Granny…I love your post and agree with it, but i am at a very different stage and prognosis to Janera and Kate, for instance.However, I DO get bloody angry when I see adverts or articles describing me ( it’s how I feel and I’m not saying everyone, or anyone else will agree) as a cancer ‘victim’…i certainly don’t feel that.I have days when i feel blue, i have days when i am sad/scared/frightened and some days which have lots of…‘what ifs??’…I also have days where people tell me I am a total inspiration (huh?? I am just getting on with the business of living, what do they want me to do?)…but most of my days, I don’t have cancer…in that, it is not my waking thought, or fear.I have days, such as last Thursday when i was at my nursery, building snowmen and having a snowball fight, where life is simply fabulous and where i CAN forget, without even trying, that I have cancer. And I DO understand about life being full of cancer, as both of my parents died of the b’stard disease.And maybe that’s why I am able to have 'no-cancer’days?? I feel sad that i got the thing, but awfully glad to be able to have such days in the middle of all the uncertainty!
I have just realsied that I should make it clear that I don’t have secondaries and count my blessings for that, so I hope I haven’t offended anyone with my views!
Like Sass I’m sorry too to disagree particularly when what I disagree with has been said from the heart with the best of intentions…but disagreement and debate is surely what makes having cancer part of real life. I was irritated by your original post Maureen which suggested everyone had days on which they ‘don’t have cancer’ That is an assumption.
There are I feel such pressures on people with cancer to conform to particular images of what it is to be a ‘good’ cancer patient: ‘live life to the full’ (what the f*** does that mean?), ‘be brave’ ‘protect your loved ones’ ‘count your blessings’, 'do what you can not what you can’t, blah de blah…and that whole genre alienates me…but perhaps I should stick to my blog in saying so.
I’ll be having a good day today I think but its not a ‘no cancer’ day.
Jane
My thoughts on this thread were that (most) of us who use this forum who are stage 4 are all too aware that sooner or later, sometime in the near or distant future we are all going to be very ill and will die from this disease. I know I’m incredibly lucky to still have a good quality of life 5 years on from my secondaries diagnosis. I never, never take this for granted and on the last count I’ve now lost 20 + friends to breast cancer. These are people I’ve met, 3 friends lived locally, if I count email friends I dread to think how many there are. I’m not living in denial, far from it and I’m not a pink or fluffy person but it’s because of those friends I’ve lost I’m forever conscious that these good days will eventually end. And that’s the reason I really do try and enjoy my life now, this minute. And I never forget so many of us have had very little respite from this horrible bl**dy illness and every day is pain.
Belinda…x
Hi
I have metastatic cancer in lots of weird places but thankfully no vital organs and I don’t really have symptoms now. I was diagnosed during an exploratory op after months of tests during which I became pretty ill, couldn’t eat etc, when they found out that I was pretty much splattered with cancer. As they didn’t know it was BC, they were very shocked and told me there wasn’t much that could be done.
Then path came back and it turned out to be BC- everyone was really pleased! I was very confused!!
Basically, having BC instead of an unknown primary allowed me to access treatments, in my case so far, hormonal treatments that could extend my life (equally, could have been well-established chemo regimes). I know I’ll have to face the day again and that really scares me but for now, I look for the good in most situations, I’m glad I’m still here- in fact, I almost can’t believe it.
Cancer gets on my wick sometimes and I really try to have cancer free days just to give my mind a break from it- so I’m with you Maureen.
We all have our stories and thoughts and beliefs and my heart goes out when I read some posts here, Kate especially (you’re a brave lady and your kids are very real heroes). But this website is for all. If you don’t like what you read, move on and leave those who choose to share a bit of brightness do it. For anyone newly diagnosed with secondary cancer desperately looking for some cheer and hope, Maureen’s post is a gift.
Anne
Hi Anne you’ve put into words my thoughts exactly…I’m very aware my cheerier posts must get on some people’s nerves at times but if we do have good moments I still think it’s good to share them, especially with anyone newly diagnosed stage 4. I can remember all too well desperately searching the internet for some hope in 2003. I wasn’t looking for a cure I just wanted to find others who had been around a while after their diagnosis.
We all seem to find our own way of living with this blasted disease.
What suits me would drive others potty.
Take Care All…x
Oh my goodness
I am not a misery guts, of course I have good day and good hours and good half days, of course its nice to take hope from those who have gone before me. I have I reckon the darkest of dark humours about having cnacer…Cancer made me a shallower person by Miriam Engelberg is one of my favourite cancer books…and read what she has to say about how we all say when someone dies: ‘I can’t believe it, she was so full of life’. No one ever says: ‘She was such a lack lustre person’ but perhaps some of you might say that of me…would prefer it to ‘brave and isnpirational’.
For the record I am nowhere near as ill as say Kate or Debs who have also responded on this thread…I just have had the misfortune of my strange presnetation for breast cnacer hiting me in uneexpected places which do affect my daily life (not to mention the relentlessness of chemotherapy which I find hard) Also I happen to be ordinary and realistic about what my prospects are.
