I don't want to have chemo

Respect to everyone who goes down the chemo route, but I am resisting it. The side effects and after effects sound grim. I am 70, I live contentedly alone and am very involved in a community choir and in community gardening.. My quality of life has improved in recent years and that is very important to me, but at the same time, old age is catching up on me - hearing, eyesight, neck and general mobility all reduced in recent years. Two years ago I had a breast lump removed and for various reasons I walked away from chemo and radiotherapy. Since then at the same location a couple of breast lumps appeared which I ignored for some time. Last week I had these removed, with some lymph nodes removed. I have had various scans which show no presence of secondaries. I am prepared to go for radiotherapy. I am not afraid of death, so at the moment I am focusing on developing a community support network so that I will not feel "stranded" if/when my health deteriorates. Is anyone else out there considering these issues?

53 Replies

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  • Hello Jackie, if you haven't already come across it, Penny Brohn have a focus on 'living well' with cancer in a very holistic way as is best for each individual. They have a centre in Bristol as well as an online community on Healthunlocked and it may be worth a look.... Best wishes, Sx

  • Thankyou.

  • I've just come back from 2 days at Penny Brohns ... absolutely amazing. Can't speak highly enough of them ... very emotional and restful.

    Hope this helps.x

  • I don't know what to say, except 70 is young to me. Xx

  • Thanks.

  • Hi Jackie, you know 70 is the new 50. I can see your point in not having chemo. Perhaps there is a breast cancer site on Health unlocked as all of us here have Ovarian Cancer although perhaps one or two may have both, I could say for sure. Someone has suggest a Penny Brohn centre so perhaps that is place to go, check and see if there is one near you or a Breast care centre and they will put you in the right direction. Wishing you well with your singing and gardening

  • Thankyou.

  • I wish I had been strong enough when I was first diagnosed to avoid chemo and go fully down the alternative health route. Good luck on your journey

    Francesca x

  • Thankyou.

  • Hi Jackie. Id just like to say I respect your decision. Its your life, your decision and I wish you all the very best xx

  • Thank you.

  • You have the right to make your own decisions and I respect you for yours.

  • Thankyou.

  • I have considered this frequently over the last few years and I and respect your choice. But after the op and first course of chemo I had two years and five months of very happy healthy living. I then needed more chemo but I have had another year and a half since then. I'm 66. I'm treasurer of a local community group which works on community cohesion and also of the local Green Party. I'm involved in other community and political groups as well including Amnesty and LGBTIQ groups. I was at the demonstration in Manchester on Saturday partly to object to the damage being done to the NHS. I'm not afraid of dying but sad that I will be leaving the world sooner than I had expected. But while there is work to be done I am going to stay around as long as I can and will keep campaigning. I am glad you have people around to support you and hope your chosen path goes smoothly.

  • Thankyou.

  • I said those words to my gynae surgeon and oncologist as it terrified me in a way the surgery didn't. I was 44 though and have two young children so did have Carboplatin. It was not as bad as I had thought at all. I didn't lose my hair, I never actually vomited as the anti emetics are very effective and felt myself a day or three after the treatment. Obviously it does depend on what they offer you in terms of Chemo but do bear it in mind and tell your oncologist your concerns.

    Best wishes with your full life!

    Xxx

  • Greeningthegrey - thank you so much. I know that if this had happened to me in my 40s (and yes, I had a lump scare in my 40s) my response would have been completely different. I am so glad you did what was right for you. Best wishes to you for a full life also!

  • Hi. While not in the same position as you, I do so admire your decision about chemo. Yes, you are right - that there can be some dreadful side effects, but each of us reacts differently to cancer news and it is wonderful that someone who declines chemo share their views and feelings on this site.

    it is true that 'age' does catch up with us - even if we don't want to admit it.

    But I wish you good health and if you do have radiotherapy, that it goes well.

    Regards and hugs,

    Daisies

  • Daisies, thankyou so much.

  • Well, Jackie, I guess you must have no one in your life who loves you...I was fortunate, I had those who would suffer far greater if I let myself die, than if I fought to live for them. So, if you don't feel that responsibility at all then I guess that's your choice ......just sayin'

  • Well that sounds like a pretty harsh response. There are many types of love and they are not all related to family. I'm sure Jackie has many people who love her. The point is that she has the right to decide on her own action. I wish Jackie a life full of the things she enjoys, as I do for everyone on this site.

