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Life Goes On…

As the title suggests, life does indeed go on… so here I am with No Evidence of Disease and yet still considered to be terminal, so what can I do? How can I make my life more fulfilling? I’m not well enough to get a full time job, nor do I think I can go back to my Home Carers job. The truth is, we just don’t know how I am going to feel with every new day arising.

It isn’t just the cancer

You see, it isn’t just the cancer that affects you, other health issues can come into it, too. This year I have been diagnosed with Raynaud’s disease. This affects your extremities, and it is my poor feet that have suffered, turning rather lovely shades of purple and black. This has totally surprised us as I am such a “hot” person, so to have Raynaud’s almost seems ridiculous.

I also have been diagnosed with “Erythromelalgia”, this is a rare syndrome which tends to go hand in hand with Raynaud’s. This turns my arms, face, neck and back bright red and it burns. It does make me laugh a little; the Raynaud’s will be worse in the colder months and the Erythromelalgia is worse in the summer, joy of joys!

Issues from chemotherapy

On top of this, I have now been diagnosed with a “moderate” impairment of the left ventricle in my heart. This is down to the last chemotherapy I had, “CAV”. It’s is a combination of 3 drugs: cyclophosphamide, doxorubicin and vincristine”. Less than 1 in 100 people will obtain damage to their heart because of this, and unfortunately I am one of those.

Its a very odd feeling, knowing that something that has extended my life has also damaged a vital organ, a very vital organ! I guess that I will just have to keep on living my life, the best that I can. I am on blood pressure pills, which will be upped as the months go on, until I get to 10mg. This should help the heart to beat properly and encourage “normal flow” through it.

Cancer is such a nightmare

Cancer is such a nightmare, and although I am NED right now, I know that this can change at any moment. My oncologist has said that I have “surpassed” my prognosis, and he is very surprised that it hasn’t come back yet, as he was expecting back last Christmas. I am very fortunate and count my lucky stars daily.

Living in a no man’s land

Living in this “no man’s land”, I am NED and yet I’m not, and nor will I ever be, “cured”. It is very difficult to get your head around this, and if I am honest I try not to think about it. I don’t know what my future holds anymore, I don’t know how long I have left. It’s hard trying to plan things as we don’t know how well I will be, or even if I will still be here. However, I have made a promise to myself, and that is to never take anything for granted again and to live my life thoroughly and wholeheartedly.

Upcoming plans

We have concerts and holidays planned this year, and by hook or by crook I WILL be going to those gigs. I will be nipping off to Amsterdam with my sister, we will be going to France to spend some time with a friend and her husband, who also had bladder cancer. I will NOT become a recluse, I will not worry about the things that I can’t change and have absolutely no control over.

All I know is that I am ALIVE, and I am managing to have some sort of life still. I want to warn everyone that I meet about bladder cancer, it doesn’t discriminate, it can happen to you.

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Comments

View Comments (2)
  • Andy
    7 months ago

    Oh Anita, I am so sorry. Having read this, I feel quite ashamed about feeling sorry for myself with Bladder Cancer. Compared to you, mine is a breeze in the park. I’m not finding the BCG treatment easy but hopefully it isn’t damaging other organs. I will be very pleased when it’s over as I badly need a knee replacement which they won’t even consider doing until I’ve finished my treatment. I will be thinking of you and send my best wishes. Andy

  • Anita Brown moderator author
    7 months ago

    Hi Andy,

    Oh please don’t feel that way, everyone’s journey is unique, some journeys are filled with “hiccups” and some go smoothly.
    From what others have told me about their BCG treatment is that it isn’t easy, and some of the side effects leave you feeling terrible, so sending you a huge hug, hang on in there
    Good luck with your knee op, really hope it all goes well for you, and thank you for taking the time to comment, take care

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