve also resorted to DIY. I made some tentative attempts at something to cover and protect my portacath. Because 

A) It sticks out a lot from my chest and hurts if knocked 

B) people grimmace and comment when they see it, which is understandable but sometimes makes me a bit fed up - 

Will have a better go when I’m feeling a bit brighter. The skull doesnt look half scary enough! They are padded and I stick them on with boob tape 😀

Good luck with changing oncologist, you just want to feel people are on your side. Mine wasnt at all helpful when I explained how ill I felt, thankfully I saw the oncology nurse when getting my bloods tested and immediately she was suggesting chaning the meds. Even walked down to see the pharmasist to see what would be better to swop. I was happy to try ANYTHING

[ktk]

Hi Georgie. Sorry your oncologist continues to be so obstructive. I bought Picc covers from Etsy and there are cheaper ones on eBay too. If you have any old leggings they would make good covers too.

My Docetaxol regime is a bit different from Sally’s. I have to take steroids for three days and also continue the Filgrastim injections. Far fewer anti sickness though, and I haven’t felt sick. Not as tired straight after either. Three days in I am getting a bit of bone ache but I’m on top of that with codeine. Also I have slept much better now the steroids have finished. Hope the info is useful. Kx

[Georgie Gee]

Hi all, 

I'm just coming up for air after day 2 after 2nd chemo proved more exhausting than last time.  Nausea and in bed by 6pm.  Did a bit of browsing online for how to make picc line covers, but nothing that really helped.  

In a moment of inspiration, I suddenly remembered that I had some long leg warmer style socks!  

So I cut the toe off of one of them and slid it up my arm😬... I even have the heel of the sock in place on my elbow 😂....

I thought that might be helpful; I do think the picc line covers online are expensive, so I am still looking at actual leg warmers online now (remember, that would give you 2 picc line covers as they come in pairs.....).  Found some for a fiver on amazon prime, so they are coming tomorrow, as are my daughter and fiance..... my daughter begged me to get something, as looking at the line when my flimsy hospital bandage comes off regularly, she also feels sick! 

Am now finally downstairs and managed a light breakfast after anti sickness dose. 

I did request emend from my oncologist, but she refused it, and advised a double dose of what I had last round, as early morning treatment. 

I have asked to change oncologist.  Too many doubts about being on a conveyor belt, and not allowed to make any suggestions or ask questions and now not allowing emend....  as I have said before, I would love to swap places sometimes with an oncologist such as mine (now previous I hope) for even half a day, and I think some of the arrogance about their status might tone down a notch or 500!!.... am I being over- reactive?

thanks for reading..... and for the picc ladies, try the leg warmer sock idea if you have any..... 😉😘

Georgie xxx

[SallyG63]

Hi, the being flushed is probably due to the steroids they give you. They can have that effect as well as raising blood sugars levels significantly (as I'm also diabetic I managed to persuade my oncologist to halve mine). Again that changes on Taxol. I now don't have steroid tablets, just one intravenous steroid infusion on chemo day which affects my sugars much less and is much better.

[Multitasker]

Thanks Sally, thats reassuring. I dont want to rush off and get my knickers in a twist!

This time I have the same anti sickness and you and they seem to be working fine today so far. I am very flushed but I have seen from other posts that is quite common.

Glad to hear cold capping is working for you. I wanted to give it a try as its at least one thing I can do to help the treatment. I feel that so much is out of my hands and you have to go with the medical experts.

There seem to be alot of us getting used to wigs this week. I suppose one silver lining to rainy BH is less sweaty wig heads. 😂

[SallyG63]

Hi Multitasker from the June chemo thread.

I think the dosages are related to weight which is why they weight you at clinic, it definitely is for some things but someone may correct me on this. I had 4x Ec (2 weekly) and am now partway through my 12 weekly taxol (just done number4).

Ah, just checked in my book and my EC dosages were the same as yours. I found it fine side effect wise (had none) though I did have a dvt in my chemo arm after the 4th. The filgristim injections did produce aching back and hips for half a day on the middle weekend but apart from the first time that wasn't too bad. My oncologist gave me cocodamol for that and I only needed to take one dose to sleep. Now I've moved on to Taxol, no filgristim so that not happening now.

What anti sickness are you on? I had Emend for 3 days on EC and Ondansetron on days 1 and 2 which worked just fine. I was also given domperidone to take as and when but I still have half of them left from cycle one cos I stopped taking them when I realised I didn't need them.

Sorry the cold capping hasn't worked for you. I still have about 80% of my hair left and it's growing now on Taxol. I have a thin patch right on top where a good old comb over can cover it and that's definitely seeing regrowth there.

As usual, after a really hot summer were due a grotty August bank holiday I think. Bloody typical !

