the "almost at the end of chemo blues" ... or I can't do this anymore!

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Hi anyone/ everyone

I thought I’d start a new thread as I don’t want to blub all over the more chirpy ones and this will hopefully be a few-post wonder …

Well - all I can say is I NOW UNDERSTAND WHAT THEY MEAN …

Quite frankly I’ve had enough … don’t worry I will carry on blah blah blah …

BUT

Now being in the “dip” of cycle 3 (of 4 tax after 4 epi) … it’s getting very very hard on many fronts …

  • first of all the chemo does start to take a real toll and it’s blooming hot here so my days are wasted really - if I do try and do stuff I get tired/ feel really ill
  • I am sick of being in the house
  • we have continued to work throughout which means that I’m also bored of having no fun for the best part of 8 months now (Nov 07)
  • I had a not-very-nice reaction to the last chemo (vomited during and nearly passed out) and so on the one hand I am really looking forward to the last one but on the other I am scared out my wits and getting more worried by the day
  • I am eating for England because I am so hungry on the tax and not surprisingly I am growing - as a consequence I can hardly get in any clothes and look awful - I don’t want to buy more (I know I sound childish)
  • I am looking like a pumpkin - my tummy is huge - in fact I am seriously considering looking at maternity clothes!!! if i buy any
  • we have a visitor from Engand this weekend and I suddenly reaised that my self esteem has fallen through the floor and I really just don’t want to see them - or to put it another way I don’t want them to see me like this - they are glamourous
  • initially I was not looking older … but lately I feel like I am aging a year for every week …every time I look in the mirror I look older … and fatter
  • I am fed up with having the e-coli injections (neupogen) as they make me feel like i’ve got the flu and I have to have 2 s*dding packets -10 days!! this time as 1 is never enough
  • I am still in the closet (and happy to be there) but I can see people looking at me and thinking “what is wrong with her?” not phycsically - but mentally - I think they think Ive lost the plot!!!

I used to read posts of people who would say … I’m nearly at the end and I can’t do this any more and I just wouldn’t understand … well now I do … I’m fed up with waking up to alarm and my first thought being “I don’t feel very well today” - I know I should throw the s*dding alarm out the window but I need to keep the business going … and also work does somehoe keep me sane … (???)

the chemo/heat combo is totally debilitating and I can’t see much escape from either until the back end of August …

having said that I’ve then got 6 weeks of radio

I am just so blooming fed up

i do realise i have an awful lot to be grateful for etc etc etc … and there are a lot of people who would be only too happy to swap places but right now this is really a whole year of s**t - of the life-saving variety I know - and I just NEED TO HAVE A MOAN … perhaps I’m having another phantom PMT session … I seem to get down and ppp’d off every 3 weeks … hardly surprising ho-hum …

feeling a bit better already … sorry about all this
love FB xxxx

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awww FB I’m so sorry you’re feeling like this. I’m out the other side - it’s 9 weeks since my last chemo and just started herceptin this week.

I had my problems with the chemo too, as you probably remember. But you’re almost there now - think what you have come through…you have done so well and been so chirpy through it all, making us all laugh with your posts. It must be doubly hard that you are still in the closet - because you have that to cope with too.

I hope this soon passes - you will get by the last one and then hopefully the rads will be a ‘doddle’ for you - I sincerely hope so anyway.

Good luck and take care of yourself - and yes - throw the s**ding alarm clock out of the window !!

love Margaret xxxxx

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hi Margaret

Thanks very much for that.

Lovely to hear from you - I was wondering whether you were still with us or were logging in less often these days.

How are you ? Has that arm burning completely cleared up now and the pains in the feet completely gone? Has your daughter got married yet? Are you training for Ben Nevis yet? Pleas let me know.

