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Bone mets - please join in

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Re: Bone mets - please join in

hi jellytot83,

i wish you all the luck in the world and i also know you will be receiving loads of hand holding and good vibes,so from me to you ALL THE VERY BEST .

R enee

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Hello ladies,
I have my oophorectomy tomorrow, can I please ask for lots of hand holding and good vibes to be sent my way. Am very nervous but I know it's for the right reasons however it is going to be really emotionally challenging xx
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ff........just hoping everything works out for you. My dear parents were in a care home over here for the last 4 years of their lives.........to 97 and 98, and together..........I made sure of that.......and you are just the sort of person I would have have wished for in their care home. You obviously love the job, and love the elderly residents. It's all that matters to them. You go the extra mile, and I know from personal experience that it is noticed and appreciated, even by those with dementia. People with dementia recognise love, and want to share love. It sounds as though your new manager is going to squeeze love out of the atmosphere in her effort to make the home efficient and make more money. If you leave you will be sorely missed by those who matter, but I understand that you must consider your own situation. I am so sorry this has happened but what can you do? Keep strong and remember how much happiness and love you have given the care home over the years. That can never be taken away.

 

mo       xx

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FF - I can't believe how the new director has acted, both to you and all the seniors that attend the centre. Why on earth does she want to do this job as she seems totally against anything that may help people in the twilight years of their life. Grrrrrrrr. People like her make me so angry. Although I'm sure you won't want to have to deal with any more pressure is there an organisation you can report her to? Or the charity's head office? Presumably it is a charity as its a not for profit organisation? In the UK I'm sure someone like her would be reported although we do seem to have some badly run senior homes from what I've read so it's not easy I'm sure. As to how well you're doing your job etc you obviously love it and are good at it otherwise you wouldn't have volunteered for so many years. You have a heart of gold so don't let any stupid jumped up director tell you any different. I hope you have been able to step away from the situation by going camping, a good plan with no wifi! And that you get one of the other jobs you have gone for. They will surely miss you when you leave, as you will them, but you have to do what's right for you and the new director will cause you so much stress it won't be worth it.

Nicky x

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Oh FF, how awful for you, This woman is a disgrace!
You can sleep at in the knowledge that you are a lovely, kind caring person......she most certainly cannot! You are not too soft you are a compassionate selfless human being, I soooo hope things work out for you as I know you love your work.
Take care, hugs Janette xxxx
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Ff. How did that woman get the job? I'm devastated for you and sad for all who attend the senior centre. We all know what a caring person you are, what a loss you will be to them all. Hope you can enjoy the weekend.

Bon xx

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Dear FF ,
Your new director is definitely not fit for the centre and also not a nice person. She is not able to understand your caring and concern for the seniors. Instead of behaving rudely she should take suggestions from you and make use of your experience. You have put so much effort and done such wonderful work for the centre which I am sure everyone will appreciate. I am sure you will find another job which as good and satisfying as this one. Of course you have been with the centre for 21 years, a long time and it is difficult to get over the attachment. Meanwhile enjoy your camping. Love and best wishes.
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Oh FF, my heart goes out to you. She obviously has real personal issues and a lack of self worth if she feels like she has to push her weight around, making sweeping changes for the sake of it. You are a kind and caring  person who deserves better, don't ever forget that. The Universe will be kind, perhaps this will be a new pathway for you.  

Anyway you are a beautiful person, go camping and try to chill. Xxxx

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Well ladies ..I did it ..got up at silly o'clock for Next sale ..it always used to be my thing ( they always joked about burying me in next sale queue !!) Before this cancer lark hit me 2 years ago, I just wanted to see if I still had the gusto to do it! Proud of myself for disturbing hubby oops (and neighbours as I leaned on the car horn by mistake)
There was a lady there ..still in her pj's and hair curlers. .standards please ladies !
Hugs xxxx
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Hi funnyface

please do not put yourself down by saaying you are too soft ,as that is not the case ,the way i read it is you are a wonderful caring person and there are not many around i can tell you,so please go away and enjoy your break ,dont even think about this evil parasite that is taking over ,and i am sure you will find your time and effort worthwhile in some other job which i hope will come to you soon .

i do know exactly how you feel as have gone through same myself .

