Recently diagnosed secondary

Hi Wendy,

Sorry to hear about your bone mets. I was diagnosed with bone mets earlier this year, 12 years after my primary BC. Now its in my spine primarily with possible spots in the hip (iliac) and ribs. It really sucks but I'm grafeful it isn't worse. I'll be following the responses to your posts as a lot of what you've described applies to me too, especially all the emotions.

I found it so interesting reading about how you've categorised your friends' reactions! Gotta love those 'Angels in disguise'. I have a few of those as well thankfully. It's unreal what those in the other categories have said to you! I'm interested to hear more.

By the way, I love your photo!! It made me chuckle and I think humour is great when we're dealing with secondaries and all the uncertainty that comes with it.

All the best

Christine x

Hi Penny

Thanks for your post. I have recently contacted a support group based out of Erina don't know if you are also part of this group. Your reply summed up everything perfectly. Great that you are going well and gives me hope hearing stories like yours.

You are right about those around me don't really understand even though they are so supportive. I have lots of funny stories of their reactions and commentary. Have now started to put them in their sub groups as I like to call them.

My Living Angels

These are the ones that never judge me and just let me go with how I am feeling at the time even though I can end up going from tears to laughter to joking to being concerned within a record 10 seconds flat! They never judge me or tell me what I should be doing. They are just there for me unconditionally and seem to be people who have had direct experience of cancer or chronic illness either themselves or close family members. They give me strength

The "what you should do" group

As supportive and well intentioned that they are, they like to advise me on what I should be doing. They want to help but feel helpless. They try to walk in my shoes and give advice on what they think they would do if faced with this challenge. However they can't wak in my shoes but they try ...

Typical statements from the "what you should do" group are

You have to keep positive as it affects your illness and positivity can help heal and cure you - really? (constantly had this within 48 hours of being diagnosed with secondaries. I thought I had a right to be a little bit upset at the time and maybe not quite as positive as normal lol!

You have to work out a bucket list and do all the things you wanted to do with the time you have left

If you want to negotiate extra time to live then you have to give back and pay forward

You need to change your diet I will bring round some anti cancer snacks

I say all this with a smile on my face. They are sincere and it comes from the heart and I know to help them I need to share my new found knowledge and experience. It isn't always about me (he he). They help me to help others and to share my story so more people are aware

The Foot in Mouth Group or Tourettes Group

These are a group who are nervous about talking about my situation and somewhere in their psyche everything that they know they shouldn't say or it would appear in sensitive just gets blurted out. This group are really affected emotionally and I know they love and care for me but have a hard time accepting it of facing it

Typicals comments I have had

I had a friend I helped through cancer but they died

My Uncle has cancer he has no quality of life

Oh its you Wendy I thought it was a man at the door - just had my hair shaved  even thought I thought I looked pretty hot with my pixie hairstyle looking a bit like a young Sinead O'conner. Obviously they weren't wearing their glasses.

I have loads more but I will refrain for now.

These people help me to be more sympathetic to others they need my help just as much as I need help :-)

I have a few other sub groups but I will save them for another time.

What I have learned through this so far is that it takes all sorts to make the world go round

Hi Wendy,

Your post caught my eye as I am a similar age to you (45), have bone mets in my spine and also live on the Central Coast NSW.  I don't know if I can offer much advice, other than to reiterate what others before me have said - treatments are changing all the time, people respond differently to them and everyone's cancer story is going to be unique.  Sometimes I think that dealing with the diagnosis of secondaries is sometimes the greatest challenge - coming to terms with it mentally can be painful, confronting and confusing, particularly when nobody can actually tell you much about what the future is likely to hold.  And on top of that, those around you don't really understand what you are going through, even though they may be supportive.  I consider myself lucky in that I have only one spot on my spine that was treated last year with a new technique using high dosage radiotherapy and now doesn't seem to do much.  

I'm not so great at online support, but if you are keen to meet at any stage, even just to rant about it all to someone who has been there, I'd be happy to help.  You can email me at [email protected] if you are interested.  

Take care

Penny 

Hi  Morry,

I wish I had the energy to play golf or go for a long walk sometimes.  I find that I get tired easily & sometimes out of breath.  I dont just sit around all day.   I go out most days visiting friends or having coffee or just enjoy doing craft work  or enjoying the garden. I live on the central coast of N.S.W. & it is not far to go to the beach just for a walk or just watching the wave is always  relaxing.  With Christmas coming up fast, I sometime wonder if i will be my last Christmas but I soon put thoes thoughts out of my head & go out & do something. I just wish the years would'nt go so fast . We need more time.

Stay well, I've always liked tapestry.

Wendy67