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Old 03-15-2006, 05:27 AM   #1
Carol H
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Location: County Cavan, Republic of Ireland
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Smile Wishing to live to Age 40

I am from Scotland, and 37 yrs old, Married with a Daughter aged 9 and a Son aged 7. I was diagnosed with Stage III Breast Cancer in June 2000 and had a radical Mastectomy the very next day(no reconstruction) then 6 months of chemo followed, very bald and very sick then 20 doses of Radiotherapy and was taking Tamoxifen for a year then found lump on my nekc, had a biopsy and informed the cancer had returned. Had various scans which revealed the cancer had returned in my bones(spine and rib cage) and a massive tumour on my right and only remaining breast. I was told I had at least 10 months or so to live - I was beyond devastation - I had two young children and decided not to say anything to them other than the cancer was back but the doctors will try and fix it - there was no way I was going to give in yet -I was also informed I had type HER2positive Breast Cancer (In the UK we are a bit behind the times with regards to science as the USA is way more advanced than us and we always tend to get a new drug a few years after its been used in the USA) I started 6 months of Docetaxol Chemo and Herceptin intravenously then the tumour in the breast had reduced but the bone cancer has remained the same - To date I still go every week for my weekly Herceptin treatment and every 4 weeks received by drip a Biophosphate Drip for the bone Mets - I do not suffer any side affects with the Herceptin, after from tiredness and I take daily meds or oral low dose morphine tablets for the bone pain and lead a normal life as a wife and mum to two young children who need me to be a normal mum to them - I love normality and don't wallow in self pity and try very hard not think too much in advance about the cancer and when all the treatment with stop working. Life is wonderful.

I have decided not to tell my children I am terminally ill only that the cancer is back and cannot be cured but the doctors say Mummy is doing so well and still go to hospital every week for the medicine to keep me well -We decided that to tell the children I was dying and was not even sure how I would react to the Herceptin was too cruel a burden to place on young children as every day they would wake up wondering would this be the day they would lose their mummy - I do not lie to them is they ask me questions - When the time comes that the treatment is no longer working then thats when we will tell them the whole picture but until then why burden them - let them have a happy carefree childhood whilst they can enjoy it. My young son does sometimes have the rare and odd moment of weakness and will bo a bit quiet and have a private cry then open up in his own time and recently he did ask me would I be alive when he turns 8 yrd old this October - I replied by saying I would not lie to him and say I would but would hope and pray I will be around a fighting fit and am sure I will be which he accepted and was fine after that.

Me or any of my family have not had any counselling as we do not need it as I am a very positive person who just gets on with things not matter how hard they are - I am no saint but just think why spend precious moments of your life worrying all the time - just get up and get on with it thats what I think - but sometimes in bed at night(not very often) I think about how I am not afraid of dying but terrified beyond belief of leaving my beautiful young children behind without their mummy to give them their bedtime stories and hugs and cuddles when they need them and silly things like making sure all their home comforts are around them and the thought of them lying in bed at night weeping uncontrollably because I am gone is just too much and worrying about how my husband will cope going through the rest of his life without me and coping without me as I do all the housework, organising kids school and club activities etc - and worry everything and all their routines will fall apart - but know he will be a wonderful and caring father to my children am in some ways jealous that he will see my children grow in adults, get married, see my daughter in her wedding dress, see our grandchildren etc but cannot spend time resenting this and concentrate on the present and now.

Are there any other woman in the UK in my position or similar with young children as there doesn't seem to be amy UK websites or even any tips or advice from US women would be helpful

Carol

Last edited by Carol H; 03-15-2006 at 05:30 AM..
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Old 03-16-2006, 02:12 PM   #2
karenann
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Carol,

You are a strong woman and I believe will do very well with your attitude. I was wondering if you had posted on the, "main", message board? I think you will get more responses that way. There are many women who are living with, bone, liver, lung and brain mets and living very well. There is a lot of information on this site and women who are living with the same prognosis as you.

God bless you.

Karen
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Old 03-17-2006, 08:53 AM   #3
Tan
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Hi Carol,
My name is Tan and I work for Ricochet, a television production company. We are making a documentary series for Channel 4 looking at the impact on family life when a mother gets cancer. I was very moved by your eloquent post about your concerns as a mum and how you have kept positive in the face of uncertainty.


The film, will follow mums who have been diagnosed with secondary and advanced cancer dealing with the uncertainty that such a diagnosis implies; preparing their husbands for the possibility of a future with out their support by writing a manual on how to run the household and how to care for the children, making memory boxes and doing fun memory activities with the kids.

Julie Stokes, consultant clinical psychologist and chief executive of the children's charity Winston's Wish, will be appearing in the documentary using her decades of experience to help the families navigate the emotional ups and downs of living with a life threatening illness. Essentially, it will be a positive film about what it means to be a mother, and what it's like to have to consider passing on aspects of this role to someone else in order to keep the routines and rituals of family life constant, whilst never giving up hope.