Lots of love FB xxx

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Hi FB,
yuppp I agree but you have to add miserable rain and no sign of any sun to speak of to the list, over here. I have 4 xepi and 4 x CMF so should be half way through after the next one in 10 days but the second half if 8 doses of 3 drugs each time. If I had not gone on the trial it would have been just 6 doses of FEC, so getting 12 is pants! I couldn’t go to work because I have no suits that fit. Oh and today a trainee Ukranian onc got hold of my flabby bit and said ‘you have a hernia.’
I said it is just fat. She then said are you able to sit up? Thanks a bunch for that one.
So when you have a bad day, the best thing is it about to get better really soon!!!
Not best cheerful myself now and trying to work through it by doing something useful. So can I just stand by your side in mutual sympathy. Big hug.
Lily x

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Thanks Lily

I just read about your awful day on the other thread - are you a taurean too by any chance ? …

Hope they clear the shadow thing up for you - your bloods sound really good - i think your low neuts is higher than a few of my highs!

Big hug back
lots of love FB xxx

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Hi FB

My wrist is still very sore and very bruised - hence have had to have a hickman line fitted to have herceptin grrrrrrrr. Have just had first one this week. One more and then they are going to test my heart again as initial heart rate reading was low. Onc is of the opinion that I will only get 2 or maybe 4 of the planned 17 doses - will have to wait and see I guess.

Feet are much better, though still some skin falling off, but pain is now gone just about. My daughter gets married in a fortnight (26th July) - by which time I may have a covering of hair, as it has just decided to put in an appearance lol (a very sparse appearance I have to say - it’s hair, but not as we know it haha

As for the Ben Nevis training…well I do walk a lot more than I used to - and I have lost a lot of weight since dx almost stone and a half to date - which is excellent, and seems to be the reverse of everyone else?? We do have some lovely hill walks where I live so hopefully when the weather improves (it’s been lashing down for weeks now) I will get some serious training in. We are actually going up to Fort William in August, so will get to see the mighty mountain then (that’s when the fear will set in haha!!)

Love
Margaret x

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Hi FB, and of course Margaret and Lily

So sorry that you are struggling FB, and that you and Lily still have more chemo to go. There are times that you just have to get through the next day, or even the next hour, and try not to think too far ahead. Somehow the time DOES go by, and you will both be through the other side of the chemo thing. Terribly hard when you are in it though - stick with it girls, you will get through, and reclaim your lives and bodies again! FB makes sure you get given an anti nausea something or other before your next tax, and hopefully you can get through the next one without sickness.

Margaret - we chatted recently on another thread - will look forward to hearing all about your daughter’s wedding. How lovely to have that to look forward to. My son has just been camping in Scotland for DofE and said it was very wet!!! He’ll be arriving here in Australia in about 10 hours time. I haven’t seen him since Easter, and am just SO excited!! Good luck everyone. Love Sarah x

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Oh wow Sarah - how nice for you - I hope you have a lovely time with your son - whereabouts in Scotland was he? Looking at the countrys weather forecast I think he could have been in any part of Scotland and it would have been raining !!

Margaret

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Hi Fizbix,

Just saw your new thread when I logged on this morning. ( awake at 5.30, lovely bright morning! )

I remember reading a previous post of yours recently where you described your disrupted sleeping pattern, so that can’t help for a start! No wonder you feel low, with so little shut-eye,and I suppose that’s why you need the alarm clock! Bless you!! I do hope the weather cools down at least a tad so you can sleep better.I can totally connect with you on the way you are feeling about your body.I have fat bits hanging down from my tummy and rib cage that I never had before, feel very lumpy. If it could somehow be transferred to my area of flat chest, I’d be happy!! I keep looking at lovely clothes, then realise " I can’t wear that", because my tummy is too enormous,( yes, I’ve thought about maternity clothes, too! ). It’s all very depressing. I haven’t the energy to try and walk some of the fat off. Swimming might be good!!! We would float well anyway.( try not to dwell on images of whales that spring to mind!! ) Not that the old swimimg cossie would fit anymore…that’s something else new to buy. I’d be ashamed to go to a public place in a cossie, wouldn’t you, yet I long to plunge into some soothing water. Has anyone else taken the plunge recently? How did you cope with prosthesis,low energy levels,no hair,etc,etc? Do you have access to the sea, F-B?

