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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?

5 comments:

  1. Dear Vicki,

    I'm sorry you're feeling low. I joined Inspire, more as a "lurker" in October 2009 on behalf of my wife, who although she can speak/read Georgian/Russian/German, cannot speak that much English - and of course a lot of the important infomation about this disease is in English (my wife was diagnosed Stage IV from the start in October 2009 at the age of 32).

    Anyway, I can certainly see your point about Inspire and the direction it has taken is a shame. Your post seems to be all about people "getting it", which Inspire used to provide. I can see to an extent where you're coming from due to my wife's experiences - although of course I can't empathise (empathize! US!) like some of the ladies who used to come on Inspire. I really am very sorry to read your post at the moment - I have also seen and agree with your posts on Judith Potts' blog on the Daily Telegraph.

    "But "Pinktober" is over at least - so that's one problem over. And please, you are NOT a problem! As I metioned, I "lurk" on Inspre and some of the ladies have recently posted that they wish you were still there with your "no nonsense British attitude". That's not made up and when you left lots of people were very upset and sad that you had because they valued your contribution so much. Oh, and "Maria" was the problem, not Vicki!

    Best regards

    Guy Wilson

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    1. Thanks for the kind words Guy. I have just hit a bit of a wall at the moment, but I am trying to be proactive to get away from, and around the said wall. Mu niece helped me to start clearing out some of the rubbish from my house and two estate car, and one trailer load has gone to the dump/recycling/charity shops, or my niece who now has her own house. Tomorrow I am having new double glazed windows put in, before the old wooden ones rot completely and fall out.

      In the end I do realise that there are times I need to let myself be depressed so that I can start to come back up into the light. I have been signed off work for this month basically, though I may try to get back earlier than that, if I can get my head around it all and I've gone back to making lists so I can try and remember what I am supposed to be doing. Maybe I'm a bit more confused dot com than Maria! Vicki x

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  2. Dear Vicki,

    Thanks for sharing your experiences with metastatic breast cancer. Writing about your disease can be a good way to cope with your feelings as well as to support others who go through the same...
    I was wondering if you would be available for a paid interview opportunity. I work for Human Care Systems, a USA and London based company and we are developing support materials for people with serious diseases. Currently we are trying to learn more about metastatic breast cancer and what experiences people go through with this disease.
    Please contact me at lhyvernat@humancaresystems.com
    We would love to talk to you.
    Thanks,

    Laure

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  3. Thank for share, i also wrote about the cancer here

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  4. Thank for Sharing about your cancer problem. I would like to also share about DCIS – Ductal Carcinoma In Situ Symptoms and Treatments

    ReplyDelete