Hi
I live inbetween oxford and swindon . Was dx in may, had double mastectomy june and so far had two fec.Apart from on here i have not spoken to anyone going through this and i feel very isolated.
Hi Wendy
I am sorry to read that you are feeling so isolated, there are a couple of Breast Cancer Care’s support services that might be of interest to you as they can offer help and support via the telephone in addition to the support you have here.
The first is Breast Cancer Care’s telephone support group. It’s a chance to get together once a week to talk with people who’ve been there. Linked together by phone in comfortable surroundings, you can express your feelings and discuss the practical and emotional impact of living with breast cancer. The groups will be particularly useful for you if you feel isolated. The groups are completely free (we pay for the phone calls) and as long as you have access to a phone and have a quiet private place from which to call, you can join us from anywhere in the UK.
There is also Breast Cancer Care’s peer support service. The telephone service aims to quickly put you in touch with one of our trained peer supporters, who has had a personal experience of breast cancer. Our peer supporters are from diverse backgrounds and ages and have experienced different types of breast cancer and treatments. They are ready to listen, offer skilled emotional support and share their experiences and understanding.
For more information about these and our other support services available to you, please telephone our helpline on 0808 800 6000 (Mon-Fri 9am-5pm and Sat 9am-2pm) or email:
I hope this helps
Kind regards
Lucy
Hi wendy, I live in Oxford, sorry you feel that way. I was dx end of July, first lumpectomy but then there were bad results and had b/l mastectomy 2 weeks ago. Starting Fec on oct 1st. I’ve been talking a lot about it to my breast nurse, my family, friends… but sometimes i feel nobody can understand what i’m really going through, all i get is ‘oh poor thing you are too young to go through this’ - i’m 34. Now everything is looking a bit better once i had the op, but the idea of chemo is still scaring me…
Which hospital you are going to?Churchil? They’re treating me there and i can’t tell you how happy i am with the care. This place is a great place to start with, everybody can understand you and what’s going on with you - I had so much support and info from the forum. Good luck, and get better.
Tato xx
H tato
thanks for your reply.Yes i am being treated at the churchill and found them very good.Looks like we are doing chemo different days, my next one is 25th sep.My BCN is Jill stoker and is fab but she has so many people to look after i feel a fraud to ring her for just a chat.Im sorry to hear you are so young , its a bu–er this BC . Iam 48 going on 20 or always thought i was until this damn thing hit me.Inow feel my age.Do you have any children?.I have two ,son 23 next week and daughter who is 19 and off to uni next saturday.
I had so many visitors and flowers after my op(had to buy more vases),now im at home all day dont see anyone. I know everyone is working and got thier busy lives but like you say i dont think they know what this is like for us.Hubbie keeps asking am i ok ,and i say yes but the sicky feeling ,heartburn insomniaand generally feeling like crap is getting me down.Pehaps im just having a bad day.Sorry to be such a moaner. do post again and tell me about yourself, hugs xxx
Oh honey, you’re not a moaner at all, it seems you are dealing with everything yourself, I’m so impressed. My mum is staying with me to look after me and my son (she was visiting me from Armenia when all this happened so she stayed longer). Yes, I have a 5 year old son, he’s at school now, which is great as he enjoy being there and I’m not too worried about not spending much time with him.
Gill is my nurse as well and she is super, so nice and attentive - but i know that she’s so busy. And I know exactly what you means about everybody being busy, there is attention, messages and phone calls and flowers from everybody, but still, there are moment i lie awake at night, full of worries and fears. And of course there are good days and bad days, sometime i can forget about everything and think that it’ll be cured and i’ll put everything behind. but there are days (like today) when I have just a slight headeache, the operation wounds hurt just a bit, i feel a bit tired… but when asked, I tell everybody that i’m ok. Sometimes we all need good moaning, even if it’s a minor thing bothering… what kind of chemo you are having, only FEC? will you need radiotherapy afterwards? Are you going for recon? I’m going to have 3 FEC+3TAX, then radio, then recon surgery and sometimes it all sounds so overwhelming.
