September Sunbeams 2014

[Lou79]

Cheers Sam 🙂 yes felt good to get rid of it, I found it more stressful coming out in clumps, shaved it and had a few tears and forget it's gone now! A women after my own heart with t hats! I've ordered some good and some....well, not so. Have bought eyebrow stencils and pencils too! Well any excuse to shop 😉 xxxx

[sampeds]

Morning Lou, nice to hear you're 2 done now!! Yes it's the steroid rush making you all edgy and full of the weirdest energy I've ever known, lol, you know you're body is knackered but you just can't stop 😜,,, hope you feel as liberated and relieved as some of us did when you shaved the head, it'll be back and in the meantime you can go hat mad lol, I'm waiting a bit too excitedly for my amazon delivery lol, I've had to clear a draw for my headwear 👒

Have a terrific Tuesday girls, and hope SE are minimal and manageable for all,, lots of love xxx Sam

[Lou79]

Hi everyone!

Hope today is kind to you all. I had my 2nd Chemo (fec) Saturday and had emend. Managed to go London to support my man run t London parks half marathon, but am pooped now! Lol I feel tired, but can't sit still, is that t steroids does anyone know? Very edgy.
Shaved my head, as t dog was stealing it and taking to her bed!!ha, but I still have stubble... 🙂

Lots of love n hope u all feeling a lil better today xxx

[PaulS]

Good luck today Nutty75.  Another one ticked off!  Hope you are all feeling OK today Sunbeams.  Was lying in bed today considering today's issues for me.  Arm still bruised and painful.  But, manageable.  Gums raw and sore.  But, manageable with mouthwashes and the sodium bicarb gargling.  Hair loss - still coming out but did not wash this morning before going to work so did not seem quite so much (though could be kidding myself!).  Bit of a headache, but manageable.  No sickness or nausea at the moment - HURRAH. So, 8.25 am and at work and OK at the moment.  Long may this last!

Have a very good day Sunbeams.

P xx

[1852]

Good. Luck today nutty ,pam chemo nurse told me to elevate feet if bad to contact gp see if yours as any other suggestions hope your sickness as gone 😊👣

[Whitfield]

Good luck Nutty hope you get another one done.

Should imtell my BC nurse re the feet?

Pam x

[sampeds]

Best of luck for today Nutty,, another one ticked off!! Lots of love xxx Sam

[Nutty75]

Hi Sunbeams - I'm sorry to read some of you are suffering at the moment - I hope you all feel better soon.

My hair has been coming out in handfulls over the last few days - can't believe I've still got some on my head - I've got really fine hair but loads of it (or used to have ). It so upsetting - I do have a couple of lovely wigs - which at the moment look 100% better than my hair - I'm concidering wearing them now but I don't want to be too quick to chop my hair incase it slows down - also worried in case wearing of the wig makes my head to hot and makes the hair fall out 😔. If it wasn't for the hair loss I think I would handle this better .

I've had my bloods done today in readiness for chemo tomorrow - haven't had a call to say I can't have it so finger crossed. I'm doing t first and although I did spend the first weekend in bed feeling sick I didn't suffer to many SE's.

Right of to eat some cake and tea before I loose my taste tomorrow - take care everyone xx

[1852]

Been for prothesis fitting today feels strange nurse said seroma could take months to settle and just to carry on with painkillers pam my ankles swelled after 2nd chemo i havereclining chair so keep them elevated anyway do try and eat something pam and i hope se settle soon p i have also got cheap brazilian none left at all now great aint it i had no 3shave on head have some bald patches but hair at top as grown lightly bn says this happens at times on weeks no chemo weird i say! Hope all se,s minimal 😊 Den

[PaulS]

Make yourself eat something Whitfield - even nibble on toast - this really helped me over the weekend with feeling sick. And prop your feet up so the swelling goes down. So sorry you feel c**p. P xx

[Whitfield]

Feeling sick today and my ankles have swollen. Sad today. Px

[PaulS]

Thanks Mel51 and KnackeredNess - I so appreciate your comments and it is so good to know that you are out there!  This is Day 8 for me after the 2nd FEC, so sounds like you Mel51.  I SO hope that it eases off now and that I get through this one without much more loss.  My husband assures me that he can't see any bald patches yet, and that it looks OK, but I'm not convinced at all.  I have fine hair too, but apparently a lot of it.   I have gone to work, and have a big public thing to do on Wednesday, and feel so exposed.  And am I even allowed to mention p**ic hair?  Suddenly realised last night in the shower that this was going as well!  Told my friend this morning and she laughed and said it was the cheapest Brazilian I'd ever get, but though I smiled I did not really feel like laughing. God, I am struggling to hold onto my sense of humour, which is really not like me.

