The One Show and that annoying talk of being "All Clear".

I haven’t posted for ages but those that know me know it is a phrase that always gets me angry. There is not such as state as being “All Clear”.

The most that can honestly be said is that the tests did not detect cancer cells. This may be because the number of cells is too small to be detectable, the sampling methods did not pick up samples that included cancerous cells, or the limitations of the tests and equipment we have at present.

I have just posted a complaint on the BBC website but I expect it won’t make any impact on the inevitable BBC broadcasting about breast cancer next month.

I think people should be told the truth even if it makes them feel uncomfortable or frightens them a little. It is a worthwhile cost of the chance to save more women from dying of untreated secondary breast cancer.

Nobody told me about secondary breast cancer when my primary treatment finished: all I was told about was local and regional recurrence. I went straight to secondaries without any further breast involvement and had symptoms for ages without knowing what was wrong with me. I wouldn’t want that to happen to anyone else.

Hi

Totally agree, I still cringe when a colleague said to me just after the end of treatment “so when do you get the all clear then?” and she meant it. I said “sorry but there’s no such thing as the all clear, it’s a myth” and her face dropped before she took refuge in another glass of plonk!

With BC and Protate Cancer there are a handful of cases e.g. very early tiny DCIS which can be described as cured but generally, and we know it, there is NO cure … yet and you’re right, people need to hear uncomfortable truths after all we have to with that as well as other people’s denial.

D

Hi Holey, I can’t stand the programme so missed this…yes there is no all clear for breast cancer…my brother-in-laws Mum had a local recurrence of bc recently more than twenty five years after her primary diagnosis…in fact I think it’s nearer the thirty years mark.

I agree with all the above too. People are always asking me if I am cured…drives me potty…then the next line is usually “Oh but you look so well”…Have they got xray eyes coz where I am standing there is no way to tell that I am riddled with the b***Y disease. Love to all Val (Scottishlass)

Hello Holeybones…

I suspect we are in for a pile of similar remarks over the next couple of months, when many of the real issues surrounding breast cancer will be shrouded in a pink blanket.

I am really glad to see a post from you and have been thinking of you. I hope you are still doing OK.

Jenny
x

Oh Holeybones - you are SO right!

If there’s one piece of journalese that is like fingenails down a blackboard for me it’s the one you’ve mentioned, the ‘all-clear’.

When will they (meaning the media, the public, anyone, everyone), get the message that there is NO SUCH THING.

No-one, not even doctors, has a crystal ball and can tell what the future might an individual bring in terms of cancer. This disease is notoriously fickle and no-one, but no-one, can accurately predict its course. A scan is just a ‘snapshot’ of you on a particular day, not confirmation of everlasting good health.

When people ask how I am I tend to reply with either ‘So far, so good’, or ‘Currently beating back the flames again’, depending on my mood. If people tell me I’m looking well (and I usually do), I tell them I’ve come realise that how I look (and to some extent how I feel) bear no relation to how I actually AM.

Never watch the ‘One Show’. I don’t think that there are many television programmes likely to offer a balanced, intelligent, non-sensationalist approach to diseases such as ours. It would require a series of programmes all at the standard of the old-style Horizon offerings to come close to what is needed to educate the world at large (even assuming you could make them sit and watch it) and TV these days goes for lowest common denominator stuff so much of the time. Ditto the Press. Even the so-called ‘broadsheets’ do a lot of dumbing down these days.

X to you all

S

PS Anyone seen my avatar? It’s in my details, but has vanished from all my posts…

Last week I read an article in this month’s Good Housekeeping magazine which included interviews with Trisha Goddard, Amanda Mealing and Jenni Murray. The whole thing made me cringe then fume and what’s worse is that the editor explains in her editorial that she has had breast cancer diagnosis and wanted to make this feature article accurate!

They used the term ‘all clear’ and gave confusing information. On top of that Trisha said that she went power walking after her chemo and implied it was a case of mind over matter. Great for her she could do that but everyone is different. My blood pressure drops to my boots and getting to the loo in the first few days makes me cling to walls with dizziness.

