I was told I needed MX and chemo and radiotherapy and Tamoxifen instead of WLE and radiotherapy and Tamoxifen.
Because I was more hysterical than Helen Flanagan facing a bushtucker trial a different surgeon said he would try another WLE and quadrant biopsies. They came back clear so I hope won’t need any more surgery. I am still scared though that they might have missed something. Just because there was no tumour in the biopsies doesn’t mean there isn’t tumour. The onc would have preferred me to have MX. My friend said it’s up to me and she really hopes it works out but she would have had the MX.
The onc has reiterated that I have to have FEC. She told me last week that it would be in 2 to 3 weeks time. I haven’t heard anything. I wish they would forget. She said she had never seen anyone so distraught so I saw a cancer psychologist last Friday. He was nice, like all the NHS staff.
I’ve been miserable at home on my own and my OH criticised me for skiving. He said he would work right up to the day before treatment. So I’m going to try and go back to work for a few days or week or so. The GP signed me back on today. I tried to go back before but the management wouldn’t let me.
The main reason I need to go back to work is that my full pay runs out mid April then it’s half pay. My treatment won’t be over till May or June. God knows how long it will take to be physically fit for work afterwards.
Of course it’s not really over for 5 years. Tamoxifen makes you menopausal. Hot flushes and night sweats probably drain you. I know I’ve got to get rid of oestrogen because of cancer but I’ll be old and wrinkly in my 40s because you need it for smooth skin. I had some grey strands, suppose it will go totally grey. My OH agreed that I’ll probably be aged up to look about 50 prematurely.
I don’t want chemo really. I am scared to have it. I don’t fancy feeling sick, mouth ulcers, fatigue etc. I am TERRIFIED of going bald. I am equally TERRIFIED of the cold cap.
I am PETRIFIED of the thought of refusing. If I have chemo and still get secondary cancer I can’t blame myself. If I refuse and it goes to my bones and I face a horrific, painful death, like my Mum and aunt, I will have the added guilt of knowing it’s my OWN FAULT. I’ll never forgive myself for killing myself and hurting my family and friends by causing my own suffering and death and inflicting suffering on them because they don’t want me to die.
I picked up my wig today and hat to sleep in. The wig looked OK in the shop when the assistant put it on. I tried it at home and I can’t get it right. It looks unnatural and untidy.
My real hair is about 20 inches long. It pisses me off when everyone says “Your hair will grow back”. It will take years and years. It grows back different. I’ll probably go grey overnight instead of gradually. I know it sounds vain and trivial but I LOVE my long brown hair. I dread being bald. I don’t want to spend years trying to grow it again. I didn’t want it cut short. I am being FORCED to change something I don’t want to change.
I feel like telling everyone that if they think chemo’s so easy why don’t they have it. Bet they wouldn’t be so gung ho if they were told they had to have chemo. Bet they wouldn’t be so happy about it then. See how they’d like to lose their hair.
Some days I feel like I will have to kill myself the night before chemo starts so that I can get out of chemo and avoid the guilt of dying through my own cowardice and vanity. I felt like that yesterday. I rang the Samaritans. I don’t really want to die, I just can’t see a way out. If there was another way I would grab at it.
I didn’t want to commit suicide today. I felt a bit better.
I have always been a negative, glass half empty person. I wish instead of being diagnosed of cancer I had been run over by a bus or had a heart attack and dropped dead.
I never realised the cancer could come back decades later. Even when treatment is over I will spend the next 30 years waiting for the secondary cancer.
I feel like my life is RUINED.
Oh I Want to Live, my heart goes out to you, the abject terror you feel at what lies ahead can seem so utterly overwhelming, and the inability of doctors to give any guarantees just adds to it, doesn’t it.
