Lovely to hear from you Esme again. As I said before you're always there for me when I fall... Thank you again for your support. (I'm thinking you may be a guardian angel.)
I have put events into the right perspective now and building up from there. Even been able to support others who were really in a low state! Even the lowest experiences give you an insight into how others might be feeling...
Today is the first day in ages when I haven't had medical appointments so really enjoying relaxing and not having to rush around. Pity it's not warmer! I'm on the Kent coast and it's raining again! So I'm hoping to do a spot of craftwork while I munch my way through several hot X buns... Hoping your day is progressing ok.
Lynn, good to hear you're through the initial days after your chemo. I read your post and hope S.E.s are not too bad this time.
Look after yourself and let others cherish you too.
Best Friday wishes to all of you here.
Lol from Welsh girl x
Sorry W, only just read this thread again for the first time in a wee while. I'm so sorry you had another bad experience and i'm very glad you've come through and out the other side - a real sign of inner strength! I will pm you soon to see how you're doing.
Glad to hear that you are feeling a lot more positive and that you have been able to give some feedback to your BCN, it can take a lot of courage to do that when you are feeling low.
Hope you and all the other ladies here have a good Easter weekend.
Love Esme x
I am calmer now and stopped crying, eventually!
Thank you to you all for your support and kindness, it helped me to get through some very dark days this week.
Hippychick you certainly helped me realise that I felt worthless beforehand, and my BCN affirmed that feeling,but she did not cause it!.
The episode with the fitting of my prosthesis was not handled well and I have fed back some pointers to improve the process in future. My BCN was so sorry about the rushed procedure, and upset. She blamed overwork for the haste. She has been a wonderful support to me and I will indeed write to her line managers, not to complain but to praise her worth. She is doing the work of two nurses because the other one has not been replaced!!!
I may not be able to tell her exactly how badly I felt during the fitting but I told YOU and you were so supportive. I thank you all for your kindness and care. Through your words I have been able to rebuild some inner strength and believe I do have a worth.
Thank you to you wonderful women. I have met some of you before who have helped me in the past, I am overwhelmed by your concern for me.
Together you've helped me through another trauma!
I am even more grateful for this after reading Signet's post tonight (GOODBYE) where she is leaving the forum because she hasn't felt heard. My heart goes out to her.
The feeling of isolation can destroy you, I know that feeling all too well.
My love and thanks to you all from Welsh girl xx
My BCN wants to rearrange another fitting appt to make sure she can address some of the unanswered questions I had. She is trying desperately to make up for the pain involved last time. I know she wants to make my beginning of having a female outline, a positive beginning. I think maybe the second attempt will help the healing...
I just wanted to say that your allowed to feel bad, cry, laugh, feel frustrated or angry. These are just emotions and to feel means that you are fighting - KEEP FIGHTING. I too am on my own although Charing Cross has not let me down yet.
Be what YOU want to be and not the cancer, the doctors or anyone else. You are the most important of these and should recognise it.
Good can come from bad and I now have a grandson and another
grandchild on the way. I am going with the season and seeing the spring come about has raised my outlook.
Please do not allow others to pull you down you are feeling weak but practice a few words to yourself everyday ~ value yourself - look what you have achieved already - on your own. You have fought through all you have gone through so far and you just need to phone the nurse and tell her how you felt - I am sure that you can make a difference for others who have that nurse - perhaps because you didnt say anything then she took it you just wanted to get out of there quickly as so many of us do!
Acknowledge all you have done so far - write it on a piece of paper and include all the nights you have cried and still awoke in the morning and got on with life. Include how you managed to go to appointments when you think everyone is looking at you or that your joint pain is making it hard for you to walk (me) or that you got through the day and actually found it was enjoyable.
Read it through ~ yes that amazing person you are looking at is: YOU
so sorry to hear of your upsetting and humiliating experience, you must have and be feeling very fragile, I dont know how I would react, but as an on looker I would say report hwer to your surgeon, but then thata easy for me to say.
hope you are felling a little stronger now,it does show how fragile we all are at these times
take care xx
So very sorry to read about your bad experience, you have had so much good advice l can only back up what everyone has said.
