Looking for someone who understands me!

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1

Hi,
I was diagnosed with BC (DCIS) Grade 2 ER8, PR8 T1(12mm) in January this year.
Went through two surgeries (one lumpectomy + 5 lymph nodes and other to remove a second satellite focus).
Currently I am in the week 2 after my 5 out of 6 FEC chemo session. Every time when I go to a chemo my response to the medication is different. Although I should be cheerful about the idea of having my last course, I am definitely not looking forward to that.
Still have to endure 3 weeks of Mon-Friday Radiotherapy booked for October.

I have been following the discussion group but never had to the guts to write here… When I started reading other people’s experiences I started feeling sick just to remember my own experience and emotionally drained.

Today I am writing here in the hope that someone out there reads how I feel and truly understands me.

Came to UK six years ago and most of my relatives are in Brazil.

I feel very lonely now that my mum’s gone and I am left with my husband (no children).

Unfortunately I don’t think he understands the situation and neither the friends that still contact me (some of them that I regarded as close friends vanished). They try to be supportive but I don’t know if I am over sensitive with all the circumstances or if they have a distorted view about me and the cancer.

They always come with : ’ You are strong, you are doing very well. Soon it will be over’ talk. And it could not be over from the truth. I feel really low and lost!

Some (including my other half) are also questioning why I am not working ! I can barely go for a walk to the library without feeling knackered.

Today I went to the High Street to buy some goods to cheer myself up wearing my wig. A group of teenagers passed through me staring and giggling. I felt awful and ran to the bathroom to take off my wig and put a scarf on my head.

I came back home and I cried and cried and cried. Cried for the people I felt I knew and now they seem to live in another world apart from mine, cried for not having my hair and because I had this stupid idea of wearing a wig that strangers laugh at, cried for taking the decision to be so far from my birth land and cried for the uncertainty of the future (marriage, career, pregnancy, etc)…

Thanks for reading up to here!

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Hi helenvs

Firstly, may I welcome you to the forums where I am sure you will find lots of help, support and advice.

Whilst you are waiting for replies, I wanted to advise you about our helpline services which I think you may find an excellent support. The helplinenumber is 0808 800 6000. If you need to talk anything through, seek advice or just need someone to lend an understanding ear do give them a call, it really does help to talk and they are very happy to listen. Alternatively if you prefer you can use email: <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>

I do hope you find this useful.

Kind regards

Louise
Facilitator

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Oh Helen

You do sound so low and can understand why. Having cancer is horrible, but to be away from your own country and no mother is awful. I lost my mother years ago and would give anything for her to be with me now. You must make it clear to your husband that you are in no fit state to work at the moment. If you did try, you would wear yourself out and be much more ill. As for the nasty sniggering teenagers, I dont know what we can do about them. I dont think they realise how hurtful they are and it was probably the last straw for you. Have you found out if there are any other women with BC in your area? Your BC nurse maybe could let you know if there is a support group. I think at a time like this, you are so much better off with people who know exactly what you are going through. Friends and family, even when they try, often are at a loss what to say or do.

However, these forums are a very good start and you will get lots of support from other ladies on here. If you say which area you live in, you may find someone on the forum who lives close. A lot of women have met up through these forums.

Kind thoughts

Cathy
x

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Hello Helen,and welcome to the forum that we all wish we didn’t have to join. I think the vast majority of our members understand and empathasise with your feelings, which you so eloquently wrote. I would think we could all have written as you did, of the isolation this diagnosis brings to us and the fear we have for our futures, no matter how young or old, although at 64 yrs old, I especially feel sad for all the young women dx with bc who have young children. Like you, I have no children, but thank God every day for my very supportive and loving husband. That does not mean he understands how I feel - men seem to be wired differently emotionally to women, and I sometimes think I am living in a parallel universe to him…

A lot of us have also experienced the desolation that comes when relatives/and or friends that we believed we were close to, seem to go off into the ether. It did upset me at first, but now I know who my true friends are and, suprisingly, how caring some neighbours that I barely knew, have both, both emotionally and physically. - particularly those who have had relatives or close friends with some kind of cancer.

I hope you will get the emotional support you need from us all on this forum - I didn’t find this forum until after I had finished surgeries, chemo and rads, but have learned so much (especially the bc language!) from some very intelligent articulate women, and men, who post. No question, trivial or otherwise, will go unanswered and I personally have learned more the forum than any of my doctors have told me…usually a “drip drip” attitude…do they think we all have an IQ in the 60’s? I sometimes wonder.

