Hi Sue
I’m so sorry you find yourself in this position. It is scary, no doubt about that, but much is fear of the unknown and that will soon be ‘known’ so you can let go of that. The language in Cancerworld seems designed to exacerbate anxiety. Triple Negative IS aggressive and can be fast-moving or unpredictable but the fact is, once you’ve begun chemo, things will settle down. I belong to a Stage 3/4 Triple Negative group and there are people there who were declared NED (NO Evidence of Disease) decades ago.
I personally think the real problem lies with TN’s public image - and most of that lies in the last century! Things have moved on, there are new treatments, lots of ongoing research, new organisations/charities dedicated to this particular condition which accounts for about 10-15% of all breast cancers.
My advice is
1. Do NOT Google. Anything you want to know should be asked of your team (not always easy), forums like this and the excellent nurses’ helpline (number above, top right)
2. Learn to trust your team. There is an extensive multi-disciplinary team behind the scenes and decisions about treatment lie there, not just in your oncologist’s head. Find out who’s in your team.
3. Try to forge a good relationship with your breast care nurse (or team, as is policy in some hospitals)
4. Build up your resilience. I’m afraid there will be times when you cannot be in control - that’s where trusting your team comes in - but you can feel better about it by being resilient. This is the time to practise meditation, mindfulness, yoga, baking, running - whatever helps you feel strong. I have used Progressive Hypnosis’s videos on YouTube almost daily for 4 years now! This kind of thing will help slow you down, stop that explosive feeling and help you gain a new perspective.
5. Don’t be sucked into the ‘You got this, girl’, ‘Stay positive’ mindset unless this is you. There is evidence that a positive mindset can help with recovery rates but there is zero evidence that it cures cancer. If you feel crap, feel crap; if you are too tired to do something, don’t do it. The world is not going to end, you’re not weak, you are not letting the side down. You are being wise, listening to your body and doing what is best for you.
6. Decide how much you need to know. You may be someone who believes knowledge is power and wants to ask questions about everything but remember, once heard, it cannot be unheard - so choose your questions wisely. Or you may choose to play ostrich, like me. I just let them get on with it. Don’t pay any heed to the 20th C tropes around TNBC. Things have moved on. I have Stage 4 (metastatic) TNBC and I am on the same first line treatment I started 19 months ago. According to Google, I should have been dead long ago. Times have changed, treatments have changed and we are human beings, not statistics.
7. Don’t expect life to be ‘normal’. Things have changed now and you need to adapt to them, rather than resist. They talk of establishing a ‘new normal’ and that is different for everyone. Don’t get angry with yourself for falling short of your expectations, You are in a different place now.
8. Surround yourself with a network of friends and people willing to help you because there will be times when you need this. I found members of my book group emailing me and asking to be put on my personal taxi list! But remember, not everyone will prove supportive. They may keep telling you you look well when you feel sh*t, they may act like nothing significant is happening while, for you, this is a major life change… discard baggage!
Sorry this is so long. I’m always wordy but I’ve enjoyed thinking back. Hopefully, other people will give you the practical advice. Mine is - as soon as you’ve read this, go to Youtube and try a progressive hypnosis video. I wish you an easy ride and the best outcome
Jan xx
