Explaining to people

Public Archive
1

After two ops, good clear margins from the smallish lump, 3/13 nodes showing small to very small deposits but others clear and now Chemo followed by rads to cross the ‘Ts’ and dot the ‘Is’, I have made a possible grave error in judgement.

I was asked by friends this weekend if my wife still had BC or whether it was all gone and I began by saying that the surgeon was confident that the cancer has been surgically removed and the signs are good for the future. The chemo and rads are apparently there to make sure any rogue cels are blitzed. However, this left a gap…until the chemo etc is over and they carry out scans we obviously can’t say anything with certainty. Even if it then shows all clear, does my wife ‘have’ BC or 'has ‘BC’ or is simply clear of cancer (adding the caveat…‘for now’)???

We have both been feeling quite positive about the future after such a horrid time, but this weekend apart from being asked the above, we saw many of her family friends that we haven’t seen since the diagnosis and my wife mentioned, when the inevitable q’s were asked, (in a quite matter of fact way) that they had got it all this time and that next time she’d at least know what was coming…this completely floored me as it seemed like she is now thinking it is going to come back. I didn’t want to ask her about this and spoil the weekend and now I won’t see her until next weekend (she is taking a well deserved break with her parents). It didn’t help when her sister said “well at least this time(!) around they caught it fairly early, so next time…”

All of a sudden I am now thinking the worst and preparing myself for this eternal sword of Damocles.

How do you refer to it after the treatment is all over? and am i trying to be too optimistic and my wife being realistic???

I have well and truely fallen out of the saddle this weekend.

2

meant to say 3/16 nodes

3

Richard “how you refer to it after the treatment is over” is a really interesting question, to which I suspect there will be a wide range of answers, all equally valid. You are right to feel positive about the future - your wife’s cancer was found early, she had minimal node involvement, and has had the full range of treatment to give her the best possible chance of a not having a recurrence.

But having said that recurrence is always a possibility and I suspect many women who have had successful treatment for primary bc would like friends and family to know that it will be a concern for them for many years, so that it gives some clues to the emotional difficulties we have to live with. This may be what your wife was trying to do. Others may take a very sunny view that the cancer has gone, and get on with their lives without looking back - we are all different.

In terms of describing cancer - I’m not sure there is a universally accepted term. In your wife’s position, I think I would say something along the lines of “I am currently cancer free, and hope to stay that way”. I personally think “remission” applies only to secondary cancer that is inactive, but others may disagree and apply it to successfully treated primary cancers. I use the term NED (No Evidence of Disease) in preference to “remission”, and hope soon to fall into that category if my latest treatment has been successful.

You are also very close to treatment now - I hope you will find the balance between justified optimism and realism easier as time goes on.

finty xx

4

Hi Richard,
sorry you’ve had a tricky moment again. I’m really interested in your post cos I have struggled very much with this - I was diagnosed feb 2010, had 2 ops, including 3/14 lymph nodes pos, had chemo and rads. My cancer was grade 1 and er+.
My initial approach at end of treatment was to say to people - “its not really possible to say how I am cos they don’t do scans - I’m feeling fine but then again I was when I was diagnosed so thats no measure , we hope I’ll stay fine but lots of women don’t”. My OH was saying “she had cancer and its gone”!
I am now 6 months post treatment and just finishing 3 months counselling - and I discovered something amazing to me -that I was keeping the door of the possibility of further cancer open as a kind of insurance , so that I never got to feel as comfortable in my skin as I did before, cos then (I thought) if it comes back I’ll be ready. Well now I realise I don’t need to keep that door open in the same way now - I coped before and I’ll cope again if I have to. So for now I am saying “I had cancer in 2010 and we are working on the basis its gone until we know otherwise”
Its been interesting, and I really shifted in the last month when I got the 1st all clear mammo.
very best wishes to you and your wife, Nicola

5

An interesting question, but a difficult one to answer.

At the moment I just say something like “I’m having treatment for cancer”, which kind of side-steps the question “do you have cancer or not?” The surgeon explained that although she took out all the cancer, no surgeon would say they’ve removed every single cell, which is why I’m having chemo and rads and herceptin and hormones. So I’m going to have to think about how I’d answer that question, as quite frankly, I don’t know!

