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Strange day yesterday

Hi ladies

I’m retired from dentistry but still own the business and have to stay on the GDC list and therefore have to still go on courses and do my cpd even though I don’t go near any teeth!!!

Anyway went on an all day course yesterday with my friend..in Peterborough so didn’t expect to see anyone I knew

Of course someone who I know vaguely but has obviously heard of my mbc through the grapevine and came rushing over..Hi Barbara heard you’re not well how are you?...I looked at her said I’m fine how are you?...she shut up then and we talked if other things..I had no intention of talking about illness

I really enjoyed the day..felt ‘normal ‘ felt like a professional person of some importance instead of a bloody cancer patient

Also one of the lecturers was radiographic diagnosis..some of which were of mbc if the jaw and it didn’t upset me strangely because it wasn’t me it was a patient

Barb xx

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We have to find the things that help us be "normal" and realize that we are not (just) a cancer patient. I am glad you got out and felt some freedom from cancer. It takes a lot not to be that cancer patient constantly

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Thanks for sharing..and I am also thankful that you are sounding more upbeat and better! Many years ago I worked in a health care/medical school setting with a large pediatric cancer center. It was in the days when childhood leukemia was literally 98% fatal. The head oncologist was a wonderful person and a great teacher and he taught us to think and speak at all times the following: those who we care for are first and always "kids that happen to have cancer", not cancer patients. You have reminded us of this valuable lesson. Good teaching, Barbteeth! Scans do matter, blood work and markers are important, chemo works, but perspective also matters tremendously. How we describe, define and deal with our common diagnoses to ourselves and to each other and our circle of family and friends can be healing as well. That's why this chat site is , for me, a critical and very effective Rx for my caring for myself...and hopefully, along the way, a little help and caring for our fellow "Chatty Cathies" (No offense meant to any real Cathies out there)

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Sounds like a great day Barb and I think just answering briefly and moving away from the topic is the way to go. If nothing else it for most people shows that you are not interested in talking about your disease any further and that you are there for an outing and information session. I'm actually going to be attending a Gastroenterology conference in May here with a guest speaker actually from the UK. Previously I was responsible for bringing him here a number of years ago and he sent me an invite so I really can't say no. This will be my first time around so many in my specialty area and no one knows my diagnosis so I will have very quick conversations for certain. Thanks for sharing your experience.

Sandra

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Good way of handling it!

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Hi Barb,

I'm glad you were able to go on the course as a professional and get so much out of it. Good for you for turning the conversation around when the lady wanted to talk about the disease. It's your call and I would probably have done the same thing!

Sophie ❤

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Hi Sophie

Yes I got out of that one!!..

Barb xx

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Hi Barb,

That's great! I can't stand the pitying looks when the topic comes up. It's like I have lost my identity, and am now "Sophie the cancer patient" in some people's eyes.

Well, it looks like I have finally made some progress with getting the shingles vaccine (after five weeks of regular phone calls and lots of waiting!) I called my doctor's surgery in the morning to see if they had received the letter of authorisation from my oncology nurses, and there was still no sign of it.

So I called and spoke to one of the oncology nurses and she told me she had sent out the letter after our last conversation recently, but for some reason it never reached the doctor's surgery! After four phone calls back and forth today, I finally asked my oncology nurse if I could just pick up a copy in person tomorrow from the Macmillan centre before my appointment with the oncology dietitian. She said that would be fine, so I shall be armed with that letter as I head back to my doctor's surgery tomorrow to book the shingles vaccine. I don't give up easily.

Sophie x

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Good for you..it shouldn’t be necessary to have to chase after people..you’re tenacious and I’m impressed

Barb xx

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Thanks, Barb. It hasn't been much fun chasing people, but I finally feel like I got somewhere today! I just keep reminding myself that I am my own best advocate. I know what I want and need and I want to do the best I can to get it.

Sophie x

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That drives me crazy when people I haven't seen forever come up to me and start questioning me about my MBC. They haven't reached out to me but now they are just being noisy! I don't consider myself "sick" as much as I do a chronic illness. I'm glad you were able to enjoy your day!

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Hi

Know what you mean

If they were genuinely concerned they would have made contact at time of diagnosis..just being nosey as you said

Anyway I was pleased that I handled the situation and moved on

Barb xx

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Hi Barb

This has an area that I have to work on all the time. I am a breast oncology nurse. It is very important to me that my patients don’t know my diagnosis but many of my friends and family who know me don’t understand how I can do this work when I have the diagnosis. When I’m at work or at a conference I am there as a health care professional and I have to separate because I love the work I do and refuse to let Mbc define who I am. I too have found that it’s helpful to say “I’m good” and then. Change the subject. Most seem to get the message.