Interesting if Maureen’s original post had been written by someone with primary breast cancer I suspect the outrage from everyone about how primaries don’t understand sceondaries would have occurred. The uncomfortable truth is that we are no more likely to agree with others in simlar positions than we are with people in different positions.
And Anne…I have been promting debate on these forums for 5 years (My first ever post was called ‘You must think positive’ and was about doing precisely not that.)and won’t be leaving this side of the grave. But nor will I be having cancer free days.
Jane
Hi Jane I don’t have the Engelberg book but I have seen some of her drawings and I loved them. Especially the one you’ve mentioned in your post.
And if this thread had been written by someone with primaries I will be honest and admit I would have been a bit miffed.
Belinda…x
I guess my response to this is - I do have cancer everyday, can’t really forget about it or the impact it is having on my body, my family and my finances…
cathyx
I think I would have been too! (in response to Belinda and Jane’s comments about primaries)
By the way, at the risk of depressing everyone (!) I sometimes find that other things scare me much more than my own illness. Excuse me and don’t read any further if you don’t want to be exposed to one of my random tangents!
I don’t have kids but I do worry about what kids will have to experience in this mad crazy world.
I don’t want this beautiful world to be changed forever by climate change.
I don’t want economic climate to affect the care and treatment that people will receive in the future.
I don’t want loads of people to lose jobs and face possibly the worst poverty we have seen in a long time.
I don’t like to think that while we are having access to the treatments that we have, others in different parts of the world die just because treatment or food costing a couple of quid wasn’t available…
That’s just some of it… there’s loads more if you want. See, I’m not a happy, cheery person really!! The big picture just scares me a bit more. Sorry… I’ll go back to my padded cell now…
Anne x
Hi all,
interesting to see how many of us read different things in Maureen’s original post. For the record, I can never forget I have cancer, but on my better days I do manage to put it out of my mind and do something nice with my kids. For me this means a no cancer day. On my bad days I can’t not think about it and I certainly couldn’t do anything to “make memories”. But…when I was dx with secondaries in June 2007 I was told to not wait to “put my affairs” in order as the average survival after dx was 6 months. Now, 20 months later, I’m still here, I still have good days, even more than I had when I was on chemo and I have just been told that my wbc and rbc have improved tremendously and my liver function has stabilised since I started Femara, which they didn’t expect to see until next month if ever. So, even though I know I will get worse eventually and yes, it will get me in the end, for now I am quite happy to have no cancer days for as long as I can. Saying this, it’s very easy to see why Kate, Jane and Debs, to mention a few, can’t. There are so many of us who are further on this road than I am. God Jane, this is one of the times I wish I had your way with words! I can’t seem to get across what I want to say!
Peggy x
By the way, my last post wasn’t meant to be disrespectful to anyone. I know my situation is different because I don’t have kids. If I did, they WOULD be my beautiful world and my family would be so precious and I wouldn’t think twice about the things I listed. If it’s offensive let me know and I’ll remove it.
Anne x
PS I also don’t want to cause offence to everyone who is at a much more difficult stage in their disease.
Peggy, you wrote that beautifully. Anne
I have found this thread quite fascinating, nothing like a bit of argy bargy to lift the spirits! I was wondering about potential for other “I don’t have…” type days. How about “I’m not married every day!” or “I don’t have any shortage of money” days (oops, note to BCC moderator, I’m only joking)? Unfortunately I think I have left it a bit late for the former (woeful lack of desire) and it’s a bit premature for the latter (gas bills to pay).
As I mentioned on another thread, I went to a BCC living with secondaries day earlier this week. It was notable the variety of people, some with very few symptoms, others (like me!) showing and feeling quite severe symptoms - and of course those with the most pronounced symptoms would not be able to attend.
I find I am able to empathise with those with few symptoms, I was there once, but still find there is one area that really hits my buttons and gets me going and that is around whether one is able to hold down a job - I had to retire through ill health. I sometimes feel others think I’m a slacker… I suspect we all have our sensitivities and have to try hard to be tolerant sometimes! I am amazed at how open and tolerant our discussions are, and that is part of what makes this forum so supportive.
Anyway, I am off for a holiday this evening for half-term with my husband, daughter and friend, hope others enjoy the next week as much as possible in the circs.
Lottie
No Anne I don’t find your post in the least offensive.
I also don’t have children
I also know my personal little tragedy is just that…sad for me and the people who care for me…but not a big deal in the overal schemo of life.
A month before my misdiagnosis in early 2003 I went on the anti war demonstrtaion about the threatened invasion of Iraq. The Iraq war has been with me through my diagnosis, tretament, rediagnois…and thousands and thousands of lives destroyed by it. I hope I might live to see troop removal.
As Lottie says a good argie bargie is good for the spirit. Enjoy your hols.
I have many thoughts on the usefulness of the divide between ‘primaries’ and ‘secondaries’ but these must be for another thread.
Jane
Hi Maureen
I simply interpreted your post to mean that you’d had a “good” day and seemed pleased to be able to exercise some control by not having your friends’ travel plans revolve around you and thereby single you out as the cancer “victim”/“patient”. I find that you get so many people fussing over you and trying to help, but they inadvertantly rob you of the little control you have in your life by making decisions for you (often the wrong ones!).
