Hi all :) I was wondering, do any of you use a different term than 'survivor' once you have finished surgery and chemo?

[Laurie277]

I was diagnosed with OC and uterine cancer last dec and have had total hysterectomy and six months of chemo: just waiting to see if it recurs now. I see the terms cancer 'sufferer' and 'survivor' and really dislike them. I don't feel I'm suffering particularly, and feel the term survivor is too soon in the progress of my case to use. Any suggestions?

[citrine]

Totally agree with you about those terms. One of them is depressing and the other is tempting fate. I haven't thought of any alternatives yet but I'm sure there will be plenty coming.

Love Mary xx

[Hidden]

I too will wait for the alternatives, no doubt they will come thick and fast!!!

Regards Barbara

[Jan76]

Hi there ,

If I get asked 'how things are' I say that I am NED .... which is what my scan shows ..no evidence of disease .... hope that offers an alternative .

Love Jan x

[Whippit]

Dear Laurie

You are definitely a lady after my own heart. Everyone who's alive, regardless of having cancer, is a 'survivor' and I rankle at the idea of a 'cancer journey'. I had a diagnosis of ovarian cancer 2 1/2 years ago and I've been lucky to have had a long remission which is now drawing to a close. I retired early in January this year. I've always done a lot of volunteering but these days it is concentrated on work relating to ovarian cancer so in a way it's just a career change for me.

I know from friendships on the site that I"ve been extraordinarily lucky. However, if I had to describe myself at the moment I'm a women with a lot of interests who happens to have cancer.

Love, and power to your elbow. xxx Love Annie

[Izzystep in reply to Whippit]

Well said Annie xxx

[TealSista]

I always use the term ovarian cancer survivor. I see it as aspirational It is my way of sending a subliminal message out there to the universe.

[Hidden]

Hi there... I think it depends where a person is with this disease. I was put on palliative care and told after treatment that although I had a partial response to treatment and stable disease mostly, there was some slow growth. If I had been given No Evidence of Disease, then I probably would see myself as very happy and extremely lucky. I can't work because of the restrictions this disease places on me and I miss that, and I use a wheelchair when we go out shopping for example, because my abdomen gets so painful, but I've adjusted to that. After all, it's a means to an end. However, given all of these things, I too count myself lucky. I've always found things to laugh about and humour hasn't left me at all. I lose all control of myself when I see the absurd around me ... and so I have a lot of fun in my life. Recently, I've had a major setback, but I'm on the road to very positive things again and long may that continue. I'm surviving but I'm not in the place I was well before diagnosis either. If people ask me what I have, I don't say I'm a cancer survivor. In a way, we're all surviving something. I just tell it how it is and say what I have but that's because of the stage of my disease and how it affects me. We're all different. Had I been able to work and live a pre-diagnosis life, I still don't think I'd have liked to use the word survivor. It would seem as if I were tempting fate somehow. I see myself as living the life I want to live given the restrictions upon me and that makes me very happy. I don't really want to identify myself with the disease because I'm separate to it somehow even though it's part of me. So I'm me and the disease is something else ... like a wasp at a picnic ... very annoying and intrusive if I let it be! I, like Annie, rankle at the phrase, 'cancer journey' because I'm not on any cancer road. I intend to be there when the drugs totally work and that day is going to come soon... I really know that! Love Tina x x

[Whippit in reply to Hidden]

Dear Tina, I love your comment and you give me hope that I can face the future and still have a laugh and be myself with the cancer being the wasp at the picnic. Very good description and puts it in its rightful place.

There's a big positive in having a life-limiting disease in that it puts things things into perspective. I was at the supermarket on Saturday and a man made no end of fuss because he thought someone had taken HIS space. He got out of his car and made such a huge scene. Not content with that, he swung off to park in a nearby lot, and then returned to lambast the other driver who happened to be a woman. I thought to myself if he had cancer he might find different priorities in his life.

Respect to you for getting out and making use of whatever aid you need to do what you want to do. May we still enjoy many years of laughter.

xx love Annie

[MargaretJ]

Hi!

