May 2017 chemo starters

[Mai7]

Bwaaahhh! We've gone all silly again: chemojies and getting rid of unhealthy lumps! 😜 Well done Trisha, don't bother asking for a reconstruction on that one!

[katie11]

Ha ha, unhealthy lumps! Love our little group!

Hope your all doing well ladies xx

[MJK]

Well done Trisha. After all getting rid of unhealthy lumps is what it's about at the moment. Big hugs. X

[Trisha69]

WOW!  Thank you, you are absolutlety spot on I got my keys earlier with no drama.  (his Mother was nearby)  I let out a mahusive whoop whoop scream as I left 🙂  Feeling very positive and so much better without him xx

[Trisha69]

OMG  get the Tena ladies out that made me laugh!!!

[Mai7]

MJK - Tribble lol! I sure hope it doesn't start multiplying on your head. Maybe avoid getting it wet!? 🙊 You've got me thinking about alpacas now!

on the work front, I've only needed one sick day so far as I've been really well. I still have most of my years holidays to use up so I should be well covered for the Docetaxol cycles which I'm anticipating may be tougher to get through.  

I still have 2 more cycles of FEC to go (No.3 on Thursday) so those of you on FEC-T 3+3 will overtake me on the Docetaxel start.  So I was the May FEC Guinea pig but who will be the New Guinea pig amongst us for Docetaxel? Will be you Raitchr? I'm ready to hand over the crown! 👑

[treehouse]

Lol. X 😂

[MJK]

I love it. 😀 My next 2 weeks in chemojis us looking like 👧➡👦➡🤔➡🐗(tribble)⬆🙆

[AnnieA]

Treehouse that comment has actually made me day 😂
chemojies 🤗😉🙃 xx

[treehouse]

Have you ever noticed that all emojis are bald? 😉😁😝

Chemojies 😂

[MJK]

Nor had I but my wig is definitely a tribble. The likeness is spooky. 😀

[treehouse]

Morning ladies. Goodness you have all been busy in the night. Annie I am sorry I have no words of wisdom regarding lines. But after my last treatment day, I am half expecting to be recommend one. And like you would be very nervous about it. So sending hugs and ask if you can feed back after. We are all here for you. Trish you are sounding so strong 💪 right now. I feel my illness is to help me take stock of my life and make some changes. Still working out what they are though.
I also have felt really well this time round. Which is nice but compared to first time is a little worrying. I kept saying first time, if I feel this bad, it must be working. I have been signed off work till end of July. Then it is summer hols. Not sure how much time off we need for surgery? I woke up briefly at 4 with sinus pain. Got me thinking about nasal hairs.......do they fall out too? And if so, where do they go?

[WolfEE]

MKJ just googles tribke from star treck (never watched before) 😂

[WolfEE]

Trish69, maybe you could use your holidays for each week 1 (and week 2 because immune is at lowest) and perhaps try and work week 3 that's what I'm thinking I will try and do?? I'm two weeks in today and feel good also. Tomorrow I'm going in2 work just for a few hours test the weather but I feel nervous about seeing people (my temp replacement) and sharing kitchen and toilets and paranoia of germs!! But if I don't do it tomorrow I'm not sure I will because I feel I'm developing a fear!!
Glad the boyfriend is away this will give you some time to think about yourself and recover in peace thinking about yourself and not looking after the big kid having 2 consider his actions and reactions all day long. Keep strong once this is all over if you wish you can try and work things out with him although by then you should be realising how simple life is without him and be so strong and confident in yourself that you realise his not even good enough for you and you deserve better. Xxx

[MJK]

Hi AnnieA, I hope you got some sleep. I can echo what Trisha69 says. PICC Line fitting is fine and I don't have any problems with it. It was slightly tender for a day but nothing like the biopsy. I didn't get George Clooney though 😞which is rubbish as it's his local hospital and he was a doctor. Trisha69 I'm on day 14 too and feeling fine as well. You could ask for the holiday as it would make sense for them and you. I'm not sure what your job is but could you go back to work for a week before the next round? X

[AnnieA]

Sorry Anniej, a Hickman line. Thanx for the reassurance ladies. I know it's got to be better than sitting for an hour trying to find a vein every single time 😕 I'm totally overthinking it I know I am. I just want it over and done with xx

[Trisha69]

Just spent 5 mins replying and pc crashed!!  GRRR

I was scared and really didint need to be.  The only pain was the ouch of the local anaesthetic.  Took 10 mns and helped that the person doing it was a George Clooney look a like 🙂

I wear a fabric sock thingy over it and get it cleaned and flushed weekly. Doesnt feel uncomfortable, I even almost got in the shower without my waterproof cover forgetting to keep it dry!  Muppet!  Be strong, you will be fine, sending a big hug. x

[Trisha69]

I  am on day 12 since my first FEC  and feel guilty that I actually feel well???  Scared its gonna crash down on me.  Boyfriend left and I am glad! Got thru the very sore throat and constipation. (That was horrid) Dont sleep well, hence awake at silly oclock, but did have a solid 4 hours.  How amazing was the MCR concert!! Iam a Mancurian and if the boyfriend had been here would have had to watch Motorbikes, so silver ligning in every cloud! I do like bikes but it meant alot to me to watch the concert.  My sick note runs out this week and am struggling on SSP have loads of holiday due that have to take by end of July, so need ask work if can take that or do they have to honour it??  Any advice be welcome. 

