Starting chemo in August 2012

[Swoot]

You're right about that - not sure what the registrar, bride or groom would have said! I just used eye shadow for my eyebrows, as an eyeliner looked too harsh. No one said anything, so it must have looked ok.

I don't know what type of surgery I am having yet either! I've been referred back to my surgeon by my onc, but won't get an appointment with him until they know I'm doing ok after my final chemo. I don't think I'll be having surgery this side of Christmas, as the onc told me they normally like to wait 3-4 weeks after the last chemo which makes it the week before or of Christmas and I'm guessing they won't be operating then. Half of me wants a date and the other haLf doesn't. Thanks for confirming what I'd suspected, that it will be easier than horrid chemo xx

[Sika]

Thanks for the reassurances.
Swoop, thank goodness you missed the register (and lucky it wasn't a nose bleed)! Good to hear about the eyelash and eyebrow success! What did you use for the eyebrows? I know you have probably said already, but I really can't remember anything.
Ive just turned 36. I have seen the thread about the Facebook page, but I don't like Facebook and I don't trust Facebook's privacy and security measures...It's a shame people don't just use the website
Dont know what kind of surgery you are having but I've had a mastectomy and it is way easier than chemo! Still scary though.

[Swoot]

By the way, I'm not sure if other young ladies read the Younger Women section of this website, but there is a Facebook page that you can join if you're interested. Have a look here http://www.breastcancercare.org.uk/community/forums/younger-women/facebook-network-younger-women-diagnosed-breast-cancer xx

[Swoot]

Hi All, just wanted to let you know that the false eyelashes looked good at the wedding I went to as did the 'painted on' eyebrows. My pesky runny nose nearly got me in to trouble though as I was a witness and when I bent over to sign the register it promptly dripped - only just missing the register! Thanks for the eyelash tips 🙂


@Sika I don't know how old you are, but I am 35 and chemo is the hardest thing I have ever had to do. It plays havoc with my emotions, feelings, ability and body. I think we all suffer in different ways, for example this week I keep on having nose bleeds, just when I'm standing talking to people. I think it's another drippy nose situation, but it's a big red drip that stains the carpet and won't stop for a while. I haven't suffered from high temperatures or particularly low neuts, but I ache dreadfully - even when I'm just lying in bed, and my head is a mess after Tax. However, I have my husband, parents, sister and brother to talk to about it all and I think that helps me through. It's my last Tax next week and I can't wait, but I am also dreading it because next for me is surgery and I don't really know what to expect from that at all. At least with the chemo I know I'll feel pants!

Xx

[mandyj]

Sika don't worry about the reduced dose. They give everyone the standard dose first and see how you react!! I had it reduced and it has been more bearable this time around. The dose is then what your body can handle. I really felt like I had been poisoned with the first dose and it was terrifying. This time I know my body can cope a bit better with it. I don't think it is the lesser dose that puts you at risk of BC not being killed off, I think that it is the 3 week cycle that is important. Giving your body just enough chance to get normal enough to withstand the next dose. Any delay would allow those little rogue cancer cells to start growing again. The research has obviously shown that for most people 6 doses is enough, although never a guarantee.

[Sika]

So now I am ruminating ... What if I am just being 'weak' and moaning too much? Isn't it normal to suffer on tax, and I should just deal with it? I don't actually want a dose reduction. I want as much as they can give me to prevent this thing spreading and/or coming back. I know what I would say to myself ... It's the listening to myself that is hard, the scared irrational me is the only one listening right now.

He said I shouldn't be so sensitive to tax as I am 'young and healthy'. So, to him I am a mystery/moaner. But, as I have tried to tell them from the outset, I didn't feel at all healthy before my diagnosis. I have been back and forth to the gp for years with various symptoms with no explanation. The best guess seemed to be chronic fatigue/ ME. But, I guess they see poor health as being morextreme than that .. I don't know. I'm worrying, meh. I feel like I have failed in some way (I know it's not true ... But, still.)

[Sika]

Mandy, my ear aches a little with the first gcsf shot which makes all the muscles in my neck, throat and face hurt - but not as severely as your pain seems to be. I'm wondering if you can request stronger painkillers? I think if the pain is keeping you awake, it needs managing in some way. That's my theory anyway - I want them to give me all they've got!
Luvvie, good to hear you are coming out the other side of the Tax torment ... hope you've got the little things done and your legs are back under your control! I loved your alternative response to 'how-are-you' enquiries! The sheer number of things that make it especially complicated to give an answer. But, yeah, you just can't really explain any of this - unless you had a really long time, and someone *really did* want to know how you are feeling. Usually, they don't really want to know. I know I would love to 'tell' - not to complain or get sympathy, but just for my own sake.

I'm increasingly amazed at the regularity of the 'you look well' comment. What purpose does it serve? I know it's not true - unless they expected me to turn up scarfless with a shocking white stubbled head, no make-up, puss-y sores all over my face, limping, blood pouring out my nose .. or what ever. The truth is I look pretty horrible, but even if someone genuinely did think I looked well, can't see how that is relevant. You don't normally say such things to people. It suggests some disconnect between how you claim to feel and what the world sees.

What I did love was when someone said 'oh you look well, it's good, you looked really awful last week'!! brilliant, honest. 'Last week' had been only day 10 or something, and, yes, I was much greyer then.

Saw the onc this morning. After the appt being an hour late, I was ready to use up as much time as I needed - and I did have a very long meeting with him and he listened - for the most part. There were several times when he cut off the end of my sentence and didn't let me finish ... but I think that's just 'how he is' and there's not much can be done about it. This time, instead of getting upset, I just kept repeating stuff he had talked over. His phone rang once - he got it out to see who it was but didn't answer it. he didn't look at it when a text sound went, so that is an improvement. Maybe he does use it like other doctors use pagers or something.

