My mum's Battle

A place for partners, family and friends to share experiences and information.

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The new girl
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Re: My mum's Battle

Postby The new girl » Wed Aug 01, 2012 9:43 pm

:wave: hi faith2020 I have just read your story about mum,your mum fought a big battle and I am so sorry she lost,you would have been a big comfort to her,this thing has taken so many good people including your mum.god bless you,and I would think mum is watching over you now :hugs: Rosa

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Re: My mum's Battle

Postby trish.ca71 » Tue Jul 26, 2011 10:56 am

Hi Faith

OMG!!! Just read your story. Made me cry. :crybaby: This is what my Mum has. She has stage 4 Breast Cancer with bone mets. So much pain and agony. She is on Femara and it seems to shrink the lump in her breast and lymph node, it seems to be working. Had no idea it could stop working. The bone mets were so bad that she had to have a long stem hip replacement. They told us that chemo wouldn't work for her, so she didn't have that. She was having Zometa but had to go to the hospital to have that and this was causing her alot of distress. So now she takes Sandoz Phosphate and Fosamax. It seems to have stabilized the cancer, but it still there.

Your story so familiar. My Mum was diagnosed last year, was in hospital on her birthday in August. So, it will be 12 months next month since our world was turned upside down.

Thanks for sharing your story... Much love.

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Re: My mum's Battle

Postby Janette » Sat Jul 02, 2011 6:29 pm

Faith,
I think Timentin is an antibiotic. I'm no expert though.

I reckon Mum was so lucky to have you pushing for answers. Thank you for taking the time to post in the hope of saving others unnecessary pain. :hugs:
Janette


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Re: My mum's Battle

Postby Gail » Sat Jul 02, 2011 11:01 am

I feel very emotional reading your story, thank you for sharing. :hugs:
"You Gotta Laugh!"

Gail


Diagnosed April 2006,Lumpectomy,17 of 25 nodes positive, chemo, radiation. Finished treatment March 07
Diagnosed July 2012 cancer of mediastinal(nodes around lungs and heart)pelvis and spine. Up for the fight!

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Re: My mum's Battle

Postby Faith2020 » Thu Apr 28, 2011 8:42 pm

Thanks again..


I would have to say the hardest part of the whole ordeal was the misdiagnosis from her leg pain. I went with my gut instinct and I knew it was NOT caused from back injury pain. Not with the amount of pain mum was in. I've never seen anything like it. And it turned out I was right.

I urge those of you who feel in your heart something is not right or if you're not completely happy with your diagnosis, to push and keep pushing for more answers. Don't settle for anything less. Life is too valuable and you wont be missing out on months of needed treatment like mum.

I am still trying to remember the names of the 2 lot of chemotherapy drugs my mum was on. But after those failed, I do remember that she was taking Xeloda in the final weeks before she passed away.

The original chemo treatment mum was on was red in colour. The nurses gave this to her via syringe and actually squirted the stuff through. I looked this up online and a drug called 'Adriamycin' (Doxorubicin) I also remember a drug called Timentin but I have no idea of this was for chemo or antibiotics when mum had septicemia or some kind of other drug.

If anyone could help with these names or those of you who may have or had the same treatment, please comment. Thanks

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Re: My mum's Battle

Postby Crystalady » Tue Apr 26, 2011 8:12 pm

Christine,

It is so commonplace for GP's to overlook the obvious.

I had to insist that I follow my back pain up with scans. I said that I just wanted to have a MRI to get it over with even if I had to pay the whole price myself. I was just so sick of needles that didn't work. He still made me have an ordinary XRay, then a bone scan, then a CT, and ultimately the MRI that I first asked for.

This is where we all have to be conscious of checking on our gut instincts. Unfortunately that means that you never really can assume you're over or cured of this disease.
First diagnosed in Dec 1998. Thyroid cancer 2006. Thought I was free and clear after 10 years but no, mets in spine in Dec 2008. Femara stopped working October 2010.Was on Aromasin and zometa. Now taking Xeloda and Zometa.Xeloda not working Dec 2011. Tamoxifen started. Feb 2012 Now on Abraxane.

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Re: My mum's Battle

Postby chrismelb » Mon Apr 25, 2011 1:28 pm

Thank you Faaith for your mum's story. It brought back to me how my mother was supposedly meant to have polymyalgia but it really was bone mets and her neck was practically 'broken' from it. What sort of an idiotic GP wouldn't have thought about that first when someone had had BC??!! That was 25 years ago. Sorry you had to go through it all with your mum.
Dx 9/03 EBC
5/12 ABC bones-Herceptin,Tamox&Zometa
8/12 Liver mets-Abraxane,Herceptin&Zometa
6/13 Xeloda/Tykerb Xgeva
11/14 TDM1 Xgeva
1/15 Rads to tumour in head
2/16 Whole brain rads lepto. mets, continue TDM1
8/16. Navelbine, Herceptin
1/17 Neratanib Xeloda & Herceptin.

