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What happens....

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Re: What happens....


@Joemic wrote:

Hi Thurnefi

I'm pleased you found my post useful, it makes it worthwhile posting stuff when you know it helps somebody else😊

I do hope your appointment went well and dare I say it, had all the help you needed and a plan for future support.

It is a relief when the intervals between down days get longer, it psychologically helps you get on with life and actually think about planning for the future, even if it is a month or two in advance, it's way more than I felt able to do before👍🏻. I have no doubt that you will get there but take your time and don't try and force it or you'll end up doing the 1 step forward and 2 back. BC definitely messes with your head that's for sure😬.

Joemic x


Hi Joemic

Had my appointment and all discharged.  The appt itself was something of a waste of time really, but I suppose it is good that I have no further appointments, beyond mammos & scans (hopefully.)

You have hit my nail on the head - I can't get on with life yet.  As you say - something that can't be forced, but I do wish I could speed things up in that direction!  I do feel very stuck where I am - which is better than it was, but still not quite where I want to be!  All the helpful support here is steering me in the right direction, I feel sure.  Thank you xx

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Member

Re: What happens....

Hi Thurnefi

I'm pleased you found my post useful, it makes it worthwhile posting stuff when you know it helps somebody else😊

I do hope your appointment went well and dare I say it, had all the help you needed and a plan for future support.

It is a relief when the intervals between down days get longer, it psychologically helps you get on with life and actually think about planning for the future, even if it is a month or two in advance, it's way more than I felt able to do before👍🏻. I have no doubt that you will get there but take your time and don't try and force it or you'll end up doing the 1 step forward and 2 back. BC definitely messes with your head that's for sure😬.

Joemic x

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Re: What happens....


@Joemic wrote:

Hi Ladies

Just thought I'd update you following my appointment with the breast care nurse.

 

There was no check up or breast exam - she did chase up my mamo as I am over a year post first surgery, she was a little surprised that I had had no appointment letter yet.

 

She basically recapped on my diagnosis, treatment and continuing meds - I sat patiently and listened although to be fair I could have told her about it because like many of you ladies I know it verbatum. I was a bit surprised that she told me rather than asking me to explain to her, so she could have checked my understanding and corrected or explained throughout as required. She did mention the moving forward course I could attend if I wanted to.

 

In a nutshell, apart from a yearly mamo there are no further appointments until 2022 when my Bisphosphonates are due to be discontinued and then 2024 at the 5 year mark. There are no breast checks - she said they leave it up to the patient to contact them if they think they feel anything has changed, feel a lump etc or have a question.

 

She did give me copies of my Oncology letters which I had asked for but not received (she seemed surprised that I had not received any oncology letters), apart from the last one from nov which apparently hasn't been put on the system yet!!!!!.

 

So that's it for me not quite sure how I feel about no contact until 2022, I think I find it kind of strange when so many others seem to have regular followups for 5 years but on the other hand feel happy to get on with my life - or at least try to, its still up and down at the minute but the down is slowly getting longer in between.

 

Joemic x 

 

Joemic x 


Joemic - thank you for posting this.  I have my appt today and I think mine will be similar to yours, so it is good to hear about it.  And I am really pleased to hear that the time between feeling down is getting longer - I am longing for that day...

Hugs xx

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Member

Re: What happens....

Hi Ladies

Just thought I'd update you following my appointment with the breast care nurse.

 

There was no check up or breast exam - she did chase up my mamo as I am over a year post first surgery, she was a little surprised that I had had no appointment letter yet.

 

She basically recapped on my diagnosis, treatment and continuing meds - I sat patiently and listened although to be fair I could have told her about it because like many of you ladies I know it verbatum. I was a bit surprised that she told me rather than asking me to explain to her, so she could have checked my understanding and corrected or explained throughout as required. She did mention the moving forward course I could attend if I wanted to.

 

In a nutshell, apart from a yearly mamo there are no further appointments until 2022 when my Bisphosphonates are due to be discontinued and then 2024 at the 5 year mark. There are no breast checks - she said they leave it up to the patient to contact them if they think they feel anything has changed, feel a lump etc or have a question.