Anyway, this time he seemed to 'hear' things he has ignored in the past. So he was 'surprised' that I used oromorph to manage my Tax/GCSF pain, and that didn't really even help. It also seemed like my fatigue and breathlessness is beyond what is expected. He said that the emotional/psyc stuff could be part of a crash after the steroids (like you guys said!). So, the upshot is that my dose is being reduced (yay because I may not feel awful, but boo because what if the reduced dose is not enough to kill any stray cells, etc etc ... !) and I am taking a reduced steroid dose as well. Oh, I'm HER2 negative too. I had a chest xray to check it's okay, but it sounded alright. And, he said I should have gone back to the hospital when the antibiotics didn't lead to a drop in temp. No real explanation for my ongoing low temp and occasional spikes - he thinks it is probably a virus.

This is all so boring, sorry to you all ... it helps me just to 'report' all this stuff. Hope you don't mind.

He is writing to my surgeon to remind her to make an appt to see me about more surgery - the axillary node clearance. He said it should be 4/5 weeks which worried me as I want a 'normalish' Christmas! I won't be able to drive to shops for gifts and food, or lift oven trays or anything if I am recovering from surgery! Boxing day would be fine, but I just want a bit of time when I am not Tax-ed and not post-surgery ... He said i could request this, but he did seem to imply that haste was best. Which made me slightly uneasy ... I feel very much like the cancer is gone or at least dormant, but his reaction reminded me that those hardy, well protected lymph nodes could still be infected, spreading, and so on ...

Hugs to all !!

[pesteringpixie]

Hi Ladies

Juat popping in from the April thread to wish you all well as your treatment progresses.

earlier in the year some of you were generous enough to support me in my fund raising ventures for Cancer Research by buying my Pixies Happy Bags. Well today I have launched Pixies Christmas sacks. Available for 4 weeks only - they are gorgeous and every penny goes direct to cancer research UK.

They make lovely stocking fillers, can hang on a tree or could be sent in lieu of xmas cards. You can find more by googling me under Pixies Happy Bags or sending me a message for the link. (moderators won't let me put a link on here)

Since June this year I have raised £5000 through selling these little bags and hope I can make it £600 by the end of the year.

Warm wishes

Pixie xx

[mandyj]

Ladies, can I ask, do any of you get ear ache after your Tax doses. I seem to get a sore throat, moreso on the left side and then it develops into a sharp ear ache which gets worse when I lie down. Sleeping is a nightare and painkillers do nothing! I mentioned it to ONC after last dose and he said nothing but reduced my dose. I have it again this time and it is awful. To be honest I am wondering if it is the GCSF injections that cause it rather than the Tax.
mandyj.xx

[Luvvie66]

Hi Ladies,
its not getting any easier is it:-(


Mandymid, you must feel so frustrated. I'm not sure there is anything you can do to boost white blood cells...... I recall you're having the 7 injection regime.... I'm having just one jab of Neulasta, which has done the trick for me, so it doesn't seem to follow that 'more is best'.


I think we are just all individual and we all react differently to this poison. For me the thing that's all over the place is my liver enzymes..... They were behaving this time around, but previously they were very high. Again, apart, from not getting blind drunk, I wasn't sure what I could do to actually help,things. That's the worst feeling isn't it, that you're so out of control. Especially if you're a control freak like me.


Swoot and June22, I've been lucky and still,have some nose hair, lashes and eyebrows. Your descriptions of runny noses and eyes did make me smile. At least we CAN still smile, we must make such an attractive bunch eh!?


Sika, I'm glad you're feeling a bit brighter. Tax is horrid. I find the worst thing with it is, that cannot articulate how I feel.
With FEC, I was vomitting...... It was easy to say I was being sick, I felt dizzy, I was tired....... And my OH and family "got" that.


With TAX the side effects are different and not as easy to describe. I don't want to bore everyone with how I feel all the time because it all sounds a bit pathetic really. I could cope with any one side effect, but when you have them all together it's really tough. When my OH or friends say " how are you feeling" I really want to say


"I can't sleep, I'm jittery, feel dizzy, having hot flushes, am shivering, constipated, aching all over, even my teeth, my tongue is swollen and I can't taste anything, everything smells vile, I can't concentrate, and cannot stop crying...........in fact i am just waiting for tomorrow to come so I feel a bit better...... Except then i'll have diarrhea! "


Just writing it down has made me laugh... it's not about being brave or positive, it's about getting through it in the best way we can, so don't be too hard on yourself.


Im just coming out of my 4th TAX..... Yesterday wasn't a good day.... My legs decided they didn't belong to me, but still wanted to hurt me! Today, I already feel much better (but yes, the tax trots are visiting!) and have lots of little jobs planned. Nothing strenuous, just making some lovely mushroom soup and done some online Christmas shopping:-)


Keep going ladies, one day at a time (as my lovely Nan used to sayxxx)


Luvvie xxxx

PS Sika, ask ALL your questions and take as much time as you need. If you take more time than is allocated to you at your appointment it is because you needed it. Dont leave to room until you are happy that you've got all the information and reassurance you need. Take someone with you if you can, it will help.