    Carole

  • Yes, I truly meant it to be harsh...one of the problems with having cancer is how everyone babies it! It is a disease that is alive and loves attention from others. By giving in to it as she intends to do is a heartbreak. It can be controlled! I know that most of you on here know this! The chemo is uncomfortable but it will save her life and give her many more years....she hasn't even tried it yet and to just take the attitude she does deserves at least someone to give her a little slap across the face. I have controlled this disease for 11 years now, Stage 4, OC,and yes, it takes work, but it surely is not unbearable. It is just so sad to all of us when someone won't even try. So, be angry at me if you wish, but cancer is NOT a lay down and die disease. If she had Type 1 diabetes, and that takes even more work, would we all allow this attitude? Is that what this website is about? Aren't we here to Help? If this website is just a bunch of give in to Cancer girls, then I guess I don't belong on here. But like it or not, I am here.

  • I'm very glad for you Hannakat that you are doing so well, and that there are others like you.

    Followinga lot of different chemos which resulted in at most a chemo free period of 5 months, my mother is no longer able to work, or keep house without help, travel on her own, or do any of her old hobbies like gardening or dressmaking for any more than ten minutes at a time, she also can't concentrate for very long and chemo has affected her memory and hearing. Chemo is more than just uncomfortable when you are faced with being tube fed due to ulceration, to mention just one aspect. Mam still "gets up and shows up" every day, and tries so hard. I would hate to think of her coming on this site while trying to decide whether to stop chemo, or go against the flow in any way, to receive even a metaphorical slap in the face. Jackie, (whose post i dont mean to hijack, so this will be my last word) is 70 years old and knows her own mind. I dont think respecting someone's decision equates to babying someone.

    Continued good wishes in spite of our differing opinions!

    Mary

  • Marymarcy. Thankyou so much. Although I am generally in very good spirits, your description of your mother's situation has made me cry a little.

    I am sure if I had been faced with this at a younger age and with family and/or other commitments my attitude would be very different. And so I completely respect others who go down the route of as much treatment as is available.

    Meanwhile, me, aged 70, with the paradoxical "luxury" of no family or other demanding commitments, and after a mostly difficult life which has left me in a state of (mostly)calm acceptance of the small, beautiful pleasures in life, and an acceptance that my time will come, well, I want my eventual end to be as peaceful and as gentle as possible. So I am a little reluctant to go ahead with aggressive chemo with its potentially violent side effects and after effects.

    Earlier this year I attended a meeting addressed by Dr Phil Hammond (practising GP, Private Eye etc journalist, Bristol child heart enquiry whistleblower, standup comedian). He spoke movingly of his loving relationship with his elderly late step-father, who chose to have no treatment after it became apparent that he had pancreatic cancer. His step-father, he said, enjoyed a good two or more years of holidays, doing what he wanted etc. Preparation for his ending was demanding i.e. - get a supply of painkillers in stock and support systems etc - and notices saying "Do not rescuscitate" on the fridge door etc The last month was difficult he said, but Dr Hammond was of the opinion that his stepfather's choice was a good one, and that high-tech invasive medical treatment of older patients was not necessarily in their best interests.

    So yes, Marymarcy, I agree: continued good wishes in spite of our differing opinions.

  • Hi Jackie, good to hear from you!

    I'm really glad that you are getting to enjoy your life now, after the past struggles you have touched upon.

    I suppose something that doesn't get mentioned often when talking about "fighting" cancer, for lack of a better word, is that some people have had to fight harder than others throughout their lives in various ways, there isn't a level playing field that everyone starts from, everyone has different challenges quite apart from cancer and that's just one thing that informs how you react to a cancer diagnosis or how you deal with it.

    You sound like you know your own mind and are very self aware. And no harm in tears but while i would never want mam to suffer, i have learnt and grown a lot, and that's no bad thing.

    I don't think 70 is is old and i hope you have lots of time left, but who is to judge what a good life is anyway, you could be more mature and self aware and more of a blessing to those around you in a short life lived as best you can, than live to 100 and not be open to learn or grow.

    Sending a hug and good wishes your way.

    Mary x

  • thankyou, that is a great response, and you are showing great understanding. I have learned a lot from my original posting and am become calm again (after internal turmoil for a while) about how I want to go ahead. Love and best wishes to you and everyone who is on this(multifaceted) journey. Hey - lets make it the journey and the choinces you want for you - and me, for me - with love, Jackie

  • i find your post puzzling. so many positive statements about things that may have been true for you BUT are not necessarily going to be true for others.

    why so angry? why so directive? we are here to support each other, not to judge each other!!!

    compassion-( not pity) --and empathy go a long way.

    who are you to say a stranger has " no one who loves her" --and unless you're the mother of young children, why are you so sure you sticking around is such a positive for others?

    i hope that your post doesnt reflect your real personality. i hope you are kinder than this.

