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November Newbies 2013

digby4
Member

Re: November Newbie's 2013

Hi my name is Lynn had my 1st chemotherapy last wed (27/11/13) been reading the forums and am glad to know I am not on my own. I have had a couple of bad days found out I had a throat infection so hopefully the antibiotics will kick in soon, I am on fb and have applied to join the November newbie group, good to know there  are others out there who know how I feel.

alabamasam
Member

Re: November Newbies 2013

Wrapped all my Xmas presents and now I'm worn out. Lying on the sofa watching TV xxxx
Camper1970
Member

Re: November Newbies 2013

Well done Sam , I think I will get one cheaper can't justify £170, I know I will be wearing it for some time keep you posted , how you feeling today x
alabamasam
Member

Re: November Newbies 2013

Well I just bought a wig from eBay, it's long and cost £20 ! It's black and burgundy so a bit out there xxx
Back to my Xmas wrapping xxxx
Camper1970
Member

Re: November Newbies 2013

Ha ha that's funny Swansea girl, I did have a look but not brave a enough I do need to order the long one but was told it was £170, which looking in the Internet is expensive , don't really want to get to the stage that I have £££££ of wigs oh well it's a change from shoes and the usual crap I but lol xx

Have a good day 😃
SwanseaGirl
Member

Re: November Newbies 2013

hi Camper 1970 - i feel as if I'm getting off lightly too - even if this is the only one that is "good" , then it is a plus.

I ordered a wig from ebay yeaterday - cant even remember what it is like!! oh well .
Camper1970
Member

Re: November Newbies 2013

Well said Swansea girl it's Christmas.😀😀😀😀😀😀😀😀😀😀
Camper1970
Member

Re: November Newbies 2013

Morning all , hope you get your wig sorted Sam, I was impressed with mine like you say when you know what you want I am sure you can get off the Internet , I seem to be okay today got next fix on the 13th but concerned as my hand where they put the needles in is still very sore and really not looking forward to it 😒, some of you have had lines put in is that you have struggled as well ?

Just had some good news that my critical insurance has confirmed the claim, not much as it was a policy I didn't realise I had , but it will take the pressure off working for a while at least some good had come out of this horrid time 😊

Hope everyone else is not suffering to much, I feel like I am getting off lightly , does it get worse after your first one ?

Take care all xxxx
alabamasam
Member

Re: November Newbies 2013

Morning everyone, had a busy day yesterday but it wore me out. Went for a wig fitting but i had ordered 2 short, one mid length and one long - long was discontinued, mid length was just ok and the two short ones looked like something from Crackerjack !! At least it has shown me that i need to have a long wig. The lady has ordered 2 more but she still cannot tell me how much they will be - not even an idea so this is putting me off getting one really. I may just order one from ebay and have done with it.
anyway, we will see with these 2 long wigs next week i guess.
I also had my line flushed, saw my oncologist, well actually another onc as mine was away. This one was much nicer, says i'm doing everything i should be, gave me more Emend when i said it had worked so i'm all set for next dunk on the 18th - seems so far away.,
So, hopefully my cold will have gone and i'll be on track.
Hope everyone is ok.
Sam xxxxx
SwanseaGirl
Member

Re: November Newbies 2013

Morning all - hope you are feeling as positive as you can . Today is another day closer to the end of this crappy time ! And it's only 21 days to Xmas !
SwanseaGirl
Member

Re: November Newbies 2013

Give in to it Tazzles , definitely !
Camper1970
Member

Re: November Newbies 2013

Morning tazzle someone I know who is just recovery from cancer told me to listen to your body and that's so true if you are tired sit and relax and sleep if you need honestly I had 3 great days then 2 bad days and all I did was sleep , pretty much like you no appetite not like me, i am a coffee queen couldn't even drink the stuff normally i drink loads and loads, had random things to eat , but the last two days have been great and able to do stuff like normal

Honestly rest and sleep if you can take care 😀xxxx

Nic
Tazzles
Member

Re: November Newbies 2013

Good to hear from you Tracy and so glad to hear you are feeling better. My nausea has pretty much passed now but I am SO sapped of energy. Just eaten my bowl of museli and it was so difficult to get my jaw working - that is so unlike me as I live for food! I'm not sure whether to try and fight the exhaustion or just give in to it. I don't want to compromise my immune system and then risk infection if I overdo things. Any suggestions anyone?

