'She means well' (just keep saying it to yourself!)

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I can’t find the ‘What not to say thread’ but I just have to share a few recent ‘words of wisdom’ that well meaning friends have imparted to me recently which sometimes left me in sheer disbelief or at worst, really angry.

I am currently receiving another chemo drug which appears to be failing. I know this because my cancer is very visible - put it this way, I don’t need scans to tell me if lumps are shrinking or growing. I also have a brain met.

Strike 1: When explaining to a very religious friend who had been praying for me, that I was very sorry to tell her (I was concerned about HER feelings) but the cancer was still progressing, god may decide to heal me in the future, but he certainly wasn’t now. She said ‘perhaps you’re not open to recieving healing. When I was having problems with my hubby and my prayers weren’t being answered I realised it was because I wasn’t behaving the right way’. Yes, thats right, ITS MY FAULT cos I’m a bad person! What about murderers and dictators and all the other evil people in the world who seem to live long happy lives???!!! I told her (in a very calm way) that I was not to blame for my cancer. Nothing I was doing or not doing was causing it to kill me.

Strike 2: My cancer has paralysed my facial nerve and to most people it probably looks like I’ve had a stroke (in fact some people have likened it to that… to my face…!). Anyway, as a result it affects my eating and speech. The worrying thing is that the other side has started to head the same way and I was expressing my fears to the same friend and telling her that I cope with one side but I was worried I would’nt be able to eat it the other side was paralysed to. To which she answered ‘Yes, but you’d still be able to eat through a straw wouldn’t you?’ Thank goodness I have her to solve all my problems! I told her (again calmly) that, sorry but to be that just wouldn’t be something I could accept easily. Thats like saying to someone whose lost their legs ‘thats ok, you’ll be able to get around in a wheelchair the rest of your life - chin up!’

Strike 3: During the same conversation when I was just generalsing about how sad I was that I was slowly getting worse she told me ‘it doesn’t have to be awful’. (I too wondered exactly what she was talking about). Her stepfather died of cancer in a hospice. She continued…"richard was so peaceful at the end, in no pain and he just slipped quietly away…and he was a horrid man’.

So, a) even bad people (like you becky) can have good deaths. and b) so thats something to look forward to almost!!! I told her (again in a calm way) that I’m not scared of dying per se - yes pain can be controlled - I’ll probably be so drugged up I won’t even know about it. What I object to is that I’m 35, I have a 7 year old son and and its bloody unfair!!!

Strike 4: Another friend (who knows what I’m going through on a daily basis and is often very good, but then will pull the rug from under me) text me one day to ask how I was. I replied I was feeling good except my neck was particularly stiff (my cancer is in my neck, head and shoulders and I have daily discomfort). ‘Oh well, mustn’t grumble!’ Was her reply! Well If you don;t want to know - don’t bloody ask! As it turns out i grumble very little considering the amount I have to grumble about.

Strike 5: I am only 35 and was fairly pretty up until 6 months ago when my face blew up like a balloon on one side, became paralysed and my hair fell out! I don’t mind admitting that it has affected my confidence pretty badly. People stare yet won’t make eye contact and treat me differently. Anyway I was telling my mum (who bless her has supported me wonderfully for 7 years since diagnosis) how much I hate it and she said ‘well, we’ve all got used to it’ in a matter of fact tone along with a shrug of the shoulders. I know she was trying to say it doesn’t matter, we all love you just the way you are. But I thought 'oh, thats allright then… as long as YOU can all live with it thats fine then!!!

A final one which even I had to laugh at:
I popped into work to see colleagues who i hadn’t seen since before my face ‘went’. I glammed myself up, was having a ‘well’ day and felt pretty good. They had been warned about my face thanks to regular email updates and I have to say they were all fantastic when I saw them. The were genuinely pleased to see me, didn’t appear shocked, joked with me and paid me compliments. It wasn’t till I was on my own with a male colleauge and good friend when I was talking about my face and he was being very kind and saying i was still gorgeous, then he held up his had to shield one half of my face and said ‘if you do that, you wouldn’t even know’. He mean’t well!

Well ladies, there are many more where that came from, but I hey - musn’t grumble!!!

So when people say stupid insensitive things, smile sweetly, bite your tongue, sigh inwardly and repeat to yourself ‘they mean well… they mean well…they mean well…’

Bex xx

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Hi Bex

I think “What not to say!” has dropped down to about page 3 in the bcc charts! Never mind, we will just start a new one - it’s obvious there’s enough material to fill another thread.

I just wanted to give you a hug when I read some of the things people have said to you. You are quite right though - they mean well but why do people feel the need to make a joke at our expense??

It has made me wonder if I have ever said something crass and insensitive to someone going through a difficult time.

I have already posted on the “What not to say!” thread so I won’t bore you again with my experiences.