This is so hard, I totally agree, on body,mind AND soul. Unless you’ve been through it you can have no idea what it’s like. I was feeling very lonely and fed up yesterday. My friends haven’t been keeping in touch like they were at the beginning,they have busy lives,and yet this is in fact the hardest stretch for me, doing the TAX, having just been in hospital for four days with very low neuts and possible infection. I needed a good blub on someone’s shoulder, but there’s no-one around! Then I feel wimpy. Everyone says “you’re doing so well, you look so well, keep being positive”. And inside you’re screaming " I don’t want to do this anymore!!! Let me out of this prison!!!" But, what choice do we have? I really think it would help to have a bit of sympathy along the way, from the Oncologists, don’t you? My impression so far, from the brief encounters I’ve had, is that they distance themselves from us, their patients, they listen but they don’t sympathise with us. Maybe they haven’t had any training on the emotional impact of this dx and the treatments? Have you read that article by Dr Harvey,btw, on here? I’ll bump it up. Such sympathy! It did me good to read it. Take a look when you have 10 mins to read it slowly.

The lack of energy is the real b****r, I’m finding, are you? You have all this time on your hands but no energy to do anything nice. Arrrrggghhhh! I wondered this morning if I could possibly get away to the Norfolk coast for a few days before next TAX, but I really don’t know if I could stand the journey. We go by rail, and it takes quite a few hours to get there. I’m longing for the sea!

I seem to have wittered on too long, as usual, but it’s therapeutic for me.Sorry!

Dreaming of the sea breeze…

Take care everyone, and we WILL get through it, even if we have to come out crawling on our hands and knees.Be kind to yourselves.
Ann G.

XXXX

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Hi FizBiz and everyone on here

It does get you down and I find during the recovery time from chemo it’s the worst so it’s not surprising you’re feeling so low. The chemo seems to take over our lives completely and you can’t plan or do much as you’re held hostage to the neuts situation. I know from previous posts that low neuts and missed sessions have been a real problem for you FB. This is probably adding to your low feeling as in your mind I expect you thought it would all be finished by now. I understand about the not wanting to go to the next session even though it’s the last, each time does seem to get harder even though it brings us closer to the end of this part of the treatment plan. I hate the lack of energy post-chemo and if it was really hot here it would definitely make me feel worse and probably more nauseous. I remember having morning (take that as all day) sickness for 20 weeks with my 2nd daughter through one of our heatwaves in the UK and it was so draining. I didn’t bother to get dressed half the time but did have the option of staying inside and doing nothing, unlike you at the moment.

I really hope you can muster the determination to get through this bit and take some time to get over all the effects before you start rads. You will need to look after yourself then as they can be very draining (I had 30 sessions 4 yrs ago) but at least you don’t get the ups and downs of chemo.

Take care and moan to us as much as you need to - we really do understand unlike even the best of our friends who are not going through all this cr*p.

Nicky xx

ps Lily - how hard did you smack the trainee onc in the face?

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awwwwwwwwwwwwww FB - you really are having a tough time at the moment aren’t you. I just want to come and ive you a hug and make it all better … but this cancer lark don’t work like that. The treatments are crap and life just seems so horrible and we all get to a point where we just think we can’t go on … but even at this low stage you know you will … and you moan and rant as much as you want to love.

I understand about the wanting to work issue … I went back asap and worked through my rads - different to chemo and a hell of a lot easier I imagine … but it kept me busy and stopped me sitting there brooding, but it’s still hard to go to work every day when you feel so yucky.

Hope you are feeling better soon.

Love Lilac

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HEY FB,
Sorry you are feeling so low babes, I honestly don’t know what to say I am only at the start of this thing (no 2 FEC on Wed coming) so I don’t know how you are feeling.
After 1st FEC I didn’t want to go on but as I am feeling fine now I know I can do it.
My hair has finally started to fall out big style so I am going to shave it to a no.2/3 in the next couple of days.

But as I have said to you before you are an inspiration, you usually (bar a couple of posts) are so upbeat and are always there to help those struggling or in need of advice.
I hope you begin to turn it around soon. Your friends from England may make you feel bad because you feel they are glamorous but I am sure they won’t do anything intentionally.
They are coming to see you and yours so at least they are making the effort to visit, unlike some of our friends/family, even if you can’t be annoyed with the hassle.