So be well darling, it’s gorgeous day today, enjoy it and do write if you feel like moaning - I’m always ready to moan about my own problems… hugs
Wendy
Come on here and talk whenever you like. I prefer it in some ways to talking to physical people who are not going through what we are. Sometimes it’s good just to read that others are going through the same/similar to you and makes you feel less alone.
I’m a bit further ahead of you, having had 3 FEC and 2 TAX, just one to go. I did feel overwhelmed by flowers (and had to buy more vases and borrow from neighbours and give some away) at first but then there was nothing for a while. Then I got more flowers, and some people have sent several cards etc, which is nice.
As you go on with chemo, it gets a bit more difficult to know what to say to people; do you tell them the truth or lie and say fine?
Is there a local support group you can go to? Your bc nurse should be able to tell you.
Good luck with the rest of your treatment everyone
Kinden
x
Tato
thanks for your reply.Iknow what you mean about saying you feel fine you dont want to make a fuss.Ijust feel there are so many people on here that are having just such a bad time that i feel a bit of a fake ,dont know if i have actually accepted whats happened is real.Everyone keeps saying im so brave whats that all about ive got no choice about this ,stamping my feet is not going to change things. I just want to talk to someone who feels the same as me.
I AM ON 3XFEC THEN 3XDOCETAXEL. chemo finishes 24november,i have got xmas off the 5 weeks of rads. I keep praying that it will all be over then,but i dont know nobody does.
Have been really naughty tonight and been out for adrink or two just makes me feel maudlin but at least i will sleep right through tonight hopefully,am fedup of being awake at three in the morning. You are so lucky to have your mum there.
Iam not going for recon surgery was enough and my boobs were not me, i am me. I might of felt different if i was younger,but ive got used to being flat now ,always got the falsies for special occasions.
Thanks for replying ,hpoe all goes well withyou please keep in touch. big hugs xxx
Wendy, i know it sounds a bit stupid and cliched, but i know what you means about feeling fake, and accepting its real or not. Today it seems totally unreal to me because my son had some bad tummy pain at night and we had to take him to A&E and of course i totally forgot about myself and my problems. He’s fine now and i feel so shattered… i’m feeling scared of chemo and spent the day looking at some websites for scarves and wigs, though i want to try cold cap first and i have a lot of thick hair… I’m so impressed by everything you’ve done already, and hopefully you’ll have good christmas. I’ll keep it short now, too sleep and tired after last night, also still got seroma on one of the wounds and it bothers me… But be well darling, keep in touch, hugs, xx
Hi Tato
hope you lad is better now.I know what you mean being scared of chemo,i was petrified,but it was just the unknown.It was really easy and didnt hurt a bit. I do feel nauseous for a few days,awful heartburn, but generally ok.Everyone is different, hope you find it managable.I had seroma too and had to be drained three times, luckily it didnt hurt coz area was still numb.
As for headwear H&M do some lovely hats and beanies, Claires accesories do too,very reasonably priced.I decided against the cold capso got a couple of bandanas beforehand.My hair is just about gone now,but im not too phased about it.Great not having to shave legs and underarms though.Got to be a bonus somehow ha ha !!
It would be great to meet up sometime,if you are up to it, maybe when ive got appointment with oncologist,as i will come to oxford on the bus from Faringdon.
Well Tato(is that your name ?),hubbies putting dinner out now so i will get off now. will pop on later to see if your on.Big hugs xxx
Hi wendy, yes, Tato is my name, and yes, I’d love to meet you - next 1-2 weeks before chemo are a bit mad, but let’s arrange and meet up at some point. My son is fine now, just had a bad scare and of course totally forgot about how i feel. Now we’re all fine, i have lots of visitors this week, sometimes it’s nice, all the attention, sometimes some questions annoy me - but hey, i cant expect everybody behave the way i want them to behave. I hope seroma is going down and i’ll be fine before first chemo.
How you’ve been? how are you feeling - your chemo is next week, isn’t it? you’ll be halfway through by then, for me it seems such an achievement. I hope you found some support in this forum, it is so much easier to talk to people who understand what are you going through. and thanks for the tips for H&M - i love that shop and buy lots of stuff if i’m in london, unfortunately they don’t have one in oxford - the only minus in this city:)
ok, my darling i’m off now to put on my falsies for my next visitors, but please be in touch. hugs, tato
Hi darling, sorry was too busy/too low to write, nothing major happening, just remembered today that it’s your chemo today. Just wanted to wish you best of luck, if you can, let me know how are you feeling. How was your trip to Wales, is your daughter enjoying the uni already?
