Desperately seeking positive stories!

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1

Hello ladies

I’m in a bit of a mess today. I was diagnosed end of Sept and since dx day, which came as a shock, i was on that treadmill of hospital appointments, surgery etc… I didn’t really have time to digest what was going on… now I’ve just had my second chemo and all I have in my head are words like ‘her2, seroma, epirubicin, etc…’ and it’s hit me like a bolt from nowhere and I can’t stop crying. I look in the mirror and see this alien like bald thing looking back and I don’t know who she is… I feel as if someone took my old self that day when they told me I had cancer and i desperately want to find her again… I find I have little or no energy or interest in either watching television, or reading, I just feel desperate to have my life back and the person I was. I am a positive person most of the time but right now, I don’t know where my zest has gone to… Can anyone relate to all of this, I’m sure you can. When I read the posts of people who are finishing chemo, I am so envious, I just wish it were me. I was hospitalised after my first chemo and am scared stiff of becoming ill again. It will be over in March and if I could just fast forward to that day.

My wonderful parents who are in their sixties have moved in to look after me so how lucky am I, but yet I feel so guitly for burdening them with this, they are so sad to see me going through it and I want more than anything to keep up for them really as it makes them cry to see me so sad. We have already had our fair share of horrid family tragedies that i wonder why us again, we seem to get singled out for it. Like everyone out there, I just think i don’t want to be this person with cancer, I was so lucky to be healthy before all of this… even taking tablets and having injections is beginning to freak me out… I guess my reason for posting is… I just want to say hello and try to feel less alone and to hear from people who feel like me and can reassure me that there is a light at the end of the tunnel. the nights are endless and I am just at the end of my tether with feeling either sick, pukey, exhausted, breathless. Does anyone know if depression can come with chemo and is there anything that can be done to beat the blues.

Finally… thank you for anyone who has just read this, you are all getting on with your lives and fighting and I know how hard it is but I think I just needed to vent a little bit in the hope the sadness lifts and I feel able to cope with it all again.

Merry christmas and best wishes to everyone going through this

Carrie

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Hi Carrie

I was diagnosed just over 4 years ago and if there’s one thing I’ve learned in that time its that however low and horrible I get to feel sometimes it does change and there are also good days, and fun days and times when I laugh and feel hopeful.

I have found that chemotherapy really ‘messes with my head’, induces depression, makes me feel hopeless. Its a real struggle, but as I said there are sunny days too. I had two and a half well years after my tretament finished. Now have a recurrence but thats another story.

I have no magic formulas except to say go easy on yourself…don’t beat yourself up for feeling bad, cry if you want to cry. I do sometimes when I’m feeling well write little notes to myself to be read during the hard times.

Not sure why you were hospitalised last chemo…if your white blood count low you could ask your medical team about G-CSF injections.

very best wishes to you

Jane

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Hi Carrie,

I am sorry to read how down you feel at the moment. But like many of us will tell you this is a normal part of the journey nobody want to be on. Honest you are not alone.

I am currently undergoing Chemo, my first four weeks ago was just awful. First hold on to the fact that it is the chemicals in the chemo that are messing with your head. Trying to ‘get back to normal’ is going to be almost impossible at the moment. Please don’t try to make the big leap of trying too hard. Take each day as it comes, set just one target such as have a bath, walk in the garden (If you have one) or just flick through a magazine.
If you try to look too far in advance i.e. March that journey will be so much tougher. I know people will say stay positive, that’s true but a tall order maybe for today.

I do not advocate curling up and ignoring the world, that can be self defeating. Just try not to beat yourself up about not being the life and sole of the party. I promise each day will be just a little easier. You may need to explain to your family there will be days when you do not want to communicate,and that you are not pushing them away you are just trying to make sense of it all.

Depression is known to come with chemo, only Sunday I was feeling that I wanted to chuck it all in because I was a burden ( I am not, its just my husband isn’t the best carer). Thankfully I recognised it is the chemo so I just sat in the bath for an hour.

Different chemos have different effects on people, two years ago I had FEC, I wasn’t so bad on that. The Tax I am on now had to have the dose lowered because I was so poorly with my first. The second has been better. Perhaps you could talk to your Onc about a lower dose of the chemicals.

Hold in there, I trust tomorrow will make you smile.

