Cancer is a chronic disease

One of the major mindfucks when dealing with cancer is that it doesn’t have an end point. Even being classified cancer free or in remission doesn’t mean you have the all clear. It’s a virus – one that affects other parts of your life, your health and your mental wellbeing – that you can never shake off, no matter how hard you want to believe Taylor Swift.

If you break a leg, they reset it, fix it and you’re on your way. Done. Back to your life before the accident. You don’t have to take that broken leg into account two years later when deciding on future medications, risks, contraindications and complications.

It’s been five months since I’ve finished active treatment and I’m looking a lot more like me. Hair, brows and lashes are back, not quite the same but close enough. Cheekbones, once dormant under that puffy orb which replaced my face while I was on steroids, have popped back up so my face finally has definition again. I’ve lost those extra chemo kilos that were stubbornly hanging round.

I’m looking, and feeling, good and everyone is cheerfully asking me whether it’s all over now. They’re confident enough in my appearance to ask and they can’t hide the expectant look on their faces, a sweet indication that they’re rooting for me, and yet I can’t give them the good news they want to hear. So I just tell them that the heavy lifting is over and now I’m on medication for the next few years.

What I don’t tell them is that by a few, I mean five to ten years. That while hormone therapy will theoretically increase my chances of long term survival from breast cancer it also comes with nasty side effects such as an increased risk of uterine cancer and sometimes debilitating menopausal symptoms.

I could accept this a lot better if I knew there was a guarantee, a final full-stop at the end of it all. Case closed. But there are no absolutes with cancer. Even following my doctor’s recommendations, my long term survival rate is only in the high 80’s. When she ran my numbers, which looked at my type, grade and stage of cancer and how the combination of chemo, mastectomy, radiation and hormone therapy would theoretically increase my lifespan, I was expecting to be high 90’s. After all, I did everything they told me to do. So that was a startling blow.

And now, my circumstances have changed and we’re discussing adding a new medication to the mix. One that will shut off my endocrine system, plunging me into the depths of a chemical menopause and all that entails, including depression, hot flushes, insomnia and osteoporosis. Overnight I would have the body of a 60 year old. My oncologist very patiently and methodically pointed out new research that showed zoladex in conjunction with tamoxifen had a 35 per cent benefit in two groups; women under 35 with early stage breast cancer and women who had an advanced stage tumour with lymph node involvement. I belong to both of those groups. But then she went on to explain the relative benefit, which is this benefit divided by my projected survival rate, was only three per cent.

So now I have to make a choice, but even with all this information I’m still flying blind. For all the research, studies and data out there, there’s nothing to guarantee the result I want.

But the biggest mindfuck? I could stop every one of my medications, rid myself of the accompanying side effects and remain cancer free until I die of old age. I could also take the scary drugs, remove my ovaries, potentially give up my chance of conceiving and it could still come back.


3 thoughts on “Cancer is a chronic disease

  1. Just found your blog, and very much enjoying reading it. Though some of it is enough of a reflection that it feels a bit like picking at a scab.
    About two months in to the second year post diagnosis, I suddenly felt like total shit emotionally. Then I heard from other that had played the cancer game that emotional challenges are fairly common in year two. Now in year three and I am finding myself feeling both better, and changed. Lately I have been strangely drawn to doing research again as I wrestle with this lethargy and difficulty imagining the future. I still have hope that the future will unfold itself in some beautiful and surprising way.
    Thank you for documenting your experiences.
    Sending love and light from across the blogosphere
    Xo iris


  2. I’m glad to see that you are still putting everything into words that I feel! I know through chemo you were only a week or so ahead of me then I saw the shocking news of your surgery.
    I don’t have hormone therapy to look forward to just having herceptin every three weeks and even that is nearly over. I too am trying to explain to others about this lottery of using all the chemical ammo you can to improve prognosis but then again we could live to a ripe old age with no other problems with or without it. It’s a hard argument to explain.
    All I know is I have done everything I can to prevent it coming back but no one knows. But then what’s the chance of walking out the front door and getting knocked down. There was a very good quote recently of don’t borrow sorrow from tomorrow. Something I am trying to do every day!!
    I went through all the menopausal symptoms just after chemo finished, hot sweats, insomnia, depression, aches and pains like nothing else, weight gain (even on top of the chemo bloat) and it seemed to happen overnight. Now things are beginning to get back to normal in all aspects and the symptoms also seemed to have gone like they appeared. Shame, I know I’m going to have to go through it all again in a few years but a lot slower!
    I try not to overthink things and get hung up on percentages and do what the doctors tell me.
    I find I am restless and struggle to sit still which I have found to be a symptom of me subconsciously worrying about something but have yet to really work out what!!


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