[Luvvie66]

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[Sika]

Mandymid, oh you poor thing, how very frustrating! I have no suggestions, but one thing I have wondered is why diffferent people seem to be on different injection regimes (GCSF, neutropen etc) - i.e. some people are on them for 7 days and others (like me) only 5. As I seem to be quite prone to becoming neutropenic, I've wondered why my onc hasn't suggested I have injections for five days. (Probably because I never get to talk to my onc about things!). So, I wondered if you had injections for longer, whether your counts would be up? Actually, I'm assuming you have the injections? I also can't remember the specifics of your regime. As you say you were meant to have your first CMF (which I know nothing about), maybe that will be kinder on your white blood cells? When are you scheduled to have the dose now?
Sara, thanks for popping in, and thanks so much for your encouraging and supportive words. Your post has helped me through my ongoing issues with guilt and shame at not being a 'warrior' who 'kept smiling and stayed strong' through all this. I also welcomed the reminder that some of us do, actually, suffer more than others. No eyelashes after 4 months! I've been wondering how long they take to come back. I'd rather have lashes than hair on my head. I hope yours start to come back very soon!
Swoot, thanks for sharing the running nose story! Will remember to avoid spicy food!
June, I started having the watery eyes, but it's been okay the last couple of days - actually it was worse when I was out - perhaps the air had something to do with it? Interesting theory about the follicles etc! Makes sense anyway. Just on the eyedrops - I'm sure I read or heard somewhere that we should avoid medicated drops ... not sure what type you have, but perhaps check with someone about them? Hope I'm not just imagining that ... I was prescribed basic 'fake tears' when FEC gave me dry achey eyes - no use now though!
Thanks for checking in with me, June. I've been feeling much better than I was. I remain convinced that Tax is responsible for the extremes of my emotional/psychological distress. It has lifted now - I'm not happy, and still a bit anxious, but the world looks entirely different than it did/does in that first week post-Tax. It is all manageable. I'm still not going to take the anti-depressents - I know I still have a long time to go with all this, and the hormone therapy that seems likely will probably mess more with things, so I can always start them later. I am not convinced that GPs always prescribe ADs appropriately, or that ADs are much use in a lot of the instances for which they are used. I don't know if their effect on serotonin can really counter whatever the Tax does to my hormones and brain activity.

I may try ask my onc for sedatives to help me get through the next post-Tax anguish. I just need to get through it. In a way, I kind of miss the blankness that FEC meant for me. There was nothing at all going on in my head for about 10 days each cycle - seems like bliss now, with my noisy mind waking me up and chattering away. I've not yet arranged to talk to someone. I should have done it already, while I can.
Argh - the hot flashes. They wake me up too. And happen all through the day.
This Tax has been easier than the first, I think. Every day, my temp still goes up to 37.5 and stays around there for a few hours, then goes back down in the evening. Since it first went up on day 5 (all the way to 39.1), I've only had 3 days (in a row - days 8-10) when it didn't get to 37.5. I am meant to call them at 37.5, but if I did I'd be in hospital every day! I am intensely curious as to why it keeps going up though - do I have some ongoing infection that is immune to the antibiotics I am given every cycle? Has the chemo messed with my adrenal function? Is it just a chemo side-effect? I know I am not going to be given any answers ... I'm less breathless now - no need to sit down after walking across a room! But, I had to clean the bath tonight and that had me puffing as much as if I'd run 6 miles - I could barely talk, I was that out of breath. So, the answer is clearly - don't clean!
So, last one on Friday. It's great of course, but it is bringing up all sorts of odd feelings and things that I am not sure I can articulate right now.
Seeing the horrible onc on Wednesday. Working on a list of things - a list of all SEs, and a list of questions. I have too much to say and ask though - I know he won't have time for everything. I'm not sure how to manage that ... should I just take as long as I need ... I tend to be very sensitive to 'running out of time' and will probably just not ask things. But, there's important stuff - like, that I don't even know my HER2 status yet!

I'm writing too much again ... must sleep ...

hugs to you all!

[mandymid]

So fed up was due for my first CMF today but wcc and neuts too low to proceed ....again!
Was due to be finished at the beginning of Feb now its going to be more like the end and thats without further delays.
Any suggestions???
Have asked a number of medical friends and the general consensus is nothing you can do, the chemo attacks your bone marrow which produce white cells and thats that, some of us are more affected by it than others.
Im never going to be back to normal! Its starting to drag a bit now and Im not even half way there. Pfffttttt
Mandy xx

[June22]

Sara12 - 4 months on and still no eyelashes regrowing! Oh dear... poor you.
It isn't the end of the world of course, but I do hope they regrow eventually for you, and for the rest of us!

All the best,
June22

[sara12]

June, you're probably right. I only got the runny eyes with TAX rather than FEC.... but the onc prescribed ointment without even looking at my eyes, anyway. I lost all my eyelashes on TAX, and, nearly 4 months after finishing chemo, there's no sign of regrowth. Am having to get to be a dab hand with eyeliner, which I've never used before! Also got a runny nose and occasional nose-bleeds, but again that was on TAX rather than FEC.

Sara x

[June22]

Sara12 - thanks for the eye thing. Yes, I have mentioned it to my Oncologist as i read it was a side effect, but he said it wasn't common on FEC and he couldn't prescribe anything as there didn't seem to be any inner eyelid irritation... so I got my own eyedrops to ease the eyes and they help, but the tears keep on running!
What I meant about the eyelash bit was that the runny eyes co-incided with my eyelashes dropping out, so I think it is the chemo reaching the lash folicles that's causing the irritation. A bit like when the scalp becomes tender when your hair starts to fall. Just my theory.

I'll mention it again when I next see my Dr... I might be still wiping my eyes and nose then anyway so he can see for himself 🙂

Have lovely weekends everyone... with no side effects - that is an order !
June 22

[sara12]

Hi - I'm just popping in to say hello from the March thread.

