Hello,

do you have a breast cancer nurse you can ring? 

What sort of treatments have you had so far? Your bound to be scared love, especially if hubby is away, the brain can go into cartwheels....mine certainly does! 

Have you thought about ringing Macmillan? 

Are you on herceptin? How's all the treatment going? Xxx

Thanks Marlyn

I’ve had surgery lots of radio and chemo for initial breast cancer 12 years ago. Came back as extensive secondaries 3 years ago - I wasn’t followed up so it wasn’t detected until late in. Since then tamoxifen a couple of clinical trials, radio and now in capcetibine. No never spoken to a nurse - tend to try and keep things under wraps as youngest daughter is only 15. I’m usually quite matter of fact but the emergence of this headache has sent me spiralling!

My biggest fear is recurrence, were you getting the yearly mammograms? The treatment is brutal isn't it....I find the fatigue overwhelming....

The headache is most probably stress related but it's totally understandable that you would think otherwise. When is hubby back? Just out of interest is he forces? 

Is it worth chatting it over with your doctor? Xxx

Nope - no follow up at all. I moved house and I couldn’t seem to get anyone to take it seriously after I had been clear for 5 years - despite being brca 1 positive.

yes seeing the consultant tm - he’s lovely but unlike care with primary where I had a named nurse etc, with secondary it’s a bit of ‘it’s terminal so we just have to get in with it’ no disrespect to the NHS staff- they are amazing- but that seems to be the feeling.

No he’s just taken a 2 year contract out there , I’m staying here for health care and until daughter has finished school.

I'm glad your seeing the consultant tomorrow, at least you get a chance to off load. I'm gobsmacked no one took you seriously, especially with the gene! Oh boy!! 

I sincerely hope you get the care you need and deserve, I'm always popping in and out of the forum and am here if you need a rant or having a wobble xxx

Hi MandyEgg,

I am sending you a virtual hug.  Things can get very hard at times especially with all you have been through and your husband being away.  Do you have any friends or family (sister,brother, cousin etc) that you can call because I think that right now you need to phone someone and call them and ask them to come and visit you so that you can get a real hug and a chat.  If you don't feel that you have that support round about you is there a cancer support charity group in your area. I live in Scotland and there are quite a few of them around here.  Each of them have different services.  There is also Maggies (another cancer support group).  Do you have a local cancer hospice, many of them have day clinics which offer support either on a one to one basis or in groups.  Please seek some help and support.  It is there for you. My mum is in a similar situation to you and she goes to our local hospice day clinic and it makes a big difference to her, as cancer not only affects your physical health but it also affects your mental health and emotional well being in many different ways.  It can also affect your friendships and in having to leave work you may also lose those work-based relationships too.  Sometimes having cancer means making new friends that are in the same situation as you.  I hope you get the support you need. You can also phone Macmillian the nurses on the phone are lovely.  I remember crying down the phone with one of them when my dad had cancer, it was the first time I had cried because I was being strong and supportive for my family. They are really supportive.  Also you don't have to be strong all the time with your daughter even though she is only 15, unfortunately cancer can make your kids grow up faster, but let her support you if she is able it will let you be closer.  My nephew is 15 and he lives with my mum, she has been his mum since he was 3 months old.  At times he is very supportive and protective of my mum and really helps her out.  Other times he is just a typical teenage boy. Let your family in, you need them and they need to be there for you too.  The first time my mum had breast cancer she pushed everyone away and it wasn't good for her or us.  

Just read the second part of your post can't believe your huspand took a two year post far away while you are that ill. Can't he get a job nearer home or does he get to come home often.  If he has no choice and loves you lots he must be worried sick that he is not there and maybe you could use Skype or Factime, so you could stay in contact and chat.  Skype still means you are getting a conversation and a chat that might give you a much needed boost.  Or and I don't want to say this but did he take this job because he is running away and cant face the reality of your disease. You need some support.  I do get what your saying about the hospital and not getting a specific person but I don't think its because you have secondary cancer I think its because the system has changed during the intervening years.  You get a more personal care from these support groups, so please look into ones in your area.  Also just because doctors term your cancer as terminal with breast cancer that can mean longer than you think if you have the type that can take anti-hormone drugs.  My Mum is technically classed as terminal too but because she can take the drug letrozole then  she may have a few years. But the doctors still class her as terminal.  So while you have bad days try to remain positive.  Think about creating a bucket list of things you can do with your daughter.  Make those precious memories. And another thing write her a letter or get cards for the future for the things that you might not be there for, like her wedding, special birhdays like on her fortieth birthday, tell her your hopes and dreams for her, tell her about your wedding day and your birthday what you did and what you wished for.  They will mean so much to her in the future. Create your own happy times.

Take care of yourself and know that people are thinking of you and wishing you well.

Please ring MacMililan., they are fab.  Their telephone support line is a great help

They are very easy to talk to - I know because they helped me

Thank you I will - thanks to everyone who responded it really made me feel like I’m not alone. It’s so important to me to seem like normal to family and friends - I don’t want to be just the cancer, I want to still be me so the more I can shield everyone from this side of the struggle the easier it is. Perhaps that sounds weird !

It's tough, I had surgery, chemo and radiotherapy.  Clear at the moment 9 months after treatment  but scared it will come back.  The mental stress is as bad as the cancer. - live each day as best you can and don't be afraid to open up and get support.