Sending big hugs to all of you xx

[WolfEE]

Annie, sorry can't help as I haven't got one but can sympathise as I would feel squeamish over the line thing but I have heard the make such a good difference and as with most things I'm sure it will be nowhere near as bad as you imagine.
Mostly I wanted to message you because you were still up and awake and try and comfort you please don't loose sleep over it xxxxxx

[Anniej]

What kind of line?

[AnnieA]

Hi ladies, I'm looking for abit a reassurance. I'm having my line fitted on Tuesday and I'm really struggling with the thought of it. I've hardly slept for days now worrying about it. I know it's going to be a gods send once it's in it's just the thought of the procedure makes me anxious. Those of us who have one already can I ask how you found the experience, any worse than a biopsy? I know it's late and I'm hoping your all asleep right now but any replies in the morning would be appreciated.
Annie xx 💕

[treehouse]

Tribble is great 😊. Oh its a bit chilly when you take it off. X

[misyangel]

Treehouse sorry only just seen your message, no I haven't had surgery as yet at the end of chemo they are hoping to do lumpectomy 

[MJK]

My wig now has a name - thanks to my husband who says it looks like a trible from Star Trek. Trible it is then. 🙆

[MJK]

It's a tough decision and so personal only you can take it. I decided against immediate reconstruction. The implant could've gone wrong with the chemo and radiotherapy. Even if it hadn't, it would need to be replaced twice in my lifetime. With clothes on you can't tell. The surgeon was initially surprised but post-surgery was relieved as the cancer was worse than expected. I just need to not leave the boob in random places...

[Mai7]

I just cried with laughing at your boobarella stories! Have to see the funny side in these situations!

ive no idea what I'm going to do on the boob front. I'd like reconstruction but then not sure if this will get in the way of scanning equipment, or if I need radiotherapy etc so tough decision, probably have to wait until end of chemo before they can assess how much tissue has to be removed and whether they need to do radiotherapy etc. I also have benign fibroids in my other breast so do I ask fir a lumpectomy on that side? Too many questions......

i already had the end of my cervix removed about 2 years ago after an abnormal smear result so part of me is thinking - shall I just suggest hysterectomy and ovary removal and just get rid of all of the hormonal equipment? Seems radical but the hormone factory doesn't seem to be doing me any favours lately.

[MJK]

Love it 😀. I have a softie since surgery. It fits in the bra pocket. Out one day it was quite sore so I took the softie out... forgot it. Next day I called my husband at work. 'Have you seen my boob?' 'Yes, it's on the car seat.' 😶😊

[treehouse]

Hi curlyh. Well went out for Sunday lunch with family and feel fab in my wig. I remember as a kid going strawberry picking with my mum. She also had a prosthetic left boob. As she was bending over it slipped out of her bra. She then stood up quickly and it smacked her in the face while trapped in her t- shirt. I still get the giggles when I think about it now 😂

[curlyh]

Hi Ladies

Treehouse well done on wearing your wig...I hope it is comfortable for you..I don't get mine till 21st which is after 2nd treatment so will probably have to use some hats I have bought by then.  Was smiling at the name for your wig...I had my appointment with prosthesis nurse on Friday to get my fake boob which my family are trying to name!!!...must say it was the best appointment at hospital I have had yet. Lovely nurse who checked my wound and was very impressed with how it has healed which is good to hear...as someone else said another surreal situation we find ourselves in during all this...I came away with my fake boob and a lovely bra for free and heaps of brochures for ordering more...I don't think reconstruction is something I will go for ...just need to get through this treatment.  I also was someone who took no medication or have ever been ill so I do find the hospital appointments and drugs all quite surreal. Enjoy your Sunday everyone x

[Raitchr]

Rosie I didn't know or had forgotten you were triple neg too, I don't feel so lonely now!

