What do you think? settling for comfort and care instead of short, sharp stings.

Living with secondary breast cancer Supporting each other and sharing experiences
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I have been debating whether to post this for a while.  I have recently made the decision to cease all invasive cancer treatment, in favour of palliative care.  The Professor of Oncology who headed up my team pronounced himself “shocked and horrified” because in his view, the treatment was working very well.

 

For the last two years my life has been made miserable by cancer treatment and after much debate, heart-searching and a lot - and I mean a lot - of reading, I’ve made my decision.  I recently read an essay by a doctor who said that if he were given a diagnosis of “incurable and inoperable” he would move to the country, stock up with gin and tonic and let nature take its course. He believed most doctors felt the same. 

 

My GP (whom my oncologist didn’t like me consulting without his permission) has put me in touch with a palliative care team from a local hospice.  Having people visit me (yes - they come to me!) and only focus on how I’m feeling, instead of ticked boxes and two hour waits for five minute sessions, is bliss.

 

I won’t bore you with all my details but if you’d like to discuss this more, I’d welcome hearing from you.

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Hi PinziA 

 

Not sure I can say I fully agree with you, especially as you haven’t said much about your condition or diagnosis, but I think I nderstand your reasoning.

 

I was diagnosed straight to stage 4, 3 years ago, and have only been on Letrozole and Denosumab since diagnosis which I have luckily found quite tolerable. I have given much thought to what I will do when progression occurs and have come to the conclusion that although I lean very much towards not having chemotherapy as such, I really don’t think I will know how I will feel until I’m in that position, but don’t think I would go down the countryside with gin and tonic (no matter how good that sounds!) route without doing much research myself about all the options available to me. I certainly agree that many doctors don’t appear to have much faith in it as I remember reading an article many years ago, long before my diagnosis, where it said they’d asked 100 consultants what they would do and over 90% said they would not have treatment in the UK, I stress it was a long time ago and I believe treatments have much improved during that time. It’s no secret I believe in holistic care and would certainly explore all options before I agreed to anything, and would certainly want to know all the facts and figures too! 

 

One thing I certainly agree with you about is quality of our lives, and that you should do what feels right and make whatever decisions you are comfortable with, not your Oncologist, but believe they should be well thought out and informed choices, after doing your own research which it seems you have done. I’m lucky that my Oncologist is open and willing to discuss things but I appreciate not everyone is as fortunate. 

 

Take care, Kate xx

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I think this is entirely a personal decision and should be respected as such. I’m on treatment for secondaries and at the moment feel fine and am working full time. I’m anxious about what lies ahead but try to control this. All I can helpfully say is that I wish you well and hope you are comfortable with your decision. It really is yours to make. Best wishes Anne

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Hi PinziA
I have a lot of sympathy for the way you are thinking. It has to be your own personal decision based on how you feel and your own circumstances. It’s hard for those close around you and it’s hard to tell them

Doctors are so engrossed in keeping you going that they can be unaware of the cost to you and take it as a bit of an insult if you appear ungrateful.

The relationship between specialists and GPs can be a tricky one. Your onc doesn’t like you seeing your GP, mine thinks I should make more use of him. Often it seems they end up batting problems back and forth.

Your decision is for you alone and you must take the one that’s best for you.

Bon xxx

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Thank you all for replying and your good wishes.  I probably should have taken my husband’s advice and posted this in the ‘End of Life’ category because I am further into my journey than most.  I didn’t post in End of Life, however, because I don’t believe it is, necessarily, the end of my life. I think I still have a bit of living left to do - hence the “gin and tonic” reference.  The palliative care team can supply similar outcomes but without the hangover! 

 

Yes it is a personal choice - and not one that I have taken lightly.

 

 

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Dear Pinzia

 

I get it, completely.  I might be wrong, but maybe there have always been elements of your current attitudes/feelings about your quality of life, through your adult life. . . . . 

 

I am 63.  Found The Lump by chance in March, had WLE and axillary node clearance in May, and 20 zaps in July/August.  On Letrozole now.  Take the calcium when I remember.

 

I don’t think I am ‘out of the woods’ as it is a grade 3 - chemotherapy was ‘recommended’ but I declined, because that is ‘me’ - my ‘head’ and chemotherapy were never going to be partners - and I also refused the bisphosphonates as the thought of the ‘risk of jaw necrosis’ was the decider for me - I don’t have great teeth anyway.

 

It’s always been about quality of life - for me - but I am lucky to have got this far in life and for this to land in my lap at this late age.  I do think, personally, that 63 is a pretty good run with good health?

 

My husband discovered he had prostate cancer at 48. His father had had it so there was the genetic link.  He had a prostatectamy. He thought he’d caught it in time, we both did.  Then gradually the PSA levels were creeping up again.  So radiotherapy.  CT scans. So many blood tests his veins are shot. And now, 17 years later, he is still here  -  but his quality of life has been pretty damn awful, as he is now on the hormone injections that make a bad-tempered man absolutely foul, he gets hot flushes, sweats terribly, has put on far too much weight, and his legs are heavy with all the appearance of lymphodoema . . . . . .

 

My heart goes out to the young women in their 20’s,30’s, 40’s, 50’s who join this awful club. I fully understand why they would throw every possible medication and hope at it.  But for me, I know that I won’t be like that.  I found the Lump by chance.  I’d declined all mammogram routine letters.  I had surgery because I knew I had to do ‘something’ and that I really didn’t have a choice, if I was going to get the rest of my life into some kind of order. . . . . 

 

I hope I haven’t said the wrong things and upset anybody - but this is just me. 

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Dear PinziA,

It is a personal decision and one that I hope when the time comes I’ll be able to make. I feel it takes a lot of courage to say ENOUGH. But when quality of life is compromised I think I’ll feel the way you do.
I too sometimes feel that the oncologist just rush through and yes I do wait 3-4hours to see him for just 5-10min. But I console myself by thinking that I’m doing well so he doesn’t want to waste time with me and he probably has patients that are worse off than me.
You take care and will think good thought for all of us here.

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