Hi. My name is Angie & I am 44. I was diagnosed 3 years ago with primary & secondary BC at the same time. Mets are in sternum, pelvis & lungs. I have done really quite well in the 3 years. The Tamoxifen stopped working after 18months (further spread round my pelvis) & I was started on Letrozole. I have stayed well on that for last 18months with no further spread. Oncs are very happy that disease is stable at the minute.
My problem is my family, my sister in particular. She is very overprotective & constantly telling me to slow down etc. This came to a head on Sunday when I was at a family Christening - I was very tired (obviously thats not uncommon!!) & feeling a bit nauseous (because of the Oxycontin). Apart from that I thought I did really well… I was the baby’s godmother & managed the whole day without problems & spoke to lots of friends & family etc. However, my sister phoned me yesterday to see if I was better & had got over ‘being so ill’ on Sunday. She said I had looked so unwell all day. I played it all down but then my mum phoned today & was saying how ill I looked & that I’ve big black circles under my eyes. They are all constanly saying that I do too much & are trying tro discourage me from doing things. I know my family are only like this because they love me & are constantly worried, but I need them to understand that I am only 44, still relatively well & active, and that I need to live my life to the full while I still can!! I gave up work a year ago so that I CAN live a full life & still get enough rest. I know in the past I have been guilty of doing too much & being really sore etc afterwards but I have been so much better since I gave up work.
I dont know how to approach my family without upsetting them. I need them to accept that i WILL look unwell sometimes & thats just how things are. I’m gonna look a lot worse in the future!!!
Anyone else struggling with this???
Angie xx
Hi Glasgowgirl
I’m sorry to read you’re struggling with your family. I’m sure the users of this site will be along to support you soon.
In the meantime maybe it would help to talk this situation through with one of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
Also BCC do run a Living with Secondary Breast Cancer monthly support meeting in Glasgow where you can meet and chat with other women dealing with similar things to your self. If you are interested in attending just follow this link for times and dates:-
I hope you find this helpful.
Best wishes Sam, BCC Facilitator
Hi Angie,
I don’t have the same problem as you - the opposite in fact! (People are always saying how well I look, when I’m feeling dreadful!) But I do identify with the issues of trying to pace yourself and get the balance right with secondary BC.
You are absolutely right to live life to the full whenever you feel able, and especially on important landmarks like Christenings. I think we do a lot of thinking and prioritising once we have a secondary diagnosis, and certain activities can take on a greater importance and value to you personally, which other people maybe take for granted.
Obviously I have no idea how ill you really look, but it does sound as though your family members may be ‘projecting’ some of their own anxieties onto you. Do you know what I mean by that? Their reaction seems a bit exaggerated for the reality of the situation, and that can sometimes be a hint that, for them, there is huge emotion hidden behind the comments.
I know you have enough to worry about without taking responsibility for anyone else’s feelings, but I wonder if there is any way you could chat with them about their fears. Are they trying to be strong, to protect you, and therefore not attending to their own emotional needs? Maybe there is someone they could talk to, individually or together. At our local day hospice there is counselling available for family and friends as well as the sufferers themselves. Maybe there is something like that local to you? Or could you get some booklets from BCC for them to read, to help them understand the nature of living with secondary BC.
I don’t know if this is any help. I really wanted to just reply and let you know someone understands.
I hope you find a way to move forward with this, and get them to understand your need to have fun, be social, participate and be the Angie you really are , not ‘the patient’.
Good luck
Jacquie
By the way, I was diagnosed 5 years ago with primary and secondary, and have liver mets.
Hi Jacquie, thanks for your reply, it was really helpful 
. You are absolutely right, they are projecting some of their anxieties onto me. I am the same as you in that people are always saying how great i look (even when i feel like shit!!) & I get paranoid sometimes that people think I’m a ‘fake’ because I look well!!I havent had chemo so dont neccessarily look like a ‘cancer patient’ - to the point that I only use my blue badge if I’m feeling realy dreadful, as I cant bear the dirty looks I get from people!! I think I was so upset yesterday because I know when I’m tired I dont look so great & spend ages trying to conceal my dark circles & grey pallor, so I guess I was just hacked off to find it hadnt worked!! Obviously they are the people who know me best & so will spot the slightest change in the way I look, but I wish they didnt bother telling me!!
I have tried to speak to them before but to no avail. We all went to Maggie’s & they spoke to my Breast Care Nurses but they were both when I was first diagnosed & we were all in a dark & desperate place. I think they havent actually come to terms with things properly since then & dont get the fact that you can live a fairly full life with secondary BC.
I think I need to bring it up myself with my sister & somehow explain that although I know she is only doing this because she loves me & worries about me, it can be counter productive. I know she is going to get upset but maybe thats what is needed to get her to face up to things.
Thanks again Jacquie xx
THanks Sam. I actually phoned the helpline yeaterday & the person I spoke to gave me some useful hints on how to approach my family. I attend the LWSBC group in Glasgow already & find that really helpful.
Thanks,
Angie
Hi Angie,
I’m glad it was a helpful post - I’m never sure once I’ve pressed ‘post’!
I’m sure you will be able to find a way to bring it up with your sister and yes, even if she is upset, it will get it out in the open and help you both in the long run. I wish you the very best of luck. Let us know how you get on
love Jacquie x