[treehouse]

I am wearing my wig (Ashley) my boys are smiling and hubby says I look like ihave spent a fortune having a cut and colour. Am I the only one who thinks its better than my own hair? Misyangel I know what you mean about the injections. I do mine at night as they were upsetting me in the day. Don't punish your self about the pill. It did not help me! Wolfee don't rush shaving. You will know when you are ready. I wanted to do it yesterday but husband kept saying he would do it when I was ready. I don't think he was ready. I really had to persuade him this morning. You can just leave it. I found it sore and got so fed up with the mess.
I got my Head on the sand about surgery right now. I really wanted it first. Just getting through chemo. With great hair! 😉

[MJK]

Big hugs Rosie, it's such a tough thing to live with. I'm oestrogen positive and they have said I will be on hormone therapy after the chemo. I think I would rather have the ovaries out (I'm 43). I'd rather not be pill popping and I can't use my AHCC immune booster with tamoxifen. Day 11 so no hair loss but have my Buff head wear from kayaking days. I wore it yesterday to keep the sun off my head although the first thing I grabbed out the bag was my son's pants (he's 4). Not the look I'm going for. 😀.

[Rosie65]

Not sure why my post said emotional content!! Didn't realise I'd done that. It's the imminent hair shave that's getting to me ha ha

[Rosie65]

Oh WolfEE I really feel for you. There was a lady next to me at chemo who was 37 and had been having ivf and now diagnosed with cancer and said the same thing about now the chance of having children being taken away from her now

I know my niece is worried that if she has the gene she will have to make the decision re children/ ovaries out as she is 27 and her mum had bc at 29

Re hair It is so difficult. I still have quite a bit but it looks so awful that I'm hoping the shave will be worth it as trying my wig on made me look more like my old self. But I'm very very nervous. As Mai7 says it's all coming out as some point so we're just delaying the inevitable but it stills feels like the hardest thing to actually do

[Rosie65]

Well done treehouse on braving the shave. I am going to get it done in about an hour's time. Feeling really nervous now. You made me laugh re the sellotape. Just been doing my clothes but it's pointless as shedding  so fast now.

Re ovaries If you can get drs to remove them and Fallopian tubes then I'd say go for it. Had mine done as keyhole surgery, went in the morning and home by lunchtime. About a week's recovery period, think I took two weeks off work but that's because I commute on the train. My mum sailed through menopause but then got ovarian cancer . It was found quite late and she passed away very quickly. However, we didn't know anything about genes then

Now we've had BRCA 1 gene confirmed my daughter, sister and niece will be tested and if they have the gene  they want risk reducing surgery. For my daughter/ niece that will have to be later on once they've had families but at least they will be checked.

For triple neg cancer like mine the ovary removal protects you against getting ovarian cancer (up to 80% lifetime chance) although as the bc is not hormone receptive it doesn't make any difference to the bc. With BRCA 1 the lifetime chance is 90 -95%

My sister who had trip neg bc 25yrs ago had bilateral mastectomies and ovaries out and is now 56. She had the " boob job" and "tummy tuck" combo and looks great!! So that's what I've asked for! 

Just got to get through the chemo first.

Spoiler

[Mai7]

WolfEE, you could always keep your hair for another day and wear a hat to your wig fitting. You may feel more upset if you shave your head and can't make an immediate grab for the wig? I don't think you would regret shaving it early either as you are so aware of the way this journey is going anyway. I think either way could work fine but just have confidence in your decision once it's made. 

I really feel feel for you on not being able to have a choice about having kids, whether you would have wanted them or not. Since my kids went to Uni, I felt quite empty but didn't want any more kids either so decided to sponsor a child through Plan International which has turned out to be a wonderful feeling. What I'm trying to say is that there are many options to fill a void. X

[Raitchr]

I hung on to my hair until day 18 of first FEC then it just annoyed me and hurt. You will feel better once it has gone especially if you have a wig to use. I am not having a wig and just using scarves and hats. Around the house I don't bother but keep one near the front door in case anyone comes unannounced!

I just felt that the sooner my hair went then sooner it would grow back as now just had 2nd FEC and so hopefully in 6 weeks when I go on to T it will sprout again.

Heather

[Mai7]

MisyAngel, I do hope we come out looking younger - like a full body Botox! 

[WolfEE]

Mai7, my oncologist said the same thing deal with one thing at a time starting with chemo then discuss next steps. So I don't know much about my surgery or hormone treatments at the moment apart from the fact that there will be surgery and hormone treatment.
I've not had children yet but to be honest I'm 37 now and perhaps it was never on the cards for me but it's still a bit upsetting knowing the choice has been taken away. Originally before the lymph nodes were found positive I was having surgery 1st and had been referee for egg preservation but when the plan changes and chemo was decided 1st there was no time. It would have delayed treatment by around 8 weeks and I was afraid of the delay so had to make the horrible decision and crack on without the preservation.