Take care, with hugs

Carol

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Hiya Carrie

Sending you massive, warm hugs. I was diagnosed in December last year and for the first few months I just seemed to muddle from one day to the next. It is such a huge shock and it takes time to sink in (if it ever does). Once I started treatment I seemed to get better each day and suddenly gained some inner strength that kept me upbeat and positive. I have no idea where this strength comes from, but it does and it will come to you - A woman is like a teabag, doesn’t know how strong she is until she’s in hot water! I have now finished all my treatment and, as I’m triple neg, that’s it for me. I feel really well at the moment, don’t get me wrong I still get the odd ‘blip’, but the good days far outnumber the bad ones. I know it feels like you’ll never laugh (or even smile) again, but you will. Just give yourself time and be gentle with yourself. Life can and will be good for you again. I will be going back to work at the beginning of February after being off for 15 months - eek! - and hopefully I’ll be able to live a normal life again. There is a light at the end of the tunnel, it’s just a little dim at the moment, but before you know it, it’ll be shining brightly. I can’t believe how quickly this year has passed and it will for you (I’ve even got hair now lol).

Sending you lots of wrm sunshine.

Julie xxx

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Hi Carrie

I’d really like to echo what Julie above has said - you do find an inner strength - I don’t know where it comes from but it does come. What you are feeling is completely normal and you will find that people on this website will be extremely supportive so you have really come to the right place. I was not long before you and I have to say that the time did go by pretty quickly. I kept myself busy by making sure I had arrangements everyday even just to go out for a coffee with friends - wonder round a shopping centre (even though my head was not in it), take a walk etc. Do make sure you get out as it makes a real difference and surround yourself with people who make you feel good.

There is one thing I did that has helped me from the start of all this and that is I take a very small dose of Amitriptylene (prescribed by my GP) at night time which helps me to sleep and makes me feel a little calmer. Maybe you can talk to your GP about prescribing something mild for you.

Thinking of you and sending you hugs
Rebz xxx

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Hi Carrie

So sorry to hear how you are feeling at the moment, and I know we can all relate to it. I remember after my second chemo feeling EXACTLY the same and posting a message on here also asking if there really was “light at the end of the tunnel”. I can assure you there is.

I was diagnosed on 4th April when I was 41, I’m married with two gorgeous daughters who at the time were 10 and 13. Seeing their faces when we told them was devastating, and broke my heart. I was very sick on my first lot of chemo (and hospitalised because of it). I remember laying in my hospital bed, and catching my reflection in the small portable television, and cried and cried. I didn’t deserve this, my kids didn’t, and I desperately wanted to be back to “normal”. I finished chemo on 31st August, had a mastectomy and node removal on 3rd October and finished radiotherapy last week. I’ve got a reconstruction and a year of herceptin to come next.

Eight months ago I would never have believed I could feel as positive as I do now. My hair is now growing back, and fingers crossed I’ll be back at work in January. Somehow we seem to gain this inner strength from somewhere, and keep going, as hard as it is. I’ve found my sense of humour has helped me through this, along with the amazing support and endless love and hugs from my hubby, kids and friends.

Believe me, your days WILL get better and the good ones will outnumber the bad. Everything you’re feeling is totally normal, it IS crap and NONE of us deserve it. I am not ashamed to say that I too take a very low dose of anti-depressants prescribed by my GP which has helped. Could this be an option for you ?

Anyway my love, sending you huge big hugs. Keep posting to let us know how you are.

Julie xxxx

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Hello carrie
I think we can all relate to your feelings. I was diagosed mid August and am just ahead of you in terms of treatment. You mention you’ve just had your second cycle. I was very down after my second. I think like you it hit me as the physical side kicked in with hair loss. I felt very old (I’m 41) and as you say you dont recognise yourself .I think depression after steroids is also pretty common.

You do feel like you just have to drag yourself up and carry on but before you know it you will be on your third cycle and on the homeward stretch . Like the others have said , try and do things to distract yourself.

