Just back from my appointment and given a glimmer of good news.
The advice is still to hold off chemo at the moment. In fact, at some NHS Trusts she says they wouldn’t even be allowed to offer chemo yet as the recurrent disease is still limited, and so would be not within budget criteria (!). It was also explained to me that it's like using anti-biotics - you build up resistance so it's best to hold it for when you need it.
I've slowly got my head round this advice, as the automatic reaction is to attack attack attack. I know things will change for me soon in terms of symptoms, but my initial 6-months-to-live fear has been knocked on the head.
As we left, the consultant said that she could see lots of different treatments ahead of me, hopefully with shrinkage of the disease too. So I’m quite shell-shocked with relief.
I'm meeting with the psychologist again tomorrow, and have been ploughing my way through the Mindfulness book she recommended. How different I feel from a month ago!
Thanks to everyone on this site, for listening, responding and just being there. You're all so important to me now.
Caroline x
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Glad to hear everything is getting better! I'm sure you will have lots of treatment options ahead. I'm curious what was the book she recommended called? Thanks so much. Kate
The book was Mindfulness, Finding Peace in a Frantic World by Williams & Penman. It's got a CD as well which I've not listened to yet - just working my way through the thinking behind it all in the book first then get down to practising it. It's not as hippie-ish and airy-fairy as I'd feared!
thanks Lily-Anne. Today the psychologist suggested a couple more reads for me as well (Being Mortal which I knew about already and another one which I've forgotten the name of which is more along existentialism apparently). I've found more time for reading now as well x
Thanks for the reply! I've been researching useful / interesting books. I've heard about Being mortal... I'll look that one up as well! I found a good collection on a website called Live Better With as well Kate
So happy to hear you're in a better place Caroline & that the mindfulness books have helped too. I'm sure there will be plenty more treatment options ahead of you...for now, enjoy the new found positivity & enjoy life. Much love to you xx
I'm soo happy to read this post, wishing you the best of luck for future treatments and healing. It really does make the world of difference when you can speak to an oncologist who treats you like a human.
I am so delighted for you that you are in such a better place than you were. Your relief comes across in your post . I'm just waiting to see my Cancer psychologist now as I start chemo on memo on Mon having been NED for nearly 5 years. Your post gives me another reason to feel positive. Now enjoy your freedom and long may it last !
Hi Molly-O - thanks for your reply. Wishing you all the very best for your treatment too. I expect to be about a month or two behind you so will be looking out for any updates you post. I hope the psychologist session works for you too. I was absolutely taken aback by what I learnt from her x
I have had a really positive day that I want to share with you. I was up really early and went to church. Then I went to my dentist where I had my pre chemo check. Thankfully all went well . Then I had a lovely lunch followed by a meeting with my Cancer psychologist who really is wonderful. She gets me totally . Then on to my hairdresser who sorted my hair for possible Carbo thinning. Best of all she gave me her card and will come to my home if I need to during my treatment . Then just after I got home I heard the news that my favourite niece is pregnant. As for starting chemo on Monday all I can say is " bring it on ! " take care
How lovely that the oncologist gave you that hope - that's just the attitude we need, being given encouragement to go on. I am sure the relaxation and mindfulness does help. I haven't had any counselling but I have read widely on keeping your optimism going and it does help if you say 'well done' to yourself every and again, so keep doing that too!
Yes, you're right. On my darker days I mock this "positive thinking" line, however I do believe you can "think" yourself well to a certain extent, as well as ill. I'm aiming to keep calm and be kinder to myself x
The interesting thing is the brain likes to imagine the worst, but you have to train it to think the best. Sometimes hard to do and you just have to have miserable days sometimes, but they do pass.
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