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HELP - need some support

5 REPLIES 5
Guest user
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Re: HELP - need some support

A big thankyou to everyone who has responded. I did use this site a lot when I had my primary cancer nearly 4 years ago and it was a godsend then and it looks as if it might be again now.

The radiotherapy that I had on Thursday does seem to have reduced the pain and discomfort so I'm hopeful of that treatment helping me. I'm just feeling very washed out and remember feeling this was when I last had readiotherapy so I expect that's normal.

I've been given Megace and a Biphosphonate and started on those last week. Its fun trying to fill in half an hour after taking the biphos without having my breakfast or anything else other than water. Its okay at the moment but I'm sure when I get back to work I'll be finding that a bit difficult to fit in. I don't really understand what they are supposed to do yet other than strenghten my bones.

I'm having my bonescan next week but still waiting for the CT scan appointment. Presumably after that I will be able to discuss long terms treatment and the oncologist will help me to have a treatment plan - is that how it works?

My daughter gets married this time next year and I'm so afraid of what the scans will find, and of not being there for her on her big day. Of all the things that I have thought about in the last few weeks that it the one that I find really painful. I know that I have to try and be more positive but |I'm finding it impoossible at the moment to do that, and I end up like now desperately sad and afraid. I will try one of the supports offered by breast can cer care and hope that that will help.

Meantime keep your messages coming if you will

Many thanks

nicky08
Community Champion

Re: HELP - need some support

Hi Jane

I've only just read your thread but I know exactly how you feel. I was dx in April this year (some April Fool's Day I should say!) and I described it as being hit by a sledgehammer. Both my hubby and I, plus my 2 daughters were so shocked and upset as I didn't see it coming as I'd had no symptoms. I stopped work during the time between starting any tests and getting all the results as I couldn't concentrate on anything that seemed 'trivial' to what was going on in my life. I also thought what's the point I'll be dead in a few months.

However this site has been a God send and so inspiring. You realise there are loads of us women out there in the same position as you, something that doesn't happen in the 'real' world as we're all spread out across the country. Advise and experiences have also helped and can also put things into perspective, I now know it's not as gloomy as I 1st thought.

Once I had my CT scans, blood tests and biopsy results back and had a treatment plan given to me I suddenly felt I could get on with my life. I knew what I was dealing with from a planning my summer out point of view as well as what was going on in my body. This I felt was the turning point. I went back to work before I started my chemo, which again helped as if I'd put it off I may not have bothered, and it gives a sense of normality to your life and a sense of purpose that of course you can still do everything.

I am having 6 x FEC chemo and biphosphonates for the bones and will go onto hormone therapy after the chemo has finished. However there are so many treatments available you could be given a totally different regime.

I hope all your scans and tests are good and that once you know what's going on you can cope better. It really is worth asking questions on here as, although our loved ones want to help, they really don't know what it's like, whereas we all do.

Good Luck

Nicky x

Re: HELP - need some support

Hi Jane,

It is so hard at this stage to get your head around it. You don't say if you have had a previous dx of breast cancer? My original dx of breast cancer was 18 years ago, and for the last 6 years I have had bone mets. When it was first diagnosed it was very sudden and very extensive and I was quite shocked as I had no warning. I thought within weeks I would be in a wheelchair there was so much pain. But once treatment started, and for me that was some rads, and then bisphosphonates, the one I am on is pamidronate, the pain started to ease and after 3 treatments I was able to come off all pain killers. The mets stabilised very quickly and has stayed that way now all these years. Of course I am careful what I do, don't overdo anything, and am reasonably comfortable. Do look into Disability Living Allowance - your breast care nurse, or the Social Welfare Officer at your hospital can help, or a macmillan nurse. This allowance is nor dependent on means or income and can be a great help.

Keep talking to us here, we all understand and hopefully wil help and support you through this time.

love Dawn

Guest user
Not applicable

Re: HELP - need some support

Hi Jane

I am sorry to read of your diagnosis. its a horrible horrible shock and there is no easy way to cope with it, expecially as you have all that back and forth of everyone telling you its nothing.