Sika - just wanted to say you are not a whinger/moaner and it's not your fault that you have been hit hard by SEs. I had 6 cycles of FEC-T and suffered practically every SE known to man, and then some - particularly on TAX. I have read some posts recently elsewhere from people who have been lucky enough not to suffer SEs who imply that this is simply because they've had a 'positive attitude'. Well, I'm afraid that chemo effects seem to be random - some people don't get SEs (eg I wasn't sick at all on FEC) and others are knocked for six - it has nothing to do with 'attitude'! So don't blame yourself. I did have a 'positive attitude' all through - and by that I mean that wherever possible I got on with my life as normal and tried not to let the chemo prevent me from doing things. I live alone, so had to keep doing everything for myself anyway. Nevertheless I felt very ill on TAX and sometimes it just wasn't possible to do anything for a few days each cycle. It's not your fault if you feel ill! Be kind to yourself and rest when you need to.

June, runny eyes are a common SE of the chemo - not to do with lack of eyelashes. Your onc can prescribe eye drops or ointment to help with that.

Anyway - good luck to you all - not long to go to the end of chemo now. Thankfully the memories of all the nasty SEs fade pretty quickly once it's over!

Sara x

[June22]

Sika - I wondered how you were doing?
Is life a little less horrible for you now?
I do hope you got to talk with someone who could offer some solutions.
Just one more session to go... you can do it.

Take care,
June22

[June22]

Swoot - I can relate to the drippy nose!
Since my eyelashes have decided to come out, my eyes have been irritated and producing excess tears. That also seems to trigger a runny nose situation so I look like I am blubbering! I don't know which to wipe first, my eyes or my dew drop nose!
Oh the joys of chemo are unending....

June22

[jackster50]

My best friend, my beautiful mummy died at 11.45 today, just as I was waking up. i killed her and i hope and pray that i get every recurrence going.

[Swoot]

Hi everyone, I seem to have emerged out of the tax fog of my 5th chemo, 2nd tax and first herceptin... I'm on 7 doses of GCSF this time, and feeling the ache!

I have a little funny to share with you: last night I went out on a work do to a Thai restaurant. It started straight after work, so I thought I'd show my face as it wasn't too late. Some of the dishes were quite spicy, and my nose started to run and run... Those of you who have lost your nose hair will know what that can be like!! Note to self, don't eat spicy food while on chemo - it can get messy 😉

Hope all you girls are doing ok, it seems like some of us are close to the end, and for those who have a few more sessions to go, we'll still be here to support you.

Xx

[Sika]

mandyj and sarah, I am sending lots of anti-Tax-side-effect vibes your way. I hope that any pain, discomfort, fogginess and wobbliness is absent or minimal and well-managed by meds. Just one more to go!!

[Luvvie66]

Hi Mandyj,
Fingers crossed the side effects are kinder to you this time.

I had Chemo#5, TAX#4 yesterday, so I'm sat waiting in anticipation too.

Only one more to go, almost at that finish line, though eh!

Take care (((hugs)))
Sarah xx

[mandyj]

Sorry, what I meant was chemo 5 but Tax 2. The muddled mind has started already!!

[mandyj]

Hi Ladies
Tax no5 went in today. Had a 20% reduction in dose as I suffered such toxicity from it last time. Nurses do say that it may have been the GCSF injections that didn't help with the chest pains, so I will soon find out when I start them on Friday! Just one more to go, what a relief. Cannot wait for all this to end.
Hope you are all feeling well today.
Love and hugs
mandyj.xxx

[June22]

Sika, I can't help but feel you do seem to keep punishing yourself for some reason. You don't need to do that - this treatment is enough to feel like punishment on its own!
If the Dr thought the antidepressants would help you, why not start them whilst you are feeling a bit brighter. Then, by the time your next chemo dose is due you will be in a better state to cope with it. There is still a way to go through all this treatment even after your last chemo dose. Long term doesn't mean years... it can mean months.
Please phone the helpline nurses on the forum and talk with them. They can listen and advise according to your personal needs. You deserve some help - it is there waiting for you... accept it and then you will be in a better position to help others in return.
Help offered is genuine from people/friends/loved ones who want to lighten your load. I know it isn't always easy to accept help, but think how you would feel in the situation of offering help to someone who refused it! People want to help - let them have the opportunity, thank them for their care, and return the favour along the line when you are well again.
Take care, and be kinder to yourself. This is a hard journey we are on.
June22

[Sika]

Victoria, good luck for tomorrow. I hope you get a decent sleep tonight. Thanks for the hug, and please thank Bernard for the lick! I laughed about the pants struggle - so true. And so frustrating when you used to do such intensive and difficult things. The loss of competence is so difficult to handle. I am so sorry to hear about the battery acid diarrhoea, sounds horrendous. The proposed way of managing the problem doesn't sound At all pleasant!

Thanks Mandymid for the support, and sharing your experiences. I am pleased to hear you are no longer suffering in the Same way. You are right about the importance of accepting help ... I just wish doing so was easier.

I went to see the GP who, of course, gave me a script fOr antidepressants. I haven't started them though, and don't think I will. I really don't want another chemical in my brain and confusing side effects of the pills with chemo side effects. They will take at least twoweeks to work. Antidepressants are a long term thing, when what I need is something to stop the emotional and psychological effects of chemo on the days when they literally disable me. Today (day 12) I actually feel a bit better both physically and emotionally. Not happy or anything, but able to get on with what I need to do and not overcome by my feelings. Closer to normal - or as normal as I will ever be during this treatment I guess. I think that Tax just has this effect on my, and it wears off during the second week. I cried for three days last tax cycle, but I was in hospital anyway so it didn't really matter as I had little option but to just sit in bed. Anyway, let's see how this 'feeling better' thing goes. If the complete distress and terror and misery feelings come back, then, well maybe I need to do something about it. Actually, I am sure I would benefit from talking to someone about stuff anyway. But if they don't come back, then I should prepare myself forfeeling equally horrible in my next (and last!!) cycle ...

Hope everyone is doing okay!