I could not agree more! I have known since diagnosis that this would recur (this is my 2nd recurrence) and my attitude is that I have cancer, I am not a sufferer, I live with it, like any other chronic illness! I am not a survivor! I am a bolshie old cow determined (4 years after diagnosis) to see my 14 year old, year 9 grandson graduate and his auntie get her DPhil in 7 years time!

I am not sure if it affects life expectancy but being positive certainly makes the quality of life better. I spent too long in a miserable marriage to waste time now!

Two fingers to the 's' words and hello LIFE!

Love Margaret!

[Hidden]

I also HATE the terms 'sufferer',' survivor', etc, to label me. Labels necessarily reduce the wearer, and we react to them in various ways, but nearly always to give the condition with which we are labelled too much focus and power.

Everyone is a potential cancer subject, so there is some sense in which everyone who is not being treated or knows they have active illness has no evident disease.

If I talk about it at all it's to refer to 'when I had cancer'. I don't have it now, and hope not to get it again.

Best wishes,

Isadora

[Whippit in reply to Hidden]

Love it Isadora. Long may you stay without cancer. xx

[Hidden in reply to Whippit]

...and I wish you freedom from it. xx

[harley]

I have never thought of myself as a sufferer, nor as being on a cancer journey, and whilst a survivor of some sort, not a survivor in the usual sense of the word. Someone touched by cancer perhaps but even that sounds a bit twee! After two recurrences for PPC first diagnosed in 2010, I think of myself as living with a chronic illness, just like many other people. We shouldn't be categorising people who, lets face it, all have different stories to tell.

Joanna

xxx

[Hidden]

We are all on a bus of life to an unknown destination, some get off along the way and get back on later, others stay on the bus until it reaches its destination. Xx

[Izzystep]

Never used the words 'sufferer' or 'survivor'. I consider myself to be neither. Like Isadora we shouldn't be labelling ourselves. We are strong women living life to the full who just happen to gave cancer. I thought I was clear only to be told 5 months later that the big C has started to grow in the dreaded lymph nodes. Chemo starts again end October so that why I don't use survivor or sufferer. Rotten disease. Let's hope a cure for all can be found soon. But meanwhile best wishes to all xxxxx

[Whippit in reply to Izzystep]

Mine's in the lymphs too - always was. Haven't asked in too much detail what that means as it's like asking how long is a piece of string. I restart chemotherapy (2nd line) next week. Let's be strong women together and wave two fingers at it. xxxx

[Izzystep in reply to Whippit]

I always had 'deposits' in lymph nodes. Now growing. Must be using good fertiliser cos I can't grow anything in my garden lol. I am due end October for 2nd lot. I am having gemcarbo plus Avastin. We will have to share our experiences xxx. Good luck!!!!

[Whippit in reply to Izzystep]

Hey you've done well to get Avastin. I've missed it at the RM because the trial for relapse with Avastin has closed and I didn't get taxol the first time round (admin error) so I have to have that to qualify for many of the trials. Mine is carbo-taxol and then they think perhaps PARP inhibitors but if not they say there are other follow-up drugs that they hope delay relapse.

I'm also a hopeless gardener. Do you think you might have hit upon a great discovery! ha ha xxxx

[Izzystep in reply to Whippit]

My first round was a weekly trial. Carbo and taxol together for 1 week and then carbo for 2 weeks. Onc said she was applying for funding for Avastin so won't know if I am getting it until it's given !!!! They will have a bloody fight on their hands if I don't get it. I researched it through the Target OC web and I was the one who mentioned it. Supposed to be a breakthrough in OC. LETS HOPE IT IS. Back to gardening, I seeded my grass only to find my husband mowing the lawn only 2 hours later. Must communicate more lol xxx

[drdu in reply to Izzystep]

Good luck to you too.

Love,

Eileen xx

[Hidden in reply to Whippit]

Good luck for next week Annie. I dislike 'cancer journey" too but don't mind survivor.

[drdu in reply to Whippit]

Good luck with your chemo, Annie.

Love,

Eileen xx

[Hidden]

Now that's funny Annie .. Margaret's attitude is catching obviously! Love Tina x x

[Whippit in reply to Hidden]

Margaret is a wonderful character and she's on my Star List as are you and many others. xxx

[ginger69]

Lovely ladies,

Let us all hope that we all find some 'treasure ' or 'golden dust' in our soil ....whether it be earthy, pebbly, or ericaceous, there is beauty everywhere, if we dare to look!