Have they given you a treatment plan ? They will recommend something for your bones that is very easy to tolerate. I hope that the cancer is nowhere else and just in your bones, there are many ladies on here who have been going for years and years with bone mets (and if its gone elsewhere). I have been liviing with bone mets and liver mets for 6 months, I actuall found it alot easier once i had a treatment plan,.

As to your work you have probably done the right thing going sick for a while. I did that and then went back to work - working full time through chemo which wasnt easy but is certainly possible. Work has been a huge help for me maintaining normality, and it is a financial neccessity!!

We are protected by the disability discrimination act and there is absolutely no need to make any decisions about your work, dont let anyone from your work pressure you at the moment...just ride it out for the moment and let them know when you have more information.

I hope you and your partner can help each other, I have found my OH very supportive but all other relatives hard to deal with as their distress is difficult. Try to do something nice this weekend with each othe, and come on here to let everyone know how you are and how you get on. These forums are really helpful in so many respects.

love
cathy

Re: HELP - need some support

Hi Jane

Welcome to the forums, I'm sorry to read of your recent secondary diagnosis. I'm sure the other forum members will be along very shortly to offer support and share their experiences with you. You may also like to know about some of the other support services from Breast Cancer Care for secondary breast cancer. There is a telephone support group, the aim of the group is to give you the opportunity to talk privately and confidentially to other people around the UK with similar experiences. Discussions cover issues such as relationships, work, money, living with uncertainty, treatment, as well as everyday life, for more information click on the link:

http://www.breastcancercare.org.uk/content.php?page_id=11306

There is also a secondary live chat, this Breast Cancer Care's online chat facility where you can talk to others in real time, it's from 8.30 pm - 9.30 pm on Tuesdays. It is facilitated by an expert moderator and a nurse who are on hand to point you to sources of help and information. But for most people, the chance to talk to others in a similar situation is what counts, again for more information click the link:

http://www.breastcancercare.org.uk/content.php?page_id=6218

The following link will take you to Breast Cancer Care's publications about secondary breast cancer, including one specifically about bone secondaries which you may find useful to read, there is also a DVD called 'Living with secondary breast cancer' which has been recently introduced, you can order these via this link or by contacting our helpline on 0808 800 6000:

http://www.breastcancercare.org.uk/content.php?page_id=5258

I hope this is of some help to you Jane at this difficult time

Best wishes
Lucy

Guest user
Not applicable

HELP - need some support

Hello all - I've just been diagnosed with s econdary breast cancer after having a few months of back pain and various trips to the GP who told me it was just wear and tear. Oh no it isn't! I had some radiotherapy on the site yesterday and that seems to have been okay so far. Also my meds have changed and I'm waiting for appointments to go for a bone scan and CT scan before they can tell me if the cancer is anywhere else and if wo what they will do about it.

The problem is that I am just not coping with it. I think I have gone through being shocked but I just can't grasp what has happened and in particular that whilst there are lots of treatments I can't be cured. It is as they say doing my head in!

I find it difficult to talk to anyone at the moment as I haven't got my own head round things yet and also I think I'm not very good at talling about myself anyway. My usual tack is to look after everyone else, so I really want to hekp my daughter to cope (she's 25 mind you) and I just hate to see her so distressed. Also my partner (female) is struggling with it all.

I decided to go off sick for a couple of weeks as I'm not really coping with it very well and work seemed so lacking in importance, but I know that I do have to work to uspport myself, so I'm worrying about how that will all pan out.

Searching for some advice from people who have got secondary cancer like me and about how you coped with it - what helped you and want didn't. I know its early stages for me yet, as I don't even know if the cancer is anywhere else but in my bones in my back. But I'm really struggling now.

I would be greateulf for any advice or guidance from anyone who has the time.

Many thanks

J