Addendum to my vent...

For those wanting to share with others living with secondary or metastatic breast cancer.
ruth1
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Re: Addendum to my vent...

Postby ruth1 » Thu Aug 27, 2015 11:55 am

Tigger, you are amazing - you begin your post with - "I am very fortunate". That's great that you can feel that under all this weight.

It sounds like you've organized well with a scooter and fundng etc. Lets hope the car is fixed. I just find it incredible that you manage at all with chemo and a child needing so much supervision. I am a single mother and I remember trying to shower with an active toddler. I changed my times around and showered when she was asleep after she locked me in the bathroom one day. The old door had a slide lock on the outside of it and she used it - she couldn't slide it back to get it open so a neighbor came in after much yelling out the window from me. Funny now but not at the time.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: Addendum to my vent...

Postby Janette » Thu Aug 27, 2015 11:44 am

Tigger,
I hoped you might receive funding for the scooter, I believe that's why they are cheap 2nd hand. So helps everyone really. I hope things get better for you. :hugs:
Janette


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Re: Addendum to my vent...

Postby Tigger » Thu Aug 27, 2015 12:56 am

I am very fortunate. Because my youngest has a disability and our circumstances are a bit extra challenging at the moment we qualify for some special funding which will likely pay for a mobility scooter that is safe for both of us to ride on. They are also going to fix my car as I have to drive my little one to school. I can't put her on the bus because she would be unsupervised for 20 minutes at the school. I only recently felt ok about showering leaving her watching TV for up to 10 minutes because she can disappear in seconds and has no understanding of consequences. She needs to be supervised all of the time. So because I need a car for her they will also pay (hopefully) to get my bomb fixed up at least enough to be safer and to pass rego.

I tried out my electric scooter today because my car had to go to the mechanic to get the quotes I need for the funding and I left it there and rode the scooter home, then rode it back to pick the car up. It was quite a lot of fun and all went well until I was getting the scooter out of the back seat of the car at home (it is heavy because of the battery) and I did something nasty to my back. Have been in agony ever since. You gotta laugh. When so much shite happens all together there is a point where you just sit and laugh. On the bright side I have a good supply of pain meds and already have a doctor's appointment tomorrow so will talk to him about what he might be able to do for my back. I think the 4 wheeler mobility scooter will be a better thing for me and it comes apart to put it in the car.

The child is finally asleep so it's time to wrestle the CPAP mask on to her. She slept with it all night last night without me having to adjust the mask or anything. I still woke a dozen times and covered her up each time but it was a pretty good night coz she sleeps with me and I didn't have to get up :D

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Re: Addendum to my vent...

Postby Tracey Gibney » Wed Aug 26, 2015 1:50 am

Tigger my dad used a mobility scooter for a number of years as he had a tumour in his cerebellum. His was wider than some you see around but that gave it better stability, his also had quite wide wheels again better stability. Another friend bought a smaller one with narrower wheels and hers tipped up quite often and she was too scared to use it. Definately look at second hand scooters, I know my mum sold my dad's scooter for a tiny proportion of what they had bought it for, because they are expensive to buy new.
Tracey
EBC 94 aged 34. Mastectomy CMF, tamoxifen. Mets 07 brachial plexus, supra clavicular node, sternum. Treated with AI's Rads x3 Ooph 09. 2014 met to chest wall,surg, rads. 12/14 Multiple bone mets, rt axillary nodes further recurrence chest wall. Failed on Faslodex. 8/15 Ibrance

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Re: Addendum to my vent...

Postby Eirelass » Tue Aug 25, 2015 8:28 pm

Tigger, so wanted to send a :hugs: to you. You have so much going on. How old is your daughter/grandson? You may be better off without the stress of her around, but can understand your concern for your grandson. Hope you deal ok with the chemo xx Pam

Edit: Sorry just read your signature
Dx 28/3/12, EBC, Invasive DCIS; 4/5/12 Hookwire WLE & SNB, Grade 2, 16mm, 0/3 nodes, clear margins, ER+ PR+, HER2-; Rads July-Sept 2012. Tamoxifen. Writing my story www.girlinthepinkfreeruns.com

Cancer will not change you. It will amplify who you already were before you were diagnosed

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Re: Addendum to my vent...

Postby ruth1 » Tue Aug 25, 2015 7:48 pm

Tigger, you are doing sooo well organizing yourself even on chemo!! So good to see you have a plan and it sounds workable. Hope that nausea isn't too awful if it hits tomorrow. I truly hope life is a little easier without the conflict you've had to endure and that the other kids will step up and provide you some decent care - for both you and your daughter.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: Addendum to my vent...

Postby Janette » Tue Aug 25, 2015 6:23 pm

I borrowed my Father's mobility scooter when I broke my ankle. They're wonderful and seem to be very reasonably priced second hand. They can be dangerous, I rearranged shop ends and rolled one, ouch!

It's great that the kids will step up if needed. :hugs:
Janette




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Re: Addendum to my vent...

