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Don't know whether to laugh or cry!

76 REPLIES 76
suecco
Member

Re: Don't know whether to laugh or cry!

Hi

Didnt watch the interview and probably would of turned over when trisha goddard came on anyway. It was in the newspapers the next day and again I turned the page, dont want to hear how easy chemo and rads are, thats not my experience, and Ive been at it a bit longer than her! Im not against finding a way to get through this hellish experience, we all have our things, individual things that help individual people, mines visiting these sites when I feel the need for support, advice or a read up or to gather some info.

Think the earlier comment on, a book, being on the way is spot on, I would rather come here and get real experiences and support from real women, not someone who is oiling the press coverage wheel. All I can say is Jog on trisha

Just my humble opinion!

Sue x

jools
Member

Re: Don't know whether to laugh or cry!

Every person is different -for me Trisha's comments "Women tell me they don't want to sit in support groups talking about headscarves. They don't want aromatherapy. ".were deeply upsetting. I found my support groups and forums a lifeline. I found I could talk more in groups and forums than I did to my family. It certainly was more theraputic than bottling it all up or upsetting my family''. I had aromotherapy. It again Helped hugely. Just one hour a week when I could escape from the hell that my life had turned into. I could not have run during chemo. FEC made me constantly sick and TAX made every single bone in my body ache
But again every one is different. I had a secondary diagnose almost at the same time as my primary one. But before I had my secondary diagnose I thought that cancer would occupy 8 months or so and then be totally back to normal. How wrong i was.
I wish someone would show a true picture of what living with cancer is truly like.

Jools

zotam
Member

Re: Don't know whether to laugh or cry!

One thing I learned from Lisa having breast cancer is that most people who don't have this disease in their family think that there is just one type of cancer and so if one person can cope, as this Trisha Goddard seems to, by running or whatever she does, then all women should be the same.
I worked with lots of younger women and girls and I was surprised just how ignorant they are about breast cancer. Its quite scary.
Lisa said to me one day, " If one more person mentions Kylie Minogue to me I swear I will clobber them!" She had a totally different type of cancer ..had a lumpectomy straight away and then all the expensive and immediate treatment. One day when we had been seen by a Dr while we were still sat in a horrid, dark, narrow corridor and opposite the loo with people going in and out, Lisa said, "I wonder how Kylie coped with this?" !
I am not saying that BC isn't as devastating for everyone whoever they are but it makes me cross that some people feel that they are inadequate because they don't seem to be coping as well. Everyone is different with different types of cancer and at various stages. Lisa coped really well and was doing so well despite feeling that she wasn't doing as well as Kylie but then of course it decided to hit her in the brain. Not Trisha, Kylie or whoever could cope with that and certainly couldn't run anywhere!
All women coping with this awful disease, however they cope, are heroes to me. Don't care if they run or not!!
Sue x

custard
Member

Re: Don't know whether to laugh or cry!

Hi all,
I dont post too much theses days but do come in regularly and read the forums. I saw this thread and was quite relieved I wasnt the only one who felt a bit annoyed about the "Trish" GM TV interview. It isnt so much what she said but I'm annoyed by the reaction people who I know and their reaction to the interview. My supervisor came in that morning telling me how running to and from Rads was what I should have done (didnt like to point out I had a 50 mile round trip). I went home and watched the interview on the net and although I commend anyone who can keep going I was a bit disturbed that Trisha herself didnt think about the message she was sending out to none BC patients. I am sure I wasnt the only person who that day was made to feel like they were pulling a fast one at how tired they actually felt thoughout treatment.
I was "lucky" and I use that term loosley in the fact that I didnt have the chemo route but the thought of running even now makes me cringe, turning over in bed can still hurt the WLE boob.
I really admire women who carry on with their previous life styles and that includes Trisha but I do feel she could have perhaps thought a little bit of the impression she was giving to the rest of the none BC community.
S x

Tommo
Member

Re: Don't know whether to laugh or cry!

I have to agree with all the people who have posted that Trisha has done no favours to those of us who gone through all this. She writes a column in our local paper every week (she lives in my area) and every week she manages to bring her Breast Cancer in to it, even when the column is about a totally different subject. She had written all about her jogging to radiotherapy etc in this column many weeks ago. She has also referred to "this Breast Cancer mullarkey". The members of the support I belong to were so angry and upset, we actually wrote to her asking that she consider the traumas others go through before writing in that fashion. She has clearly not paid any attention.

belinda
Member

Re: Don't know whether to laugh or cry!

Hi lol2705, my understanding is that breast cancer is one of the cancers you don't get given an all clear after 5 years. There are many women on the secondaries forum that had many years before their secondaries were diagnosed, 15+ years for some..xx

lol2705
Member

Re: Don't know whether to laugh or cry!

I thought that it was called remission. Then if after 5 years there was no spread that was when you were given the "all clear" is this right?

debsincornwall
Member

Re: Don't know whether to laugh or cry!