If this sounds like something that you'd like to know more about you can ring me on 01273 224 800 or email me on tanveer.bari@ricochet.co.uk

Best Wishes,

Tan.
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Old 03-17-2006, 10:08 AM   #4
Shell
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Carol-


My children are 10 and 8, and I have taken a similar approach in what I tell them. I started taking xeloda, which are pills taken twice a day - my 10 year old set the alarm on my cell phone for me so I'd remember to take them on the weekends! Sometimes I'm tired and I have to remind them to help out, but in general they have been great with things. My 8 year old sometimes cries and says no one understands that her mom has breast cancer, but i told her that as long as i feel well, and still undertake daily activities, that we are blessed and prayers alone by others are doing the job...

welcome to the boards.

shell
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Old 03-17-2006, 10:24 AM   #5
lkc Gumby
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Caro,

There is another site www.breastcancer.org, which I found very comforting and informative. There are lots of stage 4 women there.
Good Luck.

Linda
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Old 03-17-2006, 01:46 PM   #6
Carol H
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Location: County Cavan, Republic of Ireland
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Thank you for replying

It is so nice to hear from another mum with children of similar ages- I hope to check this site as often as I can but you know what its like with 2 kids and housework etc so will try to keep up to date and still trying to work out how all the areas of the website work -its quite a well organised site so will have to familarise myself on how to use it properly.

The medication you mentioned you are taking at the moment - I have not heard of that in Scotland yet - what does it do??
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Old 03-17-2006, 08:10 PM   #7
eric
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Carol,

I really don't understand how anyone can tell you that you have 10 months to live when there are so many woman that are living proof that, thanks to herceptin and the many new wonderful drugs available for breast cancer, the rules have changed! My wife Caryn was diagnosed with mets to lungs and liver in July of '04 and has been NED (no evidence if disease) since 1/05. As many of the wonderful people on this site will tell you, as their doctors have told them, no one knows for sure any more. Just as I can't sit here and guarantee that you will live for another fifty years, I don't think any doctor can tell you that you have 10 months. No one knows!

I know this is easier said than done, as I live with the fear of losing my wife every day, but try and cherish and enjoy each day knowing that every day and every week brings us closer to the next great drug and possible cure. BC is much more of a managed disease than ever before and with the new technologies available the discoveries seem to be coming at a faster pace than ever before!

Kiss your kids and tell your doc that you choose not to believe him or her!

Warmest regards,
Eric
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Old 03-19-2006, 10:21 AM   #8
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Carol;

Please do follow Karen's advice and post to the main site. Just cut and paste your original story to a new thread. I know you will receive many, many responses and lots of helpful suggestions from very experienced stage 4ers. My heart goes out to you and your family and I will keep you in my prayers.

Cathya
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Old 03-21-2006, 03:44 PM   #9
lucky4x
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Families, Mets, Recurrances.....

Carol,
I sent you an email but I wanted to post here too.

I am also a mom of 3, battling this for 6 yrs. I am 48 now.
My kids knew everything the first time, as I had chemo and rads and lost my hair, but I , like you, keep very optomistic, and "up" ( for them).

My second dx, I told them, but kept it light.

My third time, I didnt tell them because there was nothing I could do as they found it in the breast I had just removed.

This 4th time, in Aug, it was lung mets... I didn't tell them. Why? I had a daughter who was just starting Univeristy, and a son struggling in grade 10 and a younger daughter who would just cry... so I didnt tell them.
It was a good decision for that time, but I have recently told them ( but kept it very light) as the Herceptin is controlling the spots, and they have disapeared. I only told them, because it was too hard to lie to them about the 3 week treatments. I don't lie to my kids, and they don't lie to me (much). LOL.

My husband is coping in a strange way. He ignores it. It is actually ok... the kids never get down, or depressed because he acts so normal. It is sometimes hard on ME...but good for them.

Keep well. Now, I am off to find this general board... I have no idea how to get there.
Lucky
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Old 03-29-2006, 07:50 PM   #10
Unregistered lin
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cancer

i am 54 and found my own cancer infeb2006,the mammagram did not show it or dr who i went to see,i stayed real hot allthe time like hot flashes but worse,i knew tht the lump was real.also when i went back to do another mamamagram ,they sent the report that it was my left instead of rigth,so i did not have surgery near home ,i went to the cancer center of america in tulsa ok,it is wonderful,it is not like a hospital,they have the best dctors and up to date on everything,the room are suites,i had breast surgery, the senital nodes were ok,now i go back in april to have a portacalf put in and stat chemo,then in june radiontation,they take medicare,also they help with tranportation to get there,anyone who reads this ,please concider them, there is one near chicago,go on line, many have went there that other drs give up.also can any one give me info on chemo,God bless you all, lin
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Old 03-30-2006, 02:20 PM   #11
tricia keegan
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Hi Carol
I just wanted to wish you well and say Hi.I was very touched by your post and am sure if attitude is as important in this as they say you will do well and beat this for many years to come.I live in Ireland but have a son in Dundee.
I am being treated for stage 2 breastcancer but like you found it hard to find a site in the UK or Ireland that gave me much support.I finally found this site and also the Susan g Komen site and the support and friends I have made have been fantastic.
Stay positive and strong
Tricia
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Old 04-03-2006, 01:23 AM   #12
lu ann
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Unregistered previous poster...

Cancer Treatment Centers of America should have given you advice on chemo when you were there for your surgery. I went there March 04 and stayed for 6 weeks getting radiation tx. and a surgical biopsy of the remaining breast. This was a great facility who treat the whole patient, mind body and spirit. I decided not to get chemo there because I didn't feel comfortable flying while on chemo. But I met many people who did and had great results.

Love and Blessings,
Lu Ann.
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