I have been doing yoga , unfortunately have missed the last few weeks but if all yoga teachers are like mine you would benefit a lot. I find I sleep better , can relax myself and basically have a positive mantra. Affirm to yourself things are really going to be ok .

take care
Cally

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Reading your post it could have been me writing it. I was dx last November. At first it was a shock and I was convinced I would die soon. I then started treatment and felt better mentally but not physically. I then started to learn facts I really wish I didn’t know now…but I am the sort of person who needs to know good or bad. It was like a drip drip drip of bad news. every time I asked a question I didn’t like the answer, but I still kept asking. I am now back at work am still convinced I will have further bad news, but trying to get on with it. I have not gained anything good from the cancer experience I do not think I have turned into a more rounded person. I feel I am more horrible because now I don’t have to be ‘nice’ as what good did that do me. Pathetic eh but that is just how I feel. I have a wonderful life I have now what I have longed for, three grandchildren, but this diagnosis is like a big black cloud over my head. I still have happy times and only moan on here, sorry folks !! There is never a morning when I wake that it doesn’t flash through my head, I have got cancer. My bc nurse suggested anti-depressants and they have helped enormousley. The treatment will fly by and you sound as if you have the perfect mum and dad. Take care it will pass. Eileen

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Carrie

I just want to echo what everyone else has said - I really cannot add anymore. Just want you to know you are not alone with your feelings and that the time WILL pass. At times it does seem like there is absolutely no light at the end of the tunnel and sometimes you feel like - is it all worth it? But it is - I finished chemo in Nov and had mastectomy 8 days ago - so thats 2 stages down and maybe one more to go - if I need radiotherapy - still waiting to hear.

I do remember feeling exactly how you feel - this is very much a rollercoaster ride - but there are up as well as downs.

Be gentle with yourself

Lots of hugs
Fiona
x

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Hi Carrie

It’s not at all unusual to feel down in your situation, as I’m sure you realise. As well as the support you are getting from the forums you might want to phone our helpline and talk through how you are feeling. Here you can share your fears and concerns in confidence and the staff who are either breast care nurses or trained staff with experience of breast care issues will be able to offer you support and advice. BCC are here to support you so please use us if it will help. The helpline is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm. The number is free phone 0808 800 6000.

Kind regards

Sam
BCC Facilitator

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Hello Carrie,

I was diagnosed in February this year and have just finished my chemo and radiotherapy. All the feelings you have expressed above, I experienced. I would get up each morning and look in the bathroom mirror and and ask myself how could it all have possibly come to this? I was really ill on the epirubicin chemo just like you, and the stays overnight in hospital were awful. I would bravely wave my Mum and partner goodbye and then once they were out of sight burst into tears. When I walked down the street in my wig, I felt self conscious and felt as if there were two of me - the physical one everyone could see and by my side the “emotional one”. I was restless, couldn’t finish a book - 6 partly read books are still lying around and I still have a stack of unwatched DVDs!

However, as time went by (about the third chemo session), I started to come round a bit. I knew what to expect at each dose, and started to plan day by day rather than think months ahead. I also found that I DID have good days and was able to go out and about in between cycles. When I first started my treatment a nurse told me at the hospital that what ever I felt from there on would be normal and to expect tears, lots of them. I tried to remember this as I sat on the sofa feeling grim.

I know you feel like you are a burden to your parents, but they sound great - they will help you get you through this and if your Mum is anything like mine, you will find tempting dishes are put in front of you in order to keep your strength up.

Please keep in touch via this site, we are all standing by your side giving support.

My very best wishes, Pauline
xxxx

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I just had to let you know that I am now going to bed feeling so much better than I did earlier today and it’s all thanks to all you wonderful people who took the time to respond to my message. I just sat on the bed with my mum reading through them all and we were both really overwhelmed and moved by the level of support and affection that is out there. You have all made me feel just that little bit braver, that little bit more optimistic about my future and that bit saner for making me see that it’s all just par for the course on this journey to kicking cancer out of my universe.

Really can’t thank you all enough. Lots of love, light and positivity.

Carrie x

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Hi Carrie

Just caught up with this thread, but it is very scary time for you and it is an emotional rollercoaster journey that we are all on.

I was dx in July and have now had 3 x FEC and 3 x Taxotere, and finished my chemo on 21st November. It seemed to go so quick though I have to tell you, as at the beginning I thought I would never get to the end or see the end, but I made it. The FEC I sailed through, but the tax knocked me for six, hospitalised once for a week, and then final dose was reduced by 20%. But it is DOABLE no matter what happens and you will get through it all, and you have made the first one. Just keep going and don’t give up.

I still have my down days when I cry lots and then am OK. I have 2 children under 4, so my life has pretty much had to carry on as normal. At the beginning I was a mess, but once chemo started it made me more positive and I started back to normal routine as best we could around the treatment. You do find an inner strength and you will get through this. Everyone on here is here to help you and will support you no matter what, just post your feelings and we will respond.