I’m the same, serome disappearing, but dreading chemo… got some headscarves, getting ready. I had far too many visitors this week, and hoping to stay alone today with my lovely book.
Be well, and let me know how are you feeling and let’s try to meet up at some point.
Hugs, Tato xxx
Hi Tato
chemo was ok today but i did ask if it was normal to have sore veins, she said yes. Hey ho another one to add to the list ha ha ! H ad a good time in Wales,daughter is settled in. I have rung her every day so far. will have to cut that down works out expensive.Had a good few large glasses of wine saturday night and was a bit wobbly but enjoyed it.Dont have a drink very often now.Really dont worry too much about chemo, its managable,as i say its the unknown,once you have done one you will know what to expect.Is your mum still staying with you ? and your son ok ?.
Yes it would be good to meet up and chat.we will have to work out a date.anyway love going to get off and have a lovely long hot bubble bath. take ,speak soon xxx
Hi darling, sorry i’m disappearing on and off, keep forgetting to give you my contacts - yes, mum still here, everybody is fine and supportive, 2 of my friends are coming with me for chemo tomorrow, i don’t even know whether i’ll allow it? do you go there alone, you brave woman? I’m glad you manage to enjoy your wine and baths still… i bet i’ll be moaning nonstop when i start chemo. I’ll see how i’m getting on with it, and if i’m ok, lets meet up one day. Be well, darling, and thanks for your support - i’ll go see lovely Gill and prof. Harris now.
Hi Tato, hope all went well with the chemo today .how did you find it ?Im half way through chemo now,change todocetaxel next one dont know how i will get on with that.just getting over the awful heartburn stage now so going to indulge in a couple glasses of wine in a mo.OH is at work till 8.30 so i can watch all my programes in peace tonight hooray!!will have to meet up sometime, maybe for lunch. keep in touch .big hugs xxx
Wendy - Don’t forget there is a Maggie Centre at the Churchill - way down the back in a portakabin. But they are great people and really willing to listen and support.
Thanks Phoebe, im actually going to the look good feel good sessionthis month at the maggie centre,and am looking forward to it . it will be good to meet up with other ladies going through the same thing too.I did go to the maggie centre last month just to see what it was all about.they seem very nice there.Are you an oxford lady ?. im pleased at my treatment at the churchill,and my bc nurse Jill is fantastic. hope alls well with you xxx
Hi girls
I had my first FEC yesterday, feeling strange and weak but not as bad i though i’ll be. Tried cold cap as well - it was not bad, I’ll see how it’ll go. I’m cold today all teh time though, have the heating on. glad to hear from you wendy, and wheni’m a bit better, i’m gonig to try maggie’s center as well - and try to meet up for lunch denfinetely. By well, hugs
Hi Wendy, how are you? Hope you are fine and enjoying the weather. I’m getting better after first FEC, today was the first day i drove to school to pick my son up.
Thinking of you, take care, Tato
hi tato, glad you are ok.know what you mean about being cold, sleep in a beanie most nights not very sexy but thats the last thing on my mind ha ha !!am sitting up tonight cos got a very sore throat and having a few wines to numb it,will go to Dr tomorrow if no better, dont want it to delay chemo next week.just want to get this bl***y thing over and done with.how are you doing with your hair?throat not quite numb yet so going to pour another! be well speak soon . big hugs xxx
Hi Wendy, how are you feeling, how’s your mood? Are you better? Hope your chemo date is the same, which day is it?
Wine is a great way to numb the throat, I can’t drink now at all though, get all weak and sleepy after one sip. Still fast heartbeat, but feeling much better and a bit active, although very moody. I’m getting fed up with ‘you’re so brave’ and ‘don’t worry your hair will grow back’ comments (I haven’t lost a single hair yet). Of course I have couple really good and close friends, who are just there for me and great, but most people sometimes drive me nuts. The drama about losing hair is the main interest… Ah, I’m being btichy today, sorry, just one of those days. Be well, let me know how you are, hugs, Tato