I had never understood the strong feelings that are provoked by the pink October campaign as for many years I have always done various charity events to raise money for bc when diagnosed with secondaries 4/12 years ago Ian and I decided to get married. It was a very beautiful romantic occasion and for our sins pink ties were worn by the blokes and pink flowers for the ladies. We knew why we picked pink it was to say this disease is going to rob us of our 'happy ever after' but it will not spoil our today. Today I agree with the frustration Jane and Ostrich feel, fluffy pink does trivialize what is a killer disease an ugly cruel disease. Fluffy makes us think of soft gentle, pink makes us think of new beautiful baby girls celebration and champagne. These are the feelings I have for pink and I don't want to upset any of those lovely people that do the raising money events for bc. I would just like us all to try and change things and maybe shout "It is pink but it is not fluffy, it can be fatal"
Trisha did mention doing some sort of campaign for breast cancer I hope she does because if she puts her mind to it she can and will make a difference.
My school motto was I Should I Can I Will. So maybe I should do more as well.

Love Debsxxx

ostrich
Member

Re: Don't know whether to laugh or cry!

Here here Jane.

I think the competitiveness is so that people without cancer can carry on living without thinking too much about what they may have to face IF they were unfortunate enough to get it. Strange though how the "C" word makes people blanche however it usually only transient before they go back to thinking that its not that bad - after all - BC is pink and fluffy so it can't be that tough, can it? (HA!)

JaneRA
Member

Re: Don't know whether to laugh or cry!

In fairness to Trisha Goddard she does, after her 'all clear' statement say; "For now the cancer has gone" so I think that does indicate that she knows it might come back. Many women with breast cancer do still use the 'all clear' words even when thy know its not technically the case and never can be.

I don't really care whether Goddard or anyone else wants to run or try to run while they are having treatment for breast acncer. I guess if you run its quite interesting and/or 'inspirational' to know that it is possible. Others of us may be interested to know whether people continue to work while on tretament, or have sex, or do their knitting or or or...

What I object to is the tone of nmoral superiority which accompanies Goddard's interview and her belittling and stereortyping of other women's expereinces. Sadly I think that moral superiority is embedded in the culture of dealng with cancer (well I can't speak for other cancers but it certainly applies to breast cancer). I mentioned on another thread that I think there's a competitiveness among people with cancer to show that you're doing well, being brave, fighting, being an inspiration, being special etc. Trisha Goddard exemplifies that competiteveness beautifully.....no wonder she gets the press coverage. There is also that insidious message that somehow if you do something special like running that you are helping to cure your cancer, you are being an active figther not merely a 'passive victim' That whole culture is bullshit and stinks, but sadly I think its hard to avoid. (I guess we all set others up as our 'inspiration'..but we shouldn't we really shouldn't...not anyone.) Breast cancer is not a battle or a competition.

I think Jane Tomlinson was very different to Trisha Goddard. Though the media wrote trash about her read anything she has written herself and I think you'll find a compassionate woman, struggling with cancer and treatments as we all (well most of us)do..who just happenned to run as her own way of living with cancer. Problem is that running and physical exercise occupy a very special place in the mythology of 'beating cancer' (eating does as well.)

And why oh why do people imitate the tabloids and turn the celebrities into first name best friends? Why is it always Trisha and Kylie rather than Trisha Goddard and Kylie Minogue? Thankfully no one wrote about Jenni's cancer...they properly called her Jenni Murray.

Jane

cherub
Member

Re: Don't know whether to laugh or cry!

I thought nothing of going out and walking over 10 miles at a stretch before BC. During some of the treatment I felt very fortunate if I could manage more than one circuit of the local park; quite often my OH had to take me there in the car and put me on a bench where I could look out at the sea as I was too out of breath to do anything else. I finished up having to take up yoga as my knee joints were so bad after Taxotere. 3 weeks after my last Taxotere cycle we had a walk in one of the coastal villages here and I could not get breath walking up the hill from the seafront - believe me, it was very scary.

I realise Trisha has had a breakdown in the past (I had one at the age of 20 after my mother's death) and I know through my own experience with this that it can make you become a more emotionally strong person. If I feel myself getting depressed I know what to do to deal with it as I would never want to go on anti-depressants again after having a second bad bout of depression 15 years ago in my early 30s. However, I always view Trisha in the same light as the odious Jeremy Kyle - whatever experience anyone on the show has had, they've been there, had it worse or know somebody else who was a drug addict/alcoholic/whatever - it's what gets them viewers and makes them money. It was after all Trisha who introduced British TV to the sensationalist delights of lie detectors and DNA testing. I do wonder if she is going through a state of euphoria at the moment and hope things don't come crashing down round her ears emotionally.

Cat
Member

Re: Don't know whether to laugh or cry!

RoadRunner, I think what you say about levels of fitness is extremely relevant to this issue. We each respond in our own way and use our pre-bc fitness level as a guide, probably. I think you're fantastic to continue with running, but it's part of who you are. I've always been a walker, and I continue with that, although as I get more tired from the chemo, I do a little less, but I still walk as much as I can.