Hope you are all doing OK ladies - and that SEs are minimal.

P xx

[knackeredNess]

I've been having a terrible hair week too...SO MUCH coming out I can't actually believe there's any left on my head 😞 The nurse told me that often the first shed is the worst, but I have really started wondering if I am going to persevere with the CC or not. Feeling big miseries about it, so you're not alone girls!!! Getting fed up of having to wear something on my head all the time to stop the entire house and family getting covered in it. On the plus side the sickness has been so much better this time round, which is great. This forum really helps so much, just as a reminder that we are not alone dealing with all this crap.

Lots of love to all, especially those of you who are struggling today. Ness xxx

[Mel51]

PaulS,
I hope you don't mind me dropping in from the March thread, but when I read your post I felt like I had been transported back to April time when I was feeling exactly the same as you are now. Let me say that it is not pathetic at all. Your hair is a big part of your identity and you crave the ability to blend in with this disease and the hair thing is a big problem. I had a complete breakdown around my second chemo as I had a BIG shed of hair. I told my family and friends that I wasn't leaving the house and cried so much. Once I got that out of my system I felt a little better, although I became totally obsessed with my hair. I used the CC and after the BIG drop around my second chemo it really did ease off. I have naturally fine hair and the nurses weren't optimistic about my chances, but I held onto it. It was thinning and I had patches but it wasn't totally obvious and I managed to lead a normal-ish life (without work for me). The big upside for me was the speed at which it grew back. At the end I had my hair trimmed very short as it grew in places during chemo and looked lack lustre. The patches filled in within a month and by August you couldn't tell I'd been through chemo.
I know I've kind of babbled on a bit, but want you to know that you aren't alone in this and we totally understand your feelings. You will get through this and normality will return.
Take care,
Mel

[sampeds]

My one is prescription Peegee xxx

[Peegee]

Thanks, can I get that OTC or prescription?

[Peegee]

Fab, thanks

[PaulS]

Lots of hair coming out now - makes me want to weep. I hope this is it 'thinning' rather than simply shedding. Used to wash it every day but now only twice a week. Yuk!  So hope the torturous cold cap will do its job.  I know this is completely pathetic, given what we are all dealing with, but for some reason this is the absolute worst thing for me.  Have come to work today to try to get some normality back into my life. 

[sampeds]

Hi girls, it's hard all this, but don't for one second think that feeling down, weepy, sad, fed up, drained and all the hundreds of other emotions passing through us makes you not tough, it just makes us human! 💗

I still say my " don't let a bad day make you think you have a bad life" mantra a lot lol,, it reminds me that this crap isn't forever, just feels like it sometimes!! I still can't believe that 12 weeks ago I was just back from a lovely fortnight in Jamaica with not a care in the world, I'd have drunk a hell of a lot more and spent less time in the hotel gym if I'd known what was coming lol, hindsight eh!!!

My eyes have been stinging this week, picking up some eye drops later, not that I want to venture out in the monsoon!!

Lots of love and hugs to you all,, and yes PaulS we need to start thinking of places to meet up!! Off to do my yoga DVD, pop to get prescription then hibernate 😊 xxx Sam

[sampeds]

I use Benzydamine mouthwash twice a day, brush my teeth with it, using a child's soft toothbrush, my mouths been fine this time xxx

[PaulS]

Sodium bicarbonate - dissolve a heaped teaspoon in a pint of warm water and gargle for a full minute four times a day.  Did the trick for me.

