Who to confide with?

Hi Simon

It is  five years since my husband was diagnosed. He has undergone surgery ( twice) r/t.....endless scans, false alarms, real alarms....it is a hard road.

My husband is a very private person, so I  have not been able to say much about it to any mutual friends. He has a very small family, but they are completely unware of any of this ( they live  quite a long way away).

I have found that this forum has been very useful for saying the unsayable. I have been fortunate to find some friends with whom I can communicate through the private 'friends' channel, and that has beeen my salvation. Whatever you are experiencing, however dire it seems or however guilty you feel for expressing your thoughts and feelings, there always seems to be someone who has been there before you. And sometimes it is best to 'talk' to a stranger, someone who doesnt know  you - or your wife- personally; then nothing you say can come back to bite you!

Anyway, i am thinking of you right now.

xxxNiobe

@simon55 

Hi Simon

I am sorry I don't appear to be able to tag you for some reason.

As you're a member of the Carers only forum you will know that only people in a similar people to yourself can post any replies.

It is difficult to try and confide in close friends because you don't know how they will react it can be just as difficult to open up and confide in family members and you end up feeling surrounded by people but all on your own still with the same thoughts in your head.

Fear not Simon this Mac family you are a member of won't turn their backs on you but will listen to everything you say, you can come along at anytime and open up your heart to us, have a rant and rave and let off steam or you might want to talk about your day, everything is okay by us, we will give you advice if you ask for it but you're always assured of a warm welcome from the group who'll be only to willing to give you help and support, the carer members in this group all have different things going on in their life's but will always have the time to speak to you.

As  mentioned a really good way to communicate with others on a one to one basis and you can ask any of the members of the group if you can be their friend, why not make your number 1 by going to the top of this page and clicking on my name and you'll be taken to my home page, at the top you will see my name and below it add  a friend click on it and I will receive message and will accept your invitation.

You can talk honestly to me and any other member you befriend without any worries about confidentiality it really is one to one and no one else can join in the conversation.

 Give it a try

Regards

Ian

Thanks for that Niobe. Yes it is a very hard road. I read your profile and you’ve certainly had a very tough time. I really appreciate you taking the time to give me your thoughts.

Simon x

Thanks Ian. You’re quite right about how difficult it is to confide in both family and friends. But it’s also difficult to talk about personal concerns to a stranger however well intentioned. Maybe I’ll give it a try. Thanks for the tips. 

Hi Simon

Thanks for coming back to me and I do understand what you are saying about confiding personal concerns with a complete stranger.

Maybe we could define a stranger as the friend you've never met.

Have you spoken to your GP about your concerns as he/she should be caring for you at this time and giving you support.

We also have an excellent team who man our support line with the sole purpose of listening to you, and Simon they do listen and are very friendly and will possibly direct you to the in-house specialist team if your concerns are leaning towards anything financial or work related.

They can be contacted on 0808 808 0000

Every day of the week between 8am and 8 pm and the lines are open today why not make the call and see if they can help you and I'm sure that after listening to you they will give you some good advice and support.

If you would mention to them that the online community suggested that you give a ring as that helps them to find a direction for you to go.

I don't know if this would help but if you could open this link for the Maggies Centre and do a search to see if they have a centre near to you, if they have, and I do hope so, you can either pop in on them or give them a ring and see if you could make an appointment, at Maggie's they have trained advisers that you can talk to about anything and they will try and find a solution and help you.

It maybe that Macmillans will have a support centre near you and I can touch on that later but if you're ever up at the hospital with your wife do you know if there is a Macmillans information centre in the hospital, normally near the entrance, where you can drop into and have a chat.

I appreciate that everything I am pointing to you involves making an initial contact to a stranger, but they are only strangers the first time you meet them subsequent meetings will bring them closer to being a friend who wants to help and understand you, please take that first step to sharing your problems and concerns and maybe it will get you back to the real job of being a carer to your wife am I right in thinking you have a young child how are they coping.

Please keep in touch in anyway you want just like you to know that I am here to help and support you as much as you need me to.

Take care.

Ian

By clicking on the green text above will open up a new page for you.

Hi Simon, My wife was originally diagnosed with Kidney cancer and had surgery 3 years ago. She has recently been told it is back in several locations and this has led me to feeling very much as you describe - loads of family & friends and yet very much alone and lonely!  Like you I don't feel able to confide in family - they have their own worries to contend with and friends - well they are always there but somehow what I want to say is too personal!

I have found that joining this group has given me a safe place to open up and let out whatever it is that is troubling me at any time and I would encourage you to do the same if you fell you can. I am happy to listen if you feel you can talk to me at any time either through the group or by adding me as a friend. Either way please do not remain alone in this horrendous situation that we all find ourselves

Regards

Dave

Hi Simon, Shardc and everyone

My husband was diagnosed with kidney cancer 18 months ago, and had a radical nephrectomy. End of Feb 2019 his routine scan showed it’s in his lymph nodes now, and he is on Sunitinib. We have 6 weeks to go until his next scan to see if it’s working.

i can so relate to the isolation this new life brings. I do have some family and friends, but what I need, is the community of people with shared experience. I’m almost glad my family and friends don’t really understand, I wouldn’t wish this on my worst enemy.

Shoulder bump in solidarity to you all