My Love and Thoughts are with you, stay strong and know there are people out there that do care, sending big hugs (((((X)))))
"it has become the source of my worthlessness .....I wasn't worth the time to be treated fairly or kindly".
It feels as if there is something in there about your own feelings about yourself right now? which it sounds like you have had 'affirmed' by this thoughtless nurse, from whom you would expect 'so' much more.
You are NOT WORTHLESS, you are someone who is going through a deep emotional and physical hurt, who deserves some time, dignity and respect. I am sorry that you did not have your needs met by your BCN, and I would encourage you (if you have the energy) to let her (or her superiors) know how you feel, to ensure that others do not experience the same fate.
DO NOT ALLOW THIS EXPERIENCE TO DEFINE YOU!
It is hard enough to endure everything that you have gone through without having this adding 'insult to injury'.
I hope that you are 'ok' in this moment.
Love and hugs
What a HORRIBLE experience for you ! Please phone the support line Lucy has posted, to see if an experienced counsellor can help you. You are always so helpful & supportive to us, I wish I could do more to help. I could cry myself to think of you in such physical & emotional pain.
I have to say I disliked my BCN on first meeting, & although I thought I was supposed to 'bond' with her, I have seen her very little, & haven't heard from her since about November. Not that I've missed her. But people said that perhaps I could ask for a different one, since not everybody takes to everybody else. I never did it, & don't know who I would have asked about it to be honest, but maybe it's something you could do. She sounds so unsympathetic. Where do they find these people? And how do they get these jobs if they can't empathise at all?
Please post again to say how you are now that it's another day.
Thinking of you
Love & hugs x
What an awful experience for you. As you rightly say, getting our 'new' breast is an important time for us and if you are in pain the last thing you need is someone prodding around uneccecerily. It's a very sensitive thing both physically and emotionally and should be treated as so.
I hope you ring the BCC number that Lucy has posted for you as it sounds like you really need to talk to someone.
In the meantime, big hugs and keep posting here, you know that people here will support you.
Love Esme x
I am sorry to read that you are feeling so low, please feel free to call our helpline for further support and to talk through how you are feeling, our helpliners will be able to suggest other forms of support to you too. The number is 0808 800 6000, weekdays 9-5 and Sat 9-2.
Hi Welsh girl
So sorry you are feeling so down. I have been lucky in that my BCN has always treated me with respect and has always been very helpful.
What you have gone through with your BCN sounds terrible.
I just felt the need to reply and send you a big cyber hug xx
I'm not coping again!
I've been crying for two days now!
I really don't know how to stop. I feel I was assaulted by my BCN yesterday.
A 45 minute appt was eroded into 15, where I had asked for a physical examination of my scar area and pain points (I have been dx with Mondor's disease/cording through my breast and I have a frozen shoulder caused by tendonitis, so I'm in considerable pain and relying on painkillers fulltime again!) My BCN stopped me from talking about my pain or anything else and proceeded to fit a prosthesis without any warning! I can't even wear a bra yet and am relying on cushion pinned into a vest, so having a silicone 'lump' being pushed into my space was degrading and humiliating! Having someone's hand invading the space where my breast once was felt like a sexual assault! Her hand kept zipping in and out of the borrowed bra as if she was trying to 'build' me rather than help create my new body outline. She kept pushing one in after the other as if she was trying to solve a puzzle! Which piece would fit???
It all happened so quickly, the puzzle was completed within minutes,the piece boxed up and I was dismissed!!!
She rushed off down the corridor and left me standing.
I just began to sob uncontrollably and it went on for hours...
I can't believe a professional could treat someone like that. I hope no other woman has to go through the same experience as I did.
I felt humiliated and degraded.
This piece of silicone I now possess,should have represented a huge part of my emotional recovery and will become my womanly outline to others.
For me, the way it was fitted, with haste and a lack of dignity it has become the source of my worthlessness.
I wasn't worth the time to be treated fairly or kindly.
What am I to do?
Thank you for your support and understanding hippychick.
I'm feeling the 'hug' through the airwaves.
Today was better than the others and so I move onto the next...