P xx

[Peegee]

Hey Suns

Sore mouth. Ulcers.
What do I need?
x

[Whitfield]

Thanks for all the replies to my recent post. Sleep tight. Px

[Havingkittens]

Hello lovelies, sorry to hear about PaulS's arm, SEs being not so kind and that some of you are a bit low; me too. All weepy and floppy today and eyes are SO SORE anyway. Chemo 2 coming up on Thursday, and the nausea has gone up a gear into vomiting - Metroclopramide and Ondansetron not holding it off very well, really grinding me down. Will discuss all with chemo nurse as GPs aren't too great at this in my experience. Not helped by my hair coming out in handfuls. Have got very thick hair, but it's def thinning now. Feck it. Doesn't seem to matter that I KNEW it was going to happen, but I think I was in denial and t's come as a shock that it is happening.

I'm utterly s***ing fed up with this rollercoaster, there are so many indignities thrown at us and it goes on for so long and I'm only on cycle one. Better toughen up a bit. Wah wah. There I've said it, I am really moaning today. Love to all of you, sending my support and good energy. Kittens. 

[Char010]

Bless you pauls. It's a bum deal but we will all get though this together. Tomorrow is a new day xx

[PaulS]

I feel really odd today - not exactly sick, but as if I can feel the poison whizzing around in my veins!  I am having to make myself eat as I have absolutely no appetite at all and know that I need food to fight this and cope with the chemo and that I need it to keep nausea at bay.  So, back on the soup - breakfast, lunch, dinner! Since chemo began I have lost 9lbs (4 kilos) - but apparently they don't worry until it is 5 kilos as they have to change the dosage they give us.   I have one more FEC, then 3 Tax - and now really anxious about the SEs of the Tax.  Those Sunbeans who began with the Tax, how have you coped?  I have found the FEC manageable and just want the third one over now. My worst days have been the first weekend - so days 6 and 7 after the dose was given.

My arm is a bit better now, though the veins are still very hard and engorged, and I'm convinced that this is because the nurse the second time pushed the drug in so quickly compared to the first time. I felt it going in, and felt sharp pains up my arm, and it was very noticeable. And the first night my hand swelled up and I got a rash up my arm and had to call the helpline.   Am feeling mentally low today - quite weepy and fragile which is not at all like me, and I am hiding this from everyone, but I'm struggling.  Tomorrow I plan to go to work and try to be normal as I think this will help me, but I am worried about infections.  Got the flu jab on Friday, so have now had both the pneumomia jab and the flu jab. I was told to get it just after a chemo as the white blood count would be higher then, and they wouldn't do the chemo if it wasn't high enough.

Hope you are all OK Sunbeams - warmest hugs!  Regardless of when we all finish our particular treatments (chemotherapy, surgeries, radiotherapy) we will support each other and we will have a big celebration when we all finish!  We MUST plan this so we have something really positive to look forward to.

P xx

[PaulS]

Should not type on phone!

[PaulS]

Had 2nd FEC last Monday and using cold cap. Aware of more hair coming out but hanging in! So desperate not to lose my hair as I want to keep working. I have been reading what August cold cappers are doing for thin and bald patches and might look into it! Have a good day. Feeling ok－ish today. P xx

[Nutty75]

I am another having chemo before mx - I've got my second lot on Tuesday all being good with bloods! Enjoying my weekend eating lots before I loose my taste next week - I went right of tea for a week last time - Samps you sound like me with a pint of tea - going to make sure I drink loads today - even had a few glasses of wine this weekend that tasted nice! Hair still hanging on although I have lost a lot over the last few days - how are other cold cappers doing ? Take care everyone xx

[Char010]

Whitfield I'm in the same situation as you. I'll be having my mastectomy after chemo then radiotherapy. Had a lumpectomy and nodes removed in May. Then two execrations but could get enough of a clear margin so will still be here.
A busy couple of days for me need to paint the kitchen before my next lot of chemo on Friday.
Have a good day peeps!

[knackeredNess]

Pam, not to worry, I'll still be around...I went in for my surgery but only ended up having 3 lymph out as they decided at the 11th hour that the lump was too big (long story, but partly to do with me being on holiday), so I'm chemoing now and still need surgery afterwards. And after that who knows??

So sorry to hear about your arm PaulS, I hope it improves soon xx

Was up at 6.30 this morning, but actually have spent most of the morning dozing on the sofa, which is pretty much all I did last night after I got into be around 6.30!