Like Lilac says I just want to give you a hug to make you feel better and listen in person rather on here.

I hope you turn it around babes.

Love and hugs
Lisa
xoxo

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Hi Fzbz, I do sympathise with you about the heat. Before I started chemo I used to adore the hot weather which is the very reason why we moved to SW France in January. Unfortunately, I went and got cancer and have quickly discovered that chemo and heat don’t mix. To top it all, we are living in a mobile home at the moment whilst OH is building our house, and I so wish I had a bath to soak in with some lavender oil… dreams. Some days it has been 38 degees + which means inside the MH it has been way above that.

You are so nearly at the end now, and you are strong you will find the strength to get through it.

I am just starting my treatment (just had 2nd tax) and I am sure that I will feel fed up like you towards the end… we just want it over with don’t we?

Lots of cyber hugs xxxxxxxxxx

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I know what you mean FB, I am nearly at the end of chemo and start rads. It seems never ending and I feel totally unattractive. I hope you feel better soon.
rach x

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Hello to old friends and new!

Well – before I go any further I should say thanks very much for all the support and I am in a better frame of mind today and far less hungry. I slept all day. Looking forward to a more normal week – forgetting the e-coli injections – I am quite tempted to literally! … don’t worry I won’t deliberately … By the way I am having a lot of actimel … now wasn’t that the most interesting piece of information you’ve had all week?

I have noticed a pattern on TAX – I feel really rubbish about days 6-8 and then it all gets very tense and nasty for a couple of days with a raging uncontrollable hunger …it might be part of the cycle. I have to blow out on here as OH doesn’t like it … or to put it another way it derails him to the extent that it’s not worth it as I have to put him back together too.

I do appreciate how awful the English weather is but believe me it’s far better for you than heat at the moment. You’ll know what I mean if you get a mini-heatwave … and I have NEVER been too hot before.

Margaret – it is especially nice of you to send your support as I know that more than anything you’d like to have the opportunity to get through your treatment. Glad your feet have cleared up. Good luck for the wedding – I’m sure you will be very proud. Hope you like the groom. My brother was going to marry the “wrong woman” – i found out she had awful PMT and used to try and beat him up! … I just didn’t know what to do and thank goodness he finally saw the light and happily married a very lovely woman and they now have a lovely family. Hoe it all goes well.
Well done on the weight loss – that’s fabulous. Looking forward to joining you – one day! By the way – good luck with the psychological assessment if you haven’t had it already.

Hi SSS – how lovelyto hear from you and for you to have another trip by your son. Hope you have a great time together. You are right - I’ll make sure I get some anti-nausia next time – and take something to read!

Hi Anne G – it seems like we are both in the same boat … along with a few others. I have to say that being in the closet I don’t expect most people to understand as they just don’t know – so I expect to be a bit lonely if you know what I mean. In fact it’s quite funny because attractiveness wise my score out of 10 will have gone down by at least 3 or 4 and the people who don’t know are saying “hello - you look well” and their voices are not sounding convincing and their faces are looking a bit puzzled and one of these days I am going to get a pep talk with possible offer of a shopping trip … think I’ll need a one-liner for that day! Glad you are out of hospital – luckily I’ve managed to avoid that so far.

Hi Nicky, Lilac and Lily – Thanks for your support and I agree a good smack on the chops would be a good idea for that onc! Perhaps they should have to have a dose of chemo as part of their training? Thanks for listening and your empathy.