I think the whole thing was trying to paint a rosy picture (literally pink tinted) view of breast cancer as something that could be conquered once and for all, that the treatment was tricky but with a bit of will power you would get up and about like a superwoman and that things like sentinel node biopsies were readily available for everyone etc etc.

No wonder so many family and friends have been saying to me I never realised how difficult and long the treatment was etc. The very worst thing is living with uncertainty all the time and never having the words ‘all clear’.

Elinda

So pleased that I’m not the only one who gets annoyed by “all clear”!

I’m obviously fairly fortunate in that I have outlived median life expectancy after a diagnosis of secondary breast cancer,but am becoming frailer.My bones are full of bone metastases hence the nickname I chose for myself. The textbooks say that bone metastases seldom go below the knees or below the elbows but mine go down to toes and fingertips. I had a hip replacement a few years ago when one hips was so full of holes that it was about to fracture.I had lung metastases at the time of initial diagnosis but they disappeared apparently (or maybe it was an incorrect diagnosis) and I have another type of secondary and further health problems caused by cancer treatment.

I had only a very small lumpectomy, never went through any local or regional recurrence and have had a fairly good head of hair almost throughout. So, because I have few physical signs of having been through cancer treatment, lots of people react as if I must only have had a fairly mild kind of breast cancer.They can’t believe I’m terminally ill and will die when I run out of chemotherapy options.

The general public believe the battle against breast cancer has been won for most people and that for the most part, charitable donations are merely spent on improving our physical appearance!

I hate October.

Will let you know when I receive a reply from the BBC.

Holey.

Hi Bahons2 and Holeybones, Thank you for puting in words what I think! What I also notice is that “friends” I have had for years don’t even bother to phone me to ask how things ate going anymore. I find it is a one-sided effort on my part to keep in touch. Two of our closest friends particularly upset me but not keeping in touch. Honestly I get more support from this site than any long term friends. I sometimes think because I have survived so long they are bored with the whole thing…either that or it upsets them too much…I cannot understand them at times. One friend said a while ago when she badly cut her hand “Oh why does it always happen to me?”…Later on that evening I was fuming…has she any idea what it is to wake up and remember that you have to go for your chemo that day etc…Oh thanks I have had yet another rant…sorry love to all Val (Scottishlass)

Scottishlass,

I know exactly what you mean about old friends that you thought would be friends forever, suddenly dropping you when you are terminal. I remember lots of contact and support when I was going through primary treatment because people could say lots of optimistic things to me e.g.

“you’re a fighter and you will beat this”
“you are doing so well and it must be your positive mental attitude”
“breast cancer isn’t a life sentence any more”

The truth is that a positive mental attitude can help, but you also need a lot of luck.Nobody should be told to “pull themselves together” because if they can’t cope, it should be accepted that they need emotional support.

At the time of both primary and secondary diagnosis, it helped me to keep busy and to be doing as much as possible for myself when it came to researching benefits, form filling etc. I remember having to tell a Macmillan nurse “I have breast cancer and not brain damage” when she tried to do too much for me. We now get on very well and she knows how to behave with me, but I did need to say it.

Last summer, I went to a barbeque party arranged for everyone in our road (if you accepted the invitation, you also agreed to bring along a salad or dessert). This gave me the opportunity to introduce myself to neighbours I didn’t know, who’d perhaps seen me struggling to get in or out of my car on occasions or perhaps seen ambulances outside the house, but didn’t know what to say to me. They then knew my problems but were reassured I still had a sense of humour and most of the time wanted to talk about anything but my cancer. Several gave me their contact details and did subsequently give some real help.

Yes you do need to find new friends.

Just because we have needs, doesn’t mean we can’t help other people on our good days (particularly with less physical things) and this can give a network of new friends.

Holeybones

Thanks for your post Holeybones. It is good to hear I am not alone with this problem. I hope the neighbours rally round now that they have met you…not toooo much though coz a bit of space is nice too. I too like helping others even although I have BC myself. Everyone around seems to have ther own set of problems but I cannot get it into my head why they closest friends we have keep a wide berth. We still see them for meals etc and have not fallen out but is is just the lack of communication that gets to me. We pop in to see them but it appears it is too much of an effort for them to do likewise. They seem to wait for us to make the first move. Very frustating. I am still “ME” and try to get on with my life as normally as possible and still take pleasure in the simple things like walking on the beach or baking or trying out a new recipe. I am getting on with my life as normally as I can and certainly don’t dwell on BC all the time. I often forget infact and overdo things. Take care. love Val (Scottishlass)…also suffering from holeybones!

