Now what?
Posted on: Sun, 02/03/2008 - 15:14
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Now what?
My mum got diagnosed with breast cancer about two and a half years ago now. She had the chemo and radiotherapy, which all worked well, ulthough she experianced many problems during the way, all being minor ones. She had the removal of the breast, and at the same time, had the reconstruction which was of muscle brought round from the back to make the 'boob'. Everything has been fine since she got the all clear, which was about a year ago. But then nothing, she got left with no after care at all. No checks, no scans, no nothing. The last six months she has been explaining of worse pain from around her side, headaches, muscle pain, joint pain, leg pains, one swollen arm...the list goes on. She has had numerous scans, brain, full body, CT scan etc.
Today we had the news that she has the cancer back...and it won't let her fight it off. They said that it won't go away. She has it in the brain, breast bone, lymth nodes from around the side and minor flecks of it in each lung. They said she has 18-24 months left, although that is in some peoples cases.
I do not know what to do. She is my best friend, my mummy. I am one of ten children, eight still living at home and the youngest is only three years old! She has five grandchildren, and because of this vindictive thing inside her, she is going to miss out on everything. My younger brother will not know her, not like i have known her. How can i help her? Is there nothing to do to save my mum?? How on earth can i say goodbye to my bestest friend? She is still married to my dad, they have been together since they were 14 and 16. She is only 45. I am 24. Please someone help me with this as i don't know what to do. I feel so hurt that this thing would want to take her away from me and all my family.
Is there some help?
I feel anger but have nothing to direct it at, or noone for that matter. But then i feel great saddness for my father and brothers and sisters as one day soon, we will all be without her.
Hi, not a lot i can say that will help, have you rang the helpline on here? its very good and you will be able to tell them exactly how you feel and they will be able to give you advice on how to cope with what is happening to your family. i am 45 and have had breast cancer as well and i have three children, i cannot even begin to imagine how your mum must feel. i also cannot understand why she would be given the "all clear" after such a short time, remission is normally a lot longer than that. i think you need a lot of answers to a lot of questions, i hope you get them soon. all the very best
i am not positive, i am realistic
Dearest Katie,
What a lot to take on such young shoulders. It is hard, but try to stay strong and live for each day.
I was told that unless I had symptoms that were cause for concern I too would not know if my cancer had come back in another part of my body. The only part regularly checked is my mamogrammed side and armpit and my remaining boob.
It is very hard to live with the knowledge that you are going to loose someone you love so dearly. You must find someone to talk to either at the Macmillan service or through your local hospice. Dont be put off by the word hospice, a lot of people go in them to get meds sorted or to give family carers a rest.They are a great support for all the family.
If your mum is willing to talk, try to build a story of your families life with pictures or videos. Something not only for your 3 year old brother but also for you and your dad. She is a very fortunate lady to have such a wonderfully devoted daughter and family around her.
Be sure to take good care of yourself.
Lots of love
my glass is always half full
Hi katie
Nothing i can add that hasnt been said by Debbie and Alison.
The anger is normal. I had similar cisrcumstances with my dad when he had lung cancer. I was about your age at the time so I do understand a little.
I now have breast cancer and believe me I get angry!!!
If you need to rant or just feel the need to "say " something type it in here !!! I know doing that makes me feel a little better even for 5 mins !!
Take care
Lesley x
Hi Katie,
My dear mum has terminal brain cancer, too. I don't know how I'm going to feel when the time comes, but one thing is sure - we're going to make sure whatever time is left is going to be quality time......
It sounds like your mum is a very brave person, as are you. A positive attitude and sense of humour can really help. (However, it can get really warped when illness is involved, so don't be afraid!!)
A work colleague recently diagnosed with breast cancer told me how upset she was about not receiving any funny birthday cards........ "I've had a mastectomy, not a bleeding humour bypass!!"
Talking really helps - you get excellent help on this Helpline and also other organisations like Macmillan. Feel free to get in touch if you want to let off steam...
Don't let this illness cast a shadow on you all - try to keep things normal as long as possible. From my experience, I never forget what's going on, but I don't worry about things I can't do anything about. I live and work 200 miles away, but commute home most weekends, stay longer if needed and will move back home to care when she deteriorates. It's the way SHE wants it - it's her idea of normality. (I don't find it very easy to be so far away, but I have to respect her wishes)
How much do your younger siblings know about the situation? I have a publication called "Helping Hands" which suggests suitable picture books about difficult situations for sharing with children - you may be able to pick them up at your local library....... (sorry, talking shop!!) I can let you have a copy, if it would be helpful.
Take great care, don't be afraid to get in touch!
Love, Julie J xx
Jules
hi. can understand what you are going through our mum has secondary brain cancer originally ovarian and it was missed for so long and not checked out even though we kept on taking her back to doctors, she wasnt due to go back to oncologist for check up until nov/dec so if we hadn't kept on and put up a 'fight' she wouldn't have even started the treatment and would have still been suffering with awful headaches and confusion and loss of mobility down her left side. We are waiting for the body scan results to come back so obviously worried about those results, mum is very positive and doesn't want to know 'how much time', so tells docs not to tell her. We think she knows its serious but we respect her wishes and so we are spending as much time as poss with her and also being positive about the future. I can talk to my brother and sisters about stuff mum doesnt want too. Really scarey time and still got alot of anger, if you ever need to off-load I'm here to have a rant too because i will need that too! bye for now Rebecca x
Rebecca
try to look for the positives, and keep hope alive for your loved ones xxx
Hi, I think that even if doctors state a time, you can never know how much time is left.
The son of a friend of mine was given 3 months by the doctors and 3 entire years have now passed... so how can we put a limit to hope?
I find it easier to live day by day, because each single day is a precious present...
Hope you feel a bit better...
Who can say where the road goes
Where the day flows?
Only time
And who can say if your love grows
As your heart chose?
Only time
Who knows?
Only time
***Ottimismo fino a prova contraria:-)***