[TigersGirlie]

Hi Sika

An sorry you are poorly am giving you a virtual hug and Bernard my dog is giving you a big lick. See my picture. I've had wobbles but yes I think the drugs don't help, I used to be able to teach back to back sessions in emergency vet nursing, now I struggle on what pants to put on in the morning. It will return when were finish poisoning ourselves, don't feel your alone though, were all here to help each other, also the Macmillan, or your breast care nurse?
Remember though are journeys are all individual, everyone is different, I have the most awful battery acid type diarrhoea a week post, have had done very interesting suggestions to help lol, personally I don't Like the idea of sitting in a bucket of cold water pooing on myself, currently laughing to myself.
June hope you feel better soon, always tell your chemo nurse when poorly as they do try to help.

Not looking forward to Wed

Much love to all

Victoria xxxx

[mandymid]

Hi Sika
I would definately get some help, counselling, or your GP or whatever it takes. I am waiting to see the cancer support service at my local hospital which I accessed via Mcmillan. When I went to the McMillan guy I spent the first part of the session been able to say very little at all and I felt a real twit! He aske dme to introduce myself after he had done his bit and I just couldnt get my words out. I just sobbed and sobbed.
I am a fiecely independant person and like you struggle to access help but actually with this I havent struggled to admit to myself or others that I need help. As I have said before on here my sister has been through this too and one of her biggest bits of advice for me was dont keep refusing help, as she knew I would do. She thinks we should all make it easy as possible for ourselves and of course what we all need to do to get through this will be massively individual.
Saying all that I have calmed down quite a bit now and I dont feel I am suffering like you are. Doing it on your own must be very very difficult and I feel for you.
This whole cancer and chemo thing is not a competition and we will all get through it the best we can and deal with it in different ways. All our personal circumstances are different too which makes such a difference.
June I hope th side effects are passing now.
Swoot get those eyelashes on. The beautician did a nice job of filling in the gaps for me! I didnt pick particularly long ones as I have before, bit more natural, but not my current half an eyelash current naturall! I managed the wedding yesterday with out tripping over them which was a bonus!!
Take care all
Mandy x

[Sika]

Thank you all, and I am sorry for making such a fuss. I am just being a stupid drama queen with too much self-pity going on.

I got up today - not dressed though. Tried to do some things, but i really do get massively out of breath from doing things that don't really involve much physical exertion. Perhaps tomorrow I will just make myself walk fast for 20 mins to prove to myself that I am just being a wuss and even if my heart races, nothing will happen to me. My daughter ended the evening by yelling and swearing at me (because I had asked her to do some cleaning she had been putting off since last weekend). Too many tears today.

I will try do something about it tomorrow. I really struggle to receive help of any sort. I find it hard to manage others kindness. I cancelled my last reflexology sessions because Icouldn't handle that the woman would go so far out of her way and Come to my house and do that for me for free while I just lay there. I felt like I wasn't ill enough to deserve it or poor enough to be getting it for free, and paranoid that she thought I was lazy and rude. I felt ashamed. I know these aren't how I should feel, but it is how I felt. And the same applies for any sort of support I could get. But I know I have to seek it, for my daughter at least, but also because I can't see how I can carry on like this.

The group that organised the reflexology had mentioned that they could arrangecounselling. At the time, the woman who came to see me said I didn't seem like I needed that at all. I guess I was really quite okay at the beginning of this. Look what it has done to me!?! But is it side-effects? Do they even know? Given tht chemo poisons the whole body (and I am either a chronic whinger or suffer physically more than some from these poisons), could itactually mess with brain cells too? Disable parts of the emotional circuitry? Or do they just assume that any depression and anxiety is based n the diagnosis and treatmentdisrupting our lives? Could steroids play a role now - a week after I stopped them?


Argh I am beginning to waffle now ... I want to sleep. If only my mind would be quiet. I will ring someone tomorrow. Thank you, all you beautiful, strong women. I am sending virtual hugs and soothing vibes to you all. I really hope to be cheering you all on much more soon. June, I hope the nausea is better - can you get any better anti- sickness pills? The usual ones didn't work for me - not even emend. But, then they gave me one starting with Levi... Something, and it worked magically.

[mandyj]

Sika, as you know I had a wobbly recently so its OK for you to have yours, have as many as you like. Chemo is the hardest thing I have ever had to do and I am sure all of us will say the same. You have had to be extra strong as you have been in and out of hospital throughout all of this. The fact that you still turn up for your next session means you are a very strong lady. I don't know how you cope doing it alone, I have total respect for you. I too believe the steroids have alot to answer for. I have had high dose steroids in the past for my MS relapses and I turn into an emotional wreck.
Do speak to your GP and take something to help you. You can always come off it when you get your life back in your own hands.
Sending you huge hugs.
mandyj.xxx

[Luvvie66]

Hi Sika, I felt I had to give you a virtual (((hug))).

I echo everything June has said. The drugs have a lot to answer for. I recognise how you feel as its exactly how I feel on days 3&4 of my chemo cycle - the days my steroids are reducing. Thankfully though, I start to feel a bit more like me after that and its then hard to recognise that it was ME feeling so low just a couple of days before.

It must be awful for you to be feeling so low more of the time. You really should talk to someone. I'm not medically trained but the Macmillan nurses are and will be able to listen and advise you on what is best.

None of us like asking for, or accepting, help much.... but sometimes we have to to make sure that we get through things for ourselves and those closest to us.

Like June says, we are getting ever closer to the finish line. But please speak to someone first.