take care 

renee

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Carolyn, We both get disability which is bc we are disabled and not old enough for social security. Once you reach full retirement age the disability payment then becomes social security. You still get the same amount you just don't have to prove anymore that you are disabled. Hubby gets a small pension. The carpenter union punishes you for retiring early. They keep 60 % of your pension every month for life 30% for retiring early and 30% for not having worked for two years before retiring. The reason he wasn't working was bc the economy had clashed and there was hardly any work. Many if the carpenter had lost their homes. I was a stay a t home mom and then a school bus driver. No pension.  Luckily for Ross he cleans the center while it is closed. He is the only one there and doesn't have to deal with her BS! I am going to try and relax!  I guess my heart is just too soft! FF

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Hello ff
OMG. .that is horrible and I know you love the job too ..hope you get another one soon where they appreciate you and hubby ...I expect you are in between age that you don't get your state pension yet ? In the UK they move the age gatepost all the time ..mine was at 62 ..but some ladies have to be 66 ..not sure what US offers for you ..pension wise

It's miserable for you as you are living with cancer and side effects. .the stress is not good but neither is having no income. .
I worried when we retired how we would survive on less money but it's surprising how much I saved by not buying office suits, buying lunch daily, petrol and buying ready meals and convenience foods.
Anyway. .forget about it and enjoy your weekend.
Xxxx
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Hi Girls! Sorry I've been quiet.Life at work has been miserale. They fired our director of the senior center. He was a wonderful person but terrible at the finances. This is a non profit and he wasn't getting the funds. Move on new director! She came in told me my work was preschool, that I don't do enough work and asked if I was even capable of looking anything up on line!! She also said she didn't understand the Circle of Care program I was running and was closing it. I tried to explain the program to her and she said she didn't care. I explained to her that the things that looked pre-school to her was the best work of the dementia clients and they were proud if their work. That they had as much right to display their work as the seniors who do fine art work. She said NO! She said it gives the senior center a bad reputation. The next day when I came in she had ripped down their stuff and had thrown it away! As far as not doing enough work I was furious! The day she said this to me I had done a fund raiser for the center. I shopped the day before (on my day off) for supplies. Hubby works at the center too. He is the janitor. He shopped with me.Donating his time too! Then we sliced up all the onions and tomatoes for the hoagies (you probably call them subs). We got the production line ready fir the next day. Hubby got up early and drove to a bakery in the city to get good rolls. I got up early and went the opposite direction to get potato chips. Then we made the hoagies. Then I worked my shift. I spent 8 hours of volunter time plus worked my shift. Ross did the same! We made $500 dollars for the center! Mind you she didn't show up to help. She also said that if the seniors don't like her changes they can leave. It is their center not hers. She keeps throwing things away without asking what they are used for. We have a l day in a motorized wheel chair. She said she is going to tell her she needs a a smaller chair! She set up a little table inside the doorway  and stated she doesn't care if they trip over it and fall. They are seniors and will fall anyways  she says! We have a table of seniors who don't join many activities, but are happy chatting. They come their to socialize. This is the purpose if the center. It is so they are not home alone! She said she plans on getting  rid of them bc they make the place look bad with their inactivity. She speaks highly to our board of her love for the seniors.How she wants to make an amazing place for them. If the circle of care program failed, I was to be made director of programs. This was the old executive director's plan. She knowsew this and discussed it with me. On Monday she brought in a new lady and introduced her to me first telling me this lady was director of programs.She has succeeded to make me feel like a nobody! She is nothing but nasty to me. Other employees have said they can't believe how she threats me. I even had presented her with ideas for a diversity program I created, a free senior bullying program I found, a community give back program (making and filling stockings to be given out at a community Christmas dinner), and a community outreach program to put our more active seniors in the public eye. She said, no to all of them. Then that's when she told me I don't do enough work.I certainly don't know what I should be doing!! I have applied for two jobs. I'm positive I got the one. Sure hope so. I think she is going to fire me and I don't deservd it. I have volunteered fir the center for 21 years. I have worked there 4 years. The center and seniors are a big part of my heart! The way she is read ing the place apart is ripping me apart. I desperately need out, but need my money too. Please cross your fingers for me. I've been crying every day!  I won't be in for a couple days, going camping! No internet there!

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Hi Jellytot, what strength of co-codamol are you taking? Do you know there are 3 strengths of it?
8/500mg
15/500mg
30/500mg
I'm the same if I take 30/500 I'm fit for nothing, so I either take 15/500 or 8/500 along with a naproxen 500mg.
Hope this helps, hugs Janette xx
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Thank you Renee x

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Hi jellytot

would your doctor prescribel low dose morphine ,as i had that and did not make me sleepy ,about the only thing that worked but am off it now as can become addictive,there is also tramadol but that effects people differently .dont know if any of this helps but hope so

take care 

Renee

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Thank you Stripey.

