And another thought (yes, still awake!).
I do find I am torn between wanting to forget I have cancer - get on with work normally, party a bit, socialise etc without everyone feeling they have to ask after my health with ‘that’ look (you know, the concerned, sympathetic, caring gaze). At the same time I sometimes want to stand on the table and shout ‘why are you talking to me about all this trivia - don’t you know I’m going to die of cancer!!!’ For example -I’m in the middle of a 5 year planning project in work. How interested am I in that!
I agree manon…we want it all. Ruth Picardie’s partner, Matt Seaton, writes about this contradiction in his reflection on Ruth’s death.
I think this society is so uncomfortable talking about serious illness and death that it has become impossible to have ordinary conversations about them. I hate those underlined words and looks. I want people to be upfront and say How’s the cancer? That would be a start.
Hi Jane and Manon
I agree totally with you. I wish I always felt comfortable when I’m with other people. Sometimes I wish they would ask straight up, ‘How’s the cancer?’. I know some people are nervous but I don’t like to detect it when they ask how I am, because that nervousness reminds me that I have the cancer and I may actually have been having a nice time up until then! Also, I know exactly the feeling of wanting to scream at people that I have metastatic BC when I get pushed in the street or just because I feel like doing so!
What I also find difficult is meeting new people/friends. While they are having a jolly old time, saying ‘we should do this etc’, I find myself thinking ‘Hmmm… at what point do I tell them that I have some limitations and can’t join in because I have secondary BC?’ Cheerful, eh?
Having said that, I was really brave and upfront four months ago and met a lovely man who is getting to be a pretty big part of my life. Who would have thought it?! Life is strange!
Anne xx
PS I too work in an environment when you tend to plan for 4 years or so. Thankfully, I’m now allowed to have a more supportive role so I don’t actually feel I have to plan how I will run projects for that length of time.
Last Friday while having chemo I sat next to a guy I had sat next to before. I remembered he was an undertaker, chatting away he said it was his last treatment. I have had a question I have wanted to ask for ages so I thought well it’s now or never.
“Are you an”
'yes"
I wonder if you can tell me do they still have the levy on transport through each county?"
'no love that no longer applies. Are you planning a trip?
We both knew what I was talking about, I want to be cremated back up north but didn’t want to lumber Ian with a big bill. The woman across the ward said I was far too negative how could I beat it with that attitude. I thought I had done really well had not said the words, Undertaker, Death, Funeral, Body.
Any way I am know completely satisfied Ian can fulfill my wishes when the time comes.
Love Debsxxx
Debs,
That sounds a really positive question and if it puts your mind at rest from a niggling worry then it certainly isn’t negative like the woman said!I do find people can be so afraid of facing or mentioning the inevitable and for me I find it far more negative not to be allowed to voice my fears,concerns and even hopes for my death,funeral etc. as you end up bottling things up and still worrying about them,particularly now I’m alone. I watched the film the Bucket List last night and found it uplifting though sad but found myself getting upset with the thought of who will want to be with me when I do eventually die as I actually find many friends more supportive and closer than my actual family. I guess that will resolve itself - I have moments when I think I’ve madly got to sort everything out and other times when I think I’ll leave it to another day! I don’t think being in total denial of the inevitable would help me at all and if there’s so much pressure to “beat” this disease like a competition what’s it saying about those who don’t make it. I’m in a good position at the moment as my last scan was clear but as the next one dawns next week I guess the fear inside is rising in case it’s no longer clear.I also worry as to how much or little to tell close friends or family - my sister was blithely saying yesterday that at least I know the chemo works for me and I can just go back on it - not so simple as we know - it worked at that time but who knows next time and yet I don’t want to sound negative either just realistic as that is how I deal with things.
Sorry - rant over - your post stirred up emotions Debs - keep them coming!
Take care,
Anne
Am glad to hear you’ve found a lovely man and been able to be upfront about your illness to him.
I’m reaching the point,(9months after my ex-husband left) I feel I would like to have at the very least a male companion just to share simple things with but am very scared about when to “come clean” about my health situation without completely scaring someone off! I’ve been living with breast cancer for over 6 years and have come to accept it as part of my life and am not looking for a nursemaid but how do you explain that to someone without freaking them out - I don’t want to lie or withold stuff either!! Tricky!
Great story Debs… I reckon an undertaker makes a good chemotherapy companion…
Your post raises for me again the question of how we deal with differences within the ‘breast cancer community’ Sometimes it feels to me there is such a divide between those who want to talk reality with a dark humour and those who use the language of ‘beating’ cancer, ‘thinking positive’ etc. and such a lot of upset and misunderstanding all round when these issues are debated.
