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Sunday, 27 October 2013

Metastatic Mid-Life Crisis?

There was a time when I came online and there were lots of cyber friends here and lots going on.  It doesn't feel like that any more.  I used to spend hours reading every post on Inspire and usually answering every one, but I don't go there any more because I don't feel that I belong there any more.

Is this the Metastatic Breast Cancer equivalent of a Mid-Life Crisis?  I was diagnosed with breast cancer over 6 years ago, and in January it will be 6 years since they finally twigged that I really did have a problem with my hip and I was Stage IV all along.  Statistically I have been dead for over 3 years ... there is only one thing 'wrong'.  I'm not dead though, if truth be told, I wouldn't mind being dead.

My main problem with getting support is that I am not dying quickly enough.  I had CBT therapy, but they cut me free with the promise that if I had problems within six months I could just go straight back into the system.  They lied.  When I called I was told I would have to referred all over again and there was not guarantee that I would see the same therapist.  I saw the counsellor at the local Hospice for a while, but again I didn't die quickly enough so they discharged me.  When you are in no-mans-land of being stable no one is interested in supporting you.  My brother and his family are too busy to do anything to help me, except occasionally to ask me round for a meal.  If I drop in I feel as though I am intruding, or no one is in.  That said my niece is supposed to come an help me clear some stuff out of the house next week, but I'll wait to see if she actually turns up.  It is usually the case that if there is some paint to watch dry somewhere that comes first.

Part of the problem is that so few people are aware of MBC because there are three stages of breast cancer ... being a survivor, having a recurrence and end of life/death, and most folks know all about the first 'Pink' stage, wants to ignore the second, and only vaguely acknowledges the third when it is quoted to raise money for a 'cure'; aka treatment for Early Stage Breast Cancer.

At the moment I am off work with depression and stress from having worked the equivalent of over one and a half extra weeks in the last 7 weeks and now being told I have to get out of the office I have been in and go into the big main office with people who made a friend's life such a misery when she worked there that she left ... or in a converted cupboard.  What is even worse is that the people moving in to the office I was in don't even work for the organisation!

Do I feel as though I can express any of this ... no.  Why?  Because breast cancer is Pink and it is all about survivors who on the whole would rather eat something from the jungle than admit that we exist.  After all be don't want to stress them out, do we?  They are the important ones.  They have Primary BC and they are Survivors.

How can I express to my line manager the embarrassment of not being able to just get up and walk away from the chair because of the pain in my hips and lower back?  How do I explain that it is good to be near the loos because sometimes I just have to 'use the facilities'?  How do I explain that I don't want to be seen falling asleep at the mouse because I am so tired, or I just plain forget what I am doing and express my frustration about this?  How do I explain that sometimes I just sit and cry because I am tired, fed up, a friend has just died, I want the pain to go away and a myriad of other reasons.  How can I explain that sometimes I just need to be able to pull myself together without the critical stares of others?  How do I solve a problem like Vicki?

Saturday, 26 October 2013

We are all in this together

We all have breasts.  They come in as many shapes, sizes and colours as there are people on this earth.  Few people are happy with what they have - too small, too big, a bit droopy - but if cancer is found in them it can be ... well embarrassing, if you are a man.  But wait! 
  • Did you even realise that men can get breast cancer too? 
  • Did you realise that because breast cancer is considered to be such a feminine thing that there is little information available, or encouragement to get any changes or lumps in the breast checked out properly by a doctor.  
  • Did you realise that nearly all the medical information about treatments is written with only women in mind. 
Of course this means that there are some treatment side effects that men don't have to worry about ... vaginal dryness for instance, what a relief because there are a very few things that men won't have to worry about if they have a diagnosis, but has anyone really done any study into treatment side effects that might be unique to men with breast cancer?  Some information is available, like this publication from Breast Cancer Care in the UK which can be downloaded as a PDF anywhere in the world.