 

XXX

Tracy1967
Member

Re: November Newbies 2013

Morning all, hope everyone is feeling ok. Feel much better today, headache and nausea is now subsiding thank goodness. How you feeling today Tara? Hope the sickness has gone for you also. Sam fingers crossed still no nausea and colds on the mend for you and your son.

Take care all

Tracy XXX
Nanny_Sal
Member

Re: November Newbies 2013

Hi Julie

Sounds like a dramatic first dose! You and Sam are clearly the 'trouble makers' in the November group 🙂 Lets hope you both have drama free 2nd doses!

Heartburn seems to be a side effect for alot of us. I had heartburn for about 2wks. Of course it's okay now, just in time for my 2nd dose! As for your girls, don't feel bad. Spend lots of time with them on your good days! Bad days mean lots of hugs on the settee! Remember you are giving up a few months of your life, so you can go on to live a long and happy life, with your girls.

I survived drop off and nursery pick up without too many odd looks or questions! Just one more pick up to go, then the worst is over 🙂 Feeling tired today, so have decided to definitely talk to my boss about going down to a 4 day week in the new year!

Glad your doing okay Sam, except for the cold. Hope you and Alex feel much better soon. Xxxxxxx
julieh1971
Member

Re: November Newbies 2013

Hello!
I was diagnosed on 2/10/13 with grade 2 IBC no nodes/no LVI but am having 6 cycles of FEC because I am still quite young and as my Ki67 score was borderline. Had my first FEC last Weds (28/11) but I ended up being worked on by the crash team for an hour because my blood pressure and heart rate dropped when I had the cannula put in! Feel such a twit, not normally squeamish but I guess the chemo anxiety finally got to me after weeks of being so outwardly positive. Thanks Nic for posting your experience, made me feel a bit better 🙂
Anyway the rest of the chemo went in fine and apart from heartburn have been ok, but really tired today. My poor girlies (aged 5 and 😎 are so confused by all of this and I have found it really hard saying I cant do things for them over the weekend. Rest up today, hope for better tomorrow. Good luck to all of you. Jx
alabamasam
Member

Re: November Newbies 2013

I'm still feeling ok although my 5 year old is full of cold and now so am i. Just about to phone the docs to get him in then i'll call chemo unit as i have a onc apt tomorrow but that was made before my chemo was delayed a week so i need to rearrange
Never a dull moment hey ?
Are you ok today xxxxx
SwanseaGirl
Member

Re: November Newbies 2013

thanks Sam-  how are yoy this morning ?

alabamasam
Member

Re: November Newbies 2013

Hi Nadine, i've added you to Facebook now xxxxx
Sam 🙂
Camper1970
Member

Re: November Newbies 2013

Hi all well it's day 10 after my first session and gone through many stages from the usual feeling sick no appetite , to have horrendous heartburn , went back to work for 2 days as didnt feel too bad, then spent 2dats absolutely exhausted , only today okay , god it's a roller coaster , off for fitting of my wig, like yourself keep pulling my hair to see if coming out but nothing as yet, which is good , dies this tend to happen around the second session?

Well hope everyone is doing okay and sending hugs to all keep in there do what you can when you can , 😀

2nd session 13december so hopefully won't be too bad over Christmas , not sure if I will manage the eating of Christmas dinner thou, but will have a good try

Xxxx nic
Tracy1967
Member

Re: November Newbies 2013

Hi Tara, we're both in the same boat. They gave us the weakest nausea meds and now we're suffering. Like you smells are driving me mad, I keep imagining the smell of the meds and that makes me even more nauseous.

I must admit I still feel nauseous today but not as bad as I was, the problem I have is sleeping. I really want to sleep but I keep waking through the night with the nausea feeling in my tummy. Hopefully things will get better after today.