Take good care, Welsh girl x
I was 'so' moved by your originial message. I am a single Mum, and whilst I have a beautiful son who lives with me, I am on 'my own'. Having been that way for 10 years, I find it really really hard to ask for help, I have come to believe that I can only rely on myself.
But as a friend reminded me recently, you may live alone, but you are not alone; the friends here may not be able to help with the practical things that you need, but there is always someone here to listen...so just have a good old rant!
Have you tried explaining to your friends how you feel? you suggest that they are bored, but maybe they just don't actually understand how it is for you, try to trust them enough to let them know how you truly feel...they may surprise you.
I know from experience that nightime can be very lonely and I have felt desperate at times, even before this, so try and consider a routine that helps you settle at night, camomile tea, a good book, a bubble bath or whatever, there is some comfort in routine.
I wish I could just give you a big hug, cos I can really feel your pain. Hang in there hon, things will get better,
Bless you Esme.
I think you're right that some of my friends are being insensitive as today one came in for coffee and proceeded to recount a whole list of trips she's off on in the next 3 months and that was after I'd moaned on about being trapped in my little town for the past seven months...!!!
The support to my post since Friday has been truly amazing and it shows the real empathy I crave. I suppose I've been looking in the wrong place to find it!!! You just think good friends will be there for you no matter what but long-term ill health does and can change the dynamics of friendship. And when we're feeling vulnerable it's difficult to accept these changes.
That's what my head says but my heart is weeping...
I really do miss their empathy.
However, I've found all you magical women who have real insight into my current plight. I thank all of you. I thank you for caring and being there for me. I hope I can be there for others too.
Today my (previously sick) counsellor got in touch to arrange a meeting on 29th so that will be helpful and the BCC phoned me as a result of an e-mail enquiry and put my mind at rest on an associated health issue, so today I feel well supported (apart from friend!)
However at night, I think everything feels darker...
So thank you for your friendship.
I hope you are coping with the aftermath of feelings from your dx a year ago. Time can be a great healer but it can also clarify emotions to the point of reliving them after an odd trigger when you think you're pulling through...
Take good care,
Welsh girl x
Diwy1, I know exactly what you mean! We're our own worst enemies aren't we? I'm just desperate to be heard but even I'm bored of my own situation now... Just can't win can we, when we tell people we're fine because we can't cope with their lack of interest!
Do hope you too can find support for yourself here.
Keep in touch and keep sharing.
Welsh girl x
Hi again Welsh girl
I really think you are reading my mind, when I read your posts I could have written them. I am so bored with this situation, never feeling completely comfortable, & I was perfectly well & healthy before or at least that's how I feel. Like you I have whole conversations that hinge on my symptoms & I'm sure people don't really want to know, or don't realise what they might be letting themselves in for when they innocently ask 'How are you ?'. Then I realise I'm boring & force myself to ask about them, when really I DON'T CARE. What a horrible person I've turned into. Have you ever done this though ? People phone & ask how I am, & I tell them I'm absolutely fine, so they don't phone so often, so then I cry cos 'nobody cares'. Stupid eh ?
I definitely think you should ring BCC, but try not to be so hard on yourself. Of course all you can think and talk about is your cancer because it is just a huge worry and burden to bear. I'm sure that all of us in this situation find it all consuming, I am only sorry that your Friends don't realize this. But as you say, this a fantastic place to make Friends and and find support. It is only recently that I have been starting to try and get my life back to some kind of normality (What ever that is!) and I was Dx a year ago, so I think it all takes time.
And why shouldn't you feel envious of people who are going away and having a great time, I bet we've all felt that way at times because we'd much rather be doing that than going through this c**p! So do't feel guilty about those feelings. It's just a shame that other people can't be a little more sensitive and thoughtful about what they are saying. You sound like a lovely person and quite frankly I think your Friends are silly to risk losing the Friendship of someone who is so thoughtful and is going through such a difficult time!
Keep posting here because you have lots of Friends here who really do care about what is happening with you.
Be kind yourself,
Love Esme x
Hi Welsh girl,
I'm glad to see that you're getting good support from your fellow forum users and would echo what annys has said, do phone the helpline here and see if they can put you in touch with any support groups in your local area. Calls are free, 0808 800 6000 open M-F 9-5 and Sat 9-2.
