On repeat

My life seems to be stuck on repeat.

Get cancer, have treatment, recover. Get cancer again, have treatment, start to recover. Get cancer again, have treatment, start to recover. Get cancer again, have treatment, start to recover. Get cancer again…

Yes, it’s back. The disease is active once more.

The wonderful drugs I started taking last October as part of a clinical trial, had managed to keep it under control. They shrunk the tumours. These clumps of evil cells are still dormant.

But cancer is clever. It morphs and mutates. It learns how to beat whatever gets thrown at it. So I now have new spots of the cancer near to the shrunken, old tumours. Tiny bits of worrying shadows have shown up on my scans.

My consultant described them as flecks. I think of them as like gold flecks in a beautiful Turkish carpet. When you roll out the carpet, they are so small that you hardly see them but they are there and they change everything.

I’ve stopped taking the no-longer-so-wonder-drugs. Looking on the positive side I am now allowed to eat Seville oranges and grapefruit which had been banned. But, thats it.

I feel weary and frustrated that my body is such a successful cancer making machine. It means yet more toxic treatment. Once again I’m back at hospital and ready for danger. My identity wristband is red in case of an emergency. It should alert medical staff not to give me a drug that almost killed me in the past.

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Today, Wednesday 2nd July, I am having chemo cocktail no 36. Just writing that makes me cry.

You may try to imagine how I’m dealing with all this but don’t. Unless you’ve had far too many cycles of chemo it’s impossible to comprehend what I’m feeling. Mostly I’m fine.  I’ve pretty much come to terms with this. I can cope with writing this blog but as for talking about it, I’d rather not. I mean, what is there left to say? It’s awful.

You might be wondering what you can do or to say to me, or to someone in a similar situation. Here’s a link to a brilliant article you should read.

http://www.telegraph.co.uk/women/womens-life/10832932/What-to-say-to-a-35-year-old-mother-dying-of-cancer.html

The new tumours are very small. They are not causing me pain. This latest development is a cruel blow – another treatment has stopped working however I still have options. I know that my amazing doctors will never give up on me.

My advanced cancer has advanced again but this is not game over. Not by a long way. I am certainly not dying. I am not terminally ill. Worrying about the future is a waste of my precious energy. I just want to enjoy now.

Lets get this new treatment started.

33 thoughts on “On repeat

  1. This is the nightmare we imagine going through with our 7 year old niece. What if after this year it goes..then returns..then goes..if it goes? Sigh…((hugs)) Hoping for you to be able to “enjoy now.”

  2. Keep your chin up! I heard you on ‘pick of the week ‘ on Radio 4 last week – good stuff. It’s great that you can work between all these dreadful bouts. I can’t begin to imagine what you must be thinking and feeling but be reassured that lots of people love you and are praying for you. xxxx

  3. This is so heartbreakingly unfair. Just not not not fair. We send you strength and calm through chemo no 36 (and whatever more is yet to come). You are in our thoughts. Avril x

  4. You are right Helen, it is awful, I’m really sorry and I so wish it were different. All power to you and the new treatment.

  5. Helen, I finished my single 6 month chemo cycle exactly a year ago. I was going to say I cannot imagine what it must be like to have to endure repeated cycles but the biggest compliment I can give to you as a writer and a journalist is that you give me some insight into how it must feel. Keep doing what you do so well, writing and journalism and my thoughts are with you today. A,

  6. Very sorry to hear your news. I’m in a similar situation with metastatic breast cancer. My current treatment has worked so far for 8 months, everything crossed that it works for a while longer. There aren’t that many treatment options available for metastatic HR+, HER- breast cancer, so want to make each one last! I’ve recently started reading a book called “You are the Placebo, your mind over matter” by Dr Joe Dispenza. It’s about epigenetics, and changing your epigenetic profile so that hopefully our cancers will be healed by our bodies. Worth a punt with the kindle version. In our shitty situations, it’s worth having a go at anything. Remember that everyone who knows you cares about you and would live to be able to love you better. We’re all here to give you all the love, support and good vibes that we can. Very best of good luck with your next treatment. ((((XXXX)))). Hugs.

  7. Bloody hell….can’t say anymore than bugger, bugger. I’m sorry. Keep fighting. X

  8. As someone who’s part of ‘the world at large’, although a fellow traveller on the bumpy cancer journey road, I just want to wish you strength and thank you for continuing to share your experience. x

    I don’t know if this is helpful to you. I have found it so. “We think that the point is to pass the test or overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. Then they come together again and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.” – Pema Chödrön, When Things Fall Apart: Heartfelt Advice for Hard Times

  9. It was lovely to hear you again on POTW, so am really very sorry to hear your cancer has returned. You are quite right – I have no idea what you are going through, but send my love and my prayers that all will go well. xxx

  10. Praying the best for you. Stay strong, your life story has been very encouraging to many of us as we face life’s challenges.

  11. Helen, I do not know you personally but have followed your story. May you stay strong and may God bless you in a special way as you tackle this next hurdle with your usual stoical strength.

  12. Helen, you are an inspiration to so many. Your strength, faith, and humor are wonderful gifts you share with the rest of us. Thank you also for sharing the article about Kate, the inspirational article about such a young mother facing her mortality with dignity and love.
    You are in my prayers, Helen.

  13. You are in my thoughts, (AND i AM SENDING STRONG POSITIVE ONES), and prayers all the time Helen, and hope to see you soon. All Love Jeannie Marshall.x

  14. Helen, I think you have an enormous influence on peoples lives already. More than you with ever know. You have that magic touch which many of us wish we had. XXXX

  15. Oh Helen I know others in a similar situation. Not any of us wants to be in. I hope this cycle works and that you can continue to enjoy life and share that life with all of us through your blog.

  16. Hello Helen, don’t let the bastards get you down. Don’t know if it means anything but you’ll be getting a candle lit in Lourdes for you. I’ve lit one for you and others going through the same process for the past few years. Loved the Northern lights photos by the way.

  17. It sounds like you are doing the hokey-kokey with your tumours. Just remember to shake it all about occasionally. Cancer might be the current normal, but you are so good at reminding us all to have fun too.

  18. OH, CRAP! How frustrating this is. I’m so very sorry that you have to endure yet another round of chemo. I’m happy, though, that despite this and other setbacks, you’re still inclined to write about it. I – along with many other of your followers who also struggle with serious health issues – am addicted to your posts. They are most inspiring.

  19. I look to your blog to help me on my healing journey. Thank you for sharing and bearing your soul. I pray for you X X X

  20. So sorry to hear this news- hoping that the love of your family and friends and the best wishes of all who follow your blog helps you to cope with this next stage.

  21. I’m so sorry, Helen. Your blog has inspired me and helped me to focus on the important things in life. You are truly my hero, and I hope and pray that you’ll beat this once again.

  22. Was deleting some of my emails and found your latest blog which for some reason I had missed. As a previous blogger has written “oh crap”. “OH CRAP” indeed!!!!! Just about says it all. And as you say yourself “this is NOT game over”!!!!!

  23. So sorry to hear this Helen. What a pain (I hope not literally). Keep fighting. Lots of love x

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