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The Ripples!
Some advice with hindsight.
Make sure your children have someone to talk to, outside the family. I was not offered any really relevant contacts for my kids. My daughter was 18, my son 21 when I was diagnosed. My daughter was just about to take her A levels & my son was just about to complete his degree. A worse time was not possible!
The hospital gave us letters to send to the relevant examination boards to explain the circumstances.
We always told the kids the truth, exactly what was happening to me & what they could expect.
Well after 3 months & 3 sessions of chemo I was told I needed a transplant. Something else to worry them with!
I had AML & then a STC. It wasn't until months into my recovery when I was able to get back on the computer that I found 'Leukaemia Care' with their 24/7 helpline.
My daughter went to University 2 weeks after I returned home from my transplant. Hindsight would have been good, we would have told her to defer for a year, but I was worried that I might not make it & wanted everyone to carry along the journeys they'd already decided upon. I thougth this would make their lives easier should the worst occur!
Well when my daughter returned to her 2nd year after 5 months Summer holidays with a recovering Mum she couldn't cope & after 5 weeks left Uni to return home. She immediately got a job & has not looked back.
My son only cried for the first time a year ago, when I was telling his girlfriend my story.
I believe this has made us very close. We were always close but I have a very strong relationship with them both & we neither of us take one another foregranted.
It's difficult for them to come to terms with & to understand how they feel. They're terrified, if they understand the possible problems.
I cannot fault the treatment & care I received but feel that my husband & children were left a bit to cope on their own.
Make sure your children have someone to talk to, outside the family. I was not offered any really relevant contacts for my kids. My daughter was 18, my son 21 when I was diagnosed. My daughter was just about to take her A levels & my son was just about to complete his degree. A worse time was not possible!
The hospital gave us letters to send to the relevant examination boards to explain the circumstances.
We always told the kids the truth, exactly what was happening to me & what they could expect.
Well after 3 months & 3 sessions of chemo I was told I needed a transplant. Something else to worry them with!
I had AML & then a STC. It wasn't until months into my recovery when I was able to get back on the computer that I found 'Leukaemia Care' with their 24/7 helpline.
My daughter went to University 2 weeks after I returned home from my transplant. Hindsight would have been good, we would have told her to defer for a year, but I was worried that I might not make it & wanted everyone to carry along the journeys they'd already decided upon. I thougth this would make their lives easier should the worst occur!
Well when my daughter returned to her 2nd year after 5 months Summer holidays with a recovering Mum she couldn't cope & after 5 weeks left Uni to return home. She immediately got a job & has not looked back.
My son only cried for the first time a year ago, when I was telling his girlfriend my story.
I believe this has made us very close. We were always close but I have a very strong relationship with them both & we neither of us take one another foregranted.
It's difficult for them to come to terms with & to understand how they feel. They're terrified, if they understand the possible problems.
I cannot fault the treatment & care I received but feel that my husband & children were left a bit to cope on their own.
Comments
They coped amazing, sometimes I wonder if they realised how dangerous and life threatening it was even though they were told. I did tell them 'gently'. I was extremely positive and even happy through all of my treatment so I think this helped a lot and was the key thing in them coping (and my husband, and my Mum and Dad....I felt responsible for everyones happiness!)
I did receive initial support from St James Hospital, Leeds when I was first diagnosed. My specialist clinical nurse referred me to MacMillan, they inundated me with literature for my children, ideas, websites, support forums. My children refused it all but I kept it just in case one day it "hit" them, it hasn't yet and I no longer have the info (new laptop). There was no support offered after this, but I do believe I only had to ask at the hospital and they would have helped me.
This is a really useful discussion for us at Anthony Nolan. Developing resources about talking to your family about your diagnosis and transplant is one of the things that we hope to be looking in to. Is this something that you would find useful? If you aren’t on our patient panel and would like to help us with projects like this, please do get in touch and ask to join – patientinfo@anthonynolan.org
For older children, the Anthony Nolan Guide to Bone Marrow Transplants YouTube video might be useful to explain what is involved in a transplant:
We also found the below links about talking to your children. If there’s anything else that you found useful, post it below so that we can add it to our list.
As always, please do get in touch if you have any questions or if there's something we may be able to help with.
Thank you all,
Amy
Macmillian – telling your children
http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Relationshipscommunication/Talkingtochildren/Tellingyourchildren.aspx
NHS – talking to kids about cancer
http://www.nhs.uk/Livewell/cancer/Pages/Talkingtokidsaboutcancer.aspx
Riprap is a useful website for children whose parent has cancer, aimed at 12-16 year olds
http://www.riprap.org.uk/
Caring for Cancer – talking with children and grandchildren about cancer
http://www.caring4cancer.com/go/cancer/wellbeing/emotional-wellbeing/talking-with-children-and-grandchildren-about-cancer.htm
There are also the following children’s books, recommended by Caring4Cancer:
"Our Family Has Cancer, Too!" (ages 9-12) by Christine Clifford, Jack Lindstrom
"The Paper Chain" (for ages 4-8) by Claire Blake
"Once Upon a Hopeful Night" by Risa Yaffe, Troy Cramer
"Daddy's Cancer and My Daddy's Cancer" by Cindy Klein Cohen (1997) by Promise Publications
"When Eric's Mom Fought Cancer" by Judith Vigna
"My Mommy Has Cancer" by Carolyn Stearns Parkinson (a 5-yr old boy's mom; what causes cancer)
"The Kissing Hand" (more about separation anxiety but a nice concept that helps a lot when you can't be together)
“Because Someone I Love Has Cancer: Kids’ Activity Book” - Terri Ades
Carney KL: What is cancer anyway?: Explaining cancer to children of all ages, Dragonfly Publishing Co., 1999.
Harpham WS: When a parent has cancer: a guide to caring for your children. HarperCollins, 2004.
Harpham WS: Becky and the worry cup: a children's book about a parent's cancer, Perennial, 1997.
McCue K, Bonn R: How to help children through a parent's serious illness, St. Martin's Griffin, 1996.
Cohen, CK, Heiney JT: My daddy's cancer: an interactive book for children. Promise Publishing Co., 1999.
Kohlenberg S, Crow L: Sammy's mommy has cancer, Magination Press, 1993.
When Someone Has a Very Serious Illness: Children Can Learn to Cope with Loss and Change - Marge Heegaard