Well its time to tell my children.

Hi Tone - I think it is right that you tell your girls- for you there is a good section on the cancerbackup website. My daughters (13 and 14) also went on tic (teenage info on cancer I think) which there is is link to from macmillan - but they didnt rate it very much. I read a lot on winstons wish and the willow foundation sites - you may find it interesting to read up on that too. Everything basically says to tell them the truth - never give false hope - if you dont know your prognosis dont lie - say you arent sure but that the doctors are giving you the best treatment available. It may also be worthwhile telling your daughters schools what is happening - I did for both of mine - in that way the school can be aware of the pressures/worries at home and monitor how your girls are doing (I know the eldest may be leaving school this year) - my youngest daughter gets counselling at school too. I know that although my girls heard some tough news (I am terminal) we had a wobbly time but now life goes on fairly normally and that is how I want it to be. They will appreciate your honesty Tone - and they can cope with so much more than we give them credit for. Ask them what they thought was happening to you - you may be surprised at their answer! Also check thier understanding of what you have told them - make sure they have it 'straight' in their heads - and make it clear they can ask anything and that you will give them an honest answer. Best wishes, Jools x

Thank you so much Jools, what your saying is right the truth and nothing but the truth. I know some people have said hey tony they may know a bit more than what you think, well I'm not to sure about that as when we have mentioned cancer to my oldest daughter (16) only twice in the last six months the last time was last Friday she was very negative in her comments about it. I don't want to say what they are as they may offend some people. Well on the 14th Aug I go for my first 6 months scan since the operation hopefully I will know the results on Friday 15th and good or bad it’s certainly time to tell them as I want them to hear it from me.
So this weekend coming will be the right time for us. So hopefully I will be all clear then they will know that daddy is fine that will give me a better footing when telling them.
Thanks again Jools I let you know how i get on....
Tony x

We told our son in stages. This was mainly so we could get our own heads around the situation, come to some kind of terms with it, and, most importantly, have a good idea what the treatment and outcome was likely to be. We didn't think that just saying 'Dad's got cancer but we don't know how bad or what the docs will do or what is likely to happen' would be at all helpful to a teenager! Let alone if we were in a 'state' as well about it all, still reeling with the shock of the DX (out of the blue, like so many).

Like you, my husband had an operation first, and we told our son that it was necessary as Dad's kidney was failing, and it needed to come out. Then we waited until the first post-op onc appointment, to find out what treatment would follow (drug therapy). That was the stage I took my l4 year old son aside and explained just exactly why Dad had needed his kidney out. I used the words 'growth on the kidney' first of all, and only gradually used the C word.

It was not a happy experience, and my son cried, despite all the 'up talk' I'd put in, and then we went downstairs and he and Dad had a hug, and some more tears, and then my son said he felt better.

A friend of mine with a husband with lymphona had told me that whatever we say it MUST be the truth, because the children MUST know they can trust you not to lie, or hide things, or they will only worry thinking things are even worse. They MUST be able to trust you.

For ourselves, the situation is maybe a little different from some other cancers. My husband has kidney cancer, and so is on (thankfully!) one of the powerful new drugs. Because they are so new there really are NO 'proven final outcomes' as yet, and that means I can tell my son, quite truthfully (and it's something both my husband and I are hanging on to as well!) that there are people who have had the drug while it was on trial, and who are still alive and well, and some are even NED (no evidence of disease). This puts us in the advantageous position of everything being 'up for grabs'. We don't know whether my husband will respond yet to the drugs, but his physical state now is very good indeed, and quite frankly, if you didn't know he had cancer you wouldn't know!

Now, that may, I appreciate, be dangerous in that it may send messages to our son that 'Dad's OK now', so I know I have to not let him get any false reassurance that it really is 'touch and go'.

But when the known outcomes of a cancer are more established, that is different. There is more that you can tell your children, whether positive or negative.

One thing I would definitely recommend - ensure your children's school knows officially. My son's school has been extremely supportive, and it's great. I've also emphasised to my son that he will NOT be the only pupil with a parent with cancer (in fact, he knows of one already, which is 'reassuring' in its own way!). I think the school really should know, as children's behaviour may alter with the stress of the situation, and it would be terrible if the school though they were misbehaving, or slacking, and didn't realise they were coping with such serious family illness.

I do think, though, that it has been, perhaps, the worst aspect of all of this nightmare - putting our son through the fear of losing his father. It's very, very hard.

All the very best to you, and hope it goes as well as possible.

Julie.

Firstly I would like to say good luck for the 14th and I hope the news is positive.My daughter was 11 when I was first diagnosed and a family member told her as I didnt want to break down whilst doing it.As she had to seee me going through treatment of chemo and recover from a hysterectomy there was every reason to tell her the truth and we looked forward and positive for the future.I told her school immediately so they would be supportive and be aware of any possible change of characture. There wasnt fortunately and she coped very well.However when the cancer returned only a few months later it was more of a blow and I was told it was terminal.She is now 14 and has only known the terminal bit for the last 12 months.I wanted her to understand that as my treatment is going well at the moment, It didnt mean that it was neccessarily going to be soon but that it wouldnt be cured.I needed to understand that bit myself too.Life goes on as normal and we cross each bridge as it comes.She doesnt ever bring things up about the future and I do worry that shes in denial and I dont know how to deal with that.There is a site for young people with a parent who has cancer. www.riprap.org.uk.All the best Tony.xx

Thank you for posting that riprap site. I hadn't known of it. Julie

I'm just on here to wish you all the very very best for your appointment.

I'm sorry that your children have been fed negative things in the playground - it seems to be all part of teenage life at certain schools now, and there seems to be a groundswell of prejudice against a lot of other issues. I'm lucky in that we don't have children, and my brother told my niece. She is 16 now, and wrote me a lovely email the other week telling me how proud she is of me defying the doctors' pronouncements. I know it is a lot different with your own children.

Wishing you all the best for the "real one" - and thanking you for your ever-amusing comments on my photos! xxx Penny

Thank you so much for all your kind comments its really helped. Well we went to Sheffield to go for the scan to find out they just wanted to check my eye socket and my good eye. Arrrrr. Anyway they are fine no problems and its too early to have the scan yet so I go back some time in October. Any way i bit the bullet tonight and got my wife and daughters together and explained all in my comedy fashion. It went surprisingly well, a few tears from all of us and it was done i got to admit i could do with a beer now. The only strange thing about all of this cancer in the eye business is that my daughters friend asked her if there was any one ill in the family some one male being ill with cancer and she laughed and said no silly. The thing was that was a month before I knew. HA I think her mum is a spiritualist and she got it from here spooky.
anyway thank you from the bottom of my heart for being there for me
love you all tony x