Glad you were able to be enjoy your day.

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I'm clergy and the first funeral I officiated at was for a woman who had died from mbc and had been really helpful to me when I was first diagnosed with advise about where to buy various things, like a good wig. Her family was so worried about me during service planning, but for me it didn't feel any different than planning a service for anybody else I had known and felt attached to. I think when we've had professions that lead us to confront some of the hard things about life and death, that knowledge and history can help us cope with becoming "the patient." It sure has for me. I admire onc nurses! And have found many of them to have alot of helpful info.

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Hi,

You must be a real asset to your patients and colleagues at the hospital. I do sometimes wonder what it must be like for the doctors and nurses who care for us, but for all I know there may be some in my team who also have cancer. I would never know unless I asked and they were willing to share their diagnosis with me. I get why you would not want your patients to know about your diagnosis. You still have to maintain your professionalism and at the end of the day your diagnosis is private.

Sophie x

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Thank you. I’m not a very private person and don’t mind if people know my diagnosis however it is important to me to maintain professionalism but mostly when I care for my patients it’s about them and I would not want them to worry about me.

It’s sometimes hard but mostly I’m so thankful for my knowledge and feel like I’m exactly where I should be.

This group is so helpful.

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I wish you were my nurse! You sound very kind and compassionate and I am sure that comes across when you are with your patients.

Sophie x

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Happy for you that you are able to work. I miss my patients.

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I know what you mean..I worked at the same practice for 41 years so saw generations of families and I miss them....mind you there are a few I’m glad not to see again..if you get my drift!!!

Barb xx

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I am happy you enjoyed yourself. It's nice to get away and enjoy being normal😉

Robin

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So glad you enjoyed your professional day!

Nice to separate from this cancer world for awhile!

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Oh Barb. I am so glad you responded the way you did if that is how you felt. People are so freaking nosey sometimes. Glad you got out and enjoyed the day as you and all of us should! I am standing in a packed train in NY racing to my faslodex Ouch pita without the hummus shot as I call it. You do know this PITA acronym I suppose? Jumped on a local instead of an express... darn... hate being late.....

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Barb

You dealt with it like a pro💕

I had to go see my daughter in

Laws father who has pancreatic cancer and is in the hospital. The whole deal with that family is weird. They don’t want him to know and told him it’s in his stomach and can be treated. As a nurse that really disturbs me ; I had to remind myself not my family . But then her mother asked me how much time do I have? My answer was only God knows. I was so annoyed- ignorance- they have all known since I found out 2+ years ago and never bothered to call or anything. I went because of my son. I hate that with a passion. That is because I don’t look sick or like a person with cancer she said omg. I just went hmmm. And then she asked the time thing. I felt Iike saying what does someone with it look like? I had to leave after that but then she followed me out to ask if I could be his nurse?! I said get a nurse to help at home nd I will help if I can. I don’t know sister warriors- sometimes it’s too much with people.

Love

Frances

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Frances, that whole family sounds weird! I wouldn’t be any more involved than I had to be in that situation. I’m lucky in that the one set of in-laws that live in town are very supportive. They know what is going on with me and I give them updates when I see them but then we are just normal grandparents cheering on the 8 year old as he plays basketball or the 6 year old as he plays baseball. Elaine

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Elaine the whole thing is insane. I am staying far away from now on💕💕

Love

Frances

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That is definitely the right decision. My heart was breaking for you as I read your post. No one should have to endure that kind of stress and ignorance. So sorry.

Sandra

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Oh dear what a predicament

Have you told your son this?..surely he wouldn’t mind if you kept your distance from this family..after all they’re not yours

I find it so cruel of her mother to ask how long you’ve got....maybe you should have asked her how long she’s got!!!!... none of us know

You don’t need these toxic people in your life

I e become a bit selfish since my diagnosis..I used to put up with all sorts of crap in order to not upset people..keep the peace etc...not any more!!

My husbands uncle died last week and the funeral is today..he was debating about going as he wasn’t particularly close to him but there will be some of his family there..I think he was expecting me to go but I told him straight...no way!!!..I’m putting myself first here..why should I get upset...I hate funerals at the best of times and at the end of the day..nobody will care if I’m there or not..