Perhaps now you have made the supreme effort in posting, you will start to feel a little better, and part of a cyber community that has walked in your shoes and really cares.

My new mantra is:
Yesterday is history
Tomorrow is a mystery,
Today is a gift.

Take care,
Liz.

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Hi Helen,

I was nervous about posting on here and took the plunge a few days before I started my chemotherapy and felt that as much as my boyfriend and friends were supportive that they truly did not understand what I’m having to go through. I am also not working and I was begging my office to let me work from home but thank god they didn’t because I am knackered all the time! I saw two friends yesterday and picked a friend up from work to have dinner with and I was ready for bed at 8pm! (I really don’t feel like a 24 year old at the moment!!!)… so I think being told about not working is ridiculous!!! Also, the risks to your health also need to be considered… I would suggest to your other half and those closest to you to maybe join this website to speak to other people supporting people with breast cancer so they can understand what other peoples reactions are to being close to someone with bc.

Also, the speech about you’re strong, etc etc is because people do not know what to say to you and because they want you to be strong… all you can do is say that you really don’t feel strong and ask for help. I think Cathy is right about finding women in your area to speak with… although for me talking on this forum has provided me the support I needed along with the support of my friends.

And finally… the wig… it must be hard, I know when I first wore mine I didn’t take a scarf or anything so that I had to wear my wig and I felt people looking but they weren’t… I doubt those kids were laughing at you but even if they were the best thing to do now is to go back out in your wig and keep it on no matter what… it’ll get easier.

I hope you find all the support you need here on the forum and I do understand that bc and having to deal with it isn’t easy but you’ve made the first step because it can be scary admitting that you are strong all the time (because non of us are!!!)… I spun my car on a roundabout and cracked the front, I’ve never had an accident since I learnt to drive and I could barely drive home and spent the afternoon crying and saying that I was useless and couldn’t even drive anyway… we all have these moments!

Good luck for your last cycle, I know you’re not looking forward to it but just think how far you’ve already come!

Erin
xxx

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Hi Helen

Firstly i would like to say welcome to the forums and we are all here to help you and give support. With writing on here you have already made new friends so once again welcome :slight_smile:

You do find out who your true friends are and like you i have also lost people you thought were close!!! Don’t let it worry you and just stay close to the people you believe in. I am also not working because i find it hard to find the strength. it is frustrating because i love my work and miss normality and seeing people. Don’t let that worry you. Take each day as it comes and think about getting better.

Be strong and keep us up to date on how you are.

Kirsty xx :slight_smile:

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Hello everyone,

Thank you so much for the welcome and words of support, much appreciated! What a difference it makes to find someone who understands and supports you for a change!

I guess my feelings are a combination of all the factors I told you about last time and to come to terms with all the changes ( specially for me) is taking its time… That’s why I slowly took my time to join this forum and also am reluctant to join a group in my area. To be absolutely honest, I met some ladies in the hospital on the occasion of my two surgeries and tried to keep contact but I felt uncomfortable to talk to the ones in a worst situation then mine (with the lymphnodes removed and holding the drain everywhere or that passed through a mastectomy) but even worse when I saw people recovering better than me (I know is mean but it is true) and thought how useless I was to be still not back to ‘normal’. My conclusion is that I wasn’t ready (or too scared) to face the reality!

Cathy,
sorry for my mistake but I have not expressed myself very well (language barrier!) when I told that my mum was gone in the heist to explain the whole situation. I meant that I had my mother with me in the first tow and half months and she had to go back to Japan for personal reasons. Sorry! I just wanted to say how much I missed her as she was the only one who from day was very supportive.

Liz, thanks for your support and mantra (I will bear that in mind!). You are right, this forum is a helpful tool to use. Although I just joined for discussion now I noticed and watched the other posts here to get some precious information about my treatment.

Erin,
yeah I should’ve stayed with the wig thinking back at the situation. I will try not to feel too insecure, perhaps it attracts more attention… Hope the damage in your car wasn’t great and expensive.

Kirsty,
Oh I love and miss my work too! And you gave a hint that perhaps probably because some know that I love what I do they are encouraging me to work forgetting about the treatment I am in !