Thanks all re Emend - I will be demanding this drug when I see my oncologist before my next treatment.

You're so right Sal - 1 down and 5 to go - I'm definitely counting!

Love to you all

Tracy XXX
SwanseaGirl
Member

Re: November Newbies 2013

Hello all - big hugs to those that need it today .
Feeling vv tired but probably overdid it yesterday .
Bought a fab hat , actually felt emotional , almost relieved that I'd found something I liked and is a bit special amongst all of this . Having a big Sunday lunch today with family and need that to keep all things "normal" .
Lots of love to all
Nadine
Tazzles
Member

Re: November Newbies 2013

Hi Suzy 

 

Thanks for the advice on Emend. I had stressed to just about everyone I spoke to in the hospital that I felt I would suffer from sickness as I've been told that it is more likely if you suffer travel sickness, but they still gave me the mildest one available. Next time I will be more assertive (as I've just posted - even the thought of the smell of those drugs coming out in my wee is making me feel I want to puke!)

 

xx

Tazzles
Member

Re: November Newbies 2013

Hi Tracy

 

Thanks for your message and I hope you are feeling better now too. I'm still pretty nauseous but am eating a bit to try and keep my strenth up. I have no energy at all and the dogs are constantly bothering me for attention. Luckily I don't have children - at least I can lock the dogs in another room and ignore them!

 

I think I'll stick with the November thread as everyone seems so supportive. 

 

Does anyone else have a District Nurse coming every day for 10 days to give injections to boost white blood cells? I'm feeling a bit paranoid about day 7 to 14 when my immunce system is wiped out.

 

Lots of love and hugs xx

Tazzles
Member

Re: November Newbies 2013

Thank you so much for your lovely message Nanny Sal. I'm feeling so emotional and still trying to cope with the nausea although I am now managing to keep some food down now. I'm absolutely sapped of any energy though.

 

I keep pulling at my hair to see if its trying to escape but all seems intact at the moment. Maybe it won't be so bad when it actually all goes. I think I will most likely try the wig for a while as I don't think I'm emotionally strong engough to cope with people's reactions at seeing me with a 'cancer head'. I've heard a number of people say that people have actually crossed over the road or moved tables in cafes to avoid being near them - as if this is contagious!

 

I still think I'm trying to come to terms with all this and having bad and (comparatively good) days. I think you're right about being prepared for it next time. The only thing is that the smell of the chemicals in my wee seemed to linger in the house for the first few days and now if I even think of that smell I feel sick!

 

I'm still not entirely sure how this forum works and whether this reply just goes to you or to the whole thred. I need to spend some time when my mind is clear to work out how it all works. 

 

However if everyone can view this then I wish you all lots of love and hope you are coping ok. 

 

Tara xx

alabamasam
Member

Re: November Newbies 2013

Well, another day and thnak god for Emend ! I've finished it now but it really did help so like Suzy says, just say you have all been so sick and you will get it.
I am just having some breakfast and then we are off to the Xmas fair xxxx
Hope everyone has a good day.
Love Sam xxx
suzy52
Member

Re: November Newbies 2013

Sorry to hear some of you are struggling with nausea post chemo, EMEND is the drug for you! It is marvelous but not handed out freely as its very expensive - so if your going through hell, say nothing is working and demand EMEND.

 

xxx Suzy

 

 

Nanny_Sal
Member

Re: November Newbies 2013

Hi Tazzles

Sorry to hear you have had a rough time, but next time round they will be aware of all the issues you have had, and they will give you stronger drugs. Just make sure you are honest about any problems you have had. BIG HUGS coming your way.

