Hi Jo,

So sorry to read your latest post but can fully understand your dilema.

When I was first diagnosed, even though my cancer was not anywhere near as bad as yours, I was really worried about telling Mrs B.for she has always been a worrier. She tries not to show it but bottles it up inside so I was more worried about telling her than I was about the cancer itself. But on the other hand I have always believed in honesty.

In the weeks before my cancer was confirmed, I was pretty certain It would be confirmed so what I did was after each appiontment, I increased what I told her to the point where before the point it was confirmed,I had prepared her for bad news as much as I could without saying the word cancer.

In the end, she took the news far better than I could have hoped for.She has since told me she just knew I was going to get over it. Womens intuition I suspect. The point is, I recieved so much support from her and my family by being honest with them all, it helped me keep positive. Its at times like this we need all the love, help and support a family can give us. Like you I was concerned about worrying my family but I felt they had a right to know the facts for they would have been very dissapionted in me had I not been honest and told the the truth.

Jo, I hope this helps in making what must be a very difficult decision for you. Wishing you and your family all the very best. Sending best wishes and kind thoughts your way, your forum buddy, Brian.

Hi! I think you are so brave! But i think that nobody should take this fight on his own. Family gives you support, strenght. But also can put you down (people get scared in front of this). So i think you should tell a few members, the strong one. My mom has cancer and the rest of the family doesnt know (only me, my dad and a very good friend of us, she is like a daughter to my mom, and 2 of my best friends). I think you must do as your heart tells you. Take care and be strong!

Hi There

I don't have cancer, but thought I could give you an insight from a family member's perspective.

My Mum passed away in April.  Although obviously she had cancer, she was in very good health, was very independant etc and although we knew her cancer was incureable, we thought she had a lot longer.  Like you, she just suffered from tiredness.

All of a sudden, she went into hospital one Monday and died on the Friday.  When I took her into hospital, she was confused and never really regained her faculties enough to have a "normal" conversation.  So we never got to have the time to say things which we would have liked to.  And she was fine up until that Monday.

I am now left with horrendous guilt that perhaps she knew things about her illness that she didn't share with us because she was protecting us.  I can't stop thinking about how alone she must have felt, and it's making everything much harder because I'll never know.  The guilt is literally eating me from the inside.

So, I would tell your closest family.  Although I know every family is different, and you have to do what is right for you.  Good luck xx

Hi Meerkat,

                       What  a  dilemma,  Reading  your  post  I  did  think  to  myself  that  if  your  prognosis   hasnt  realy  changed  then  theres  not  much  to  tell  your  family  and  if  you  dont  know  how  long  you  have  then  personally  there is  no  need  to  put  yourself  through  the  discomfort  of  telling  your  family. I  guess a  lot  of  people  will disagree  but  when  I  told  my  family  I  had  cancer  they  just  didnt  know  how  to  handle  this  news  so  I  decided  that  they  would  only  be  told  things  if  I  thought  they  could  handle  it,  I  made  sure  my  husbanc  new  everything .  As  your  family  already  know  that  there  ix  no  cure  for  you  then  they  might  feel  uncomfortable  telling  you  how  they  feel  about  you (I spoke  to  my sis  and  she  said  II'm   glad  its  you  and  not  me lol nothing  like  being  honest) dont  think  she  meant  it  that  way , unfortunately  this  is  what  most  people  think. You  said  your   close  to  your   brother  anc  partner,  perhaps  you  should  speak  to  them  and  see  what  they  think  about  telling  the  rest  of  your  family,  Sorry   if  I  havnt  helped  but  do  hope  you  come  to  a  decision   that  is  right  for  you.

                   Take  care  and  massive  hugs    Susan

Hi Jo

Im sorry to hear you have yet more bad news about your cancer, it never gets any easier getting results from tests.

Be open about your diagnosis, this is good therapy for you, it also gives your close friends and family the information they need so that they can help you out and support you. It is also good for them to know. You are not "protecting" them from anything by keeping things to yourself. If you died suddenly tomorrow they might regret forever they didn't spend more time with you or tell you the things they wanted to say.

I kept my diagnosis of cancer from everyone for a month, hiding hospital letters and going to hospital appointments secretly in the mistaken belief of "protecting" them. I found this to be a poor strategy. Friends were hurt that I didnt turn up to invitations to social events, I was just too exhausted and ill to do much, but they didnt know that because I kept it from them. When I did tell everyone I had a great response, a few people stayed away, but I was inundated with offers of help and support. My own mother kept the fact she was dying from liver disease from all of her family, she became suddenly seriously ill and died within a week, I regret to this day the unsaid things, the lost time we could have spent together, and a host of other stuff if only I had known her prognosis.

The pain management nurse's advice is good take it. All the best Kim

Hi Jo

I can feel this decision is pulling you in differing directions ( and you should not be worrying when you can be enjoying the current 'wellness' of your diagnosis). All I can offer, from the 'other half's' point of view is that when we told our children the incurable diagnosis (to be fair this was right from diagnosis) they were shocked that their Dad had chosen not to tell them about all the tests in the three months previous to the results being known.  From that day onwards whatever he was told at appointments I kept them up to date (as you may remember hubby did not like talking to anyone about the illness - to emotive for him to deal with) with his permission and they appreciated the honesty (as heartbreaking as it always was) because it helped them understand the 'journey' he was on. His brother and sister in law, sister and other members of the family were 'kept in the loop' as and when necessary (his siblings chose to limit their visits as they could not cope seeing him 'ill' and actually moved away completely just a few weeks before we lost  him) as we felt it was right that they had the opportunity to come whenever they wanted without any uneasiness of trying to hide things.