 

Suze - Brilliant news! Luck, love and life to you xx

 

Can anyone recommend a good painkiller that isn't drowsy. I find co-codamol is the only thing that really gets the pain under control but it makes me very sleepy. I really want to go back to work and I can't unless the pain is under control and I'm not asleep!

 

xx

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Hi suez,

Great news ,wish we could get more like this daily ,

Go ahead and enjoy life ,we aree wishing you all the best for the future.

Renee

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Suez, that it amazing news, sooooo happy for you.
Wishing you all the best for the future!
Hugs Janette xxx
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Hello suze
That's great news and it's been nice having you here but go off now and enjoy life xxxxxx
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Fanatastic news. If this has taught us all anything it is to enjoy what we have. Wishing you all the very best  Wendy x

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Suze, Estatic for you!!FF

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Fantastic Suze xx

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This is just to say Goodbye and to wish you all well. 

I've had confirmation now that the lesions on my spine are not cancer and no longer have to take letrozole,

Keep fighting this dreadful disease ladies and thank you for all your support. Hugs Sue x

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Jellytot! I haven't been on the forum for ages but just dropped in today and saw your question about an oophorectomy.
I had one last year. It was very easy compared to lots of the other things I'd had and you've probably had.
I had 3 incisions, was in and out in a day and exactly a week after the op I travelled by train to my mindfulness class and had lunch out (and I'm a wimp!!).
There were just 3 little plasters covering the incision areas (one was in my belly button!).
I found the referred pain a bit uncomfortable... It was sore in my back/shoulder a bit and I felt full of wind (from them puffing air in so they can see what they're doing). I set up camp in my living room, right next to our kitchen and loo and was a bit couch bound for a few days. But it really wasn't that bad.
If you'd like to know anything else please give me a shout. Xxx
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Chrissy that's great news! What a horrible few days you must have had xx

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Hi Jellytot83,

 

Returning the hugs back to you.

Went to see oncologist on Tuesday and the blood test i had last week shows my markers had gone down. Oncologist said the raised markers on the previous blood test was a blip and the treatment is working. 

 

Phew, had a terrible few days of worry. I expect this one of the things we have to go thru. 

 

Hope you have got your head round the diagnosis and your treatment goes well.

Take care,

Crissy xxx

 

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Thank you Wendy. Still confused but oncologists secretary has phoned today to say I'm going to receive a letter soon. Xx

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Suze

I am keeping my fingers crossed that your ray of hope becomes reality

Wendy
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hi all,

everything has been a mess!
first of all the pain has been bad really bad in her tibia! ive never heard my mom say shes in pain she cries and can barely walk sometimes!

second erubilin and immuno were suppose to start yesterday, but the clinical trial nurse forgot to inform her she needed to be off the arimedex 2 weeks ago so it doesnt interfere with the immunotherapy. so treatment got postponed although we found out yesterday the computer did not choose her to be one to take erubilin and immuno therapy together. but in order to still have the option to take immuno after 9 weeks incase the erubilin doesnt work she still needs to have stopped the arimedex for at least 2 weeks before.

so as for treatment were not sure if this is
good, if this is bad. im still far and shes just sooo sad, sooo in pain. erubilin is set to start on the 21st. thankfully ill be there. the onc believes the erubilin should be enough for the pain and she wont need radiation....but im not so sure because its causing her so much pain! the oxycodone and ibprofeun together arent helping!

also found out the lesion on the lining of her lung is 6.3 cm that also scared us to death....i dont know what happening and why its all so confusing this time....


joelle praying for a cure xoxo
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Hi funny face and carolyn 

 

i arrived home about 5pm and yes completely shattered but hey if it does some good i wont complain ,i do have a hospital about 20 minutes away but they can  not give perjeta for some reason and i do not have chemo as they pulled me out of that as had no quality of life with it so now i am on herceptin and perjeta,and always a wait ,but today was even worse as the 9am appointments did not get in until 11 30 so right behind all day ,never mind i will survive ,for all my hair is not,, as coming out badly ,i do  have a wig but feel uncomfortable in it ,guessing i will have to get used to it.

bye for now 

renee

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HI 

F

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Good evening ladies. I've not been on for a while because had confusing information from different consultants. Still not had biopsy because it's too small and the neurologist feels that its atypical haemangiomas, which are benign tumours. The oncologist said several weeks ago that she wasn't sure whether it was cancer or possibly a lesion that has previously healed. So, I'm having an MRI after three months to check what's happening. I've been following all your news and think you're all amazing! Also, incredibly busy because my co teacher is off and preparing to pass on old class and find out about new. 