Hi
At the mo, I live opposite a funeral director so I’m aware with the coming and goings around me, if you know what I mean.
I’m a bit of a chameleon I think. With those who can cope, my ‘dark side’ comes out, with others I am happy to be lighter about things and sometimes protective of them. I wouldn’t say I think positive but I live my life as positively as I can.
I think I’ve worn myself out with my mad postings lately! Will check on here soon to see how the discussions are going but I’m going to have a break. Bye for now
Anne xx
Well I have recently joined a discussion group, some people I know, some not. I hate the feeling that those who I don’t know have been warned of my bc status. A ‘friend’ in the group, who didn’t bother to visit or send a car when I was ill - hence she earned the inverted commas, has suggested - as one of our number is moving to Edinbuirgh, - the subject of ‘the future’, - retirement, grandchildren etc. Now some of you may welcome this subject, I personally want to smack her in the gob for putting me in this position. I have debated whether to go or not. Ultimately I have decided to go and play it by ear, or speak only in the short term,
The simple truth is, if I discuss it in a forum like the discussion group, I will inevitably be tearful, and I’d really rather not! This is unlikely to be an opportuinity to educate without scene stealing from the woman that’s moving on.
I have had one male ‘friend’ (friends husband actually), asking ‘How’s the cancer’ and frankly I thought it was a huge invasion - I discuss it with friends and relatives at appropriate times, not any Tom or in his case Dick.
Personally I’d rather have the soulful look, than total indifference, and I’ve had both.
Sometimes I feel sorry for my poor friends…having to balance on a tightrope of knowing when and whether they have said the ‘right thing’. Most of my friends are, like me–in their 50s and early 60s, most reasonably well healed and looking forward to long baby boomer retirements…trips round the world etc. And sometimes when they chat to me about holidays and retirement plans yes I feel resentful and sometimes I cry but I’d hate to think people edited what they say because I’m there…I hate the ‘talking aboutism’ that accompanies illness. I prefer mistakes to silence, attempts to acknowledge rather than avoidance. I believe so passionately that the taboos around talking about death and dying need to be shaken up and smashed to pieces…or at least gently disrupted.
Can see both sides Celeste. If you feel like you want to smack her in the gob I would tell her (before you do it).
Personally I prefer it if people know about my secondary cancer. It takes the pressure off, as it colours everything I say or do.
Think Jane is right, as people dont know what to do for the best. The worst thing for me (like your mate) is when people just do not contact you or talk about it at all.However conversely I also hate it when people I hardly know start to discuss my prognosis.
Reading this thread with interest and particularly struck by Jane’s comment regarding the “talking aboutism” (which when I thought about it reading your post I totally thought I would feel the same re secondaries and do a little bit re primaries) and then reading Celeste’s question re her disussion group and “the future” I wanted to ask you secondaries ladies (and any other primary ladies who may have an idea)…
When DX (either with secs or primary) and reflecting now would you rather have
told everyone you ever knew and then firmly said to them “I will tell you what I want you/need you to know and please don’t ever speak about it unless I raise the subject” OR
told everyone as above and said "talk to me about it whenever, wherever etc the mood takes you (or you THINK it takes me) and don’t be afraid to discuss every horrid detail with me.
I ask because, as Jane says in her post, “I prefer mistakes to silence, attempts to acknowledge rather than avoidance” and on reflecting this post I tend to agree. I would rather people bumbled and fumbled their way through my illness (as I do) than say nothing and/or be awkward and I then never know what is in their hearts (which could be crass, wonderful or mediocre).
Hi…I may possibly be a lone voice here but apart from close family I don’t often disclose my illness with everyone/anyone. If anyone asks what I consider to be intrusive questions I tell them I’m fine and end anymore health questionnaire type probing. Can’t stand it, it really makes me cross. I am so much more than my diagnosis, I’m still me and wish to be treated as such. I’m quite a private person, always have been and I would feel the same if I had any other serious illness. I don’t want people to only automatically think !!CANCER, CANCER, CANCER!! every time they see me. Not because I’m in denial, far from it, I live with cancer but while I’m well I won’t give too much of my precious time over to my diagnosis and I don’t wish others to. Knowing one day things will inevitably change makes it all the more important for me to keep it in the background right now. I even took my own advice this week and I’m spending much less time on cancer sites including this one. (I still have cancer, haven’t forgotten but used to spend far too many hours on bc sites.)