I have also put for you below the link to the area of the website that talks about BCC's Peer Support service which may be of interest to you.
Take care and I hope this helps.
Can I just say a very big thank you to all the people who have taken the time to share with me and offer some directions I could pursue...
Your concern just makes me cry! I do have support but it's nothing like you have shown. I wish I could bottle you all up and let your warmth flow when I needed it....which might be all the time at present!!!
Have tried to keep busy and made myself visit someone worse off than myself but when I returned home all the emptiness returned!
I take anti-depressants anyway, have been in touch with my counsellor (but she's off sick) and tried to plan a better week by listing just little step activities to try and convince myself that I do have a life but underpinning it all is the realisation there is no one really there for me!
Friends and family are there but don't really want to know the details of this, they just want me to be better...
I'm just so bored of being ill and weak over the past seven months and without a routine, so my life has just become full of medical details and new cancer knowledge that I only have ONE topic of conversation!!!
I must bore everyone to death even though I try and inject some humour into it!People don't want the details so I ask about their lives and they seem to have exciting travels and interesting meetings which I can't help but envy. This envy must come through my eyes and I just know 'I'm turning into a miserable old cow' but as I'm uninterested in their lives they probably feel the same through fear and naivety about mine! My friendships are strained because I'm expecting too much! I think this time is difficult for everyone involved and THAT'S A FACT!
Obviously,I've got to and I will,get through this and I have to accept some times will be very tough emotionally and no one is a mind reader!!! However you magical people have an extra sense of understanding which is amazing to receive.
I,unfortunately didn't read these posts over the past couple of days because I was too frightened to find out if anyone was interested....
I should have had more faith. It is possible to feel alone even here if no one responds.... so I will go through your posts again to check whether I can do more to safeguard my fragility.
A local support group would be a joy to find!
Speaking to like minded people,like yourselves,who are going through this may well be my route through this nightmare!!!
Thank you again to all of you who gave me the benefit of your experiences. There's some really wise women out there and you're part of that special group! I'm so glad I've met you.
Welsh girl xxx
Hi there Welshgirl, how are you feeling today?
I forgot to mention that I’ve been enrolled in a breast cancer rehabilitation course in my local hosp- not the hosp I had my surgery in. It’s a 4 week course run by breast cancer care and covers topics such as: avoiding or coping with lymphoedema, emotional and body issues, diet, fatigue, exercise, returning to work, I start in April and I’ll let you know how I get on. My BCN booked me in. Maybe you could ask your BCN if there is a similar programme in your area, and then you could meet people who might be in a similar situation as yourself. If your BCN is not able to help maybe you could contact breast cancer care to enquire about their passport to rehabilitation schemes, as their phone number is on the bottom of my leaflet- 0808 800 6000. Good luck with your research, should you decide to follow this up.
Try to stay positive if you can. We’re all feeling for you and YOU WILL GET THROUGH THIS.
Hi Welsh girl,Sorry hear you feel so isolated.I know its hard but you need to say to people that you are finding it hard.Its too easy to say "I am fine thanks" to people who ask how we are doing.I started replying " I am getting there" instead.Maybe think of an answer in preparation as its often automatic to say I'm fine.
The other advice I can offer is to post a thread on here to see if there are others in your area going through treatment,as only those going through BC really understand.
Love n hugs
oh Welsh girl, I do feel for you. As someone with a partner I have to say though that our own arrangement is far from perfect and I'd be surprised if the stress of BC doesn't cause even the most ideal- sounding relationships to go awry at times. Nonetheless you are in need of support and I hope you are finding friends here and keep posting, and NEVER feel guilty about feeling vulnerable or low or wanting help. You have had a cra*p time of it, and there would be something strange if you didn't react in some way. The stress of BC is something I underestimated, and I still sometimes cry at the most unexpected times. There is no-one who understands your feelings as well as those who have gone through or are still going through the same highs and lows of breast cancer (maybe that should read the lows and lows), and there is always someone on this site who can relate to how you feel. I do agree with others that you should voice your worries about coping to your own doctor as well.