Thanks again for your support and hope that everyone is getting better.

Looking forward to brighter days for all of us!

Helen
xxx

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Dear Helen

What you feel about yourself is more important than what anyone else thinks particularly teenagers who have hardly lived and are testing their way as adults in the world. It’s interesting how they all pack together at that age, probably far too self conscious to go out alone and make themselves vulnerable to someone laughing at them, with their acne, puppy fat and generally naive views on life. Sorry children or should I say young peopl but I remember how ghastly it was being a teenager. Look, if you did give them a laugh at least they had a good day. I quite like amusing people but it’s better if you do so on purpose.

Some wigs can look great anyway so why not get yours styled or get a new one you feel better in. A friend looks better in hers than in her own hair, at least she and her children think so. But they are in their 20s so past the yobbo stage.

Mole

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Hi Helen

I am so glad that your mother has only gone to Japan and not “passed over”! My mistake!! At least she will be there at some stage. I hope you are able to get back to work soon. You are so lucky to love your job and even going back for a very small bit at a time but help you feel better. I know there are lots of women on this forum who worked through chemo - I guess it depends what you do and how physically tiring it is. Mole is right, Kids have such low self esteem that laughing at someone else makes them feel better and makes them forget about their acne etc!!! I too think that some wigs are so realistic that unable to tell the difference. Spent many a fun hour in the radiotherapy waiting room trying to work out who was and who wasnt wearing one.

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Hie Helen

I am so sorry you are feeling like nobody really understands what you are going through ie friends and family. I think unless you have been in a situation can you truely emphthise with someone. I felt like you did when I was first diagnosed - friends and family meant well but I felt I was all alone. Like you when I was in hospital I found it difficult to talk other bc women on the ward. When I was due to start chemo I started attending the BreastCancer Care information days and met ao many women that encouraged and inspired me. I have been lucky and blessed to have met 2 particular women whom I have become very good friends with, whom we have gone through our treatments together and have been a tremendous source of support for each other. Its not only BC we have in common but so many other things. I know when BC is getting me down I can pick up the phone and these 2 lovely ladies I know they understand me and know exactly where I am coming from. Whereas my everyday friends find it very difficult to talk about BC.

If you you feel physically able to - go and attend the information days, you never know it might do you some good. I was scared of going out with my bald head after chemo and then I met a beautiful bald woman who was not embarrased and she embraced everything about herself and she inspired me to go out without my wig and I never looked back. I did get a few comments but I let it go and just focused on how far I had come and celebrated the fact that I am still here living my life - and that hair does grow back and it has.

You will get through this but remember you are not alone. This forum is a great source of support and when sometimes you just want to vent this is the best place.

Big hugs

Heather

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Hi there Helen,
Sorry you feel so isolated. When i was first diagnosed, I was also on my own - my mother had just gone back to Barbados after being here for 6 weeks to help with the birth of my second child. But my friends were very supportive, and quite a few of them are medical, so I was lucky.
What I did find was very helpful was that the Breast Care Nurse put me in touch with a peer counsellor - someone of similar age who had been thrrough it and had been trained to be a peer counsellor and support others. She phoned me regularly for chats and general support throughout my treatment and I found this very helpful because it was all about me and not about what someone else was also going through now. Having some one impartial to talk to was also good because then I didn’t have to feel I was making someone else feel bad or worry that i wasn’t as strong as they needed me to be.
Ask your breast care nurse or contact breast cancer care if you are interested.

Good luck with your last treatment.

S

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Like everyone else I feel so strongly for you . I have a relative who was asking me, just 3wks after my chemo had finished ,when i was going to go back to work!! I still had to go through radiotherapy .
Not everyone is able to cope with the wig, i just didn’t bother in the end the itch drove me potty.
I strongly agree with sofadoc, a counsellor helped me to deal with the relative who tried to make me feel as if i was just lazing around and needed a shove to get on with things. It isn’t easy when the doctors and nurses are telling you to rest and your family expect you to do just what you did before. Everyone is different ,a woman i went through treatment with was back at work 2months after her treatment finished, I didn’t go back till a year after treatment finished which is what I had been told maybe the case. The counsellor had to remind me that everyone is an individual and that applies very strongly when it comes to recovering from the treatment your having and when you’ll be going back to work if you choose to do so. I wish you well and hope that you don’t feel quite as alone as you did when you first wrote on here.