Big hugs, and let us know how you get on xxxxxxxxx

[Lucy_BCC]

Hi Sika

I am sorry to read that you are having such a difficult time, do call our helpline for a listening ear, our team can also suggest other support ideas to you which may help such as our 'One to one' support which you can read more about here:

http://www.breastcancercare.org.uk/breast-cancer-services/someone-talk/one-one-support

0808 800 6000 weekdays 9-5 and Sat 10-2

Take care

Lucy

[June22]

Hello everyone. I'm afraid I haven't managed to keep up with the conversations as I have been in chemo fog for the last few days, and trying not to vomit! I do read all the messages and intend to respond, but then forget! Sorry... I hope you all are feeling better than when messages were posted, and that the sun is shining for you today.

Sika... I must respond to your message as you sound so very much in need of support.
I am sure it is all the medication and chemo adding to your emotional rollercoaster and stresses. The steroids made me feel really bad so mine have been reduced considerably - I now only take them on the day of chemo, and the following day. The Steroids made my mind ramble over and over all the silly little things that were worrying me, including bills to pay, things that needed doing. I was exhausted, and couldn't sleep, but nor could I focus on doing anything. That sort of side effect isn't at all helpful when you need to rest.
I do think you need to talk with someone who can appreciate your situation. Please consider phoning one of the nurses on this forum.
They aren't available on Sunday, but please give them a ring on Monday to give yourself some much needed reassurance. They may know of groups in your area that can also support you with a visit or something similar where you can meet others. http://www.breastcancercare.org.uk/breast-cancer-services/ask-us-your-questions/helpline

And maybe do go and see the nice Dr. Some antidepressant meds might not be a bad idea... and they don't all take that long to begin working. There is still a way to go through all this even after your last chemo, so you might well benefit from some medication help to bring your emotional levels back to normal so that you feel more in control again.
You have done so well to get so far through this. Isn't there just one more session to go? Wow! We will cheer you through that one 🙂 And when you come through the other side and feel like yourself again, you can cheer us along through ours. Mine will continue into January. By then, I know I will probably be feeling pretty much like you have at times.
Thankfully I don't have children to look after, and I have someone at home to care for me. Doing this on your own isn't something anyone should have to consider - we all need support at such a difficult time.

Be kind to yourself today and rest plenty, but do try to get out of bed and get dressed in some comfy clothes. I find I feel better if I refuse to be a bed-patient, and at least sit downstairs... even if I can't get stuck into cleaning the house or doing the washing! I put on an old film DVD, and just drift in and out of watching it. It is like a background comfort.

Thinking of you and sending you positive vibes. No problem for telling us how you really feel on the forum... that is what it is for. 🙂

June22

[Sika]

Swoot, hope the tax and herceptin went okay and you're doing Alright. steroids and anxiety kept me up most of the night before my last tax. The lowest my neuts have been pre-chemo is 1.4 - the doc had to sign off on me going ahead as it was under 1.5. I am sure I have heard others say they just can't be under 1?

Mandyj the androgynous corpse description made me laugh! Very accurate for me too. I am sure my skin is actually grey. At the beginning of the treatment my skin was actually better than ever - some colour in it, and chemo actually got rid of the acne/face boils that have plagued me for years. Skin is still clear, just sallow. Grey. Whathin didn't realise about the eyebrow and lash thing was that they disappear in a partial way - I look like someone has got carried away with the tweezers. Just so messy and patchy. And the silly little stubby lashes, with a big gap in them. I just try not to look. And I refuse to do the whole makeup thing for the general public ... It is hard enough to get up and get dressed. If I look like a cancer patient, well, that's because I am a cancer patient and it is not my responsibility to help you avoid uncomfortable feelings.

Also interested in hearing how you go with the false lashes - particularly if you still have silly shortstubby ones at the saMe time. They sound to be fiddly? Luvvie I thought the same thing on Halloween, I didn't need a costume. But, then! I heard kids outside but none knocked on my door - I am sure they were told to avoid me!

Mandymid, funny about your partner trying to get a smaller pot!

Yay for chemo- free December, luvvie! We are all getting towards the end of this, aren't we? Yay for us.

You have all cheered me up with your posts and I want to write a cheery post, but I feel the need to whine and moan and throw my toys on floor. I am really really miserable and anxious and this is scaring me. I can't 'do' anything. I can't read, watch telly, clean, knit, anything. I cant be bothered to get dressed. I cant eat properly. I just want to stay in bed. My nerves at frayed to the point that I am always on the edge and irritable. I can't sleep - when I do I wake up every hour. I am paranoid. I don't think, physically, I am in a condition that requires me to be in bed. I cant walk far, but as of the last couple of days I can get around the house without getting completely out of breath.

I know chemo makes us feel like shit, but this feels more intense. The anxiety is awful, and I am obsessing about work things. About Money stuff. About TriviaL things. Funnily enough, the one thing i am fine about is the possibility of this coming back/spreading/killing me. ). I nearly broke in the supermarket today. I shouldn't have gone in, but the effort of all of it was just physically, psychologically and emotionally too hard.

But plenty don't have this with chemo. I keep reading about people who are like 'oh it's fine, I felt a bit sick and was tired, but it isn't as bad as people say'. I don't get it. It makes me feel like I am just a whinger and moaner, wallowing in self-pity. This is what I get for not 'thinking positive'. I brought this on myself and if I only made the effort I would be up and out of bed (with proper clothes and makeup on) and walking for Miles every day and going to work and cooking proper dinners for my daughter and keeping the house clean.
I don't know what way is up anymore.
Blah blah, sorry, just had to vent. I should go see the nice gp- maybe I can get some sort of sedative.

