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How much do you tell your children?

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Maelise
How much do you tell your children?

Hi, I'm just wondering how much people have told their children and at what stage? I have a son aged 3 who obviously knows very little, and daughters aged 7 and 8 who know about my first journey with cc last year, although we didn't tell them the full details until after my surgery and I had received clear results. My 8 year old is very mature but is also a huge worrier. 2 weeks ago I had my first 4 month checkup after radical hysterectomy and lymph node dissection in August and unfortunately it looks like my cancer is back. I have an urgent Colposcopy and biopsy tomorrow and an appointment in 2 weeks to get results and treatment plan. I guess my daughters will work out something is going on, they will be picked up from school by grandma on both occasions for a start and of course myself and my husband are going through some tough times emotionally. I am desperate to protect them but hate the thought of them being upset on their own or getting ideas in their head etc. Also last time we made a big fuss about me having got better and got rid of that horrible cancer in mummy's body, how can I possibly tell them it is back??? Any advice would be appreciated. Thank you xx

Rachel57

Hello Maelise. Firstly, I am very sorry to hear that you may have to have more treatment. The important thing to hang onto is that there is more treatment available to try and get on top of this thing. I had a RH with lymph node dissection followed by chemo rads. One followed on from the other as some of the lymph nodes were involved. That was over 2 years ago and all is well still. As for what and when you tell the children, I have not been in your position, as my kids were older, but I know that Macmillan have a booklet about what to tell your children, which you may find helpful. My feeling is that you need to find out much more about what is going on and what the treatment plan is going to be before you share too much with your children. As you say, your eldest is a worrier and the worst thing for all concerned is the uncertainty of not knowing. Can you tell them you are having follow up tests for the time being, and then see what is going to happen treatment wise for you. Routine is really important for kids and knowing when you are going to be away. I do hope that the news is better than you anticipate and that you can gain strength from reading some of the stories on the forum. The treatments these days are good, so there is a lot more they can do for you. Just look at it as step 2 in the treatment programme. Thinking of you and wishing you and your family well. 

Rachel

Sept 2014 - 1b1 squamous cell cc diagnosed

Oct - Radical hysterectomy and lymhphodectomy. 5 pelvic lymph nodes involved

Nov - Chemo therapy  5 (cisplatin) and 25 radiotherapy

Sept 2015 - lymphodoema diagnosed

Clear scans to date

 

Maelise

Hi Rachel,  thank you so much for your reply. I agree,  we have only told a couple of close family and friends what is going on as really we don't know exactly what we are telling them anyway as yet.  The waiting really is the hardest part. I worry for my kids much more than I do for myself but of course that is only natural! I also worry about the practical things like how we will juggle school and childcare etc if I am having regular treatment but I guess once we have the results we will just work things out because that's what you do.  My husband just keeps telling me we have done this before and we can do it again.  I guess I feel a sense of guilt that I am putting my kids through more disruption and upset,  even though of course it isn't my fault.  I want to be completely honest with them but protect them at the same time.  I will speak to my macmillan nurse tomorrow.  Thank you xx

Rachel57

Hi again Maelise. I just wanted to mention that if you end up needing more treatment, and that might be chemo rads, that many people manage to get through this and continue to do their normal routine. I know I am jumping the gun here, because as yet you don't know what the plan for you is, but I am sure you have thought about it yourself. I know that Lolli on this site was able to look after her kids, get them to school, shop etc, so some find it very doable.  Hopefully, if you needed help, family and friends would come forward to assist in all kinds of ways. This site is so helpful, and any worries, concerns and positive stories as well can be found here.  Once again I hope all goes well 

Rachel

Sept 2014 - 1b1 squamous cell cc diagnosed

Oct - Radical hysterectomy and lymhphodectomy. 5 pelvic lymph nodes involved

Nov - Chemo therapy  5 (cisplatin) and 25 radiotherapy

Sept 2015 - lymphodoema diagnosed

Clear scans to date

 

Jayneeeb
Jayneeeb's picture

Hi Maelise I think with children as young as yours they are incapable of putting things in perspective. The real thing they need from you is for you to hold it together. To feel like you are in control even if you don't feel in control yourself. I guess I'm trying to tell you to fake it. They are too young to carry a burden. My children are a lot older and we went through recurrence as well. My daughter was fantastic and saw the raw emotions and horrible side effects of treatment but she was 21. Even so it took a toll on her and she needed time to recover too. No fuss, protect them from the roller coaster of good and bad news. They are everything. Jayne

Time for the really big girl pants now.

Maelise

Thank you both for your support and kind words.  I have had my biopsies taken today (really wasn't prepared for how painful local anaesthetics are when you have no cervix!!!) so it's just the waiting game now.  There is a definite gap in the scarring so whatever the outcome I will need it repairing under general but for now I've just to take it easy until the results are back and we know whether the suspicious looking area is actually just some irregular scarring that needs snipping off,  or whether it is a recurrence as suspected.  Fingers crossed xx

Husbandworriedsick

Hi all, I'm not a cancer patient,but as my "name" indicates, I am caring for my wife who is battling this vicious and ugly disease. She was diagnosed cc in October 2015, with rad/chemo finishing in late January early February 2016. Responded very well to the treatment. N.e.d. in april 2016, and 3 month checkup showed still n.e.d.then RECURRENCE. Since then has had nephrostomy tubes, ileostomy put in. And is about to start taxol,carboplatin and avastin this week. 

We have 4 children ages, 21,19, 17 (girls)  and a precious little 6 year old boy. And as you can surely guess, he is mommy's treasure. He is crazy about his mommy. My girls understand what is going on, however my baby boy is a little confused as to what is happening to his mom. He knows mommy is "sicky" but not much more than that. He stays close to her when she is feeling sick and even prays over her while she is asleep. We've decided not to tell him much more than he knows until and IF it ever gets to a certain point. We pray to the Lord Almighty every single day. I pray for my daughters and my baby boy... 

Jayneeeb
Jayneeeb's picture

Hi HWS At least they have you and you care. Your wife sounds incredibly ill and I don't know what the future holds for her but it doesn't look smoothe. Most of us on here who have faced diagnosis and some with recurrence,  me included, have had to draw on strengths we didn't know we had. There is no option other than face it head on. Your girls may know what's going on but I doubt they are not terrified. Take comfort in the knowledge that you can help them all through your strength even if you don't  feel strong. Fake it. Children are everything. They were the first thought in my head, not my mortality but their survival and ability to thrive if the worst were to happen.was my main concern. If you and your wife can be calm you will help them cope. Good luck with it all Jayne

Time for the really big girl pants now.

Husbandworriedsick

Hi jayneeeb

Thank you for your kind words. It is very hard, as I know everyone in here is going through the biggest fight of your life. I pray for all of you. God Bless

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