Hi Scottishlass

Where are you from in Scotland, I live in Dunfermline, Fife. I too have one particular friend that last spoke to me in May last year. What’s even more surprising is that she does voluntary work for the Maggies Centre.

I’ve just come to the conclusion that’s it’s not worth bothering about. I’m not particulary angry with her, I have enough support from other friends and family which is really good.

I’m also sick of the media, the thing that really riles me is when you read an article that goes on about cures or breakthroughs in breast cancer but fails to report on which breast cancer it is etc The public sometime just link us all to the one drugs but as we all know that is just not the case.

Diane

Hi folks,

I thought I was the only one who read the Good Housekeeping article and thought what a load of bulls**t and from people who should know better. Good to know I’m not alone. Like Elinda, I found the most annoying aspect was the inference that the side effects of chemo could be overcome with the right attitude and if you can’t you’re somehow not trying hard enough. I don’t believe for one minute these people didn’t have bad days like everyone else. I do think they are massaging their own egos. The positive spin should have been balanced with a light dose of reality and I’ve written to the magazine to say so. I have found genuine practical help hard to come by during my treatment over the last 5 months. I think this type of article makes it that much harder for people to even ask for help in case people think they are inadequate.

Jan

This is what is so annoying. When there is talk of ‘breakthroughs’ and ‘new drugs’ etc. there should also be explanations informing that breast cancer is not ‘one’ disease but a very complex and diverse disease which is consequently difficult to treat. But Joe Public just thinks BC is BC and if you catch it early enough, you will be OK.

In the same vein, (or not - for those of us who wonder how on earth the blood actually manages to travel round our veinously challenged bodies) there are some who can get through chemo with the minimum of trouble and side-effects (especially if it is first-line treatment - they may feel differently by their third or fourth different chemo…) but they don’t explain that there are people who physically can’t tolerate chemotherapy. It is not their fault, but the press stories suggest that they are wimps. I must admit I am thinking of a few friends in particular here, who are dead now, but struggled terribly and were so ill on their chemos - no ‘quality of life’ to quote a well-worn phrase. I would love the chemo celebs of this world to explain to them how they should have breezed through it all and kept smiling.

Jenny

Perhaps better articles for magazines or topics for shows would be how to help your friends when they have cancer. I think I’ll write to Good Housekeeping and suggest it. It could be practical stuff as well as emotional stuff and in relation to both primary and secondary cancer (the latter isn’t discussed nearly enough).
Okay it won’t make an entirely fluffy pink spread but as Jan says there needs to be a balance.
Celebrities should be much more careful what they say particularly for large magazine spreads and say they’ll only do the spread if what is reported is accurate as we all know things can be printed out of context.
Elinda

Hello Everyone,
I am new to this site and have enjoyed reading many of the posts and have learned a lot from them. I was diagnosed three and a half years ago and had a mastectomy. Since then I have been taking Arimidex with no significant side effects. In July I was told I had secondaries in lymph nodes and it was only then that I was told there was no ‘all clear’ with BC. This came as quite a shock to me and my daughters who had been with me to all appointments. Seems a lot of people need to be educated on this issue.

I saw Amanda Mealing being interviewed the other day (who stars in Holby City) and she was diagnosed with breast cancer a few years back and had a mastectomy. She actually said on the programme that she had been given the ‘all clear’ by her consultant!
She does quite a bit of PR for breast cancer charities etc and I was really surprised she said this. Perhaps some people worry that unless they say that they won’t be offered work? I don’t know it doesn’t make any sense to me.

Elinda x

Hi Everyone

Just my half pen’eth. Don’t forget that these celebs who do amazing things while having treatments, chemo etc. don’t have to get involved with the everyday things of life. Don’t have to take the kids to school, wash, iron, cook, clean etc. someone else does that for them.
I think many of us could nose-bounce round the block if we could then put equal strain on all parts in a darkened room for the rest of the day.

Jan xx