As for hair loss, I lasted till day 16 before there was any head hair loss, bit earlier for 'other' areas! First day that I realised it really was coming out, I cried, I felt sorry for myself and I got angry! By day 3 of hair falling out and getting everywhere, I decided to shave it off! I was thinking that I would be crying and upset. But I think I had already gone through the emotions of loss, I was at peace with it happening, I was ready and prepared. My mum did it, and believe it or not, we even managed to laugh and joke! When I looked in the mirror I realised I actually looked okay 🙂 Going out I wore a scarf, although I do have a wig. I thought for me, and this is different for everyone, I wanted to go out with the scarf and see that people really don't take that much notice. I was a bit self conscious but it was fine! I was thinking of wearing wig tomorrow for the school runs, but actually I think I NEED to wear the scarf so people can see that my hair is gone, because IF I wear the wig, and people don't notice then I will feel that I have to wear it everyday, or I will get more attention when I suddenly don't! If that makes sense?! I figure once people realise then I can relax, and whether I wear, wig, hat or scarf I will feel relaxed.

This is a very personal journey, and I think we all need to do whatever makes us as comfortable as we can be. Just to show you what a BIG step this was for me. I have had long waist length hair/mid back at times for the last 20years! This morning I got up showered and I was ready for the day 🙂 I am now thinking that short hair might actually suit me okay (maybe not this short) but I think if I can take one positive out of this crap situation. It's that it's given me the push to try something new!

Sorry I will be quiet now! I am gabbling. Just trying to reassure you that although losing your hair is hard and emotional, it probably won't be as bad as you are imaging. Xxxxxxxxxxx
Nanny_Sal
Member

Re: November Newbies 2013

Hi Tracy

Sorry to hear you are feeling a bit rough. I hope you are feeling better today. Just keep reminding yourself that you're one dose down, which is a step nearer to the finish line 🙂 sending you a BIG HUG XX

Hope you are resting, you will be up and about soon. Enjoy some Christmas movies 🙂 although if you are anything like me at the moment, my emotions are all over the place. I have cried at the weirdest things! The John Lewis ad gets me every time 😕 (yes I know it's just a cartoon) xxxx
Nanny_Sal
Member

Re: November Newbies 2013

Hi Sam

Hope you are still feeling okay this morning, and you get to go to the Christmas Fair and to see Father Christmas 🙂 remember you're a 'grown up' now, so NO sitting on his knee 🙂 have fun! But plan your visit with lots of pit stops! I know when I first went out after my Chemo I was shocked at how tiring it was, even though I 'thought' I felt okay! Take it easy! Big hugs xxxxx
alabamasam
Member

Re: November Newbies 2013

Well done Sal, you should be proud of yourself !!!!
Sometimes i do think this is all harder for our families than us.
Hope you treated yourself at the fair, i'm hoping that i will still feel ok tomorrow as there is a fair just up the road and father Xmas is there so want to take Al.
Finished my Emend today so back to regular anti sickness tabs.
All my love Sam xxxxx
alabamasam
Member

Re: November Newbies 2013

Hi, i have gel nails but i have got them painted a lovely colour from Rimmel - a very dark purple called Black Cherry as it is good to keep the nails dark while we have chemo xxxxx
Tracy1967
Member

Re: November Newbies 2013

Hi Sal, you're so brave, well done re your hair.

Sorry to hear you've been feeling sick Tazzles, let's hope we both feel better tomorrow. Regarding your thread question, we stay on the November Newbies thread as this is our group however you can post on the December angles as well if you want. Take care Tracy XXX
Tazzles
Member

Re: November Newbies 2013

Hi all 

 

Thank you for the welcome messages. Since posting on Thursday just after getting back from 1st chemo session I've been feeling really sick. I was given anti sickness pills from the hospital but had to get more from my GP the next day as I was still being sick. It seems to have eased off this afternoon but I feel pretty wiped out. Had a burst of energy this morning so set off out with the dogs but flagged pretty quickly. Its all very daunting and I'm just sitting here waiting for the hair to start falling out. Its all so daunting and I just hate this lack of control over my life. I have a district nurse coming every day for 10 days to inject me with stuff to try and boost my white blood cells and the injections are painful! Trying not to be a wimp though. 

 

Partly regret not having tried a cold cap. I was going to but my consultant is against them in case it prevents the chemo drugs from working. From my own research I know this only happens in a miniscule no of people but because my tumour was so large and aggressive decided not to chance it. Also I don't like cold and hate hospitals with a vengeance so couldn't wait to get out as soon as I'd been zapped. 