[Multitasker]

Hi Ladies

Best wishes to everyone who had. Chemo this week. I had my second EC yesterday. 

I was really nervous after the reaction that I had last time. The Chemo nurse suggested trying  a different anti sickness drug as the first one might be the cuprit for the really bad stomach cramps I had. I also tried to reduce my calorie intack the day before (no way I could fast!!) and used a new focused breathing technique. It all helped a bit, still pretty brutal but an improvement.

I was wondering what your EC dosages are? Im have 4 EC followed by 4T. I was reading up on side effects and noticed my dosage looked high. I may be worrying about nothing. I have IDC grade 2, sentinal node affected but others clear. Lumpectomy with level 1&2 node clearance.

i am getting 180mg of Eprirubicin, followed by 1200mg Cyclophosphamide every three weeks.

Sadly despite using the cold cap my hair has nearly all fallen out. I was feeling quite chuffed in the early weeks and then Literally day 19 is started to shed big time. Its nearly all out on, the postive side  I guess it will make treatment time a bit shorter.

Really wishing you all a good bank holiday weekend - aghhhh cant believe august is nearly over 😬

[JacqB]

Hi Sue
It Took about twelve hours, I probably could have squeezed out more moisture but I didn’t want to muck around with it too much first time so I pretty much left it to drip dry.
I think they are pretty resilient 😊
Jacq x

[SB1610]

Hello Jacq

Good to hear it survived - I bought some wig conditioner in the shop - it came as a package deal with a fake head for the wig and some wig shampoo. To be fair he did tell me it was like fabric conditioner but I'm not sure it'll be as nicely scented as what you've used!!

How long did your wig take to dry?

Sue x

[JacqB]

Hi Sue
My wig survived the wash 😊 took a tip from YouTube and rinsed with a little fabric conditioner. I will now be scented with jasmine and orchid blossom!
Jacq x

[Jude1962]

Hi Amanda

My sleeping patterns are rubbish!
I normally wake up at 4am & read until 6ish 😂😂
Then doze for a couple of hours

I’ve no idea how I’m going to sleep normally when this is all over!!

Take care

Jude x

[AMB67]

Hi Jude

Hope you are ok and start picking up soon.

I am the same with the 2nd round, feel like have been hit by a brick wall, taking all my energy just to get dressed today.

Hoping for sleep tonight but fully expecting the 2-3am wake up.

good night all !!

we can do this .......

Amanda xx

[Subee7]

Hi everyone, somehow I seem to have started a new thread! Not really sure what I am doing! Will try and delete it.
Thanks for all your encouragement, definitely one cycle at a time. I braved the shave last night as my hair was coming out in handfuls and my head was so painful. Once shaved the pain went. Now rocking the scarves.
Have a good weekend all. X

[Jude1962]

Hi Ladies

I do agree that the hair loss is one of the biggest things & very hard to come to terms with along with all the nasty side effects
I’m not feeling too bad today other than being really tired & flat - I don’t know if it’s because I finished the steroids yesterday but feel very deflated
Made myself go for a walk even though it was raining on & off as well as being cool but it blew away some cobwebs

Hope you are all coping ok & sleep well

Jude x

[Cat67]

Hi all you Lovely Ladies,

Just catching up after a few days...

Kip - I hope you are feeling better and are home very soon.

KtK - Sounds like I am on a similar path to you, 3 cycles of FEC and then 9 weeks of T (I will also be having Herceptin). Pleased to hear you are getting on so well!

AMB67 - Loving the Sigourney Weaver reference, made me smile....especially as I shaved my hair this afternoon! 

SB1610 - Totally understand where you're at with the hair loss thing. I took a decision to shave mine today after the very first signs of it coming out last night. Not easy but I felt better afterwards. We are all different and should do what feels right at the time. I have the same fears about wig blowing off but will test drive the new wig tomorrow, first stop will be the hair salon to get the fringe chopped.

JacB - I washed my wig yesterday (decided to wash it before wearing it for the first time), I was a bit nervous but it looks exactly the same as it did before I washed it - result! And it's a helluva lot quicker than doing my own hair…....every cloud :-)

Georgie - Good news about the PICC line and I have my fingers crossed that you get some positive news about the parking....sooo frustrating.

I hope you all have a good few days and find time to relax and enjoy the BH weekend

Stay strong….

Cat x

[SB1610]

Hello

Kip and Jacq - thanks for your support - I do know I'll come around to it and that I probably just need a bit more time - on the positive - sleep cap off and no bald spots today 🙌

I know this is just passing thing and I'll either get along with this wig or I'll just get another one!