[1852]

Pam don't worry we will still be here still needing and hopefully giving support PaulS rotten about arm I had to keep saying vein stinging 2nd chemo nurse did slow down but arm painful at times 14days post chemo hope yours improves soon think I am having low days can't see past chemo at moment feel teary but trying to keep cheerful for family moan over av a gud day sunbeams .

[sampeds]

Hi Sunbeams,

I know what you mean about tiredness, I'm pooped this time, I'm chemo 2, day 14 today and feel fine apart from fatigue, I'm having a pj day, all day 😀,,,

PaulS it's that communication breakdown again isn't it, and the different things we get told, it's so frustrating and unnecessary, hope the heat pads helped. I got quite a sharp pain during my last dose and the nurse said she'd gone to fast with the red E drug, she stopped for ten minutes letting the saline flush through,, but I'm feeling wary about the next one,, I so wish I had the picc fitted but I'm sure it'll be fine, PMA and all that 😁

Pam I think we'll be here for a good few months yet, I've got 3 weeks radiotherapy, if all goes to plan that's in jan/feb,, and I think it'll be good to have this support for after we've all finished, whenever that may be, so don't worry😃 xxxx

I'm going down to make a bacon and egg sandwich with a pint of tea👍,,, then back to bed,, good thing about having a teenager, she's quite happy to have a day of rest!!!

Take care ladies, lot of love xxx Sam

[Whitfield]

Oh PaulS what has happened to you sounds terrible. Hope the arm is a bit better. Complain next time you go and tell the nurse to take her time. Pam x


All Sunbeamers
I've only just been able to access my info out as I've have a few visitors!
The type of chemo Tax I'm going to have is Paclitaxel so do anyone have any info on this type.

Although I'm in the Sep group I'm slightly out of kilter with most of you as I'm having my chemo before the opp and am now worrying you guys will be finished by then and my support group and on line friend gone.

PX

[PaulS]

So, called the helpline yesterday about my arm. They could not understand why the nurse at the surgery didn't just get a doctor. Told me I would need to be seen and hospital would call me back. They did - twice - and was told to use a heated pad or hot water bottle as veins hard and engorged. Seems a bit better today. I am sure this has happened because the nurse put the drugs in so quickly compared to the first time. I too am completely knackered today and kept dozing off! Don't feel too ill just really 'off' if you know what I mean. Off to bed soon and hope my head is clear tomorrow. Have a good evening Sunbeams. P xx

[knackeredNess]

My goodness I'm feeling sleepy today! I'm taking no chances and popping every pill I have this time round, so I suspect that's why.

I have been wondering about Rachael too and hoping everything's OK.

Wishing everyone a happy weekend! Ness xx

[sampeds]

Evening ladies! Friday night has lost it's excitement somewhat since I've stopped working lol, all the days seem to meld into one!

Anna glad you're feeling good and I love yours and everyone's posts on here, really is a great support network, and I agree about the texting on here, apart from short posts I write mine in notes, and flick back to this page, cos it drives me nuts keep scrolling up and down as memory shot on chemo and can't remember who wrote what😜,, then I copy and paste it 😊,

Well done Ness on another one ticked off! Hope Emend is as great for you as it is for me, bloody ridiculous you have to suffer before it's given!! Have a good rest and keep drinking water,, flush that poison through ASAP!!

I hope your arm is ok PaulS, and the rest of you obviously!

Hope Rachaelfay is ok, she's not been on for a while, so I'm going with no news is good news there!

Hi char10! Your post randomly popped up earlier and I didn't see it, I wish I had a picc line, my hospital don't do them as standard, and I know what you mean about the cold head and ears, I have a hat and a little fleece blanket tied around my head at night 😂,, any pretence at sexy went with the hair 😑,,,

I've got right into Masterchef Australia this week, much more entertaining than ours, and no Gregg Wallace 😜,,, have a lovely weekend Sunbeams xxx Sam

[knackeredNess]

Hello all, back from my second FEC, and all quiet and calm in the chemo room today! I was quite surprised to be given Emend this time, so will be interesting to see how it compares. Apparently here you are only allowed it once you have actually been sick the first time round!! There was a lovely lady opposite me who looked really beautiful and serene with no hair, who told me she thought I was brave for using the cold cap. Ha! There was me thinking it was the other way round and that it was my lack of bravery that was causing me to self inflict the torture.

