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Talking to people

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Re: Talking to people

Unbelievable! The local do-gooder has just messaged me to say that now she hears that I am better, she would re-consider taking up my earlier offer to make soup for local drop-in-centre.

I'm afraid I have replied on the lines that I wasn't aware BC was contagious! 

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Re: Talking to people

Hi. Well I stayed up to watch the fireworks on BBC1. Spectacular though the music did nothing for me. Until Auld Lang's Syn at the end. Had a little cry and thought to myself "flipping heck girl, you made it through a hellish 2019; be glad and be bright".

Weirdly I woke up this morning feeling 'glad & bright'. More than can remember in 8 months. So maybe some kind of 'closure'?

I get what you say about confidence Lucy. I lost mine. I'm pretty articulate written-word, but in physical person, I'm very different. Guess that's a combination of this forum allowing you to be yourself, in contrast to rest of the world expecting you to return to who you were, before you are ready to.

I'm not vain, but I fret that my hair is thinning ( Tamoxifen) and the obvious fact that I am 'wonky'. The prosthesis evens things out, but I hate the feel of it. I feel guilty in a way moaning, I didn't have chemo so my hair woes aren't as extreme as others. Also I had a lumpectomy ( not mastectomy) but I did lose about half of my boob. I guess because I'm small, so by the time he'd got the tumour out and the lymph nodes out, he had much less healthy tissue to sew back together neatly. He did an amazing job and I will always be grateful because the bottom line is he saved my life ( highly aggressive tumour, caught in nick of time).

It's so hard to figure. I suppose that when you are in the worst times of diagnosis and treatment, it is so completely consuming that when you get through those dark days, you almost have to learn how to be part of the normal world again. And that takes time and effort, which I guess some people don't realise. I was told you need a full year to come back to the person you were, basically get the trauma of it out of your system. It makes sense from where I feel I am. So maybe when we say "be kind to yourself", we really mean" be patient with yourself". I presented to my GP in April and her exact words were "prepare for the worst and you need to be fast-tracked". The only analogy I have ever come up with that makes any sense is that I was a hostage in a terrorist attack and I might, or might not get out. Yes, I got out, I'm alive. Yes my 'physical injuries were doable' but I didn't leave behind the pure terror and panic, that has taken much much longer than the time for surgery and rads 'damage' to heal ( still healing). But the memories are fading, gradually and it is gradually getting easier. No leaps & bounds, just tiny baby steps. 

And I guess I have learnt to compartmentalise my life; I've told work colleagues it's a taboo subject and to please treat me as they knew me before it happened. Not taboo with friends but we have a good balance on the subject, it is just natural weave in chats, may or may not come up. 

So the deeper thoughts, they go on here, as that seems to work best. 

It's a fantastic support, knowing you can log in 24/7 365.

Hugs to all. Wonky. X

 

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Re: Talking to people

 
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Re: Talking to people

Hi Lucy. It is totally your call if you let this thread run out, or alternatively keep it going. But I'm glad you have said you find the forum an easier way of 'talking'. 

I have found it incredibly helpful; I think it is 'a safe place' where you can just get stuff out of your system, and however disjointed ( or in my case demented) what you are saying may seem, there is always someone who posts a reply which makes you think, "hey, someone gets this". 

I truly think it is the best way of working things out in your head, though of course it is far from the only way, there are loads of other contact-points available to us all.

I think that there is a misconception that surgery somehow is closure and 'job done'= 'normal life resumes'. I think most on the forum agree that is not the way it is, and the surgery is just one hurdle. Whether chemo or rads follow isn't relevant ( in the context of this discussion)  in contrast to what a woman has to come to terms with, overall.

I lost a friend of 30 years, because she was adamant that surgery was the end of the matter. I was desperate to talk my feelings out, but she point-blank refused to entertain that. Had I been admitted to hospital for an ingrown toenail, I would have seen her point. But the truth was I was admitted for an operation to save my life, and that was very, very scary in itself. Not that that matters, this thread is about you.

Pawsome is spot on. Don't beat yourself up, be kind to yourself, you've been through an exceptionally distressing experience.

With a wonky hug and it goes without saying I wish you contentment and comfort in your life in 202O. Don't be a stranger. Wonks X 

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Re: Talking to people

Lucy - the most important thing is to be kind to yourself. I was 26 when I got my primary diagnosis and it took me years to get my head round it properly. I just didn’t realise it at the time. So make sure that you take time out to heal yourself even if you’re not on active treatment.