I had a heart scan yesterday as am due to start Herceptin tomorrow, so fingers crossed that things all OK. The waiting is the worst part of all this crap, but we have to keep going.

Keep trying to be positive and take each day as it comes and one word of warning, listen to your body during the treatment and rest as much as you can when you need to. I learnt the hard way believe me.

Take care
Love
Dawn
xx

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Hi Carrie,

Brilliant!!! I must be honest though, I am not the best corresponder in the world, more like an every few days kind of person - I hope this is ok with you.

I know what you mean though about the daily postings keeping you going - I was the same as you, logged on each day to have a look at what was being said (although I didn’t have the courage to actually post any of my own thoughts during active treament), but sometimes thought “oooh, I wish I hadn’t read that…”. I used to log on in the evening during tratment and then go to bed straight after. A bit of a mistake for me as I would lie in bed thinking about all the issues I had just read about and get myself into a bit of a stew.

Your treatment sounds just like mine except I am not having the herceptin doses. The tiredness on the chemo used to really get to me - I would have my dose on a Thursday, have the 48 side effects from the Epi, which would take me to Saturday, and just as I was emerging from that, wham, bam, the tiredness would come on around 7pm Sunday night - all I could do was wait for the next Thursday to arrive when energy started to flow again.

Potentially though, I have some good news for you on the Rads front as it is MUCH MUCH easier than chemo. The skin can get a bit red but the hospital can give you some guidance on creams etc or even give you some as the weeks go by. I felt a little tired during the rads but I think this was more down to having to go to the hospital each day. In the end I would stop off on the way home and have a wander round Tesco / Waitrose / Sainsbury’s etc to break the monotony. Perhaps, your Mum could go with you to a few sessions and then afterwards the two of you could treat yourself to a bite to eat on the way home?

The tamoxifen doesn’t seem too bad either. In the lead up I had read about all sorts of side effects but to date, I seem to only have a few hot flushes at night and aching joints, but I had those during the chemo / rads anyway, so no changes there. Fingers crossed that it will be the same if not better for you.

I finished work on 12 Feb 2007 and haven’t been back since. When I was on the up, I did go out a bit and felt uncomfortable as I could have worked. But, I adopted the same attitude as you in that what I was going through was enormous and I needed to look after myself with naps, good food, and avoidance of people with nasty colds, flu etc. Also, I just didn’t want the stress of saying to people that I was back but would be disappearing again very soon. I am convinced that setting my own agenda for the good weeks helped me make sense of it all and kept me going through the bad. Anyway, I am hoping HR will phone me today to say yes, I can go back partime for 3 weeks - I know they have arranged a car parking space for me, so the signs are hopeful. Ideally I would like to do 4 mornings a week to start off with and then after my next op, to start building up to full time by April.

So, keep going, focus on the forthcoming good week and plan what you are going to do…and remember the next dose is in the home straight weeks and your ultimate goal of no more chemow will be getting closer

Best wishes, Pauline
xx

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Hi Pauline

Have you got a start date for work yet? I am speaking to my boss today about possibly working just the second and third week after chemo but i’m stll not sure as it’s not the kind of work that you can just dip in and out of… and it has its pressures so we shall see. Had a rubbish day yesterday, had a really bad attack of the blues .My poor mum, she hates seeing me upset but I just couldn’t see through everything yesterday. I don’t know if it’s the steroids withdrawal as i was similar at this stage of the last cycle. I think this time of year doesn’t help - hard to get out and about and i love walking the dog but it’s just so awful is this weather. Anyway, i will not be so downbeaten! Where abouts in the country are you? And does this mean that you have now finished all your treatment and are just taking the tamoxifen? That’s great if you are, you must be so relieved. Some days I still find it hard to really accept that this has happened to me. It’s only been just over three months but the shock of it is still there especially as I thought it was something and nothing! I am lucky though, my mum and dad have just been amazing. They cook me delicious meals and really look out for me - it’s lke been a wee girl again… i am getting myself together a bit more though with the help of them and my friends. My sister is also amazing, she has her own health issues but she is so generous. Are you close with your family? Right then, I really must go as the cleaner is coming and i need to get myself ready… hope you’re having a good day so far Pauline, take care carrie x

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Hi Carrie,
I just had my third FEC yesterday. So I guess you must have had your third recently. Is that right? I am just so sorry I didn’t see this thread before. I wish I could have been there to give you some words of support when you were low.