Just another perspective on 'going it alone'.... I had some support from friends during the diagnosis and op stages but by the time it came to rads I was pretty much on my own. I coped just fine on public transport and have to admit that once home, after treatment each day, I was jolly glad to be on my own and able to do as I pleased! Sleep and/or rest when I wanted, eat what and when I wanted with nobody faffing about.... Maybe I was lucky that it was fairly straightforward and easy for me....just hope that it is the same for you.
I am sorry to read you're having such a tough time at the moment. As the other forums users have mentioned BCC do offer services which you may find helpful. The peer support service is a telephone service that aims to quickly put you in touch with one of our trained peer supporters, who has had a personal experience of breast cancer. They are ready to listen, offer skilled emotional support and share their experiences and understanding.
We also run a live chat session every Thursday evening form 9 to 10pm where you can talk in real time on line with others who have a diagnosis or breast cancer. If you would like to join on Thursday just click on the live chat link on the front page of the forums.
For more information about these and our other support services avaialble, please telephone our helpline on 0808 800 6000 (Mon-Fri 9am-5pm and Sat 9am-2pm)
I hope you find this helpful.
Sam (BCC Facilitator)
Hello there welsh girl, take heart, there are some of us that live alone on the site, me being one and it IS really hard to ask for and accept help, i am lucky that i have great friends and one of my sisters is being spectacular, not that the other isnt,just she's really in tune with me.......
Sometimes i do wish there was somebody special at home with me, maybe in the wee hours when i sometimes lie awake thinking and sometimes to make me a cuppa and hand me the tissues....those small moments.
BUT equally i am counting my blessings that i do not have a rotten/selfish/unthinking partner as i would rather be where i am now....small mercies eh?!
Rest assured us gals are in this together, send a PM if you want to chat more,
Hi Welsh Girl
I can so identify with you, I also live alone & find asking for help almost impossible, & understand that 'beholden' feeling also. I had 6 chemos after my lumpectomy, was on my own for the first one, didn't really know how it would be, & have never been so ill in my life. The one person who came to see me got cried all over, but did convince me that I would have to tell my grown-up children that I needed help. I have a son & 2 daughters, so each time after that 1 of them came to stay for a few days, & I am grateful, but when they were here I'd have to ask for anything like hoovering/washing to be done & felt awful, so ended up not asking, & having to catch up when they'd gone. For my 25 rads I was very lucky, in that 1 of the ladies who sings in choir with me decided 25 trips could be done by 5 drivers on a rota, which she organised & then told me about. That is a true friend. I might have thought of the idea but could never have asked the people. However you should definitely ask about transport. My onc had told me right at the start that it could be available, & at hospital I met loads of people who were using it. It was really friendly at hospital as the others have said. Usually appointments are around the same time every day, we used to have a wee 'side-effect swap' in the waiting room.Please let me know how you get on, you can email me if you want. I know what it's like to feel alone, never used to cry as much this, & don't think anyone really wants to know, it's more comfortable for them to think I'm fine.
Hi Welsh girl,
Sorry to hear you are having to cope with this on your own, it cant be easy when you have to do this stuff alone , definately give your hospital/rads dept a call as they can arrange hospital transport for you , often the transport picks up a few people each day for treatment and you may well find that you will travel with the same people most days and get chatting and make new friends , it always nice to have company for support and there will be lots of others alone too i expect so the transport may help with that.
I know when i was haveing Rads i would meet the same people everyday and we all became a realy friendly bunch in the end.
Rads treatment is fine so dont worry too much about that , it only takes a few mins, its just a bit of a pain going everyday, i had 23 sessions but surprisingly it went by pretty quickly.
And yes BCC can offer peer support also so mabe give the helpline a call as they may be able to put you in touch with someone in your area.
You take care and always remember your not alone as there will always be someone here to offer help support if they can.
All the best
Sorry you are feeling so low - but be kind to yourself - you have had three ops in the last seven months- this alone will knock the stuffing out of you.
Do not panic about the rads - you will feel very tired afterwards -probably,but it is nothing like as bad as the ops (or chemo). You will be fine on the bus. I met some lovely people in the rads queue -and believe me there is A LOT of hanging around.- they kept me going.