Sending you a big hug
Maude xx

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HiBex.
I just donot know what to say… speachless. It is a beautiful day here sun is shinning and i hope it is there same there. People can be so B… un feeling.
Sending you a Huge Hug…

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I can only imagine it’s some kind of fear which makes people determined to look on the bright side on your behalf - thankful too that it’s not them in your position and trying to make you feel better by hoping it’s not as bad as it seems…

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Hi Bex, Sometimes I feel when people ask me how I am they are not really interested to know the answer, so when I am asked how I am I now reply " Mustn’t grumble, nobody listens anyway"… I have bone mets and at the moment the pain is under control. But earlier this year I was having what I call “episodes” when the pain is totally unbearable. It starts in my back, but radiated down my arms and thighs and is so painful I have taken oramorph 5 times and it still did no good. I couldn’t walk, sit, lie down. I would pace the floow with tears streaming down my cheeks. The point is people don’t see me when I am like this ( apart from my husband and daughters) so when I do go out it was usually on a good day and I have made the effort to get up and dressed. They didn’t see me after I had a shower, when I needed to sit for a while on the edge of the bed before I could even get dress. But always people would say, “Oh but you look so well, no-one would know you were ill”…But the best was from my Dad, bless him, only thing was he was on the end of the phone after I had a particulary painful stressful day at home… when he asked me but why is your back sore, what have you been doing? I blew it…first time ever…and replied." I haven’t been DOING anything I’ve got bloody Bone Cancer"…oh but I did apologise later to him. But what people say does matter doesn’t it. Love Val XX

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Forgot to add Bex that you need to ditch that religous “Friend”??? You would be better off without her. People light candels for me and I joke with them please keep lighting your candels for me coz it is obviously working" and I mean it…but I cannot STAND people who push there beliefs onto you…and those religeous ones are the worst. XX I hope I haven’t offended anyone…but it is not for me. Val XX

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Hi Bex, I too have a religious friend. She proudly presented me with wrapped gift. I shook it and thought " oh goody a fancy shaped bottle of Vodka" errr no! It was a Mary shaped bottle of holy water from Lourdes. I just saw the funny side and cracked up. She couldn’t see the funny side at all. Amazing that eh? Maybe I should have downed it anyway hehe!.
Then there’s my sister lives 2 streets away. Haven t seen or heard from her since I had the op, 3 months ago. Suppose If I look on the bright side i cant complain about anything she has said LOL !
So do we forgive and forget ? Or just put it down to ignorance?
Some folk eh? xxx Rita

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Hi Bex,
I just want to say how admirable I think you are not to fire off a couple of salvos or poked people in the eye! I so agree with Val that you need to ditch your ‘religious friend’ thats not faith talking - sounds more like self satisfaction to me.
Just how much imagination does it take to see that someone who is 35 with a young child deserves better than claptrap? I wonder what she would say if you challenged her with ‘are you saying that you feel I am responsible for this?’
I will be thinking of you
Monica xxx

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Oh Bex like Monica I too admire your self control…I’m all for poking eyes!
There’s a piece by Dr Peter Harvey I thought of when reading this thread…if anyone wants a read I’ve pasted it here…Love Belinda…x

Regaining trust in the outside world

You won’t need to be reminded just how helpful a kindly word or supportive act can be. Likewise, you will need no reminders as to how hurtful and insensitive other words and comments can be.

We have already quoted one phrase which could be classed as not only impossible but unhelpful and insensitive as well - trying to ‘forget all about it and put it all behind you - move on’ (see Getting back to normal).

This, of course, is often just what the person saying it to you wants to do and it can make for significant difficulties in communication if you want to talk about your worries whilst they want to act as if nothing has happened. Although it is important to acknowledge other people’s fears and anxieties which often provoke overly optimistic or excessively reassuring statements, it doesn’t make them any easier to bear or tolerate.

It is quite probable that you will already have developed a mask that you put on in some situations in order to hide some of your real feelings. Most people need to defend themselves against the unwittingly hurtful or the crudely insensitive remark. Many of you will have learned to smile sweetly as someone says brightly to you "My, you look really well’ when you actually feel terrible.

There will be times you will need to keep this defence going because people will still say unhelpful things. There are people who catastrophise for you…“I really don’t know how you cope. If it had been me I’d have gone completely to pieces” ; or those people who know someone…“My auntie/uncle had what you’ve got…they died of course” ; or people who tell you…“look on the bright side… there are many worse off than you” ; or people who tell you (or order you!) that “You must be positive” (see On being positive and thinking positive); or those who completely ignore you, saying that they thought that you probably had enough on your plate of that “I didn’t know what to say”.

You may well have you own horror stories which will leave their own mark on you and your future relationships.

Re-instating you social network - or re-configuring it - can be a difficult task. How do you feel about those people who left you well alone during your treatment? Do you want to start over again with them? What about those people who - perhaps unintentionally - hurt you with some of the things they said to you when you were struggling?

What about your fellow patients with whom you may well have shared some very close moments during your treatment - do you want to keep up a friendship that might remind you of those difficult times? There may be people around you who, in their anxiety to be helpful, actually get in the way of your recovery by doing too much and rather over-protecting you. Their offer to put the kettle on to make a cup of tea might be welcome but it can also undermine your ability to regain the ordinary. Putting on the kettle may be a symbol for you of regaining confidence and trust in yourself and may also be the limit of what you can do.

Over-helpful people may not be as supportive as they imagine! Perhaps the way to deal with this sort of problem is to be quite-direct in asking for what you want - not allowing them to give you what they think you want. The best sort of support seems to come from those people who ask you the question “How can I help?” and who are prepared to follow your request.

There is no easy or universal answer to these questions and they are decisions that only you can take. You may not feel able to confront these things right away - especially if it might lead to conflict with friends and loved-ones. But there may be a time when it does have to be dealt with if your feelings become ones of resentment or having been let down by people who you thought that you could trust.

People have often said that they find out who their real friends are during treatment for cancer. You do not want to add to your burdens by having to pretend and act as if nothing as happened when you meet people who have not given you the support you feel you need or deserve. So it may be that you have to be very straightforward with some people - and may even lose a friendship because of that.

These are not easy decisions to take and they may require a great deal of thought and discussion with trusted confidants before you commit yourself to doing anything.