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Living with an Incurable Cancer

For those of you who don’t know me, Hello, my name is Anita and in 2016, I had the worst news ever. I was diagnosed with a neuroendocrine, small cell bladder tumor. It is a rare, fast-growing cancer and had already spread to my lymph nodes, liver, hip bones, and arm bones. The prognosis was pretty grim.

I had palliative chemotherapy, radiotherapy and then made the decision to have my bladder removed due to ulcerations that were not healing and causing me pain.

Feeling like I made a mistake

On the 19th of August, 2017, my bladder came out, and I first met “Sally Stoma“. After two weeks, I felt I had made the worst mistake of my life; however, I am now heading towards my third year of living with an incurable disease.

How do you live with the elephant in the room?

That’s THREE years my oncologist, urologist, rheumatologist, cardiologist, gastrologist, and endocrinologist have kept me alive. That’s two and a half more years that I have survived than we thought I would, but how do you live with the huge elephant in the room? How do you cope with your new life? Your “new normal?”

Some days are easier than others

Some days you totally forget that albatross around your neck. Other days you feel overwhelmed and can’t cope with the smallest thing. These are all normal reactions to living your new life. You need to adjust to what has happened to you. I have said it before and I will say it until I am blue in the face, you have to process everything that you have gone through.

Having chemotherapy, radiotherapy and major surgery is no joke. Physically and emotionally, you have been through a lot. I really would recommend counseling. I think the trick is to be able to understand and let go of all the pent up emotions and anger. (Yes, I did say anger.)

The anger and uncertainty with an incurable cancer

I have spent the last few years not acknowledging the ‘anger,’ believing that I had no anger and that, as I can’t change the situation, I would just have to come to terms with it. How wrong I was. I have lots of anger. Some of the anger is misplaced. There are still some tears left to cry. The uncertainty of it all is all-consuming.

I was told I would most likely be dead by Christmas 2016. I had counseling to come to terms with this. I spoke to people about making a living will, explaining my wishes, planning my own funeral. I feel I have looked death in it its face, and yet, here I still am (yippee), living my life to the best of my ability, with the knowledge and the awareness that I now have.

So much time was taken up by cancer

I remember writing about having to find my place back in the world, having to reenter society as so much time had been taken up with hospital appointments, scans, and tests. Now, all I had to do was to go for my PET scans once every three months. WOW, how amazing is that? Or so I thought. What I hadn’t banked on were the emotions and feelings that I would have to go through EVERY 3 months!

Living in limbo

I think I was hoping that life would get “back” to how it was and not have to adjust to the “new normal.” How foolish was I? Being incurable/terminal, I feel in “limbo land”. I wasn’t cured, nor would I ever be. How on earth do you live with that?

I’m still not sure, but it seems like it’s one day at a time, one tiny step followed by another. In my head, I think, “What on earth are you on about?” You should be happy, elated ESTASTIC, even to be “N.E.D.” but you aren’t. You feel that time is being wasted because it feels like you can’t “fully enjoy” your life to the fullest because you have that albatross hanging around your neck or maybe, like me, you have a million other health conditions which impact your life on a daily basis, so it’s hard to get away.

Sometimes you forget

Sometimes you forget, you really, really do. It’s fabulous! But then something happens, a twinge, a pain, you hear the crinkling of your bag on your clothing or something else, and it comes and smacks you in the face again. Or maybe you are having a really fabulous day. The sun is shining, and everything is going right. You start to count your blessings, you know, the simple things in life, and you realize just how lucky you are and how you have everything you need. You run your hands over your clothing to subtly “check your bag,” and you realize you now need to find a bathroom, in a bit of a hurry.

So, you don’t really forget totally. The hand running thing happens subconsciously; I am not even aware that I do it, but I do.

Does it get easier living with uncertainty? I don’t think so, or at least in my experience, it hasn’t. You just learn to live with what you have to. You learn that it is going to being a bumpy ride on the cancer rollercoaster and that you haven’t quite checked out of it yet.

I try to really listen to my body

I try to really listen to my body now and NOT feel guilty about doing nothing. This is because that I know that the next day will be better, and if not the next day, then the day after… just at some point, I will feel better and will be able to do the things I want to do. I just have to be patient, kind and loving to myself.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The BladderCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Jude
    4 days ago

    7 months ago I had a bladder removed and total hysterectomy done. Had my first 6 month testing and everything was good. I am due in June for my 1 yr. testing but not feeling very confident about getting the same results. While I’m doing okay and gaining weight and my strength is improving I’m feeling at times tired and a strange feeling in my lower abdomen and when I mentioned this at my last visit I was told it was probably part of my healing process which could take up to a year due to the severity of my surgery. I am very thankful for my being alive and enjoying my family at this time I have these thoughts in my head that what if this strange feeling is not part of my healing and maybe more cancer returning? When I asked I was told nothing showed on my CT scan so for now I continue to pray and wait until June when I have my next CT scan and I’m told it is still clear!

  • Anita Brown moderator author
    4 days ago

    Hi Jude,

    So sorry to hear that you had to have your bladder removed as well as a hysterectomy, do you have any menopausal symptoms? I know it took about 6-8 months for me to realise I was going through it… I think we all have those “twinges” “weird sensations” and “peculiar feelings” and it is so hard not to let our minds overthink every pain and it is only normal to worry about the cancer returning.. that’s the biggest cause of anxiety with any type of bladder cancer, unfortunately we just have to learn to deal and cope with this. Can you get yourself some counselling? I am finding it such a valuable thing to do as I am now learning to try and not to worry, take each day as it comes and to try and live and enjoy life now.. I really hope that your scan in June is clear, please stay in touch and let me know. Anita xx

  • katiemay
    1 week ago

    The best advice I had …
    if you have the repetitive thought
    “ he won’t be here to do this with me , one day “
    turn it to a positive “how fabulous we got to do this together , again “ . It’s difficult to be depressed/anxious and grateful at the same time xx

  • Anita Brown moderator author
    1 week ago

    That’s a fab idea Katiemay xx

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