Head in the sand

Dear regardless of the success or failure of any treatment you are offered and except I think now is the time to put your affairs in order as it will be one less for thing for you to be worrying about, while you concentrate on exploring all your options. I did all that stuff quite soon after getting my terminal diagnosis 18 months ago and to be honest I never think about that admin stuff anymore. It was wills, advance care plan, lasting power of attorney for hubby which took about 2 months by the way and I had a DNR in place early doors. It s enabled me to live a relatively stress free existence and cope with treatment 4 days a week and enjoy going to the hospice to see my gang on a Thursday. I would continue on with your treatment as long as you feel it is of benefit to you but start dangling you toes in the world of palliative care to test the water. You can’t leave these things till the very last moment as they need organising like everything in the nhs. I m currently relapsing my self for the third time so understand your situation entirely and feel enormous empathy for you.

Hi I am so sorry to hear your news.  I am kind of similar in that I am on 4 weekly Carbo/caelyx with a 5% chance of success moving on to weekly taxol & avastin, if it fails - sometimes weekly taxol shows results I am told, so my answer to your question is yes sometimes a switch of regime can help.

however (and yes this is very much your choice). - perhaps now is the time to do some admin, as Jane says.  It doesn’t mean giving up or failing - I more see it that I want my family to understand what I want to happen if I get really sick.  I love them too much for them to be making big decisions for me at times of stress.  They are hard conversations to have & not everyone will want to have them but i Think it might be harder for them in the long run.  And once the “admin “ is done you can get back to treatment and life.

but bear in mind everyone is so different, so find your path and don’t worry if it’s different to mine.

sending you all my love heather xxx

Dear Tink

I hope the new treatment works and is not too debilitating. I sorted out my affairs early after diagnosis and it's been one less headache since then and easier for my family. 

Good luck, take care

Xx

Hi 

I am so very sorry to hear about your scan results. It’s so hard to hear that a treatment has failed. All that effort and suffering and travel expense for nothing. I’ve been through several treatment failures, most recently in November when the immunotherapy had no impact, and I am resistant to most of the drugs they have to offer. I’ve been told to think about  putting my affairs in order as I have a tumour thrombus (mixed mass of cancer and blood clot) that could at any time cause a fatal pulmonary embolism.  I feel for you. 

Like others who’ve replied here, I did the end of life admin some time ago. My will has been written, trust funds set up for the girls and trustees and guardians appointed, investments rationalised, power of attorney set up and ready to roll. I need to do some bits and pieces to make life easier for executors and talk to my GP and hospice about DNR orders and end of life care plans but hey, one step at a time. None of this is easy and all of it has necessitated difficult conversations but I feel more at ease having done it. It’s much preferable to worrying about it. 

I know it’s scary. I’ve been scared too, especially through November and December when I was so ill. 

I am now on a new trial drug. I’m optimistic as it suits the biology of the cancer in my body. Are trials an option for you? 

Beyond this, my other option is weekly carboplatin. I’ve been told I’m platinum resistant so I’m not sure whether it would achieve anything and I’m not sure I’m willing to put myself through it, to be honest. I talked to my older daughter (she 19) about it as an option and she asked if I thought it was worth it and whether I’d prefer to stop treatment. I told her frankly yes - but asked if she understood the corollary of this - that I would die? I think I’d need to be guided by my oncologist about this decision and take into account whether there’s new disease rather than just a growth in what’s there already and the speed with which things are growing as well as my own physical strength and what’s going on in mine and my daughters’ lives. 

Gosh. Did you want to hear any of this? I feel I might be talking about myself rather too much here and it might not be useful for you. Have I had treatment failures and gone on to fight another day? Hell yes. Is it a good idea to put one’s affairs in order? Absolutely. 

sending you a big hug and virtual cup of tea 

xxx

Thank you Saloni and yes, I did want to hear it and yes, it did help x

Grrrr...Predictive text !