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Re: My mum's Battle

Postby Marydean » Sun Apr 24, 2011 10:19 pm

Thank you so much for honouring your mum by sharing her story like this. :rose: Being present to her like you were is the greatest gift anyone could ever give another person. I'm sure she understood how deeply you loved her and still do. :hugs:
Dancing through life, healing every cell in my body.

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Re: My mum's Battle

Postby Faith2020 » Sun Apr 24, 2011 10:12 pm


Faith2020
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Re: My mum's Battle

Postby Faith2020 » Sun Apr 24, 2011 10:12 pm

Thank you everyone for your kind words. I feel for others out there who are going through what my mother did. I hope all the carers out there are proud of yourselves for what you do. It's tough.

Schoolteacher - Thank you for reading. That is wonderful news. Keep strong and healthy. God Bless

DQ67 - I am sorry to hear about your friend. 44 is so young. My mum was only 52. We can't afford medical 'stuff-ups' anymore. My mum missed out on months of treatment for what was thought to be bulging disc pain. Little did we know it was cancer pain and I never want to have to see anyone go through that again. God Bless.

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Re: My mum's Battle

Postby DQ67 » Sun Apr 24, 2011 7:13 pm

Thank you for sharing your story. :hugs: What a wonderful and loving family you have, Faith. You must have made your mum so proud. :rose:

I lost a friend late last year who was misdiagnosed initially - she was told it was a cyst and not to worry about it. From then on, it was one mistake after another by various medical staff. She eventually died from septicemia in December 2010 - she was 44 years old.
Diagnosed during routine screen in December 2008. Bilat mastectomy, bilat axill clearance, bilat tissue expanders. FECx3+Docetaxolx3. Rads x 25. Tamoxifen. Silicone implant exchange surgery Feb 2010.

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Re: My mum's Battle

Postby schoolteacher » Sun Apr 24, 2011 4:41 pm

Thank you for sharing Faith. Your mum was so lucky to have you. I was diagnosed around the same time as your mum and had a mastectomy also so her story struck a chord with me. Fortunately, I have not had a spread and am well still.
You must miss mum terribly. This disease takes so many women too soon :hugs: :hugs:

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Re: My mum's Battle

Postby Janette » Sun Apr 24, 2011 11:39 am

Hi Faith,
I really appreciate you sharing your Mum's story with us, I also love the footprints verse. She was very lucky to have such a devoted daughter and family. :hugs:
Janette




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My mum's Battle

Postby Faith2020 » Sun Apr 24, 2011 9:37 am

I hope I am posting this in the right section - I have posted it in 2 sections ans I was unsure

Sadly, my mother is not her to tell her story, so if I may I'd like to tell it for her. I guess it is our story really as I went through the entire journey with her. It is quite lengthy so I hope you will take the time to read and comment if you wish. Thank you

I'm a 26 year old woman and I cared for my mother for 12 long months with this disease. Parts of it are becoming a bit fuzzy now such as medical terms etc so please bare with me! I guess most breast cancer cases begin with a lump in the breast. My mother's did. She always had small lumps in her breasts which turned out to be nothing. One day she noticed a lump that started increasing in size and she was terrified to get it checked.
After mammograms, ultrasounds, blood tests and biopsies, poor Mum was diagnosed with breast cancer in November of 2008. The day we knew all our lives would change. I made the first step to change and I quit my job. There was no way mum was going to do this alone. I wanted to make sure she didn't have to wait around and see if someone could have a day off work to be with her or come home early when she needed help. I was going to be there and I was. Mum suffered from other medical problems too, so I took care of all her medicines, prescriptions etc.

The good news was, the cancer had not spread to the bones or organs. The bad news was, mum needed a mastectomy. The lump/ cancer had taken up almost half of her breast. 2 Lymph nodes were also taken. The surgey went well and she started to come to terms with the fact she wouldnt have a breast. Breast care nurses organised a synthetic breast for mum in a bra and she was happy with this.

Mum's oncologist said her type of breast cancer was unusual. What is unusual supposed to mean? Another word they used was aggressive. That was enough for me. I didn't know what to think. At this point mum was handling things wonderfully. So brave and full of courage. She took the news well as was eager to start chemo. At the same time, I could see through her courage and I knew she was scared. Her spirits lifted when her doctor said she had a 70% chance of full recovery...of being cured...of life. I think mum carried this through with her during chemo. I can't remember what the drug was called. I used to memorise these things, say the names of drugs over and over in my head until they stuck. I can't remember them now..she got through her chemo with flying colours. She was tired, but never really sick. A couple of her meds needed to be altered because of the chemo, but those couple of months were wonderful.

Mum became somewhat depressed and feeling sorry for herself when her hair started to fall out. My sister had a wig shipped over from the States and I have never seen a brighter smile on my mums face than the day she put it on and looked at herself in the mirror. I have always wondered what she was thinking. We got mum out of the house as much as possible - lunches and dinners, trips to the movies and shopping. Everything was working out beautifully and we began to wait for mums radiation to start. She was well on the path to recovery. I truly believed that at the time..