Jacq - Glad to hear your wig feels secure as that is a concern that I have that it'll slip or get blown out of place or that I'll brush up against something and it'll get snagged. Let me know how the washing of it turns out. Also another worry of mine is that it'll come out looking s complete synthetic mess. I really do need to get out more and just stop fretting about stuff - my OH often says I'd worry about not having anything to worry about . Good luck with the wash!

Sue xx

[JacqB]

Hi Sue
I got so upset when I tried my wig on with hair as, like yours, it just looked and felt wrong. Once I’d shaved it went on easily, felt secure and, so everyone tells me, looks fab. I’m about to wash it for the first time so fingers crossed it comes out looking ok!
Jacq x

[Kip]

Hi Sb , the hair thing is a big issue but youll cope, the thought is harder than the deed. I am on cycke 4 of 6 nd mh hair is coming back already, fluffy stubble so far but it's hair! Be strong nd take a day at a time

[SB1610]

Morning all

Good to hear that most of us are coping with what is being thrown our way.

It's my 2nd day after round 2 of EC. Started to feel dodgy around 6:30 yesterday, tried to ignore it for a while but eventually gave up just after 8 and went to bed. Fell asleep more or less straight away and woke up what felt to be hours later feeling I'd had a fab sleep to find it was only 10:30!! Spent the next 4 hours tossing and turning (thanks steroids) and playing the word association game on here and being entertained by the Daily Mail and rants of various people (I can waste hours reading the comments on some articles - if ever you are having a slow day take a look 😀) but then i did manage to get another 4 hours sleep.

My OH brought me breakfast in bed before he went off to work and I'm just willing myself into the shower but dreading being vertical incase the sickness hits.

Like others my hair is coming out so I'm wearing hats and scarves. Ive had a wig for about 5 weeks now - loved it in the shop, tried it on Monday for the first time - couldn't get it to sit right and had a complete meltdown (Monday was a bad day for me as I was really low due to the hairloss which has been the most difficult thing for me to accept - the other SEs I've had have been fairly short lived up to now but this is a longer-term thing to deal with and even though my hairdresser says my hair grows quick I reckon it will be 9-12months post treatment before it's back to how it was).

Im planning to go back to the wig shop to see if they can help me position it properly and maybe do something with the fringe which is the bit I'm really unhappy about - I did speak to the chemo nurse y'day and she said it would probably sit better on a bald head - at the mo I've just got a general thining of hair - no bald spots yet but who knows that could change once the sleep cap comes off and I've showered - but I can't bring myself to shave - I don't know if I'm clinging to a false hope that I won't lose if all so that when it does start to grow back I've got a head (no pun intended) start and whilst I understand at lot of women feel as though they are taking control by proactively shaving - I just feel as though I'd be admitting defeat and I'd be left wondering what if. I'm no longer traumatised by my hair coming away so I think whilst ever thats the case I'll leave as is. Apologies for the ramble but I do find it cathartic.

So I hope you all have a good day and that you manage to enjoy the bank holiday weekend with family and friends.

Good luck to those of you that are on chemo day today and for those of you struggling to get a parking concession agreed - keep asking and nagging until someone comes up trumps for you.

Happy days everyone

Sue xx

[AMB67]

Hi ladies

Gosh..... not been on for a couple of days so just catching up with you all!

There are some ups and downs......bless you all.

Sorry to hear you are in hospital Kip, hope you get sorted and home very soon!

Georgie good to hear you got your pic line in eventually and hopefully it will save a lot of hassle for you now. Good luck and hugs going your way for the next round.

On the parking issue I only found out this week from another patient that if we take our ticket from the machine into the department we are attending be it chemo, outpatients or a&e the reception stamp it and we don't pay.

This is York trust so it obviously varies depending where you live. 

Jude, like you am just coming up for breath after having 2nd FEC 2 days ago. It seemed to hit me like a brick wall 5pm that afternoon. More so than last time.They changed my sickness meds which they warned can cause drowsiness...that's all I need more spaced out than normal but they seem to be working. They also gave me lansoprazole for the gastric issues. Haven't had the hangover type headache this time but was awake 2am on the dot last night.

We basically just have to ride through this don't we?

Ktk it is encouraging to read you were fit to go out the day after your first T round. Let us know how you get on as I for one am dreading them.

Also lost most of hair now which started going on day 15 but have to say got used to it quite quickly. Was out and about with headscarves on last weekend and did not get too many funny looks. Got my wig too but there is so much more hair on it than used to so may only wear it for special occasions!

The chemo hairdresser told me no need to wear anything under the one I have and it doesn't feel as though it would blow off.

To cheer you all up....My OH said he thought he had woken up next to Sigourni Weaver in Alien 3 the other morning as my sleep cap had come off. 

Hope you all have as good a day as possible.

love Amanda x