I am also sooooo sorry I noticed two days ago that you asked me a question on another thread (I thought I was keeping up with them all but obviously not) about my sickness tablets. I am on Ondansetron, Dexamethasone (steroids) and Domperidone.
The first FEC I didn’t need the Domperidone at all. The second one I took one. I do feel more nauseous with this third one though.

I found the information pack from Penny Brohn Cancer Care (used to be the Bristol Cancer Help Centre) was very useful. YOu can order it on their website at www.pennybrohncancercare.org - They also do some wonderful courses there but you can find out about it on the website.
With the information pack you get a relaxation CD and DVD.

It is very difficult to keep on top of the depression and all the hormones seem out of control. The Penny Brohn Cancer Care gave me a number for the national register of spiritual healers. I don’t know what you think about that sort of thing? I was always a bit dubious but felt reassured that they were recommending it. I got in touch with a wonderful woman who lives near me and she comes and gives me healing before every chemo.
She also comes inbetween chemos to boost my energy levels. When I am feeling down with hormones all over the place I do find it helps me.
As well as this I find walking and some stretches at home are quite helpful. Walking is difficult because it’s boring on your own but I find even ten minutes gives me a bit of a lift. You may be doing all of these things anyway.

Hope you are Ok and having more good days than bad.#
Love Lorna XX

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Hi Lorna

Thanks for your message and the tips about the pennybrohn cancer care, i’ll definitely look online. I could do with getting out more and doing things… I had a spiritual healer but she went off to Australia, i found she worked wonders with me. I try meditating but some days i am so down it’s hard to even motivate myself to do that. I had a good cry yesterday so hopefully that will get me through the next week or two! Every now and then I just find it all so overwhelming and even though they gave me a good prognosis, sometimes it’s hard to hang onto that and your mind runs away with you. Also thanks for info on sickness drugs, i found domperidome didn’t work for me so will ask for something else at next chemo. Dreading it as my last one was very painful due to very sore veins but at least it will be my 4th and i’ll be on he home straight. I had a great walk today with my folks and the dog… it rained the whole way through but it was just so great to be out in the fresh air.

Anyway, great to hear from you, hope you are having a good day yourself, thanks again, Carrie x

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Hi Carrie,

Don’t worry, tears are all part of the package and too be honest I would be surprised (and extremely jealous) if you did not feel like agood boo hoo at some point during this whole episode. My Mum and Dad used to get upset as well when the tissue box came out but I tried to explain to them that its the drugs that induce the tearful state of mind rather than true depression. I used to find that all logic went out of the window when the drug induced state took over and no matter how many well meaning noises were made, I used to think I would be the one where the whole treatment would fail and would go down in medical history as the one no one could help - complete rubbish of course. It’s interesting that you and Lorna can pin point when the blues will appear, at least you can warn those around you when tearful window is due to arrive.

Sickness wise they used to give me Metoclopramide Tablets, I used to call them my if and whens, as when that icky feeling stated to appear I would just pop a tablet and the feeling would disappear. Have you tried these tablets? I was alos told that fresh pineapple was good as its antispetic and healing…just a thought.

Well, I am stillsitting here waiting for HR to phone me to say its ok to return to work. I shouldn’t moan really as I have been off almost a year and to expect a call within 48 hours is perhaps a bit cheeky, but I will phone them again tomorrow to chase them up. I live and work in West Sussex, where are you?

Pauline

Ps Treatment wise I am all finished except for Tamoxifen but not enough time has elapsed for me to forget the trauma of it all, so I can really relate to what you are feeling, physically and emotionally.

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Sorry Carrie, I have just spotted your other thread which mentions the Metoclopramide tablets useless effects…so I am no help at all in that direction. Hoper you enjoy the bubbly though.

P

20

Hi Pauline

How are you? I’ve had a much better day today as we took my nephew out for the day with the dogs and it was so lovely to get some fresh air and do a good walk. I live in West Yorkshire and so we drove into the Dales. Yesterday I saw my BC nurse and she put my mind at rest about a lot of things and made me feel a whole lot better. Huge relief as I think I had a meltdown moment on Wednesday where I just couldn’t see things positively no matter how hard I tried to. Thankfully it’s passed. Hope you’re having a lovely weekend and managing to get out and do some nice things. Take care, Carrie x