Hi Lisa – you are right it’s nice to get visitors … but I am not putting up with any nonsense … so I have decided that if anyone comes out with anything particularly irritating I am going to leave the room and when they ask where I am going I am going to say “ … to make note of your stupid comments so I don’t forget them and can post them on the website later …” One of them is OH’s sister and everyone always treads carefully around her and I am more likely to be treading on her … if she gives me a lecture on housework, weight or my appearance then her appearance is likely to be reconfigured! Will let you know how it goes …

Hi Peacock – sorry you are so hot too …lovely to dream about hot baths but you can’t have one! … sorry about that … lymphoedema risk … I used to love a good hot soak (I was in there for an hour with lots of hot water top ups and lots of bubbles, exfoliation, a complete treat … ) … roll on September … I would love for it to be cold and rain … I never thought I’d say that ,

Thank goodness for this site and all of you.
Good luck everyone! Onwards and upwards … that’s spirit not weight!
Lots of love FB xxx

PS Hopefully only one more rant to go – I would say in the first week of August !!!

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awww Fiz, with you chook. People ask how I am now and I have to work hard not to cry! And your thread did it again! Am really sorry you are suffering, fed up and have reached the end of your tether. I can quite understand it - I’m pretty scunnered myself now. You have had the 3rd of 4 tax and then finished chemo? I’m just approaching 2nd tax, and dreading it. I understand completely where you are coming from, we can’t all be happy all of the time, and I hope you soon “bounce” back from this blip. Stay Sane, Sue xxx

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Hi rach - you beat me to it - for once I remembered to write in word and cut and paste so I didn’t lose the lot … it’s sooo difficult isn’t it ? I know we are the same inside … well - a bit microwaved and in my case smell distinctly odd … but ignoring that were more or less the same … I think spending time with animals is recommended as they don’t really notice … still we are nearly at the end now … so we just have to keep the weight stable while we have rads and then we can lose it … and gain more hair …

chin up … lots of love … FB xx

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Hi Sue - yes - i have now had … 4 x Epi and 3 x TAX an 1 more to go …which I am dreading as I had a bad reaction to no 3 … you said you are appraching no 2 - what do you have left ?

I have to say that getting number 2 under my belt was quite a high point as I felt like there wasn’t that far to go … half way through and all that …

think a good cry is a good idea every so often on this … I quite fancy one myself but it won’t come out …

I am feeling far more sane today … hope you feel better soon too … it will all be over soon …
lots oflove

FB xxx

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on same regime as you - got 4 tax in total. I just reacted badly to the first one, and i’m not at all sure I can cope with another 3 like that.
Glad you feeling more yourself - you usually seem a very determined lady. We’ll all get there, eventually

love
Sue xxx

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Aww Fiz I really feel for you. I have to say you are such a brave lady (ducks), but honestly. Not because you’re doing chemo, or Tax but because you are still living your life as you do it. I had to explain to MIL today that not all of us are retired or have sick pay some of us have to work to make ends meet and if that’s your circumstances you do it, people telling you not to be too hard on yourself don’t really f****ing help… sorry. only been a few hours since I escaped and if another person suggests I’m doing so well I’m going to punch them in both armpits and ask if that hurts (sorry seems stress makes my shoulders tense, which makes my armpits hurt, which makes me want to beat up the source of stress :slight_smile:

Anyway I 'm only on round 2 and feeling a little victimised, just by some good old chemicals but I can’t imagine that it’d be like doing 8 rounds and suffering heat… yuk.

So you winge away. I mean you’ve already done 1 more than I have to, that hardly seems fair, oh that’s right… nothing seems fair, fair doesn’t come into it.

You have every right to feel the way you do. I’d suggest your soul had been abducted by aliens if you didn’t!

PS: Appearance likely to be reconfigured!

that so very nearly happened tonight. Oh god in laws are not good for me. so not good for me. My next good weekend is busy I don’t give a **** who wants to come and stay in the beautiful lakes and tell me all about their joyous travels aroudn the world when I’m trapped here for the next god knows how long… Arrgggh

Sorry, sorry, sorry.

Oh yeah, I’m at the end of my 3’rd week. FEC 3 on Monday.
Rage, anger, in laws fresh in memory (photos of egypt, moaning abount immigration), steroids take a hold… KABOOOM… roidrage (OH informs me athletes who take too much steroids can actually go psychotic, he also claims these are not those steriod… I’m not so sure)

I did however tell in laws that I need to rest tomorrow before FEC 3, and I really honestly do. Well relax at least! Who sleeps well before a dose, honestly… not me.