Feeling dodgy, great excuse to be in dressing gown and pjs and 6 o'clock 🙂

Stay well everyone xxx

[Havingkittens]

 Hello me again, I seem to have verbal diarrhoea (better than the other sort...) I'm on FEC 75, bit of a lightweight compared with some of you, and I don't think severity of SEs is dose-dependent. No idea what my white cell count is yet, FEC it again next Thursday, so feeling like I'm on the 'home run' in a dreading sort of way. As long as  the stuff is working, and clearly our SEs show that it is. Ps I too find it strange typing on this forum - apparently I just typed 'tits' when honestly I didn't ... cheerio. Kittens.  

[Havingkittens]

Goodenss Beamites, how busy you have been -  juggling gasmen, thrushes, slumps and turbans, not to mention making hundreds of litres of soup, moving house, having your picc lines hoovered out and getting lots of lovely chemo. Congrats to all of you! Glad no one's SEs are too bad right now, long may it continue. PaulS - are you recovered from the awful scene in the chemo suite? Mine has no signal/wifi (hurrah), as the diagnostics are lead-lined on the floor below. Also, I'm in the 'ladies corner' where the Paxman cap machines are fitted, so fewer lions roaring about the place (just us moth-eaten lionesses). Love to you all, and keep it up! Love Anna.

[sampeds]

Just did a quick google, taxotere and taxol are different drugs but with similar effects xxx

[sampeds]

No Pam, taxotere( sometimes called docetaxol),,, I don't know if taxol is another name for it? Or a different cocktail?

[Whitfield]

Sampeds - are you referring to Taxol whe saying T?

[sampeds]

Ps my lymphodema has gone now, seemed to go the more I excercised,, so fingers crossed for you!! Xxx

[sampeds]

I'm FEC100 Peegee, like you I'm feeling pretty good, hope it stays that way, but after reading the August thread it seems the 2nd half with the T is a different set of side effects, but again it seems half are suffering and half not as bad,, I'm off for a day of shopping and eating with daughter who has a day off,, hope you all have a good day lovely ladies xxx Sam

[Peegee]

Btw, those on FEC, is anyone else on FEC100? I wonder if the SEs are worse than FEC80 etc, or if we're all facing similar. Sounds like we're all fairly similar so far.

[Peegee]

Hi Beams (!)

Day 9 of FEC2 and feeling pretty good. Have felt good since day 7. My GP asked to see me and met her yesterday. She just wanted to see how I was as I hadn't been back since first examination and referral to the breast clinic in July. She said I was doing great and that I could start exercising properly (9 weeks since double mastectomy and full node clearance). I'm very mindful of the risk of lymphodema though and nervous about injuring my arm. But the new bingo wing I've acquired since surgery is unwelcome, and what with the PICC on the other side, my arms are strangers. I'm just glad it's winter now!

Amazing scenes in the Edinburgh chemo unit, my goodness! Sam, good point about the wifi, my unit doesn't have it either. I'm at Southend chemo unit btw.

No plans today, and have jolly well popped myself back to bed for a wee while. Laptop, iPad, phone, pillows, tea. Yay!

Keep beaming girls, winter is coming*.
xx

(*That's a GoT ref!!)

[1852]

Soup sounds lovely Sam but think pam ,s slump sounds good I think all our mistakes are great long may they remain to cheer us all up oops don't mean chemo to go on forever hope Everyone as a good day x den

[Emma2468]

Ha, I think Game of Thrones is one of those love it or hate it things, although once you get into it its hard to quit....and before you know it you spend your days researching the most authentic way to replicate a northerners cloak!

Pam, if it makes you feel any better for some reason my spelling/typing abilities have gone completely out of the window this time round, and I don't think its predictive text fault! Was writing an email to an member of staff about working cover and even referred to 'half term' as 'half chemo' which doesn't sound quite as fun! Hopefully brain will sort itself out before I head back to work next week, although might get away with it with preschoolers! Emma xx

[Whitfield]

Must try harder with so many teachers using the forum. Normal typing has gone out of the window with this new IPad.

I'm sure I'll do many more....