6

Yes, I agree with Choccie it is a hard question. I have actually tried to answer this one twice already, and found it impossible to word an answer properly!
My husband tells everyone that the cancer has been dealt with through the operation and that the chemo and rads are just an insurance policy, but my own feelings about it are more complex than that, because as Choccie says, there is no guarantee that the surgeon has caught all of it. I also know that chemo and rads although increasing my longer term survival chances will never take them above 90% at best (not sure my husband wants to think about the other 10%) - this of course varies considerably from person to person based on age, type/stage of cancer etc. - does your wife have this information for her cancer yet? If not, when you have a meeting with the oncologist to discuss this it will give you a clearer picture of what you might be facing.
Good luck to both of you x

7

Thanks to everyone and the replies.

I never really expected a straight answer as I was up for hours last night running through it.

Over the last few weeks I had relaxed quite a lot after the turmoil of the last few months, as the uncertainty of the results from the ops has now passed and we know what we were dealing with. The oncologist seems very positive from the point of view of the chemo and rads in that they are really just to give my wife the best possible chance of getting rid of any remaining cells (if there are any). The trouble is I guess I have buried my head in the sand without realising it.

All I kept on thinking (until this weekend)is if all goes according to plan she’ll be finished with all the treatments by the end of August (4 more cycles of FEC and then 5 wks of rads), her hair will be back by Christmas and then in 2012 we can move on and properly start our married life together(go on honeymoon etc)…I had the attitude that this is just a hiccup in her/our lives and we can return to ‘normal’. I know it never will be truely normal, but I figured that in time we’d get back to, near as damn it, usual business.

I like the term NED and also “had cancer last year and we are working on the basis its gone until we know otherwise”. My wife is a naturally look at the negative side type of person so if it doesn’t happen it’s a bonus and therefore is not disappointed if it does (comes with being Scottish :-)totally the opposite of me which is why I guess I have taken a knock this last few days.

Thanks again for all your help girls, it can’t be easy giving advice to OHs when you are dealing with this at the sharp pointy end yourselves. It is much appreciated.

You are all an inspiration to me in getting training for the 18 mile mountain marathon I’m hopefully doing for BCC and Maggies later this year.

cheers

Richard

8

Richard, you and your wife will learn what normal is once active treatment is over, it sure as hell won’t be what it used to be before diagnosis. But there WILL be a new normal eventually. That may well include what might look like hyperchondria (or is it hyPOchondria? I can’t figure out the etymology of the word) where every ache or pain is instantly examined for a link to cancer, -perhaps a bit of devil-may-care-life’s-too-short-to-sweat-the-small-stuff attitude, maybe irrational tears and dark moments, but you’ll get to learn what normal is eventually.

Best of luck, and it’s lovely to see you supporting your wife.

9

Yeh, I echo choicemuffin - well done for your support - so many men just b****r off into the sunset - I won’t pretend the rest of chemo will be easy cos it won’t- but you know what its just days of feeling not quite yourself and then it lifts/passes. I am about a year exactly ahead of your wife and I felt pretty OK ish by Xmas and feel really good and back to myself now, my Onc says 6 months post treatment is normal time to convalesce in - just started training again myself - bit chilly in Newcastle in the mornings still tho!
bw Nicola

10

Hi Richard

Just a suggestion. If your wife tends towards the negative, maybe at some time in the future she (or both of you) would get something out of a visit to somewhere like the Penny Brohn Centre, which can be a very positive and inspiring place. Maybe a good time would be just after the treatment has finished, as this can be a time that some people find surprisingly difficult. They are expecting to feel great that it’s all over, but instead when the security blanket of treatment has gone and you refocus towards the future, it can all become a bit much.

Also, choccie is completely right - you will find a new normal and things will get much easier with time.

finty xx

11

Hi Richard

I tend to say ‘I am a cancer survivor’ which sounds positive but avoids saying ‘cured’ or anything close… and it’s seven years since my operation (I was 2/15 nodes, and have been NED all that time).