So I’m going to go for a ride with one of my horsey friends instead

As for helping to nurse him...my advice is don’t...may sound harsh but she’s using you!! Especially as you have mbc and need to make yourself your priority not him...I know it’s human nature to feel sorry for him and want to help but there are plenty other people to do that...go and do stuff for you that you enjoy!!

Barb xx

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Thanks Barb so right on♥️

Love

Frances

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I agree with Barb. Take care of yourself.

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Hi Frances,

How did you maintain your composure? I would have had a few words to say to your daughter-in-law's mother. How rude, inappropriate, hurtful and completely offensive of her to say such a thing! I hope you are feeling better now, but at the time you must have been so upset. It sounds like it would be better to let someone else be your daughter-in-law's father's nurse. Having too much involvement might not be good for you on a personal level, but that's just my opinion. Judging by how you have been treated I would distance myself a bit and let someone else step in. How will you feel if they continue to treat you like that while you are there on a professional level?

Take care,

Sophie x

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Yes Sophie keeping my distance

Thanks for your reply

Love

Frances

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You're welcome, Frances. You need to protect yourself from such a negative influence in your life. We all deserve to be treated with care and consideration, not like we are on borrowed time.

Love Sophie x

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I am glad for you Barb that you had such a nice day. I am so thankful for each new day.

I recommend watching the movie “Heal”.on Netflix.

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That's great Barb. I loved being in medicine by my choice - now, we're just as involved on the wrong side of the desk!

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So true Mary and I don't like it one bit.

Sandra

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Neither do I

I feel helpless and not in control

Barb xx

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Very hard to be the patient as a nurse.

Frances

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Just articulating that my many years as a nurse and nurse practitioner were of my free will, happy choice and this current engagement is not, that this is a matter of life and death has helped me cope with it. Naming things helps.

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I am grateful I can still work as nursing is my passion. I went back in my 50’s to achieve my lifelong dream of being RN. I am now doing pediatric home care which is easier on me.

Being 65 with mbc has its limitations but right now I can do it.i would miss it as I am sure you do but when it comes time can’t do it so be it.

Frances

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I admire you for working...I had to stop..was in pieces after my diagnosis..also in lots of pain

I do miss working with patients..I’m 65 as well

Barb xx

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Happy for you.

Just 2 years ago l always came home knowing l made a difference in my patients lives and occasionally felt like l saved someone's life. Now l am not driving and have a horrible memory.

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I'm with you, Barb! No one is "owed" an explanation of your health, whether you are in robust health or are taking meds for a chronic illness. When I'm asked how I'm doing by anyone (even the very few who are aware of my MBC) I always respond as I would with OR without a serious diagnosis. Usually I'm feeling great, and that's exactly how I respond. It ends any further dialogue about my health! XO Linda

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I agree...if you say you feel great it stops further questioning...usually!!

Barb xx

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I know this reply is in the wrong spot but it has to do with ibrance and something I learned speaking with the oncologist at the pharmacy I use, Briova. Every little tidbit of info may be helpful ... you just never know. Anyway, what she told me is that they see ibrance prescribed in 21 pill and 14 pill monthly amounts! 21 on 7 days off and THEN some take it 7 days on 7 days off and so on ... had never heard of that regimen before so thought I'd see if you had? i will ask the onc about it when I see him as I like the sound of that. I've heard of the 5/2 but not the 7/7 ... you?

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Not heard that..I do 3 weeks on..1 week off

Barb xx

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I used to do 3 weeks on and 2 off often because of neutropenia. I have a new onc since August he's not worried about neutropenia as long as the anc is heated than .5 so now I'm on 3 weeks on and one off.

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Are you on 100mg?

Barb xx

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I'm on 75mg, had to be lowered to 100 and then to 75 because of neutropenia. Had scans recently and was called "stable" (hooray, little do they know, lol) for the first time (MBC since 7/17).

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Congratulations 🎉 on your stable scan results. Feels great doesn't it? Wishing you continued stability for a long time. Take care.

Sandra

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Thank you , Sandra. Wishing you the best as welll.

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Haha re stable!!

Very good news...you’ll soon be at two years ...it’s about one year for me

My markers keep going up so may have. To change meds,..ugh

Barb xx

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Thanks, Barb, glad l could make you laugh. Here's hoping you are one of those people whose tumor markers are totally unreliable and you can laugh when they call you stable 🙂

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Mine are going up also. At 109 two months straight. MRI is this Sunday so we will see if it did anything💕

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