A short time after mum finished her chemo, she started complaining of a sore leg. She described it as shooting and stabbing pains down her hip and things to her calf. We got her in to see the GP who diagnosed it as sciatica. After time, mums pain got worse and worse. It got so bad we took her into emergency at hospital. They said she had a bulging disc in her back which caused the pain and helped us out with some medication. The medication did nothing. I don't think I have ever seen someone in so much pain. Mum was in agony. It tore me up to see her like this. I would cry uncontrollably. It really did something to me inside. And I wish I had never let her see me crumble like that because I thought it would only make it harder on her. I kept asking myself, "Is this really bulging disc pain? Can it really be like THIS? How do people get by?" She couldn't walk or sit. Nothing by lay there. We had so many sleepless nights. I was becoming so frustrated and I started snapping at her. It was all becoming too much and I was afraid I would crumble. But I never gave up. I started reading up on it and finding ways to help the pain to n real avail. Mum ended up going to see a specialist who began giving her injections into the injured area as treatment. We thought it had worked. And it worked almost instantly. Mum said it did wonders and she was happy the pain had gone. 24 hours later it returned and we went through another round of injections. After altering pain killers, mum finally found some kind of relief from the pain...if you can call it that. She was so drugged up we couldn't get her out of bed to go to the toilet. I dint think she knew who she was or who we all were half the time. Ok, the pain was gone, but it was like mum was too. A new problem to handle. I started praying to God......Eventually, we had some help from a Palliative doctor who really fixed up mums meds. She was coherent, not so drowsy. I was able to talk to my mum again and spend time with her. Laugh with her and say by her side when she slept. And I continued to pray.

I wont forget the day mum had her appointment to see her doctor for radiation. From being taken to emergency that night, they had the records of it. Her doctor said he was not convinced that what mum was experiencing was a bulging disc. After a bone scan and full body scan we went back to see him. Mum had metastatic breast cancer - it spread to her hip bone and liver. Mum looked at me in the doctors room that day and mouthed the words, "I'm dying." I felt immense love and sorrow for mum this day. She knew it as well as I did. It took EVERYTHING I had in me that day not to let my eyes well up. I had to be strong and take in the news. To find out what I needed to do for mum. There was no point in the radiation now. Instead, mum had radiation on her hip. Another great painkiller. And it worked. Now, mum was a heavy woman so there was a chance her hip could break after the treatment so we had to be careful. Her weight was also brought up in her return visit to the oncologist who said, "The chemo didnt work. Maybe that wasn't the right treatment for you." I could have called him every name under the sun that day. Why was it the wring treatment? What kind if a thing was that to say?! He also said if mum was lighter she could have got herself moving and helped her body to heal. I guess because mum was a heavy lady all she could do at that time was rest. Her spirits dropped and she couldn't fight. And she needed to start more chemo. And she did. And she got through again and I have never been more proud of her.

I believe mum kept fighting...for as long as she could. She lost so much weight and her face was different. Then she started to have these episodes where she would start blacking out. Partly from her drugs but something was wrong. After many trips into hospital with this, they said she had Septicemia. She almost died. Twice. You can imagine the sickness and sadness we felt for mum. But she pulled through. After more scans in hospital, that's when we received more bad news. Mums liver was going...and quick. They sent her home as they thought it was best for us all. Mum knew. And still she stayed strong. She was permanently hooked up to pain killer on a little box that she wore around her shoulder. Nurses would come in and change it as necessary. And mum slept. I remember crying while she slept, looking at her and telling her she would be in a better place soon. And how much I loved her. Later she started vomiting and nothing would stay down, when she could eat. Palliative nurses came that day and said mum had weeks left, maybe days. I was left to make the decision of whether to keep mum at home or send her to hospital. Mums wish was to die at home, but the family couldn't handle it. I could never step foot inside the house again if mum died there. And I knew she wouldn't hold that against me. So mum went into hospital. I never saw her awake again. She was heavily drugged and just slept. The nurses told us to carry on like normal, talk to each other and to her as she could still hear. And we did. I noticed the end was near when mums breathing changed. It was gaspy and heavy. They said it was normal. The last night mum was alive, we sat in her room as a family. Myself, my father and my sisters, laughing about old times. When I got home that night, my sister called and said she had gone.

12 months. That's all it took from diagnosis to when mum lost her battle with breast cancer. It's nearly been 2 years this November. Some of me blames her doctors. Especially the emergency staff in hospital for knowing mum ad cancer and not checking properly. Just a bulging disc...
Mum is in a better place now and I wanted to share her story here. Each anniversary of her death, I donate to Breast Cancer. I pray that some day there will be a cure.

My mum was the most wonderful, generous, caring, kind and loving person I knew. She is my best friend. It's hard to lose that but I know she is with me. I'd like to add a verse from mum's favourite poem..

FOOTPRINTS

The Lord replied, "When you saw only one set of footprints, it was then that I carried you."

I love you mum


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