Postby Tigger » Tue Aug 25, 2015 2:24 pm

Chris, my X has never really helped with my little one. He did finally get the hang of her medications but those have changed over the last few months. He won't use the CPAP machine and he doesn't really know her and understand her needs. My middle girl who is almost 19 and married is currently a daytime nanny for a local family but they are not going to need her from October because the mother will be on maternity leave so I am going to ask her to have a bigger role in my little one's life. She is the one who will take her because my next oldest isn't really in a position to and my oldest is the one I am having trouble with. I did tell my son that he needs to step up and help more and he will, I will just have to remind him because he is a 17 year old boy. My 19 year old handles the youngest really well and they have a great relationship. :D

At least chemo didn't knock me too much. I feel really weak but not sick. The nausea usually hits tomorrow. Had an ultrasound today on my shoulder and I have bursitis in it and arthritis. That makes both hips and both shoulders, no wonder everything hurts. Nothing so far has helped my hips but hopefully a cortisone injection might help this shoulder a bit. It is the only arm that works properly because I have lymphoedema and nerve damage in the other one. I am only in my early 50's and my body is more like an 80 year old. Still going though. :happydance:

I bought myself an electric scooter - as in 2 wheeler - that is meant for kids but it takes an adult's weight. I am going to use it so I can take the little one to the park. I can't walk that far but with the scooter she can ride her specially modified bike there and I can keep up with her on the scooter. I am also looking into a portable disability scooter so we can go places like the Zoo and Floriade in Canberra. My little one can ride with me then if she gets tired and I can get around without having to constantly sit and rest. Has anyone else tried one of those?

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Re: Addendum to my vent...

Postby chrismelb » Mon Aug 24, 2015 9:05 pm

Good on you Tigger you told her like it is!! She sounds very selfish and i think you will find it with just the two of you easier to get a good pattern going. I do think u need to ask the X to step in and help out with your special little girl xo
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.

ruth1
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Re: Addendum to my vent...

Postby ruth1 » Mon Aug 24, 2015 7:48 am

Tigger, I really feel sooo sorry for the way you have been left but on the up side I think you might find having the peace and quiet is much better in the long run.

I think your daughter needs to be away and she can work out her issues - she seems t have plenty to think about.

Your other little one that requires so much care will no doubt benefit from not having conflict around her and the both of you will settle into a good routine. I only hope you manage chemo without too many effects to cope with.

You certainly have things tough and as Rosa said - wish we were all closer so we could step in and help you. :hugs:
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: Addendum to my vent...

Postby schoolteacher » Mon Aug 24, 2015 7:31 am

Hope you had a good nights sleep Tigger and that chemo treats you kindly today :hugs:

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Re: Addendum to my vent...

Postby The new girl » Mon Aug 24, 2015 1:02 am

:hugs: sending you a big hug Tigger,hope you hope well tomorrow after chemo,if we were closer I would step in and help no problem :hugs: ....Rosa

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Re: Addendum to my vent...

Postby Tigger » Mon Aug 24, 2015 12:17 am

Feeling really grieved about my daughter and her son. Neither will reply to my texts asking if they arrived ok. I know she is mad at me because when she was leaving she said to call if I needed her to come and I told her I wouldn't call her because she doesn't like me when I am sick and she hates living here and hates everyone here so it would be cruel to ask her to come back. She just walked out and didn't say anything. All the time she has been here she has been saying how much she hates it and hates everyone and doesn't like how I've changed so what else can I say?? It is true. I will not call her and ask her to come when she hates it here so much. I love her but I really don't need her cr*p and really if she wanted to help me she wouldn't be leaving the day before chemo. :(

It is peaceful tonight. Our first night on our own. My little one has finally fallen asleep and soon I will get her CPAP machine sorted and started. I can't put it on while she is awake because she fights it. Then I can vacuum because there isn't anyone else here (my son moved into our bus when my daughter came) and then go to bed myself. I need to tidy tonight because after chemo tomorrow I won't feel like doing anything. This will be my first week on my own since my husband left. A little bit daunting but by God's grace I will do ok :)

Can't express how much I appreciate being able to vent here. No one else, and I mean NO ONE, has any idea how challenging the things we face daily can be. Thanks again everyone :hugs:

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Re: Addendum to my vent...

Postby chrismelb » Sun Aug 23, 2015 12:01 pm

Tigger you poor thing, too much to worry about. i think your daughter needs to be left to her own devices even tho it involves your grandson. Just remember that when you are not here you can't do anything about it so u may as well start now. Could you get X to take your youngest when u have treatment? As someone else said maybe contact Cancer Council etc to get help. Take care xo
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: Addendum to my vent...

Postby schoolteacher » Sun Aug 23, 2015 10:08 am

:hugs: tigger
This is a time when you should be able to focus on yourself and your health. Despite your concerns, your daughter leaving may be for the best. She sounds so inconsiderate and selfish :(
Do you or could you receive support through the cancer council? Or a local community group?
Thinking of you :hugs:


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