Your post reminded me of something I did at primary diagnosis in 2003. At that time I was new in a managerial teaching job and had just set up a new teacher training course. I was the only full time member of teaching staff, I’d interviewed all the 35 new intake…the course was going brilliantly, started in mid September and the group bonded together and with me. And then late October and cancer and time off for appointments and tests and scans and coincidentally one of my students, a young man in his early 20s came weeping to me cause his dad had terminal stomach cancer. I had decided to do neo adjuvant chemo and to keep working as much as I could but I’d had to suddenly change timetables and employ new staff for cover. The rumours started and so one day a couple of weeks after my diagnosis I told the whole group together that I had breast cancer etc etc… I was quite emotional and so were they but I’m glad I did it…for the rest of that academic year I did my best…though was absent during surgery and for the second lot of chemo I had after surgery. That group were great…I never regretted telling them, and many of them were just brilliant at saying the ‘right thing’. It all feels such a long tome ago now…I was a cancer virgin then compared to the (wise?) old woman I am now. I know some of that group will shed a tear when news of my eventual death gets through the grapevine…and in that memory is some solace and for me (I don’t have children so maybe thats why leaving something for the next generation in a different way is important) a sense of solidarity and continuity with the future.
I know there is a debate about the boundaries of self disclosure and professionalism…I didn’t give the group blow by blow accounts …I too am actually very private…but at that time and in that place it was the right thing for me to do.
Back again! When I was diagnosed, my family was overwhelmed, not only with my news but with some other very, very sad family news that happened at the same time. Up until then, I had seen myself as the family member who was strong in a crisis (there had been quite a few, the details of which I wouldn’t discuss here) and tried to allow everyone, particularly the young ones to be honest what they may have been feeling and what may have confused them.
When I was diagnosed, I thought that I couldn’t be there for everyone any more. So, what I told everyone (family and friends), is to feel that they could ask me anything and I would answer them as honestly as I was able. With recently diagnosed friends (primary BC), I have also let them speak as honestly as they wish. At times, I realise that while they should live in hope that the cancer has gone from their bodies, mine is here to stay.
I’d sooner discuss things so that there is no murky mystery. I have what I have but I am still the same old me. I always was fairly open about life’s ups and downs and why should I change now. With regard to being cheerful, I’ve been told that I was anyway.
I admit that I may oversell the ‘must enjoy life’ bit but if that means that I’ve been able to have some real quality times with them, then that’s great. On that one, I’m still very much with Maureen’s initial post that ‘cancer-free’ days are a lovely gift.
I think that this thread has been great because it reminds me very much that while we all have the same disease that unites us, we thankfully still retain our own personalities and individuality. It’s really interesting to see how everyone deals with it and it also makes me realise that I need to respect that we are all different.
Regarding work, I told my immediate colleagues everything (poor things!) and then let the grapevine do its bit.
In response to Ostrich’s post, I was mainly a 2 with a bit of 1 thrown in on occasion!
Anne xx
This is such an interesting discussion and certainly highlights how individually we deal with this. There is no right or wrong way. It has to be our way. My main circles of contact are my fellow church members, the customers I meet on a day to day basis running my nursery, and close friends (many of whom are Indian). Three very different groups.
To the latter the BIG C is still not a word that is spoken out loud amongst many of them. They want to know how I am but are not sure how to ask. I am very happy to help them ‘phrase their questions’.
To my customers many of whom have become friends over the years, they have known at times what I am going through. On our nursery we collect Marsden League of Friends. Many come to view our quite famous collection of Bonsai and they pay for the privilege!!! and it goes to the Marsden. So the question of cancer frequently comes up in conversations. I am very up front and have had some wonderful conversations with some of them who are either going through it themselves or have close family who are.
With my church ‘family’ their enquiries are of loving concern and they have been a great support to us over the years. It is very moving when others within that group have been affected by cancer in some way, that they will come and seek me out to talk about it.
I think each of these groups of people are very sensitive to my feelings but they know it is o.k. to talk about cancer with me.
Interestingly when I was first dx my husband’s immediate reaction was not to tell others - how he has changed :). He too is willing to talk to anyone who raises the subject.
Have been trying to catch up with this thread (having been away for a few days) - a very interesting debate. I would class myself as a definite “2” most of the time, Ostrich, but there are occasions when I reserve the right to be a “1”. I would always prefer people to talk though even if they say the “wrong” thing, than be silent and ignore it, or even worse avoid me. Sometimes though I just feel too tired with it all to support people through their attempts to express themselves.