 

I am totally clueless with regards to facebook but may try and check out setting up page for myself to keep in touch. 

 

By the way does the November thread stop on 1st December and do we then long into the December one instead? 

 

xxx

Nanny_Sal
Member

Re: November Newbies 2013

Hi all

So the deed is done!! My mum cut my hair! I am officially Pirate Sal. I think coping with hairloss for a couple of days and getting fed up with finding hairs everywhere. When it finally came to doing it, I was okay with it. Think mum found it harder!

Just been out to a Christmas fair, I felt very self conscious for a bit. Then just got on with it! Next hurdle will be going back to work and the school runs! But once that's done, I think I will totally relax! 🙂 I feel very proud of myself!! Xxx
Maryland
Member

Re: November Newbies 2013

Hi...I had docetaxel last year and Onc advised against painting nails as it could mask potential underlying infection. She said that each infusion stops nail growth and some people lose the tips of their nails. Mine were a bit painful, I lost some but not all, and some fell off up to 3 times. Helpful to keep them really short and moisturised....white cotton gloves worn overnight with unscented hand cream kept my hands smooth. 5 months later they were all back to normal, except toenails which were much slower! Have since read that keeping fingers in icy cold water during TAX helps, but not sure I could have stood that! I did find good old fashioned remedy of soaking painful nails in warm boiled water and vinegar helped...hopefully your nails will be fine and best to ask your team as everyone seems to get different advice....take care

Tracy1967
Member

Re: November Newbies 2013

Meant to ask - I was advised to paint nails dark or opt for gel nails before chemo by a lady who works at the QE in Birmingham, she kept her nails through FEC-T. Apparently when the light gets to the cuticles this is what causes the nails to lift. I'm seeing my oncologist on the 13th Dec and will check this though. Anyone else having / had their. Nails treated. XXX
Tracy1967
Member

Re: November Newbies 2013

Hi Sam, glad to hear you're doing so well, I'll certainly be asking for Emend when I visit my oncologist on the 13th Dec as my next chemo session is on the 20th Dec. I didn't sleep very well last night but have tried to drink plenty of water and managed some breakfast ( just trying to chill out and hope it stays down) still Nausious but not as bad as it was last night. I've also had bad headaches which can also be related to the type of sickness drugs they give you. Hopefully things will slowly get better now. Take care all XXX
alabamasam
Member

Re: November Newbies 2013

Morning everyone
I still feel fine, actually got sleep last night from 11.30 till 5.45 and then was just asleep again but mum called and woke me but I should get up to take my meds.
I have a couple of jersey bandanas from Annabandana but also bought a lovely quirky hat from the Xmas market in Manchester so all set plus a new Green Bay packers beanie for all of the family for Xmas.
Right off for my steroids xxxx
Hope everyone is ok
Love Sam 🙂
SwanseaGirl
Member

Re: November Newbies 2013

Hi Sal - I found a website Anna bandana - and they are reasonably priced. Also suburban turban ( I think?) which are fab for a special occasion. I'm going Xmas shopping today so I'm going to treat myself to a nice hat too
SwanseaGirl
Member

Re: November Newbies 2013

Morning all
Hoping that everyone is coping as well as they can. I'm finding that I'm tiring at 5pm so may start trying to have an afternoon nap , otherwise it's when the boys are home from school that it hits and if I can keep "normal" ( not that I am !) then that would be good. Also I think it's more important to be running them around as a taxi service that trying to do a full day in work. So ... From tomorrow I'm going to slow down ! honest!
alabamasam
Member

Re: November Newbies 2013

Hi Tracy
I was sick last week and so I told the nurses and then I got Emend. Apparently it is a very expensive drug which is why it's not prescribed but I had one tablet before chemo and they gave me two more, I took one this morning and one for tomorrow and I've had no sickness at all. Call your chemo unit or nurses and tell them how sick you have been as then they may be able to get it in for you for next time as you have to take it an hour before your chemo
. Are you drinking loads of water ? I hope you feel better quickly
Big hugs Sam xxxxxx
Tracy1967
Member