What can I say? Well, I was 47 at diagnosis and had very long brown (with a hint of grey) hair - almost to my waist. I dreaded getting it cut so miuch I had to get a friend to phone up the hairdresser for me. I dreaded being bald or sick or whatever. But once it all began I found that I could deal ewith it, one step at a time. For me, having my hair cut to chin lenght was the start of the treatment (I had chemo before surgery my tumour was so big). I still have my plait tucked away in a drawer because I could not bring myself to give it away. I had three doses of FEC then three of Tax. I was never, ever sick, because they gave me good anti-emetics which I took to the letter. I followed all the rules they gave me about mouth care, skin care, etc and was lucky enough to stay largely problem free. Yes, I sucked endless strepsils to protect my throat; sure my food tasted of nothing for two weeks out of every three, but it was doable and I was able to keep working all through treatment. Most people seem to say that it wasn’t as bad as they feared before they started.
Two years on and am I old and wrinkly? No! I have good skin (all that moisturising obviously paid off) and my hair has no more grey than it had before chemo. Would I love my long hair back - yes, if it could appear over night, but the truth is I’ve found to my amazement I look good with it short and really am happy with it this way. People often tell me I look younger than I did before - and they aren’t just being nice.
Life is different after a cancer diagnosis, we can never go back to where we were, but most people do find that they can go on and rebuild their lives, even if it take a lot of time.
I can’t make it feel right for you, but I hope that by posting here, you are able to release some of the feelings.
No platitudes, just someone who has walked the road before you and seen it can be done.
Hi I want to live, sorry that you find yourself on the site. I was a wle and am having fect-t. I have had my first chemo two weeks ago.
I think everyone is scared and have the same feelings as you when first diagnoised.
I have just turned 49 and had longish hair before I was diganosied and like you was worried about my hair at first and still am. I had it cut a bit shorter before the cheml started and have tried the cold cap and am not sure if I will use it the next time, still thinking about it. Its wasn’t that bad, you get use to it. Easy for me to say since now that I’ve started.
There lots of advice and help here.
My side effect were minimal, everyone is different.
Don’t know if I have helped any, thinking of you, hang in there.
Mags xxxxxx
Hi I want to live, firstly having cancer is not your fault and if it comes back too regardless of whatever treatments you have it’s not your fault either. Cancer is different in every individual and I really don’t think the doctors fully understand it. Some cancers come back regardless of what you have thrown at it: chemo, rads, hormone therapy. Try not to think about it coming back, take one small thing at a time and focus on that. You are very emotional at the moment and you have had your world turned upside down. It will get better, once you have your treatment plan in place you will feel more in control again and it will be better. somehow we all find the strength to cope, probably because we are women and are used to dealing with other people’s issues, the kids, the OH, the in law we can deal with everyone else’s problems so we will ultimately deal with our own. Your family will help and in 6 months trust me you will feel better. Your never going to feel the same before but before you had cancer but you didn’t know about it. Now you know and shorty it will be gone!
I am so sorry you are experiencing such fear too- I could have written that post. I am sick f people telli fog how lucky i am, how I will have a new boob and tummy tuck next year. Its not cosmetic surgery and I am not choosing it for vanity purposes. Would they opt to have a tummy tuck, boob job and cancer ???. Booth of us are at the bottom of the dark pit, but I lead afurther posts here and am given hope, and I really wish you find this hope too, maybe not today but soon
xxxxxxx
Hiya…12 months ago…I could’ve written your post…all the things you describe are how I felt…but…here I am 12 months on and boy am I glad it’s over…the treatment is tough but it’s doable…as Revcat and the other ladies say…just take it one step at a time…baby steps I called it…I just focussed on…getting my hair cut…having 1st FEC…dealing with se’s…which were horrible the first time and then I didn’t have many for the other 2 FEC…then 1st TAX…one stage at a time…I chose to have Mx…I was told WLE…rads…tamoxifen…then after examination was told chemo first then WLE…no chance of that for me I wanted it out!!!..I was borderline for Chemo but chose to go through with the treatment as it is systemic…if some of the little bu**ers had escaped I wanted them nuking!!..it’s given me a greater peace of mind…I know there are no garuantees but I feel I’ve given myself the best chance that I can and that’s all I can do…keep your chin up and you’ll get there eventually…
Hi
Sorry to hear you are so scared. Honestly, the thought of chemo was, for me, far worse than the actual treatment and side effects.
