Head in the sand

One of the annoying things about having cancer is that people want to tell you how to think and feel. There are NO rules. Just cope with it as you dammed well please. 

Totally agree. Anything can happen, things are happening fast in terms of advancements and extending the length and quality of life. 

I find myself not exactly with head in the sand, but definitely trying to live day to day, with some short term goals and not wanting to hear much about prognosis. As others have said, hope is important and having it taken from you by some arbitrary possible "use by date" is not helpful for my mental health. I am not daft and know the time will come, but then we all have a sell by date, as" no one gets out of this alive"as the saying goes. As long as I feel ok, then I can keep on putting one foot in front of the other and enjoy each day. I dont have a bucket list as mentioned on another thread, as I don't crave new "exciting" experiences, I want the familiar and comforting presence of good friends, nice food, getting out for a walk, walking rescue dogs, having a laugh, curling up with a good book, ranting at the tv about politics, sun on my face as often as I can. I am lucky to live at this time in a safe country with, for now, a good health system ( one of my rants), and in relative comfort ( although I know that varies and not everyone is as lucky as me). So I try to be grateful for each day and just get on with it. What is the alternative? We deal with what we have to deal with, and there are many on this forum who have dealt with much more than me.

Hi

What a lot of sense everyone has talked. There’s no right or wrong, there’s only what’s right for you at a given point in time. 

I am a need to know everything kind of person and I think it has put me in good stead. It gave me the knowledge I needed to pursue treatment options that have prolonged my life. I did start from the baseline of having a degree in biochemistry and a career writing about health. So reading scientific papers was part of my skill set before I was diagnosed, as was an understanding of risk and statistics. 

The important thing to understand about statistics is that they apply to populations. They really don’t mean much at an individual level. So to turn the numbers into sell by dates is pretty much meaningless. I do understand how hard it is not to do that though and I’ve had more than one argument with very senior people in cancer about the way numbers are used and the impact they have on people diagnosed with cancer. For example, the first number you see when you look up the cancer stats for people with a  BRCA1 mutation is that you have an 85% lifetime risk of getting breast cancer and a 40-60% risk of getting ovarian cancer. I’ve pointed out to some very senior people that a 20-year-old who’s just been told that she carries the gene defect will immediately think “I’m going to get cancer and die” and it’s just not that simple. It leads some of these young women to make some questionable decisions about life changing preventive surgery. The way these numbers are used is not just irresponsible but dangerous. Or look up the stats on grade 3 womb cancer and they’ll tell you 40% of people are dead within five years. How about 60% are still alive? Same number, different impact. I’m glad to see that some of this is changing so I’m not the only one who’s been saying this. Sorry. I appear to have gone into a rant. 

Having said I’m a need to know everything person, I did realise a couple of years ago that I was taking it to extremes. Obsessive research had become a way of fuelling my anxiety. I’d be anxious about my future, reason with myself that knowledge was power then horrify myself with the research which only proved I was right to be anxious. It was a vicious circle. So I stopped. I look into new information about treatments I’m offered but as I am now in clinical trial territory, there’s  precious little of it. 

Instead, I’ve worked on managing my anxiety. Meditation has been my most powerful ally in that. I’ve found that managing my anxiety has all sorts of benefits. I really don’t worry too much about scans and results. I pretty much know from my body what’s going on anyway. I enjoy the day for what I can do rather than regretting what I can’t do and for what that day has to offer, whether it’s the sun on my face or the sound of my daughters laughing. 

I do want to make informed decisions about my treatment. I do want to be in charge of saying “enough is enough” when the time comes. To do that, I need to understand the potential benefits of any treatment and the consequences of saying no. So I’ll always want more information rather than less. My doctors know that and we have some in depth and honest conversations. That’s just me. We are all different. 

Thanks for starting this interesting discussion. I do hope you can manage your anxiety around your scan and that you get good results 

lots of love 

xxx

Crikey, . I went right off on one there. Let me keep it simple. My advice is don’t worry, be happy 

xxx

Thank you Saloni for you common sense on this subject. I also agree that listening and understanding how your body feels is a big part of understanding the disease.

Thank you for all your inputs. You have all helped. And yes.... I have anything that can be crossed, crossed for the scan on Thursday. I will keep you all posted . x

When I was first diagnosed I was told 90% of patients like me dont live past 5 years and here I am 8 years later living a good life although now in a wheelchair. Somebody has to be part of the lucky 10%. I did get all my affairs in order to make things easier for my family. I have things to look forward to mainly holidays and weekends away with friends. Have just booked to see Rick Astley at Newmarket races in July. I dont have any advice except do what is best for you to get through each day. Best wishes for your scan xx

Hello everybody. So I have just had my scan results. Not only has my chemo had no effect but the cancer has spread through more of my liver and neck. They are now putting me on a weekly paclitaxel chemo plus the carboplatin (Taxol/Carbo). They've also told me to perhaps think about "getting my affairs in order".  I am very scared. I wondered if anyone else had failed chemo to start with but went on to fight another day, so to speak.

Hi Tink, so sorry to read your post, I am in the same boat refused treatment and giveen  max 12 months to live, those words terminal are scary and I have been to hell and back with nobody willing to try and help have ago at survival.

All I can say is if it was not for the kind caring people in this group and others I would not have coped,it gets better.

Good luck, I hope you get all the help you need and I am sure you will.