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November 17, 2012 at 10:31 am #20778
My husband is now stage 4 and we are waiting to be accepted on a trial – we have always been open to a point about their Dad’s Melanoma throughout stage 2 and 3 to the point that they thinks its routine and not that serious. Now he is stage 4 – and lets face it – the chances are a lot less positive – I want them to know the truth so they have time to cherish – they have major school exams this year and while that seems insignificant in the great scheme of things – it can blight their lives nearly as much as losing a parent – if they dont achieve their current goals. Do I just say school is really not as important … Do we max out the credit card and go on holidays – do we live life as normal when its not … Many of you out there must be facing this – what have you done ? I know Pati has young children and some of you other regulars but I need some wisdom from you ..? Thanks …November 17, 2012 at 11:06 am #57647patiParticipant Dear Gilly,
I never lied, since may 2008 I said well I have to go to the hospital because this mole is cancer and cancer can be serious, they asked can you die from it, I said yes. They were 2 and 7 when the first mole was found. Now 6 and 11 they hardly remember the me before cancer but clearly when I hit stage IV then we still talked (we also read, draw together, sometimes cry together – though this is the hardest for me – and thank goodness we still laugh together). When Quentin died we read the little prince to understand that I was afraid of too much pain like Quentin had endured and that just like the prince I might consider a snake bite (euthanesia is not penalized in belgium) because I did not want to have too much pain. They are seeing a psychologist and both have gone through hard moments at school (every time a new trial, a new surgery etc). Physically though we have yet to face major challenges in seen limitations or tumors etc so it helped me a lot to talk To Bettina to understand how children see through it all and love you despite it all. I am afraid of them pushing me away, being embarrassed, disgusted, etc, but frankly they just “love” on!!! The 11 year old tells me about his fears of “after”, and some of this make us laugh – like not wanting another woman in the house! the 6 year old is afraid of not being able to hug me and who will read him the stories, of me not being here physically, etc…I say you will ALWAYS have lots of love and I turn them as much as possible to be with dad just like they are with me, no good guy/bad guy, this is not always easy because kids can play with this. I am finding it easier to be weak and not perfect, to say I have had enough! they have not turned away. Their smiles and smell and life energy make me try yet once again but we all know that one day it will be enough and we know they will still have all their chanced to be whole and happy because death is part of life and we see that.
We wonder too about buck lists but it has been 3 years and I am still here and some of my friends died without even thinking about this, so there is no recipe. I am here today, with the good and forgive my french the shit, IN love as that is the only thing that matters and I am convinced the only reason why we are here. To learn how to love in all shapes and forms so as a family we are learning about love in the times of stage IV. I remember talking to Quentin right before he was dying he was frustrated that hid eldest son would come to hospital and not “listen” the the big life lessons he had yet to give…then he just laughed about the kids wanting to move the bed up and down as this is reassuring life goes on. There are great books as a function of age to help along, how old are they?
Hope this helpsNovember 17, 2012 at 12:41 pm #57648Catherine PooleKeymaster
Such beautiful posts and I just want to add that in my years of working with people and counseling them about their children and what may happen that honesty is the best policy. Children know stuff without you telling them! They are very intuitive and may overhear things you say. Don’t hide your feelings or the facts from them. If you do, they will repress their feelings and then the atmosphere becomes tense and scary for them. They will make up their own scenarios if the truth is hidden from them. And their ideas of what might happen could be far scarier than reality. Normalizing the feelings for all involved, having a crying session together is all very healthy. As for bucket lists, I’m not sure how people feel about this and I usually find there is no place like home with those I love.November 18, 2012 at 6:54 am #57649 Thanks Pati – you are always so wise and yet so warm at expressing yourself for this forum – I think because mine are a little older they have learnt to hide that “truth of youth” and they dont express their fear/concerns etc – that may be our fault that we are always “upbeat and positive ” in front of them – it is very hard to show the weak and vulnerable as a parent because we think it would be frightening or burdening on the children – I dont think they tell their best friends beyond the absolute routine mechanics of the treatment programme if at all – I dont want to make them “spill their souls” but just to know that they feel they can if they wish – I guess they come across society’s norms and conventions – (and for teenagers this is sometimes more important) – where talking about affliction is barely tolerated and so they don’t. I am loth to tell the schools too much, as when I did, the school nurse “hovered” over them in a way frankly that was cringe-making to a teenager. She was being kind but not a help. Thanks Catherine also, your years of experience and empathy are so clear – I do think home is where the heart is and we will work on it being a more truthful place. Heartfelt thanks for your time .November 18, 2012 at 6:58 am #57650 I forgot to add Pati – yes – the Little Prince is such a wonderful book for answering those truths in life in such a gentle way – it was one of our favourites. xxxNovember 18, 2012 at 7:01 am #57651 Sorry again – so disjointed ! My kids are 12, 14, 16 and nearly 18.
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