[Luvvie66]

Hi Ladies,

You all made me smile with the corpse description. I didn't need to dress up for Halloween this year, my natural look was very effective. I think word had got out that they're was a real life horror story at our house because we didn't have any trick or treaters!!! Such a shame because now I have to 'dispose' of all the chocolate I bought. Ha ha;-)

Even though I'm fair skinned and have blonde hair, I have dark eyebrows, hence they are a very prominent feature. I was more worried about losing them than I was about losing my hair. They have thinned a lot, but are hanging in there. My bottom lashes have thinned, but the top ones (apart from a small gap in the left) are still in place. I've two more Tax to go, so I'm hoping they hang in there. If not, I'm interested to know which false eyelashes you ladies have tried - are they the individual salon ones, or ones you can buy in Boots?

Swoot, Dex is terrible for keeping me awake too. I'm dreading next Tuesday when I start on it again.... It's such a large dose and I always come down to earth with a big tearful bump when the dose reduces on day 3......

Glad to hear we are all getting through this, I thought today, that if all goes to plan, my last chemo session is THiS month 🙂

Sarah xxxxx

[TigersGirlie]

Hi all,

Swoot I have heard that the dex keeps you awake at night. Am with you sporting the corpse look lol
Good description Mandyj I'm sure we will look less pale soon.
Mandymid I was 30 at diagnosis, was given same info in regards to waiting, but my bcn said to be ready for them not too return because if the aggressive treatment I was given. Its prob a breath of fresh air with your young boy as he doesn't understand so makes you carry on.

I saw someone with false eyelashes the other day and they looked really good.
Hilariously we make a joke in my house as I lost my hair but my Ginger eyelashes and brows did not fall out. Strong little monsters lol.
Than you for well wishes and wish well to everyone

Much love Victoria x

[mandymid]

Swoot I will let you know about the false ones!

[Swoot]

I know I shouldn't laugh, but love the androgynous corpse description. Sums it up well!! I'm going to practise drawing eyebrows in and look for some good false eyelashes so that I look a bit better at a wedding we're off to soon.
Xx

[mandyj]

Soooooo glad to hear that I am not the only one looking pale with bags under my eyes! There was a point early on in treatment where people looked at me in a head scarf and you could see that they were wondering if I was on chemo. Now the man in the charity shop asked me how I was getting on with treatment. I had never met him before!! Even the checkout lady at Sainsbury's yesterday looked at me and said "how are you?" in that familiar tone. My OH says I don't look that bad but I see some androgenous corpse staring back at me in the mirror, perhaps I should stop looking t myself.
Bring on the end of treatment so I can get some colour in my cheeks!!

[mandymid]

Hi all
Swoot the reson my last chemo was delayed was due to low neuts. I even checked mid week and they were 1.4, so no go til above 1.5 as you said. Mine were 1.6 after the 4 weeks so really dragging their feet. I also look very pale with dark rings underneath my eyes. People keep saying I look well and I think thank goodness for makeup! Even resorted to sending my partner for some bare minerals as a top up! I think he thought it was going to be like £3.99 or something, he asked them did they do a smaller pot! . Good luck today.
Victoria, I kept thinking we had a new recruit "Doreen" haha. How old are you? My sister was 35 at diagnosis and her periods have returned now, but advised to wait 5 years following chemo whilst on tamoxifen to think about children. Thankyou for thinking of us with children when you may be faced with having the choice removed from you. I find that very cruel and have a friend in the very same position, who never really wanted any kiddies but now thinking she may have had the choice removed is understandably annoyed. If anything my children keep me going a bit as you cant wallow too much, the youngest one especially as he just doesnt really understand. He kept commenting on the "stand up to cancer " ads though as they were like mummy with no hair.
Sika glad things settled down a bit. I guess over time you may just slow down a bit with the temp taking but were all entitled to a bit of ocd surely?
Take care all
Mandy

[Swoot]

Hi ladies, I hope you're all doing ok. I'm wide awake (have been for hours, grrr) before my 5th Tax and 1st Herceptin - I think it may be the dexamethasone that I'm taking for it as I slept well last night before the pills. Thought I'd just post on here now I've given up trying to sleep! At work both my manager and big boss are worried about me, as they think I look really pale. I'm a bit too proud to tell them that I think it's because both my eyelashes and eyebrows are giving up now so I'm starting to look like something out of Startrek 😉

I wondered if anyone else is on (will be on) Herceptin and how they're finding it? My first loading dose means that I'll be in hospital all day today, so I've packed some books, some work (may earn some brownie points!) and have some friends coming to visit me.

I got my neuts count yesterday and it was 1.24. My onc was happy for me to go ahead with treatment, but I also wondered what the lowest count is that people have had and gone onto gave treatment. For some reason I thought the cut off was 1.5, but it doesn't look like it.

Glad to hear your temp went down Sika - I hope you're feeling better. Also glad to hear you have the support if your nice chemo nurse against your nasty onc, I hope it's made a difference to you to have that support and not think that you're on your own. The craft group sounds like a great idea, I don't know what I've got available like that near me.

Hope you've made it through your 5th without too many SEs Victoria and that your dog is keeping your spirits up. The autocorrect is pretty hopeless isn't it!

Hope everyone else is ok too,

Xx

[TigersGirlie]

Arrrrggghhhhhhh I hate predictive text, predictive translation
Doreen=down!
Probably = probs
Wasn't=want

One day I will post without auto correct on lol

;)

[TigersGirlie]

Hi all,
Sika am glad you managed to get your temp Doreen, hope you make the next treatment with minimal probably, glad your chemo nurse now in side to help.

I think of you all with having children to worry about, it must be so hard but wasn't you to know your always in my thoughts. I just have the dog to think off.
I was told by the onc that I would be most prob left infertile,I think I have accepted this (if you can ever really accept this news)

Anyway, I'm In for number 5 fec100 on Wed not looking forward to it, but have felt pants all way this time so know what's coming.