This morning my hair has started coming out if I touch my head. I know I have maybe a week or so of hair???? But my wig fitting is tomorrow I'm thinking just to have it shaved off I'm finding seeing the hair destressing and then imaging how it will look getting thin. Perhaps walking in2 the salon tomorrow and coming out shaved with the wig on and then it's done no more obsessing or worrying about it???? But is it early will I regret it??
I'm only two weeks in of my 1st treatment.
I was thinking to visit work for a few hours Tuesday so woukd mean going in for the first time after two weeks off with the wig on?
I just don't know what to do at the moment

[misyangel]

Treehouse i was on the pill, that's what I think deep down caused this   Glad you braved the shave I think you feel so much better once it has gone.  I will have to try massage once the aches start not started yet, just about to have second injection xx

[treehouse]

I totally agree, I never took tablets or went to doc. Was not even on the pill. I have felt so much better second round. Have only had one day nap on day 4 . Aches have been managed with paracetamol and gentle massage. Eyebrows may be slightly thinner but I have a 1cm gap in my left lower eyelashes. It is not easy to notice as I wear specs but since I have pointed it out, my husband is mesmerized 😁 it looks like a fashion statement. Lol

[misyangel]

Thanks Mai7 gald I am not the only one.  We can get through this and apparantly people who have chemo looks years younger after the event lol hope its true xx

[Raitchr]

My grade 2 shave yesterday makes me look ill but I feel well. Tomorrow is my day 5 which was bad on chemo 1 but so far with the extra meds I am doing ok. Woke at 4am until 6am but went back to sleep into 8am. Have to say wash n go showers are so time saving! 

Re ovaries. I am 46, my bc is triple neg so not hormone related. I have my children and  no longer need ovaries or periods in my life!Hoping chemo puts me in to permanent menopause but I really want ovaries out as ovarian cancer is a silent killer. Also want other boob removed. I plan to discuss this with GP after chemo finished and I am back at work so sick pay kicks in again. Had gene testing 4 weeks ago just waiting on results.

Hope you are all ok today.

Heather

[Mai7]

MisyAngel, I was just like that, apart from allergies which I could self medicate on, I very rarely went to the doctors and have been (an still am) really healthy. I think it makes this harder to accept as you don't really feel like there's anything wrong with you and it feels out of character for you to be in and out of hospital. I can totally relate to how you are feeling.

[Mai7]

Well done Treehouse for braving the shave! Does it feel better now? I'm sure the outer edges of one of my eyebrows looks a bit thinner and leg hair is definitely thinner (hip hip hooray!) My head hair seems to have plateau'd for now. Imagine Helena Bonham-Carter with a shaved head - I look a bit like that - a bit like a Tim Burton movie! Has anyone else noticed any eyebrow changes?

[treehouse]

Braved the shave. My gorgeous husband has given me a grade 4 all over. I was aiming for sexy GI Jo thing. Ended up more cute patchy fluffy hedgehog. It is going fast now. I used half a roll of selotape cleaning it out of the bed this morning. X

[misyangel]

My second chemo seems to be going so much better than the first as felt so exhausted on the sat/sun. really poorly on the monday/tuesday, but this time managed to go out for walk yesterday and hoping to do the same today and feel really normal.  Just hate taking all the medication and injections.  I was the sort of person who never got ill and never took tablets if I had headache so this is hard but its a means to an end.

[Mai7]

Hi WolfEE, I don't know what's happening beyond my chemo and surgery yet. I was told 8 rounds of chemo then mastectomy and lymph removal but ovaries and hormone suppressants weren't discussed. I'd consider ovary removal if it improved my chances of survival/recurrence. The most commonly used oestrogen blocking drug seems to be tamoxifen, again this hasn't been discussed with me yet but after much reading I'm kind of expecting that conversation to come up at some point. Beyond chemo, I've gone into ostrich mode and I'm keeping my head in the sand with the occasional peep out as I want to maintain focus on chemo and managing side effects as main priority.  🐣

Katie, yes, everything is surreal, like living in a floaty bubble whilst others can only watch as you float around inside with your drugs, hairloss and wig!  I think the surrealism acts as an emotional protection to some extent.  Just hope the bubble doesn't pop and keeps me floating along nicely until the end of all the treatment!

[WolfEE]

Same misyangel we do everything possible to protect ourselves going forward. It's just such an ordeal more surgery and further ongoing consequences and possible complications but it's all beneficial.
I get overwhelmed thinking I will never feel the same again but we will never be the same again but we will be alive and learn to be happy again and in the end be greatful. At the moment it's all the unknown and reading up about potential risks etc so sounds scary but reality is never so bad
X

[misyangel]

Hi Wolfee, I am having my ovaries removed i am HER2 Positive Grade 2, Having 8 rounds of chemo 4 fec, 4 tax, followed by hopefully lumpectomy then 4 weeks radiation hoping to have ovaries removed once this is compete. I want to do everything in my power to stop it coming back