Coming back to Maureen’s original post, I can’t claim to have any days that are truly “cancer-free” but I am lucky enough to have days when the impact on my life from the cancer is minimal and I can maintain my independence and do what I want to do with no additional support from others. That’s really important to me. I consider myself both a very independent and private person - certainly I find it hard to ask for help from others though I am getting better at accepting it when offered - and that means I can really resent people making allowances or “fussing”. Very hard at times on those around me who are trying to “support” and indeed have the best of intentions. One of my greatest fears for the future is not dying/death, but that growing reliance on others as I lose my independence. So those moments/hours/days when I can be “cancer-free” in what I do and how people treat me, are really precious particularly as I know as time goes by, those moments will become less and less frequent.
However what I would find impossible to tolerate is anyone telling me when I should have one of those moments/hours/days or indicating they thought I could or should have more of them.
Sorry - not sure my ramblings make sense except to me! K
I am afraid I have cancer every day. Much as I would wish I didn’t, I find myself tired, breathless, unfit, drawn and often in pain with it. The best I can hope for is a few hours when I go to my gospel choir and I can forget all that is going on by becomming immersed in learning a new part or routine.
If I could have a cancer free day I would transport myself into the mountains on a beautiful sunny day with powder soft snow. I would also gift myself some new knees and I guess a fit body instead of this knackered old thing. It’s a nice thought.
As for talking about cancer, I think I do too much of it. I have lived with cancer for over six years now and have not had a day when it has been out of my mind, or my conversation. I talk about anything and everything to do with cancer and am completely open about it - despite trying to live in denial most of the time! Some of the conversations are really interesting at an academic level (for example, I was talking to an acquantance the other day about the difference between assisted suicide and being given a fatal amount of pain relieving drugs). But I guess it goes with the territory, and with my open approach, that for many the first thing they think about when they see me is “cancer” and for those who feel brave enough to ask about it (yes, I think it does require either a certain amount of courage, trust or crassness) I am often asked the meaningful eyed “how ARE you” question, which irritates me, even though most of the time it is well meaning.
I too have resorted to “I’m fine” if I really don’t want to talk about it when asked how things are going. But often I will be completely honest - I will tell them that the cancer has spread again, that I am on a new chemotherapy, that I have a lot of pain in my hip. Then it gets awkward, though, because there is rarely a happy ending to these conversations. The best endings might be a hug - but sometimes this isn’t appropriate because I don’t know the person that well. And sometimes I find this so annoying because I really want to tell them that all will be well. If they offer me the platitudes - the “Oh but there is so much coming out about breast cancer every day” and the “just look at Kylie” stuff I will correct them. But it is hard seeing the disappointment and disillusionment in their eyes. I want them to see the honest truth about cancer. I don’t want to hurt them. It’s hard to get it right.
Have found this thread much more interesting than I thought it was going to be. Thanks for starting it. Now, back to the mountain…
I have been very fortunate in that I have really had very few symptons from my secondary dignosis apart from having the pleural effusion drained last March and tiredness and nausea last September when I had further spread. I have been able to coninue life much as normal and although I think of my cancer every day it has not ruled my life.
This is gradually changing and it is the feeling of having to make concessions to cancer that infuriates me. I have always had a full and busy life , I was running up until the pleural effusion took over and can no longer do so. I still walk but miss so much including the social side of running. I am on weekly Taxol, the effects of which are also limiting, no skiing this year and my ability to work and do a job I love constrained by treatment and tiredness.
I do try however to keep a veneer of normality, firstly as I am quite a private person and do not find it easy to admit weakness and also because my family need me to be me insofar as that is possible.
I am always aware of the contradiction, I think Manon put her finger on it, sometimes I really don’t want to discuss it, I just want to have a laugh and gossip with friends, at other times I feel cross and abandoned that no one has asked how I am!! Can’t win!
As an essentially upbeat person I still have down days and have yet to work out how to ask for support at those times.
Kathryn
Lot of issues here. My friends know they can bring it up with me anytime, and that is no problem, they can put their foot in it as much as they like, they are friends. However, I do not want to be defined by it, so when I join a new group I’d rather it wasn’t the first thing that people are told about me. Ok the elephant may be in the room, but I know over time it will gradually diminish and disappear. The problem really exists with acquaintances and people I do not know. I feel I have the right to choose my time of telling, if that’s what I want to do. I have experienced some voyeurism, and no I don’t want to be put on the spot with it.
I suppose I believe that I’ve gone through all I have, the slice, poison and burn of all the treatments for life. Not life talking about cancer. When I can forget it I do. When I am sucessful in this, I don’t want some idiot who I don’t know bringing it up.
I’m a great believer in the goodness of people, ans I’d rather believe that people liked me, found me interesting etc etc. rather than by the fact that I have a disease.
I’m sure there is loads more to say on this, but I’m being called.