You know yourself and  your close family better than anyone dear Jo and am sure however you decide, it will be right for you all but please do not bottle things up - you must enjoy life just now.  Sending a huge virtual hug forum buddy.Jules xx

Hi, Jo, from my own experience it really doesn't matter what I tell my family, they see me looking normal (whatever that is) and no matter what I tell them they really haven't accepted that I am incurable and think I will outlive them all.  What I am really saying is you must do what you feel is right.  I think I know what you will do!  Sending my best wishes to you. x

Hi My dear buddy ..... I am sure we are twins because our journeys have been pretty similar and I had  news of further progression two week ago too!  There is a lot of truth in what Pauline says - whilst we still look ok, and are carrying on relatively normally, it is very hard for our friends and family to accept the situation fully.  Sometimes that can be a little frustrating for us - but on the whole it keeps me sane because the last thing I need is people treating me like an invalid just yet.

Dear Jo - like you, I really dont know the best way to roll with this cancer business - I wish you got and instruction book about it to deal with the emotional side.  How we cope I have no idea - but we seem to muddle through ok. 

Like you - my family and close friends know my disease is incurable and I have just told them simply that my recent scans showed the disease is progressing quite quickly which is not good news and that we should get on doing anything we need to do whilst I feel well enough.  My daughter and a few of my friends have had little blips, but I keep calm and say that we all know the situation and although the last thing I want to do is leave them, we must be happy that we have ended up having as long as we have had together as many others are not lucky enough to get that opportunity.  Of course I feel I want to just scream about the unfairness of it all and hug them and tell them its awful - but we know we cant do that dont we?

Reading ESMs post put things into a little perspective too.  I would hate not to be honest and leave people feeling guilty.  And Kim is also right that we are not really protecting others - they know already and we are merely keeping things that we shouldnt locked inside ourselves.

You have had some great opinions here from these lovely forum buddies Jo, and I admit your post has helped me too.  You have to ask yourself if you would want to be kept in the dark if it were your Mum or friend in your situation.  I dont somehow think you would.

You know your family best and will I know, do what you feel is right.  Meanwhile please know that we are both in the same boat and if we can bounce a few dilemmas around together - you have my email address. You have been an inspiration to me Jo and helped me so many times to stay strong and find joy in life amidst this madness - I am so grateful to have met you (virtually only unforunately).

I hope my rambles have helped and not confused you further and I am sorry that you and others are going through such difficult times.  Sending my love and assurance that I am always just a message away when you need a chat.  Much love x

Hi Jo, I've just now read your recent thread and I'm sad that you have come to the point where some of us on here will eventually be. I'm heading in that direction now as the cancer is back in my lung, and of course, my bladder cancer is ongoing. Jo, its' hard to say what I would do in your place right now. I'm not quite there yet and does one really know until that time. I know when I was first diagnosed, (almost 6 years ago now) I did tell my siblings and I ended up dealing with their fears instead of the other way around. I am very close to two of my grandkids, (now 25 and 22 yrs. old - my son's two children) and they know I'm dealing with cancer, but they are not aware of a recurrance in my lung. The 25 year old just had her first child, a baby girl, so I'm not about to tell her for awhile yet. As a matter of fact, my partner and my closest friends are the only ones who know about my recurrance, and for now,I will leave at that.

Just know dear Jo that you need to follow your own heart on this one. Whatever feels right for you is the most important way to go. You need to be taking care of yourself, physicall and emotionally right now. I'm sure that will take most of your strength, so make that a priority. I hold you in my heart and in my prayers and sending you a huge hug.

Take care my friend.

Lorraine

My dearest forum friends, I hope you don't mind a joint reply?

Thank you ALL so much for your insightful responses to my dilemma! Each one of you has helped me to see things from both sides and enabled me to plough forward with a plan! 

I know I would be sad if my mum/daughter/family kept things from me. Although my partner's view is 'even if you tell them, what can they do ?' 

I have been honest and open with them all from the diagnosis stage, though keeping some finer detail to just my partner and myself. I think honesty is my true path and using Max's explanation about how my disease is progressing more quickly and that we should get out there and do things, is the way I've decided to go. I'll tell my kids and brother first and then my parents - asking  my brother's advice about how and when to tell them.

In fairness, my family have always seemingly dealt with each new piece of news in a similar way to me and my partner - hear it, process it, and then adjust to the new phase. This 'phase' is just a bit trickier! But knowing my family, we'll get through it once more.

Thank you all from the bottom of my heart, for all your caring and wise words. Your posts brought some tears, but each of you has enabled me to move forward. Thank you for taking the time to reply as I Know all of you have so much going on in your lives too! 

Sending love and massive hugs to you all, Jo xx