I had fairly long hair and decided to try the cold cap. Before treatment, I had it cut to about shoulder length, so it would be less tangled and take less brushing. While the cold-cap is not fun, the worse thing about it for e was the chin-strap. This has to be fairly tightso the hat is in good contact with the scalp, but it does mean that eating and drinking are tricky. I did need to plan my packed lunch carefully.
If you want to give the cold-cap a go, remember, you can change your mind at any time. The nurses would try to persaud you to try for a little longer if you change your mind after 15 minutes, as you do get used to the cold after a little whiile. But after that, you can change your mind at any time - mid treatment, or when the next treatment is due.
The cold cap worked very well for me. Other mums in the school playground weere not aware that I was having chemo. My hair did thin, but is growing back well (and I didn’t go grey).
Hi IWTL
Ditto what others have said.
Although you are petrified there is clearly a sense of humour still lurking in the background!
You’ve obviously read about side effects of the various treatments but bear in mind, everyone reacts differently and you are most unlikely to have ALL the side effects mentioned. Just follow all the instructions you’re given and take tips from the ladies on the Forum who’ve been through it and know what’s good and helps. I’m pleased you managed to avoid the mx but sorry you’re now worrying about chemo. Try to think how you’ll feel if you don’t have it - will it cause you more worry? As others say, it is doable. They’ll give you drugs to control sickness and I had injections to keep my blood cell count to an acceptable level.
I empathise about your hair. My hair initially came back white after treatment, but then it went more grey, then it began turn turn darker and is now pretty much a dark brown and although I’d love to have my auburn hair back it isn’t too bad really and there are signs of auburn beginning to appear. I did read in a leaflet that it usually returns to its original colour. I agree with you about the frustration of how long it takes to grow back and I’m at a bit of an Art Garfunkel stage at present - very curly and springy and not a good look, though it is very thick. You need to develop incredible patience and I’m not sure I can tell you how to do it but I’ve surprised myself. My skin was temporarily not good but has now recovered - again, follow all instructions you’re given and try to book onto a ‘Look Good, Feel Better’ day as they’re great and give you a real boost plus you’ll meet others in the same situation.
Your OH can’t say that he would work right up till starting chemo as he’s never been in your situation. He doesn’t know how he’d feel or react. People!
I worried about how much time I’d need off as I couldn’t afford to live on half pay. However, you can get your GP to give you a fit note, rather than a sick note. Mine said I could work up to 50% of the time, which worked out really well and I just went in as and when I felt up to it. To be honest it really helped me to feel some normality and have a bit of banter with my colleagues - even though I had very little concentration and didn’t contribute a great deal. Anyway, by doing some days it meant I never reached the point of going onto half pay. I did however stop going in when there were a lot of colds doing the rounds as it’s not worth the risk of catching a bug.
Part of me wants to tell you to stop worrying about what might happen but might not, as it’s not helping you. But then that won’t help you either. I wish I could inject a bit of my calmness into you - I really don’t know where I got it from as I’d been so stressed for the previous 10 years prior to diagnosis. I found a dose of depression harder to deal with as there was no timescale to say it will take this long and then you’ll be feeling much better - but with cancer treatment you do have timescales. Try marking everything off on a chart or calendar so that you can see you’re progressing through it. It will feel endless I’m sure, as it did for me, but all of a sudden it’s done and you’re starting to get your life back again. That’s easy for me to say now, as I’m out the other end but one day you’ll be telling other newbies the same I’m sure.
Keep talking about how you feel. It’s better than keeping in all those feelings and I’m glad you’ve spoken to the Samaritans. Hopefully one day in the not too distant future you may feel that your life hasn’t been ruined.