I am facing my 2nd line therapy as I have recurred in my para aortic lymph nodes, so waiting for treatment options. I know that none of us are aware our timing on earth, but I classified myself as lucky, I think of many people who have mental illness, and who are trapped inside their bodies and have a life of sheer hell! We live each day with perhaps anxiety, but can muster a good laugh and perhaps with our differential attitude to life, can make the most of every situation and somehow it is like having a serenity knowing that we are not in control.

I classify myself as a gutsy, independent woman with attitude and living with cancer, not fighting .....but accepting of the condition, and am so glad that I have met many strong women who are 'staying the course' and by enabling and empowering ourselves with knowledge of our subject we are stronger.

I was told that ovarian ladies are of a different breed to other conditions, and I am glad to say that I totally agree!!!!

We have each other for comfort and I take great pleasure in that.

Janette xx

[Whippit in reply to ginger69]

Loved your post. Good luck with your 2nd lot of treatment. xxx

[citrine in reply to ginger69]

All true Janette. I have friends with debilitating diseases and I would never want to swap places with them.

Good luck with your second line treatment.

Love Mary xx

[Hidden in reply to ginger69]

Lovely post Janette. Good luck with the treatment.

[drdu in reply to ginger69]

Good luck, Janette.

Love,

Eileen xx

[Hidden]

Personally I wouldn't use any term but there are words (or terms) that annoy me more.

1) Positive -as if people who die weren't positive enough ) I don't think so.

2) Survivor--in a way I am a survivor over five years down the line and on 3rd chemo. (but I wouldn't use this either)

3) Sufferer-yes I have suffered with cancer and chemo for that matter.

(but still wouldn't describe myself as one) still smiling

4) Chronic disease--Nope if it was a chronic disease, people with cancer wouldn't be taken off treatment for a better quality of life because treatment in some cases has lasting side effects (so who is kidding who?))

We see many people with a chronic disease that can hardly walk etc but still have treatment ( in my opinion rightly so )

5) NED I am not that either, (but a good word if you are)

I am a person who happens to have cancer ( not had )

Who am I ? The person I've always been "ME" ( but I do have a name )

Sending you my best wishes love x G x

[Laurie277]

Thank you all for all the responses! I am pleased that I wasn't alone in my sentiments with regard the 's' words and also a bit surprised at the strength of the feelings behind some of the comments: I really thought that I was being obtuse when I was saying to the CNS and MacMillian workers that I wasn't a 'survivor'- the faces that were pulled!! Maybe those who are well like the terms?!? Especially for those of you who are having treatments for recurrence, I wish you well; your outlooks on life have been taken on board and some if you hVe made me laugh Thank you all again for the feedback! Love, an intelligent, determined, happy young woman (who just so happens to have OC) x

[Hidden in reply to Laurie277]

Thank you also for you lovely uplifting post love x G x

[JacJac]

Hi All, There is nothing I can really add but wanted to add my voice to the high level of positivity that abounds from this post and every other one. However we all describe ourselves is really unimportant. What we have in common is so very clear and that is a Positive attitude. We happen to have cancer but with out doubt we all intend to live life to the full whilst we can, added with kindness, love and compassion. This is an attitude that everyone should adopt. It makes a much happier approach to life. Thinking of you all and wishing everyone the best. x JacJack

[Whippit in reply to JacJac]

You've mentioned something JacJack that has been on my mind for ages. It's how the word 'cancer' affects people. It does seem to bring out the best human qualities of kindness, love and compassion. They say by 2020 1 in 2 people will get cancer in some form. Whilst that's an awful statistic it might make for a better, humbler and more cohesive society. But I digress.

Thanks Laurie for the blog. That clearly brought out the best in us! love Annie

[Rebecki93]

Just reading through all of your posts and comments on here, I have so much respect for every single one of you. To have gone through such a horrible, horrible thing (and for many the journey is not over), and to still be so positive and upbeat is admirable. I wish all of you a healthy recovery, good luck with any treatment and I hope one day you can all stick two fingers up to this horrible disease xxxx