 

A lot of people just don’t understand cancer and yes like people have said they think that once you’ve had you’re treatment that it’s like someone has waved a magic wand and you’re all cured and ready to move on with your life and put it behind you. If only things were that simple hey! 

Even in my case, just last week a relative said they couldn’t believe how well I look and said ‘so you’re alright now then’. This was a statement rather than a question! Clearly not understanding the situation at all!  But I choose to put that down to just a lack of understanding and I don’t let it offend me - it actually even made me inwardly chuckle. I find dealing with things with a bit of humour is a good way of breaking the ice. I didn’t put him right as it wasn’t the right forum - just a passing comment really and no time for a complicated in depth reply. 

But the important thing is not to let other people make you feel awkward or misunderstood. You have dealt with a massive thing that has had a huge effect on your life and if you want to talk about it with people then you should be able to. Equally if you don’t want to talk about it that’s ok too. Xx

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Re: Talking to people

 
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Re: Talking to people

Hi Lucy, you have posted lots of lovely comments/ hugs in response to me, so I feel so sad you feel as you describe. HUG. You have had some great replies already ( God bless this ship and all who sail in her!) but can I add....

Do not allow yourself to think that your BC is somehow your fault and so it's your elephant. You didn't pop over to Africa and bring the elephant back into your family's life. That said, neither did your family go off on safari.. This is an elephant which just arrived unexpectantly one day. 

My tack is I offer to talk about the BC openly, answer any 'burning questions' even in some circumstances give a look, at the dodgey boob. Some go with that and it seems to satisfy their 'morbid curiosity' some don't but that works too as you then know they can't deal with it. You HAD to deal with it and did so with great courage. Your 'coping strategy' is perfectly fine. It is 'other people' who don't know what to do/say, because they haven't had first-hand experience of what you have experienced ( as the BC patient). 

Wonks X

Community Champion
Community Champion

Re: Talking to people

Beautifully put jaybro ❤️ Lucy sending ❤️👭❤️ And little steps ❤️ Some people don’t know what to say and others are Right out of line, you should always expect the unexpected of people and also expect nothing off people you can just be you and you my lovely are blooming amazing and beautiful ❤️ Step by step and in your own time 💕💕shi xx

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Re: Talking to people

Hi Lucy

 

You’re right in your understanding of your guests’ silence - people don’t know what to say and don't want to rock the boat either with probing questions so the elephant hangs about, some aware of it, some oblivious. Part seems to me to be because of our abject fear of the mere idea of cancer, part is self-preservation (not wanting to have to think about uncomfortable things) and part is a wish to protect you, give you some time off. For me, the most upsetting part is a fourth: the belief that once treatment is finished, that’s it. Illness gone.

 

I think it’s only when you’ve been through it or lived with someone going through it that you begin to appreciate just how pernicious cancer is in affecting every aspect of your life. Things can never go back to exactly as they were and it’s hurtful when people can’t see this. When I first joined this forum, I was shocked at comments about losing friends, finding out who your real friends are etc. I now understand and see that a gentle cull is necessary where friends have repeatedly failed to respond to my efforts to re-educate them. This includes one who even took me to a chemo session and sat with me.

 

Like Pawsome, I try to bring the subject up if visitors haven’t asked how I am - a flippant comment about my rampant chemo curls is an easy way in to a simple comment about how I had no idea that there isn’t an aspect of my life that hasn’t been affected. Of course, you need some specific examples and hormone therapy is equipping me with many! However, like you I was unprepared for the sense of exclusion or irrelevance that silence brought. I think we need to ‘fight back’ against these assumptions that lie around cancer. It doesn’t need to dominate conversation but it’s not a subject to be avoided. I hope you have better luck with your next visitors! Meantime, remember, it’s not you; it’s them! X

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Re: Talking to people

Hi. Yes I find this is how most people are - they don’t mention cancer and your treatment unless you bring it up first. I found this with my primary diagnosis and also I’ve recently been diagnosed with secondaries. Over Christmas I’ve met up with lots of friends and family who I don’t see that often and I find most tend to ask how I am but that’s just the standard polite greeting that you say to people when you first meet. Of course the anticipated answer is ‘Fine. How are you?’. I think it’s partly because people aren’t sure what to say but also I think most people wait for you to bring it up in conversation as they don’t want to upset you or say the wrong thing. Personally I don’t always want to talk about cancer so that suits me fine. What I do is if I want to talk about it I just bring it up in conversation. I tend to be quite factual and straightforward about it and if I bring it up early on then it kind of breaks the ice x 

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Talking to people