Best wishes.
Flori
X
What a lovely post Flori!
X
Hi I too could have written that post possibly the only differevice being that if they had said we’ll remove from yr waist up I would have. I wanted a double mastectomy and had it and wanted chemo and am half way through.
i have good and bad days.
you can do this and will do
mandy xxxxx
Sometimes I feel nobody can say anything right. If they tell me to “stay positive” it makes me want to poke 'em in the eye. When they tell me I am strong, brave or courageous I wonder what they are seeing that I don’t feel! Most people don’t see me sitting around crying, and when I tell them I’m doing fine, it’s just easier to say than to try and describe the absolute minute by minute ups and downs I am really going through.
But nobody can tell you how to feel or how to react. There is no right, no wrong. Try to remember you didn’t ask for this or deserve it more or less than any of us, and it’s NOT YOUR FAULT. Apart from that I guess, take it hour by hour, or even minute by minute, if day by day is too hard.
You will get through this. We all will. What choice do we have, really?
Gentle hugs,
Rose
I so agree with the hair issue it scares me too. I dread to think what i will look like, will my husband and children be able to look at me and still see me? I think once I have the treatment and my hair falls out I will have to deal with it and I will as Morwenna said “what choice do we have really?” None life sucks at times and I am going through this treatment for my children I want to live to see them grow up and I think I will 
xxx
I really wish that the comments had a like section simlar to FB! Came back after second post op today with fairly good news but confused about treatment! Not seen oncologist yet so not sure what type of chemo but adviced I will need chemo, radio and anti hormone! I am having loads of spiritual and reiki healing and various other stuf. So far after lumpectomy my cancer was down-graded to a 2 from a 3. Senior breast nurse said this had never happened in her experience of over 20 yrs and nobody else has known it happen. The only explanation they can come up with is that is was mis-diagnosed at 1st! NOOOOO. Cancer cells were found in one centinal node so have just had 12 nodes removed, on the Saturday before I sat up in bed and just new I had no cancer cells left! Today told all 12 nodes are clear. My gut is telling me I do not need chemo but I don’t feel they want to listen! I am a little confused and scared and will take the advice of the specialists but also listen to my intuition so it is on with the next step! Reading all the comments on here helps and I thank all those who share their experiences!xxxx
Hi, have just joined this forum today and am so so pleased I did. Am so emotional and stressed most of the time thoughout this experience am surprised my hair didnt fall out on first diagnosis!!! It feels such a huge relief to actually know basically we all feel the same! when I was reading your posts I was crying and then actually laughing (feels like havnt done that in a while) as made me feel im not alone. Its a strange one too this feeling alone as I have a wonderful family and friends but I realise that nobody understands unless youve really been through it. I’ve had a double masectomy, my choice as was in both (different types too!!) I like to be different and started my first chemo two weeks ago, not wonderful but ive made it so far. Am on day 14 now and hair rapidly falling out was feeling extremely low about it all but then reading some of your posts has really lifted me as realise so many of us are going through it and now feel, if you can do it, so can I!!! I realise there is light at the end of the tunnel now as those of you who are further ahead give us strength to carry on. I hope these replies have made you feel the same. You will get there eventually and all the emotions and feelings you are experiencing weve all been there and are still going through them but they will eventually fade. Much Love to all of you out there XX
Thanks so much Sue. It really helps to hear you’re experience and you’re thoughts on it. It’s a hard decision but my mind tells me I’m right xxx Appreciate you’re post Sue, good luck xx
Hi Misa, I have just read your post Jan 15. Just wondering what alternative treatment did you go down having not had chemo? Did you try whole plant food diet, essays tea? Thank you for your time. Currently waiting for MRI as nodules on my liver which maybe linked to secondary cancer cells from breast and lymph gland. Really struggling with the thought of chemo treatment and poisoning my immune system which I feel needs to be 100% strong. Any thoughts or advice on any alternative treatment options would be greatly received. Caroline