Your wife may seem negative but it is very early days for her. I felt drastically let down by my body as I had always been healthy, and after such a shock it was difficult to regain any faith in my own future, despite the fact that its well know survival is very good for limited node involvement. People being super positive and saying ‘I am sure you will be fine’ tend to grate and I tended to over-react the other way. That doesn’t mean you don’t like to hear it, so keep on being ‘realistically optimistic’ as one poster once put it.

And well done for all the support you are giving her

best wishes
Sarah

12

Hi Richard,

as the others have said, you will definitely find a ‘new normal’. I am four years on - if the subject comes up among people who don’t know, I just say I was treated for breast cancer in 2007 and leave it at that. If they want to know more I will be honest and say no-one can say for certain what will happen in the future, that breast cancer can reappear after many years, but that I hope I am cured.

13

I am still in the chemo stage, with lots to get through, but i am still feeling the same about how i will think once i’m through it as i did at the start:

This is that once its done - its done.

I have for the past 41 years walked around with cancer. Cancer was 100% going to happen. I only know this because i have it, prior to this i didn’t know and lived a carefree life. Once i’ve got through this, and they give me whatever guarantees they can, i’m going to put it behind me. I’m not going to explain to people NED or anything else.

This is for 2 reasons,
1 is ‘cos i can’t be ar*ed.
The second is because everyone could be put in this category, no-one like me (no history, risk, etc) has any reason to believe they have it but many unfortunately will - so NED could be applied to many blissfully ignorant people (like me).
Thirdly, i’m not going thru’ all of this just to sit waiting for it to come back.

I will keep an eye on myself and if it does raise its head again I will do what i can to sort it again.

So - when people ask how i am i will say “fine thanks” just like i used to. How beautifully boring.

14

staycalm - great attitude! I say the same thing to anyone that doesn’t know I have cancer - just “I’m fine”, sometimes even an “I’m really well thanks” - then always a quick change of subject by turning the question back on them. Then I often allow myself a wry smile as I get 15 minutes on their dreadful hayfever or whatever, and remind myself that it isn’t a competition! But when people ask specifically about the progress of my cancer (as they tend to if you have secondaries, usually accompanied by the dreaded concerned head tilt) I hope shortly to be able to say NED.

finty xx

15

Have been reading this thread with such interest.
When I was diagnosed 16 months ago, I only told people if the topic happened to come up. But I have a good friend who is agast if, when shes with me, I dont take every opportunity to tell all and sundry bout my ‘illness’!!!
She just couldnt see that I didnt want to have it taking over all of my life if it wasnt nessesary.(But she does like to recount all her (minor)ailments on a regular basis with EVERYONE) But still wouldnt be without her!!!
I tend to say ‘Im fine’ to all but the closest enquiries-so much easier and less stressful for me!

16

i tink your wife is being realistic and explaining it in her own way prob helps her to deal with it,saying that i still feel she has great chance of keeping it away but as we all know this disease is a devil that can take many forms and is unpredictable i am not a negative person but am a realist and i have expressed this with all my loved ones and my 3 darling children (23,20,17 yrs)it hurts to be open but i cant give them false hope but do try to be positive but real but my situation is so different from your wife.it is hard to answer questions some days easier than others to cope with the enquiries,i wish your wife all the best am sure she will do great she is lucky to have such a loving hubby x

17

Finty - on the head tilt, have you ever read Julia Darling’s poem -how to talk to the ill - might not have the title exactly right bit its similar. Its WONDERFUL and I should carry around copies to hand out!! Julia had a website which is still up and running and you might find it there - she was a very feisty BC patient and didn’t let anyone get away with anything - those of us in the north east especially loved her and miss her now she’s died from BC.
best Nicola

18

Richard I think your question raises interesting issues about the philosophy of cancer if I can put it that way.

I was dx in June 2009. Had 6 months of neo adjuvant chemotherapy (FEC then Taxol) and spent the best part of a year wearing a wig. Had mastectomy with expander implant (6cm tumour + all nodes removed, 16/18 cancerous), then rads, and finally my expander implant was replaced by a silicone one last June. Oh and I had an oophorectomy earlier this year.