  • My personality is one that really wants people to give the most they can. Cancer shouldn't be babied..it should be treated with anything but kid gloves. Put on our big girl panties and have a go at it. Cancer can be controlled but not if it has a defeatist attitude, which it seems so many on here seem to approve of. The statement of "no one to love her" was given that she has a responsibility to those who do love her to live. It is my opinion that a strong person can do this...not one who is encouraged by so many on here to just give up. And if sticking around is not a positive for you, don't assume it isn't for others....God gives us strength, he expects us to use it. Sorry if you don't like my approach, but it works!

  • The woman who wrote, was it Jackie, had not even tried chemo.....was giving up at pretty near the beginning...not like your mother,. I also am 70, have twice been given less than a few months to live...tried new chemos and they did their job. I am doing well, and can't ever give someone who has not even tried chemo the go ahead to die. just not in me.

  • with all due respect, it is not your role to give a stranger " the right to go ahead and die". i profoundly disagree, not with your choices for yourself, but for your non-fact based assertions and your judgement of others.

    cancer cannot always " be controlled". i'm done.

    i hope you find peace.

  • Hannakat - you say "Well, Jackie, I guess you must have no one in your life who loves you..."

    You are right. As it happens I have had to deal with finding out about those who you, without knowing me, refer to being "in your life who love[s] you". This has involved complex issues around abuse. But that's another issue, not to be addressed here.

    Meanwhile I have a few friends who are showing understanding. Thankyou to them.

    And, as I have said, I am at peace with myself, life and the universe, at the moment in very good health, and at the age of 70 I am hoping to avoid aggressive treatment and want a good death, and a good life until that happens. I am still uncertain about what future treatment to go for.

    I wish you well with your treatment.

  • Thanks Kagan, see my reply to Marymarcy.

  • OK hannakat, I respect your views.

  • Thanks Carole, I have replied above and will reply again to hannakat below. I am taking these responses as I read them, I see hannakat has replied to you -

  • That's fine, I think there are may people who would agree with you. But hey, well, this is maybe the first time in my adult life that I am putting myself and my wishes first - aged 70 - - - so that's what I am doing and it feels good (although of course it is tough doing this, standing up to medics, explaining how I feel to people I am close to- - - but well, life has been pretty tough - - - -I'm aiming for my last few years to be as easy as possible - going for whatever palliative care is available on NHS.

  • Wishing you all the best with your decision Jackie, i think it's very brave of you as people expect you to take everything that's offered and so in some ways you are swimming against the current.

    I didn't want my mam to have her last line of chemo but she did. I was hoping she'd be strong enough to think of herself and stop, rather than think of us, who have to lose her some time, and and are broken hearted to see her suffer. When it failed like all the others, it was still a tremendously hard decision for her to stop, even after 25 chemo sessions and 4 months of oral chemo in 30 months and the difficulties that has caused. For me, loving my mam doesn't mean having her fight to live at all costs.

    I don't think its fair of anyone to comment as to whether or not you have anyone who loves you in your life, bu i hope you do, and that they are supportive. Not having chemo doesn't equal giving up.

    With every good wish

    Mary

  • Marymarcy, again, my heart weeps a little for you, thinking of you watching your mother struggle and suffer, and wanting to make it a little easier for her. As you say, giving up on chemo is not the same as giving up.

  • Hi Jackie, I do hope you can come to a decision that you are most comfortable with. I am 71 years young and diagnosed stage 3 OC Aug.2012. I have coped with 3 rounds of chemo. although unpleasant I am still here ready for the next round always hoping that it will be the one to give me at least a longer remission period. Lots of love Bridie xx.

  • I wish you well. With all good wishes.

  • Hey Bridie, it sounds as though you are well up for it. I agree with you (because you are 70 years young) that aged 70 years we can still be up for more that life throws at us. But me - - - well, I've taken on a lot of challenges, and right now, I want to ease up. But go for it Bridie, take all my wishes in the world for you.

  • Hi, Jackie. I had always been terrified of the idea of chemo and said that I was much less afraid of dying. However, when I was diagnosed with Ovarian cancer 3C at 63 and talked to the gyno oncologist and some cancer survivors, I knew I had to at least try. It turned out to be so much less "grim" than I had expected, that I want to encourage you to at least give it a shot. I know that some people are much more miserable than I was, but if you try at least one treatment you can always walk away. I received significant relief from my first treatment. I do respect your wish to live your life and relate to your disease in your own way. But at least one treatment would give you a better-informed decision. God bless you.

