I was diagnosed with Secondary Breast Cancer Sept 09, Have had oral chemo for the last 18 months and started IV chemo yesterday, I live life to the full and try to be positive all the day as I feel that there is not much you can do but accept what is happening and enjoy what you have got!!
I was so pleased that I was chosen by Breast Cancer Care to be one of the faces for the Secondary Breast Cancer campaign this has given me more inspiration and positive thinking on how I can help others in the same situation.
I have a great husband & 2 girls ages 6 & 4 which are my rocks!
But as My treatment has now changed to IV chemo and now I will loose my hair my children are becoming very anxious and asking lots of questions and are very worried which has a major impact.
I have spoken with BCC who sent spome books that are made for childrens reading also their school have contact to see what they can do, Macmillian have also given books, but what else could be done???
I am taking my kids to the chemo ward next week to show them what happens and hopefully this will give them reassurance
I feel that there should be sessions in schools so kids can be made aware they are not the only ones this happens to and get more positive support & also helps schools know how to deal with the situation, or for kids to have something special done for them
I know it’s easy to say, but I wouldn’t worry to much about how your kids will react. I think children of that age tend to accept things at face value. I can remember when I was about 5 years old, going round to my friends house, and finding that her mum had just given birth. I couldn’t for the life of me work out where the baby had come from, and neither did I understand that the reason my friends mother was lying in bed, was because she had just given birth - I just thought she must be tired. What’s more, neither me, or my friend ever noticed her mum getting larger over the previous nine months.
For us adults, when we see a cancer patient with a bald head, we understand the enormity of what they are going through, whereas young children just see the bald head.
hi Macyruby,
I remember when i lost my hair that my 6 year old was quite upset by the whole thing, and needed reassurance -children do understand a lot more than we think and pick up on feelings and stresses very easily. I have always tried to be as honest as i can- he knows I have secondary cancer that cannot be cured and that i need to take lots of medicines to try to keep me well that sometimes have side effects. When I was bald his special job was helping me choose scarves and hats for each day.
I don’t think the BCC leafllets for kids are that helpful if you have secondaries. If you feel you need more support, there may be a child support worker that you could link in to at your local hospice. i have also found it useful to make sure my little boy’s teacher is up tp date with what’s happening so she can look out for any changes in him. I have had secondary cancer for 4 years and it’s just become normal too him.
besat wishes,
nicky
I too think children are aware of far more than they let on. I can remember even from a very young age not wishing to betray my feelings to my mother in order to protect her. So I am very aware that this may occur in my 16 year old daughter and 6 year old son. I have just recently been diagnosed and am in fact still seriously ill with mobility issues and a clot on the heart so could die soon if the treatment doesn’t work which is scary. It couldn’t have come at a worse time for my daughter as it’s her GCSEs so I have to live to August at least! My son is still not fully aware of what it all means and I too feel there does not seem much professional support readily available. A comic strip book would be good to explain it in a simple child-friendly way. To be fair my heart issues have led to cognitive difficulties too (in operable vena cava syndrome) so I’m only just starting to feel like me. I had the most terrible reaction to steroids which involved me thinking everyone was trying to kill me including friends and family and no sleep for over a month. It has been a living hell. But now off them for a week and finally feel like me so everything feels more positive. At my worst my face neck and arms swelled up tp about 4x normal size and I could’ve died then too. My son said I still looked like me and said he didn’t really notice changes as now I am the opposite and losing weight so perhaps they do just see mum at that age and I was hypersensitive due to other issues in my childhood. Anyway my on who we’ve christened Dr glass half empty because he’s scared us to death too many times about how many different ways I could die has said the world miracle twice so I’ll take that. Head CT results Tues so hoping for evidence of part of the miracle then. Love to everyone with small children like us. I don’t feel angry as that just hurts yourself. I feel sad for everyone xxx