This time last year coming to the end of rads I spent weeks if not months feeling anxious and a bit confused about the way forward, how to describe myself to others, how I really felt about myself and so on. Obviously I have a highish risk of recurrence but have now managed to reach a place where having wrestled with the issues I can say and sincerely feel I’ve HAD cancer and “as far as I know I’m well”. Unlike your wife I’m a glass half full person (though some b**** did keep trying to knock over my glass !) which has helped enormously. But I did wonder for a long time whether I’d ever feel normal again. Luckily I do, though I warn you it’s not uncommon after treatment to feel a bit traumatised by looking back at what you’ve gone through even if at the time you’d coped well (as I had) with all the treatment side effects.

It sounds trite but you and your wife will begin if you haven’t already to find more joy in the small things of life, building this up to a deeper feeling of ease with the world. I sincerely wish you both the very best for the future.

19

I can identify with so much of what is written here, around 9 months after the heavy treatment (still on Tamoxifen)I was directed to an article by Dr Peter Harvey - “After the treatment finishes, then what?” which I found incredibly helpful. It really helped me to understand that I was far from alone in the strange post treatment insecurity. I copied it for friends and family to read so that they could understand a bit of where I am coming from.

cancercounselling.org.uk/northsouth/extra4.nsf/WebResClient/1761049276601BD68025735B00604834/FILE/article3.pdf?openElement

20

You are all truly brilliant and all of what you have said has helped me through a difficult few days, (particularly after feeling quite alone whilst my wife enjoys a very well deserved break with friends and family in the Lakes for a week – leaving me to build the new garden ready for ‘she who will be obeyed’ to take over the planting as her spring/summer project).

Despite being a half empty glass person, her reasoning behind it is quite rational, as I always set myself up for a fall/disappointment when it goes wrong, she is nicely surprised when it goes right and is completely mentally prepared when it goes wrong.

My OH surprises me at every turn with her ‘get on with it’ attitude despite some negative feelings leaking out every now and again. She is quite self conscious but despite nearly all the hair having gone now, she only wears a hat/head scarf if her head gets cold. After losing her long gorgeous mane we have found that she really suits short hair and to be honest now that the hair no longer detracts from her face, I can report that she is indeed a stunningly beautiful woman and I actually prefer the short hair look :-). She said the other day that with the hair the way it is (Sinead O’Connor with patches missing!) she looks like a cancer victim and maybe that is her way of getting people to avoid asking her how she is, as they can see she is under the side effects of the chemo.

The question of what happens next and how you refer to your cancer status after treatment is deep for us, as the correct ‘label’ that we can believe in will give her/both of us confidence in getting to the next phase of our lives…children. Now on the wrong side of our mid thirties (just by a slim margin :-0) since diagnosis, we have to put off having children for at least a couple of years. Whilst a subject very close to our hearts, our priority is making sure we have done everything to beat this thing into the ground. The kids quandary is something we just have to wait for, but the feeling of what if it comes back just as we are on an even keel again about to try for a family, or what if it comes back during pregnancy, or what if it comes back and the kid(s) are so young etc etc, is something that I know is on my mind and I am sure it is on hers too (she doesn’t like to talk about what is going on inside her head, and it is difficult to know if the nit-picking is the chemo-mood, her being her, or something else that is worrying her . She refuses to see counsellors as she is deeply suspicious of anyone who tries to get inside her head and suggest how she must be feeling - I pity the poor souls who have tried it before…).

I know you can’t go round thinking what if… or when will it come back, as you’ll never move on and I certainly do not want to have that as our default setting for the ‘new normal’

My wife is the best thing to ever happen to me and I wouldn’t think for a millisecond about running out on her (despite being driven up the wall occasionally) and don’t understand blokes who can do that. We are experiencing getting used to each other’s little habits just like any other newly married couple who haven’t lived together for much time prior to getting married, except we have other ugly issues thrown into the pot to keep it exciting!! If we can get through this we can get through the next 60+ years I am sure.

I am loving all the fighting spirits you all seem to have, especially Staycalm, I can’t thank you all enough and give you all a big virtual hug.

Interestingly I have noticed that all the replies seem to come from ladies who have been diagnosed and not the friends and family of those who have. It would be interesting to see OH’s perspectives.

Richard