50days to Christmas ladies

Love and hugs

Victoria xxx

[Sika]

Hmm, I am way too over vigilant. I am meant to contact the hospital if temp reaches 37.5, but I don't feel any symptoms when it reaches that - typically no symptoms until it is 38.3. But I am always curious and couldn't possibly just check once a day ... It is really hard for me to restrain myself to only check once an hour!

Anyway, last nights temp went away - I physically cooled myself down, and eventually it went down to 37.7. But was 39.1 at one point! Crazy it could get that high, then be fine. Tis morning it was 35.5! I was in lots of pain last night too, the funny nervey feeling, which has continued all day. Oromorph isn't being that effective. .

Sian, that is crazy that you were given a live vaccine! I think we can overestimate how much GPs actually know about chemotherapy ... A lesson to always run everything past the chemo unit! Glad you are okay now.

Jackster, hugs to you, and your lovely mum. I hope tax 2 is treating you okay now and you are not too miserable. Do you find the misery much worse on tax? I certainly do. I am in a pit right now. Here's hoping that it is just hormonal and will lift soon. I can't make sense of the menopause aspect of this though as I am still getting regular periods - not having them was meant to be a bonus of treatment! Hot flushes all the same though.

Tigers, thanks for sharing the lovely poem ... And I do love the phrase "hike your strive effects"!

I saw my lovely nurse in the chemo ward, who supported me when I was upset about the onc. She said I should tell her straight away if he continues to be awful. I will be more assertive next time and challenge any phone use.

June, I just wanted to thank you for your words about not being isolated. . There is a craft group for people with cancer that I want to go to - have to wait until next session, and hope I am well enough to go.

By the way, I did make it to work. It was actually nice to be there, despite beingkinda surreal being the cancer person out in the world. But, it completely wiped me out to go. Physically and emotionally.

[mandymid]

Sika, I have been admitted once with N.S and I never check my temperature unless I know I need to. Basically I know by how my body reacts to a high temp and recognise the signs (which are shivering, shaking hot and cold etc) and normally when I check it it'll be up. When I went into hospital they commenced IV antibiotics straight away and at no point despite the temp did I feel ill as such. They are trying to prevent whatevers causing the temperature from really getting hold and becoming a proper infection. If you dont recognise within your body when you have a high temp then you should Id say be monitioring your temp as they tell you to and dont feel at all paranoid. If you have an infection normally you will be tachycardic too (high pulse/ heart rate) I could hear my own pulse in my ears!!
Glad the paracetamol helped to reduce the temp but remember thats just masking it really and my advice would have been to go into hospital I think really. Good luck today and take care of yourself.
Let us know how you are getting on
Mandy xx

[smc78]

Sika i forgot to mention that i had shivers too and felt like i couldnt get warm which was the reason i bothered to check my temp in the first place. I put on extra layers to try to warm up but when i rang the chemo ward the guy on the phone said that shivering is your bodys way of trying to cool down and that even though it may be uncomfortable i should take off some layers and sit by an open window or stand by an open door for a few minutes to try to bring it down. As you mentioned the paracetamol isnt working maybe you could try this or even have a cold drink with ice cubes in it. You also try putting a cool flannel on your forehead for a bit. I hope this helps. By the way I completely understand your concerns about wanting to wait untill morning if it means leaving your daughter alone.
Sian x

[Sika]

thank you all for helping me not feel paranoid. temp had gone up to 39. they said i should go in for iv antiobiotics, but up to me. as going in, again, would involve a taxi and leaving my teenage daughter at home alone, i am hoping to wait until morning. paracetomol hasnt brought the temp down. i told them i will go n if it goes to 39.2 ... but i cant sleep through worry. ah,its 38.7 now. good. i wish theyd never discharged me. i guess fever is just how i react to the chemo. going to try sleep now. thanks guys. i will write properly soon. hugs to you all x

[smc78]

Hi Sika
Hope you dont mind but I'm just popping in from the July thread with some advice. I had my very last chemo (3 fec and 3 tax) today but i was admitted to hospital with a raised temp at the weekend. I had a flu jab and a pnumonia jab on fri but by sat night my temp had gone up and when it got to 38 they told me to go in. (this was day 18 of my 5th cycle and 2nd Tax) They took blood and ran some other tests and apart from my temp being up the only other thing they found was my pulse racing a bit. I was given anti biotics and paracetamol and on sunday morn i was expecting to be discharged however the doctor said my pulse was still fast and temp was still just above 37 so she wanted more blood taken to check again for neutropenia but i was ok. My temp got as high as 37.6 sunday aft but after having more paracetamol it went down and stayed down so i got discharged yesterday morning. My point is please dont take it at your own risk. From reading my notes when the nurse left them on the bed it said we have to be given anti biotics within an hour of admittance and neutropenia can develop very quickly and be fatal. You are right that we can be neutropenic at home without knowing but if your temp is going up its better to be safe than sorry and get checked over. Oh and it turned out that i shouldnt have been given the pnumonia injection as its a live vaccine and thats what made me poorly so if any of you get offered it please check with your chemo ward before hand. The flu jab is absoultely fine as it is not live. My oncologist was not impressed that my GP allowed me to have the jab and is going to write to him! Good luck with all your treatment ladies, not much longer to go and you CAN do it!
Sian x

[Luvvie66]

Sitka, just a quick post to say you can't check your temperature too much!

I check mine every other day and every day on days 7 to 10... Or if I feel a bit 'odd'.

Ive been really lucky so far and mine hasn't been above 37.
Chemo just affects our bodies in different ways. My neutrophils have been ok (with Neulasta injection post chemo), but my liver enzymes have been quite high. Just the way my body deals with it, I guess.

Carry on checking your temp, and let the doctors decide if you're ok to be at home or if you're better to be in hospital. As horrid as it is, it might be what you need....... And it won't be long until this horrid chemo is over.

Look after yourself xxxxxx