I will let you know what happens next but meantime, hugs and best wishes to everyone. Xx

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Pmol
I live in fear of letrozole stopping working too , it has a lot of work to do!! I have always lost a lot of hair in the 20 months I have taken it ..and realised that the last 6 weeks it stopped. .but in the shower this morning ..hair thinning again so fingers crossed it's still doing something ? Maybe I have false hope ..oncologist says on average it works 3 months to 3 years ..everyone is different.
Xxx
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Hiya ff
Hope u enjoyed your weekend away ..it was a hot one here ..I huffed and puffed and was a real sweaty Betty! !!
Hello Renee
How are you now ..assuming a long day at hospital and you are resting now .
Hugs xxxx
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Renee, I'm sorry you have to go through a lot just to arrive at chemo. You must be exhausted and fed up before you even start. I hope they treat you well. It sounds like a long day. FF

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 PMOL, That must be so frustrrting to find out the drug didn't help at all! Best w I she's with exemestane. I'm taking it along with evermolimus. FF

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Yup PMOL, looks like it will be on July 17th xx

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Pmol, sorry to hear letrozole didn't work for you, good luck with your new treatment plan though.
Hugs Janette xx
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Hello Renee
You must be physic. ..I was just thinking of you as we haven't heard from you the weekend.
Best of luck with the treatment ..phew sounds like a all day thing with travelling too but enjoy a few cuppas and some people watching to fill in the day.
Phew it's still hot here but mustn't complain as before we know it ..it will be (swear word coming up) .Xmas ..aah.
Hugs xxx
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hello pmol,so sorry thee treatment has not worked but hoping the next one wwill be better for you.

 

carolyn ,hi just off to have my three weekly treatment ,i am just waitng for the ambulance,then the hour long journey which i hate but needs must ,,,hope you are ok and enjoying the lovely weather .

Renee.

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Hello pmol
So sorry the letrozole magic hasent worked ..hopefully exmestance will be better
Hugs xxx
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Not yet... my onc nurse was BRILLIANT as she pushed for it.   Onc wanted to speak with radiologist first before making the decision and she said to request it anyway and if we then need to cancel it then so be it but at least this way it's on the pipeline.  Have you had a date for your op?? Xxxx

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Big hugs PMOL. Have they given you the MRI date yet? xx

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Hi girls - sorry I haven't been in touch... had oncologist thursday and they said the letrozole hasnt't worked 😞 Tumors have grown and spread and there is a question mark on my liver so will have to have an MRI to investigate further.  If they think it's cancer then I'll have to have chemo. Don't know what the treatment plan would be at all... just trying to take it one day at a time... in the meantime I have started another tablet (exemestane) in the meantime 

just hoping that this works...

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Hi Belinda, totally understand you wanting a "forum break" I do this from time to time. Sometimes you just need to step back and have some time out.
Take care hugs Janette xxx
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Hi Chrissy,

I was only diagnosed 7 weeks ago so I don't have any advice but am sending hugs

xxx

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Oophorectomy advice please! Looks like mine's going ahead this week. How long did you take to recover from the op and what are the side effects like? xx

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Haven't posted for a while but do catch up every few days with whats going on with you all, plus nothing to was going on until this week.

 

I have Secondry bone cancer diagnosed 12 weeks ago, in my spine and skull. Started on Tamoxifen and 4 weekly injection of Denosumab. 

 

I saw my Oncologist Tuesday and she told me my cancer markers were raised. I had another blood test that day and she said if the markers had raised again I would need a scan to see whats going on. 

Today I had an appointment to see her this Tuesday. Cancer markers must have risen. 

 

Has anyone on this treatment had the same thing happen to them and what treatment did they change to?

The thing is I have felt so much better since they changed Anastrozole to Tamoxifen. My joints are not so stiff or painful, it was giving me false hope that the treatment was working, obviously not.

I just want to be stable for a while, as we all do.

 

Have a good weekend

Lots of love to you all,

Crissy xxxx

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hi ramade,

you can have an M R I scan for the brain ,i know as someone has had one i am in contact with ,but also my breast cancer has gone to my lungs and liver ,but not the brain or bones ,so am hoping it does not spread further

take care renee