 

She did give me copies of my Oncology letters which I had asked for but not received (she seemed surprised that I had not received any oncology letters), apart from the last one from nov which apparently hasn't been put on the system yet!!!!!.

 

So that's it for me not quite sure how I feel about no contact until 2022, I think I find it kind of strange when so many others seem to have regular followups for 5 years but on the other hand feel happy to get on with my life - or at least try to, its still up and down at the minute but the down is slowly getting longer in between.

 

Joemic x 

 

Joemic x 

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Re: What happens....


@Joemic wrote:

Thanks Jaybro

I've no idea who my original breast nurse is, I thought I did but saw 3 different ones🙄. Agree about the oncologists, mine never really gave any info apart from to sign me up for chemo, then for literally 3 mins to review at 5th out of 6 cycles, the chemo nurse who did the other reviews was so evasive and didn't answer any questions- she said she would ask the onc but never got back to me. 

The radiologist nurse didn't fill me with faith, she wouldn't even tell me the stage - said they didn't do that. At that review she checked my skin said everything was ok and referred me back to breast nurses, I requested a copy of the letter they were sending to G.P and I'm still waiting 2 months later.

I'm getting annoyed now, I've asked questions about my diagnosis but haven't recieved any info since surgery surgeon. Onco nurse said they don't send copies to patients as they get upset. I'm totally different to you in that I needed to know - I cope much better knowing, even if it isn't good news. What I'm not good with is not knowing and now I think they're hiding something from me - even if they're not I now think they are because they've evaded my questions and not sent copy of requested letter.

I guess I'll see what the breast care nurse says - if I'm fobbed off again, I'll go to PALS, I need to know so I can properly move on despite what the results may be.

 

Joemic x 


Joemic

You have a right to see your medical records - see https://pcse.england.nhs.uk/services/gp-records/accessing-medical-records/ and https://www.england.nhs.uk/contact-us/how-can-we-help/how-do-i-get-a-copy-of-my-health-medical-recor...

xx

PS I reckon you are at my hospital - sounds as inept :-D

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Re: What happens....

Thanks Jaybro

I've no idea who my original breast nurse is, I thought I did but saw 3 different ones🙄. Agree about the oncologists, mine never really gave any info apart from to sign me up for chemo, then for literally 3 mins to review at 5th out of 6 cycles, the chemo nurse who did the other reviews was so evasive and didn't answer any questions- she said she would ask the onc but never got back to me. 

The radiologist nurse didn't fill me with faith, she wouldn't even tell me the stage - said they didn't do that. At that review she checked my skin said everything was ok and referred me back to breast nurses, I requested a copy of the letter they were sending to G.P and I'm still waiting 2 months later.

I'm getting annoyed now, I've asked questions about my diagnosis but haven't recieved any info since surgery surgeon. Onco nurse said they don't send copies to patients as they get upset. I'm totally different to you in that I needed to know - I cope much better knowing, even if it isn't good news. What I'm not good with is not knowing and now I think they're hiding something from me - even if they're not I now think they are because they've evaded my questions and not sent copy of requested letter.

I guess I'll see what the breast care nurse says - if I'm fobbed off again, I'll go to PALS, I need to know so I can properly move on despite what the results may be.

 

Joemic x 

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Re: What happens....

Hi Joemic

 

For me, radiotherapy and the radiotherapy breast care nurse took over. I only saw my original breast care nurse because I asked to (appointments with the oncologist aren’t helpful). I went with a list of issues. We talked over practicalities, made sure I was getting support in all the required areas and, at long last, discussed in detail my diagnosis (I’d never wanted to know before). That was hard but she was brilliant, full of common sense.

 

The mammogram was separate (it came from Breast Imaging Dept) and didn’t involve any discussion. In, slap it on, out again and wait weeks for the results. For me, there was consolation in being a mono boob woman!

 

With luck, you’ll soon be ‘free.’ Till your next check ups...Good luck x

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What happens....

Hi ladies

Don't have a clue if this is in the right place or not but could anybody tell me what happens at your first appt with breast care nurse after being discharged from oncology.

Joemic x