  • Linderruth - Glad to hear that you have had a good experience of chemo. To be fair, I am currently in robust health with no apparent contra-indications (just a couple of scans) which is one of the reasons why I am reluctant to go ahead with chemo. But I have not entirely dismissed the idea of chemo. I agree, one treatment and I can walk away. Maybe I will try it - - - ? With all the good wishes in the world.

  • Claire50 Thank you so much. Thanks for the hug - here's one for you, too. Hug. Hug. I have just quickly gone through the replies to my posting and been glad that there has been an unexpected range of opinions - even the very negative one (I am used to negative responses - see the next paragraph - - - ).

    You might see from my replies above, if you are still following this unexpected dialogue, that I agree with your comments. Its indirectly relevant to say that, twenty years ago - 1995 - when I was trying to get online support around unrelated abuse issues for a very long time I received a non-stopappallingly hostile/hateful onslaught of responses to my questioning of issues involving abuse. This is not entirely relevant to this but - well - at the time I did not know the term "trolling" - so I will check out the negative response here in case it transgresses protocols etc.

    So yes, I agree with what you say. You say:

    "my one goal in this is to have dignity and humour but thats not everyones route just because i choose to laugh as much as i can thats my journey !! i also try not to judge anyone so i send jackie a huge hug and say to you, you go girl( excuse the girl!!) dye your hair purple , play music very loud and dance like theres no tomorrow and eat as much chocolate and many chips as you can find !!!! and choose what you want from your life and do it with dignity and humour!! ( and if you need some humour call on me!!) and. to the lady that disagreed maybe next time just send a hug !! rant over"

    I've been here twice before and had someone then to cuddle up to for comfort and support and strength, didn't want holidays or special treats. But this time I am mostly alone, with, thankfully, a few new friends who are dealing with their own issues but show understanding and emergency support. I am 70 years old and I am still strong. So yes the music is loud sometimes, and quiet and gentle sometimes, and the radio and TV are on all night so that when I wake my mind does not dwell on gloomy things. I don't dance a lot or eat a lot of chocolate, but I drink lots of wine and gin and loving it, and this time round I am booking holidays, because luckily, I can afford a couple of holidays, no more than that. x

  • Claire50, yes, that's the plan and I am up for it this time! But in earlier years I have wanted to find peace in other ways. That has been good and I found peace then (well, relatively - - - ).

    But right now, I'm unexpectedly (maybe because for the first time as an adult I've let go of heavy responsibilities and commitments) enjoying making chutneys from community garden produce and taking it to community gardening events, also, making life much, much easier, using online ordered grocery deliveries of everything else - - - including lots of gin, and lots of mixers - - - - and wine - - - - or vermouth - - - instead of cakes, chocolates, whatever I might fancy.

    So, well, to all out there, facing medical procedures etc - go for what works for you. For me tonight (can you tell?) its, as with Denis Thatcher (well, I didn't like him but I admire his style), a very large bottle of gin, a couple of supermarket bottles of diet tonic, slices of lemon and a bucketful of ice. And feet up on the sofa and favourite programme (Corrie? Great British Bakeoff? Newsnight? Whatever?)

    We're a long time dead. I say lets treasure every moment we can while feeling well (with or without medication) , from the sunrise creeping over my window sill until the ending of the day.

  • Respect to you Jackie. We are all individuals and have to be allowed to make decisions about how we deal with cancer in our own way. Myself I am hoping to still be here at 70 (I'm 59 this month!). My Brother has bowel cancer and after lots of surgery and chemo over 3/4 yrs has decide not to have any more treatment. He is his 70's and has had enough of the side effects chemo. I respect his decision too although it's hard for my Mum.

    Love to you

    Annette xxx

  • Respect and love to you, AnnieMae and especially to your brother.

    Because I am now 70 and have been involved with breast cancer for five years. (Yes I know I am on the wrong website but its where I have ended up and its working for me right now.) so I hope the following may be helpful.

    I am new to going down the palliative care route but it is what I want for me above all els and I suggest that's what your brother wants too. I live in Bristol and I see online that there is an NHS Palliative Care Consultant, something like that. Can your brother's GP refer him to a Palliative Care Consultant? Why not ask and keep on asking, there's nothing to lose?

    And I am not an expert but suggest you contact Macmillan nurses (not just for end of life care) and they will help you get the palliative care support your brother and you and your mother needs. Ask them to give support to your mum, because your posting suggests she needs help in dealing with her son's cancer.