When you lead a life governed by treatment and compartamentalised into three weekly cycles it’s easy to feel a loss of control and it’s hard to forget about the sodding cancer which seems to be calling the shots. Oh to plan a holiday or meet friends without strategic military planning involving the timing of medication, hospital appointments, prediction of how you feel physically or the potential outcome of scans, GPS location of bathrooms within a 20 metre radius of my location at any given point in time etc. So, generally, I do what I can on “good” days, and don’t beat myself up on the “bad” days. However, sometimes I find that I have done loads on a bad day, and done bu88er all on good day! That’s MY choice!
As my counsellor once said “with all that you’re having to deal with if you can get ANY break from the cancer monologue in your head and have 5 minutes happines, then that is good for you.” Your mantra may not work for everyone for all the reasons mentioned, but enjoy it whilst it does the job for YOU.
xxx
I don’t have cancer everyday although at the moment i am two thirds of the way though a course of Taxotere so I have more cancer days than not, however I very much hope that once this chemo is over and ive had my mastectomy/recon op that I can get back to having more ‘non cancer’ days and whilst I respect the feelings of those who are not able to have these days, I want to hear about people like me who are living without pain and discomfort. It gives me hope and thats one of things I want from this forum. I do feel that if this forum is always about the negative aspects of secondandary BC then it will just bring me down and maybe it would be best to not look at it anymore.
Also I don’t like the new format, I don’t think it’s as user friendly as before.
Yours positively
Linda
I hope you do not mind me barging in on a secondary thread. I have cancer everyday but not in the same way as everyone with secondaries has. As a woman with a primary dx i would not presume to know what it is like to have secondaries.However, It is never far from my mind most days. I know how tenuous ‘NED’ is. I am realistic in the fact with my dx I have a 50% chance of reoccurance and a 30% that bc could kill me. I am aware that I could fall either side of these stats and complacancy is a luxery I cannot afford.
i’m getting used to the new format but it does take ages to find the thread that I’m looking for. This secondary part of the forum is the only one that hasn’t been subdivided and although it has been discussed amongst us, I can not recall reaading anything from a moderator about subdividing this forum. It would make more sense. Have I missed a reply from a moderator - it is quite liekly that I have as I can’t always remember what thread I’m active on!!
i think it is true for all parts of the forum, the most active participants are the ones with active disease or treatment so it will always be lopsided as often people only post whe they have a problem hence why it can seem so negative at times. Saying that I find there are some very humourous replies on most threads here due to the wonderful nature of the contributors.
It is sad when people say they won’t look at the secondary forum in case it depresses them but there are a lot of people who post who are working and feel well despite their secondaries as well as people who are struggling with their secondaries but still manage to get out and do things.
we are here to support each other or so i understood it so that will work out that sometimes people need support as they are having a tough time and at other times people will post good news and want to share those precious moments.
Living with secondaries can be very lonely and is misunderstood by a lot of people. We should all be pulling together over this and be demanding more input into the help we are given when we are diagnosed with secondaries and are living our lives with it.
Now too sleepy to continue with whatever I was ramblling on about but you’ve got a few days break from me and my ramblings so hopefully can come bck to the forums to find some good news as well as to be there for people who are not faring so well.
Wishing you some good days or hours and will tell you about any adventure i have in Kent!!!
Katex
Hi
Just had a thought. Even if BCC doesn’t add categories, maybe we could do so through our threads.
Same as Maureen put on her chirpy heading, we could also have threads that start off with the opposite. When we are at a time when cancer is very much with us every day, we should start a thread saying so. also, we should have threads saying things like ‘what I have learned through my cancer’, ‘why I hate cancer’ etc.
Metastatic cancer is scary and there is no way any of us can hide from that fact, but we all go through different emotions and stages. I know I would flit between the different threads but I also know at times, I would choose not to read some threads just yet or maybe not on days when I was feeling particularly lost in the uncertainty we all face. As Kate says, we’re all in the same big boat really.
Love to you all on Valentine’s Day xxx
I would have thought the clue was in the heading ‘Living with secondary breast cancer’ Or maybe my remark belongs in the ‘Gormless’ thread, which incidentally was meant to be light-hearted. The moderator had a complaint and we got a telling-off. Seems we can’t win.
I have had secs for 4 years, read the threads but only posted when members died. Also I had never used a computer and thought well, I really enjoy reading posts and poor Ian has work to do so I better start
I have continued to travel abroad, but because of my treatment can now only travel within the European countries as I need to be confident should cancer invade my holiday I will get full medical treatment. I can assure you France and Spain are brilliant for us.
My cancer is beginning to affect me at a daily level so I have to plan around it. I would hate you all to think that I dwell on my illness, I don’t it dwells in me. Seems to like to have a wander around and spread out where ever it takes its fancy. A bit like a squatter, it has all the rights and I have none. I am very fortunate never having suffered depression but some members suffer terribly especially when on chemo.
I really don’t want this to turn into a pick on whoever says what thread. As we all respond to treatments in a different way, we really should be able to express ourselves.
We are going to have a brilliant Valentines Day so wish the same to you all.
Love and peace.
Debsxxx