I have had secndary BC for over 2 yrs, but had it under control for the last 12 months, however I was told on Thursday morning, that it is up and running again and had spread (despite taxol herceptin hysterectomy etc etc) Anyway this is not the point.
I was told on thursday morning and since then I have spent my entire time trying to comfort and make the people around me feel better about it!
I have talked to my brothers (had a long distance visit from one which was very kind) during the whole time having to say that everything will be alright and asking if they were OK as they get upset - hugging them and being strong.
I then went to see my parents who have been amazing over the past 4 yrs - they talk about practical stuff until neither of them can cope with it and I end up comforting my Mum and pretending it will be OK and making out I am strong and not scared witless.
They I come home to my husband who is in bits - so I have spent the evening comforting him and telling him it will be OK (when we both know it won’t) apologizing for being a rubbish wife (only married 6.5 yrs and been ill for nearly 4 of them)and trying to give him strength.
SO where is my support and is this normal, because to be honest I am tired, scared and completely gutted that my life will be curtailed yet again. I have had a good cry (to myself as no-one wants to see my weakness)!
Am I expecting too much to get some support - other than people saying I am so strong - if I show weakness, everyone else falls to pieces. Is this normal??? I am so fed up with being strong so others are OK and no-one really wants to know how I am feeling! Selfish of me, I guess??
I can totally understand what you are saying. I was diagnosed with secondary breast cancer 18 months ago, and I felt a great burden of responsibility telling everyone the news again because it made people cry, I ended up being strong for other people. Everyone says how brave you are, but there is no choice but to be brave. Talking to a MacMillan Counsellor has helped me. Might help you ??
This is a very moving and thought-provoking post, and I really feel for you. You ask if this is normal, and I think the sad answer is probably yes, because no matter how close family and friends are, I don’t think anyone can fully appreciate what it is like to have a secondary diagnosis until they experience it themselves.
You do deserve lots of care and support, especially now. Do you have any friends or contacts in a similar situation who could talk things through with you, or else perhaps a Macmillan Counsellor as Wendywoo suggests? Or perhaps BCC helpline or one of the live chat sessions?
I totally understand how you feel, I’ve been told just this week my bc is back and only 7 months post treatment from primary dx. I’m waiting on a body scan to determine if its spread which I now suspect it has, I’ve had a stiff neck for some time and I’m convinced its in my bones plus I think I have skin mets on my mx site.
I’m 35 single and have no children, I can’t bear to see my parents so distrought and consequently do most of my crying in private, I feel like I’m trying to put a brave face on but underneath I’m just crumbling. As they both don’t understand whats fully happening at the moment they are in the dark and I think I want to leave it that way, ignorance is bliss as they say, how long it will stay this way won’t be long I imagine.
I can only offer my support and understanding at this moment in time and hope that you manage to find the comfort you so desperately need.
It sounds like you are having a tough time. My initial secodary was found within 2 months of stopping my primary BC treatment (I was 40 then and 38 when dx), but they got it early and since then on herceptin I have had a pretty good run until now.
Do not assume a stiff neck is bad news - I have a painful shoulder and whilst I keep reading stuff into it - that is all it is - a painful shoulder!
You must be like me; awaiting more information which is the week/ fortnight if being in limbo and I find it so hard!
Thank you all for your posts. I did not think I would be alone in offering comfort, rather than receiving and I think I will take your advice as my Macmillan nurse is lovely! That said my husband has just got up and I have asked him how he is - he has explained how tough it is for him (and I know it is as he had a scare some 6 yrs ago), but he has not yet asked me how I am - which might be nice, but I am guessing he cannot cope with the answer! I am a firm beleiver in not asking the question if you don’t want to know the answer so he is sensible, I guess.
I should empathise more as, lets face feeling sorry for someone else is fine, but feeling sorry for yourself is UNACCEPTABLE!
I am posting a link to a BCC leaflet which contains information about the support we can offer you, as geewhiz has suggested it may be helpful to call our helpline for a listening ear on 0808 800 6000, the line is open weekdays 9-5 and Sat 9-2.
You can read or order a copy of the ‘Support for people living with secondary breast cancer’ via this link:
Poppet - I just wanted to add to the comment above about your stiff neck. I am having lots of physio at the moment for neck and shoulder problems brought on by BC treatment - surgery, rads, having a port fitted etc. My physio says it is very common when we have been ill to develop a stiff neck, as we adopt a hunched, tense posture without realising it. So it could well be that your stiff neck has an innocent explanation.
I dunno - surely feeling sorry for yourself is totally ACCEPTABLE, as long as you try not to let your fears or despair of what’s around the corner too much cloud your experience of today, which after all is the only time any of us actually experience. Perhaps I’m still in denial, or maybe it’s because things are going well for me at the moment, and I appreciate that you are not in the same place as me. But most of the time I’m able to push away thoughts of the future and concentrate on the here and now.
I know exactly what you mean about being strong for everyone else around you so that they don’t get too upset. And I agree with the comment that no-one can really understand what is going on for us mets ladies other than us. So perhaps the best place for you to get support is through these forums??
I’m not sure about all this putting on a brave face business. I do it too, to olympian standards! but in a way i think it’s just our social ‘conditioning’, especially as women, to put others’ needs before our own and even take responsibility for other people’s feelings, which is ultimately not good and not helpful.
I suppose I’m asking what is the worst that could happen if you did break down in front of your parents/partner/friends. There’s a lot of healing to be had through crying together, and being in the gloomy pit together. Then there is real connection and honesty, and afterwards you can do something nice together (cup of tea and cake springs to mind). It puts you on the same ‘side’, against the cancer, and can be a strengthening thing.
I think crying on your own, while it can be healing, can also be desperate and distressing and lonely. The people who love you want to help, and if they can be there to hold you as you cry, you are doing both of you a favour.
What do others think?
Jacquie x
Hi Jacquie, I think that’s a really perceptive post. Yes, our loved ones probably feel terrible that they can’t do anything to make the cancer go away … so perhaps letting them hold us as we cry does make them feel better, that they are actually helping.
I’m so sorry your BC is on the move again. And putting on a brave face in front of others can be tiring. Shouldn’t we be the ones needing comfort and support?
Crying is NOT a weakness. It is normal to be grieving at bad news. I went through exactly the same thing. (don’t we all do?) Maybe because we’ve done it before, they expect us to do it again? “You WILL be fine!” I recently went to see a counsellor. Not only did that give me the chance to pour out my fears and worries and said the things I wouldn’t normally say to friends and family, but it also gave me a chance to rationally analyse those fears and worries and see why my families and friends react the way they do. Yes - indeed, it affects them, too. And probably worse than us because they’re “watching” us suffer while they can do nothing much about it. They fear losing us. Some want to hide their fears so that they won’t upset us, others goes to pieces at hearing the news, which make us want to hide our true emotions. The principle he gave me was “TO BE YOURSELF”. If someone REALLY love you and care about you, they will help and they will want you to be truthful to them.