Re: November Newbies 2013

Hi everyone, thought I'd give you a quick update. Had my first course of FEC this afternoon and had the gel cold cap which my hospital provides. Boy were they cold but I managed ok. Think I had 6 cap changes. Thought everything was going ok until this evening, I've had terrible nausea and been sick twice- not want I wanted! The nurse did say that they were starting me on the basic sickness tablets however if I had problems this would be reviewed. The nurse mentioned a sickness treatment called Emend which is supposed to work very well - why don't they just give you the best instead of taking chances. The whole chemo thing is bad enough on its own without feeling this way. I'm trying to drink as much water as possible but this just seems to bounce, fingers crossed this will settle down tomorrow. Goodnight all, take care. Love Tracy
Lucy_BCC
Member

Re: November Newbies 2013

Hi Nic and welcome to the BCC forums
In addition to the support and shared experiences here you are welcome to call our helpliners for further practical and emotional support, lines are open weekdays 9-5 and Saturday 10-2 on 0808 800 6000

You may find the following link to the BCC Treatments and side effects including hair loss information and further support ideas helpful too:



http://www.breastcancercare.org.uk/treatment?utm_source=Homepage&%3Butm_medium=help_you&%3Butm_campa...

Take care
Lucy BCC

alabamasam
Member

Re: November Newbies 2013

Hi Nic
Welcome to our November group. How awful you had such a bad reaction for your first go but hopefully your next one won't be so bad and they can change anti sickness meds to suit you. I had a lumpectomy in September, full node clearance in October then a first chemo attempt on nov 20th. I'm cold capping and it shut down my veins so after 4 hours of trying and 6 cannulars they gave up and this Tuesday I had a Hickman line fitted.
What a difference ! Had the rest of my chemo yesterday and so far no side effects but I have drank loads of water to flush it out and ill keep in doing that.
This forum and our Facebook group keep me sane, there is so much support on here that you will find so helpful
Glad you found us
Sam xxxxx
Nic Digby
Member

Re: November Newbies 2013

Hello

 

I just want to say hello. I'm a newbie here. I had a mastectomy and anxillary lymph clearance on 7 Nov, the portocath fitted last week, and had my first FEC-T chemo on Tuesday this week.

 

I had a rotten reaction after the chemo (passed out) so had to stay in hospital. Thursday and friday have been ok, I am bit knackered and if I get too tired my top of my chest starts hurting? I think that might me where the portocath went into the vein up there last week.

 

Today my head buds starting hurting so I got a new mobile hairdresser to come and cut my long hair up to a short bob. I'm happy with it actually. Not ready for the next stage of shaving but I do have a wig, and lots of hats on order.

 

I'd like to chat to anyone who can relate to all the myriad of feelings that this sudden diagnosis has brought. I didn't want to have to learn this whole new cancer language, but I am having to, and I find it very difficult to ever turn the non-stop worrying/thought process off.

 

Best Wishes, Nic

 

Camper1970
Member

Re: November Newbies 2013

Hi Sam just ticked the message box to receive sorry 😊
FJ
Member

Re: November Newbie's 2013

Hi Sal,

Yes I have decided to do the deed also tonight !

Will be interesting to compare notes over the next few months re hair growth as we are pretty much the same with treatment etc.

Take it easy as I think half of my problem is I may have done too much becuase I felt ok xxx

 

Curleychris
Member

Re: November Newbie's 2013

Hi Fj Ihad Fec-T from Jan -May. Had similar problems lost count of how many times I was drained. Had drainage again following !st chemo and was delayed for the 2nd due to low counts. Continued on AntiBiotics and seroma suddenly resolved. I did receive Chemo while the area was still red no problems. Didn't bother shaving my hair and residual hair came away fairly quickly. Hope all goes well with your next treatment.
alabamasam
Member

Re: November Newbies 2013

Hi Nicola
I can't send you a private message back as it is saying you haven't got private messages enabled which is odd as you messaged me so see if you can enable them and ill try again in a bit
Sam xxx