Go and see your GP if you are really down - I resisted anti depressants for ages thinking I could manage but I couldn't , they have made a big difference.
Hope things improve soon
PS the ladies on the help line are good too. and do you have a local support group to meet others who are going through the same treatment as you?
Hope you're feeling a little better today Welsh girl. I have also used the breastcancer care helpline and spoken to someone for 40 minutes who really helped me at the time. That's another option you could consider. Hope all the ideas voiced here by others help you too. Take care
xxx Annys xxx
Hello there, we do all get low patches and they are difficult to get through, but there is help available.
I agree with mummytumbles that seeing your GP is a good idea, to talk about ways to help you deal with the emotional impact of this, and checking with your bcn about local support networks. Also check at the hospital where you are having radiotherapy, there should be patient transport available.
It might also be an idea to check on this forum to see if there is anyone near enough to where you live to be able to keep in touch, and also, BCC do a good peer support service.
I also think its maybe worth talking to your friends and telling them that you are feeling low, put yourself in their position, I'm sure you would want to support them if they were in yours (my psychologist gave me that advice and its good)
Most of all, be kind to yourself and remember that this illness has an emotional effect on most of us and we need (and deserve) support. I see myself as a positive, strong and cheerful character, have a huge family of siblings and live with oh and 2 grown up children, and have good friends nearby, all of whom are very supportive, but I also see and psychologist (thro' BCN) and am on antidepressants. I feel that its very important to use whats there to minimise the impact of this, and to be realistic about how you are doing and what you need.
You come across as a caring and appreciative person, I hope things soon start to feel a bit brighter.
remember there are always people here for you
love, monica x
Croeso welsh girl
so sorry to hear you feel so alone and abandoned at the mo - I also have no really wise and profound comments to make - but do phone the girls on here and do see your BCN - yo may be eligable for hospital transport.
Eqally to feel so down may mean that you are slightly depressed (after all it si perfectly natural after what we have been through)
See you GP.
I know this means yo have to do all of the running but it may help to do something.
sending you best wishes xxxxx Rachel
I'm sorry to hear that you are feeling so low at the moment. Afraid I don't have any wise and wonderful words to help - but empathise with you. Perhaps you've just hit a bad patch, we all seem to get them, this IS hard work 😞
I was diagnosed 7 months ago and have had two lumpectomies and a final mastectomy 4 weeks ago,with various complications along the way. I am on my own with only one close friend nearby, I have other true friends but they all live a real distance away.
I have problems asking for help and feel beholden when I do accept. At every hospital appointment someone has offered to come with me and take me into hospital three times and even visit me when I was in hospital for a while. I gladly accepted every time and was so grateful.(I have bought so many gifts and meals to say thank you!) However, my last appointment was for my results after mx and I had to go alone on the bus because there was no one! I really didn't cope very well and cried all over the BCN after being told I need radiotherapy.
This episode highlighted how alone I am.
I e-mailed friends and family later and so many of them said, 'at least it isn't chemo!' and although I am eternally grateful I don't need chemo as my nodes were clear I did feel unheard.
The phone calls of support have ended as I sound strong on the phone and they have nothing to say when there are no actual details to relay. I sometimes think they feel I'm over it now and rads are nothing!
So I'm going to be on my own as I recover my strength in the next weeks and I'm going to have to face each rad treatment afterwards on my own, going on the bus! My local friend may offer to accompany once a week (as she visits me now)and I've had 2 offers from family (who live a long way away) who will definitely come but probably only once out of the 18. I must sound so bl***y ungrateful to those people who are offering but I'm really really worried as to how I'm going to cope on my own.
Here, on the forum I read of so many women with supportive partners that I do feel jealous. I'm a bit of a fragile creature even before all this happened and I have been really well supported during this journey but now I'm getting better people have fallen away and I wonder how I'm going to cope on my own,and during the period of radiotherapy when I will be even weaker...
Has anyone else been in this situation?
Should I speak to my BCN yet?
Or should I just pull myself together and get on with it?
I feel so sorry for my friends as they are suffering from compassion fatigue after 7 months....
I never ever thought it would go on this long!!!