    , you say:

    My Brother has bowel cancer and after lots of surgery and chemo over 3/4 yrs has decide not to have any more treatment. He is his 70's and has had enough of the side effects chemo. I respect his decision too although it's hard for my Mum ease you through this.

    I wish you so much help and support, please search for it, and keep posting about any successes and any frustrations.

    With love to you and your brother, and your mum,

    Jackie

  • Thank you Jackie for your kind and thoughtful reply. My Brother is still under the hospital as I think they are still trying to persuade him to have treatment. I take on board what you say about MacMillan and my Mum. She may well get some vital support from them. Whilst I'm sure it will be difficult when my Brother starts to deteriorate, I do have some empathy with his decision.

    Thanks again

    Annette xxx

  • AnnieMae, My gut feeling - and you may disagree, that's ok - but I say - please go with what your brother wants. Its his life. Its his pain and suffering and he wants it to end. Finally, its his hopefully good death, and surely we all want a good death -

    With the best will in the world, nurses and doctors and consultants want to keep trying to overcome diseases etc - - - and they will try and persuade your brother to go for more treatment - but at what cost to him as they keep trying to do this? I believe that sometimes they go beyond humane treatment of individuals, even if they believe it is justified in the greater good? I think no, there is a time to say no.

    Sometimes we need to say no, no, no, not this time, you have tried enough, go away and try again on others, not on someone who has suffered enough in his 70s. No. No.

    (It is difficult to do this, I have had to do it recently to a friend of mine.) When the time comes, say No. No. No.

    I have no right to say anything because I do not know your brother, but all I can say is, please give him all the loving support you can and put him first, especially, especially if he is in agonising pain. . Please. Only after that, then give your mum support, but she is not the one going through the treatment and the pain. If she loves him she will let her son end his life as he wishes, with as much peace as the NHS will give him.

  • Hi there Jackie ..

    I've read this thread with interest.

    It seems to me that age is irrelevant. The question should maybe be, what makes an otherwise healthy adult decline treatment? Xx

  • You are absolutely right. Age has nothing to do with it. But my own personal and health baggage, and awareness of past and current support (and hostile - yes, really, there are oppositional people out there) are influential in my decisionmaking.

    Also - you say "what makes an otherwise healthy adult decline treatment" - - - (assuming I am otherwise healthy? - - -)

    Please ignore the rest of this posting if you are concerned with issues that are "not about age" i.e. you may be concerned with someone younger and I completely, completely agree that if I were younger I would be probably pursuing an entirely different trackway - - -

    - - - (hmm, not entirely sure, I think anyone with the energy to pursue the points I make below (about reliability of records etc) can feel it is worth pursuing them. Meanwhile, anyone in that situation, my heart goes out to you. - - -

    Well, within the same week, two weeks ago, that I had breast cancer surgery the national news reported that 1 in 3 path-lab reports involving some cancer checks at Southmead Hospital, Bristol (where I am being treated), had been faulty.

    Hey, how do you feel about this, guys - what if one in three of your bank statements were faulty? And bank statements - are they more important than medical checks involving life versus death issues?

    And banks especially the Bank of England, are they not nationally owned and controlled bodies like the NHS? When I have asked questions about these comparative NHS v Bank records I have been told, well, NHS is much more complicated than banking.

    Really? More than individual bank accounts with varying overdrafts, complex interest rates? Also Private and Commercial mortgages transactions? National and International rates of exchange? Etc. etc. So what are our priorities here?

    To continue - You are saying I am choosing to be an "otherwise healthy [or hey - maybe unhealthy??] adult who wishes to decline treatment"?? What do you other readers think?

    I feel, as someone living with breast cancer, that to hear this week about unsatisfactory reports involving cancer-related pathology testing in Bristol going back over years - - well, it feels like I am playing Russian Roulette with my health - but there's not just one bullet in six that can be fatal - it feels more like three (bullets) out of six - -

    So that is one explanation about why I do not want chemo. Does anyone else agree. Or wish to develop the arguments?

  • Dear Jackie, best wishes to you, I initially had chemo every three weeks with all the awful side effects that you read about but then I was switched to weekly chemo which I was able to tolerate much better as it is a much lower dose. Hope this helps

  • Goodness .. Is all I can say almost. For most of my adult life, (including as a teenager) I have had serious, linked, health issues. They didn't seem linked at the time though. You seem passionate about your plotted course but I just want to say that the women here are a real support. Xxx

  • Hi if it makes you feel any better my mum off 70 years off age had her first chemo yesterday no effect what so ever had a coffee while doing her treatment like nothing happened god bless you

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