Trisha, all power to her for being herslf and running; but I'm still deeply concerned as I've already commented and am in agreement with many of the others, that the way in which she presented this information was insensitive in the extreme, and also incredibly negative to healthcare providers and other men and women with bc.

And to pick up on what others have said, Marilyn most recently, the 'all clear' is indeed misleading and nonsense. I guess that Trisha hasn't done appropriate research into bc or has ignored what her doctors have told her.

Marilf
Member

Re: Don't know whether to laugh or cry!

Agree with everyone's comments about the way Trisha's interviews have (a) trivialised our own experiences, (b)made us feel bad if we're sick and/or too weak to jog during treatment and (c) trashed her health care providers. That would be bad enough, but she's also stateing she's been given the "all-clear", as if BC is just a few months of unpleasantness that goes away after we've sailed through our "easy" treatments. While of course I hope she doesn't discover any BC mets, it's yet another trivialisation -- and very misleading -- for those of us whose BC has spread, is now incurable/terminal and means we're on often unpleasant treatments forever.

Yes, I'm still waiting for the day a celeb with BC uses her/his fame & media-magnetism to highlight the truth about this terrible disease.

Marilyn x

RoadRunner
Member

Re: Don't know whether to laugh or cry!

OK, I know I'm inviting a heap of negative comments to come raining down on me, but here goes:

Assuming that those of us who get BC are representative of the population as a whole, then it is fair also to assume that most women who get BC didn't take much exercise before dx. So the idea of suddenly starting an exercise regime during chemo is farcical. But for those of us who are fit going into this, it is entirely different.

The problem is, most of the support information is written for the average person, and not the fit person. I was immensly depressed by the BCC DVD about chemo, which featured a (male) runner who gave up running for the duration. It was only Jane Tomlinson's example that inspired me to continue. I thought, if she can run a marathon on chemo, I'm sure I can manage two or three miles. And I could, mostly. By the end of tax I was down to half a mile, but I was still running.

So I think it is important for people to know what is possible, given different levels of fitness to start with.

aroma
Member

Re: Don't know whether to laugh or cry!

dont get me started on the trisha saga !!!! iwas incensed with the flippant way she commented on the health professionals as well as us ordinary folk coping with our treatments ,the only running i did was to run away from the chemo unit in fear !!! it makes me so cross when these celebs spout rubbish like that ,yes i agree she has been through it but havnt we all and we are all heros in our own way and we cope because we have to !! would be better as you say to see us ordinanry folk coping with the everyday life we a ll lead . i think now i will just turn off the tv when these celebs come on ,bring on us everydasy people i say tell it like it really is !!lynn x

ForumMember
Member

Re: Don't know whether to laugh or cry!

Trisha does acknowledge the rough moments in the article above. It was how she got through it and seeing that she had a breakdown in 1994 perhaps she was just using what she had learned previously.

I remember some of the leaflets I had talking about exercise being good for fatigue, she just managed more than most - good for her.

I do identify her change of attitude and being more assertive, I've changed that way as well.

Wizz

belinda
Member

Re: Don't know whether to laugh or cry!

Hi Rach, I went back to the Daily Mail site today and there was a comment from a reader who said she'd told her 76 year old Nan how well Trisha had coped as her Nan was about to start rads. I think so many now will think chemo and rads are a walk in the park. 😞

rachy7
Member

Re: Don't know whether to laugh or cry!

It makes me b*****y angry ! We have all been through hell and if it was all as easy as Trisha says (exercise- the great cure all) would all be running about, full of energy whilst having chemo with a great smile on our faces even if we feel sick, fat and bald. Again, it is making me feel as a woman with Bc responsible for it !!!The yukky Americanised 'positivity cures you and if you are negative, you won't get better'. Jane Tomlinson did run marathons and raise money but she died ! Sorry to be so bitter but I am on a real downer today and smiley celebrities with BC are not helping.

Rach

belinda
Member

Re: Don't know whether to laugh or cry!

This interview with Trisha is from the Daily Mail..it explains a bit more about her treatment. Repeating myself here but it's not the running, all power to her and I hope she stays well but it's her thoughts on her fellow cancer patients and others which I find disappointing.

How I beat breast cancer - by TV's Trisha GoddardBy Trisha Goddard
Last updated at 9:51 PM on 29th November 2008

Every day on my talk show Trisha, I delve into the deepest misery of people's personal problems. But for the past year, I have been tackling my own demons.
The irony is that if I had not gone for a scan to improve my fitness I would never have found out about the disease that could have killed me.
My first inkling that something might not be right was in March this year when I went to a private hospital in Norwich for a scan on a running injury.
I was asked when I had last had a mammogram and realised it was seven years ago, so they booked me in to have one there and then.

I was a bit startled when the woman doing the scan asked me if I'd noticed any lumps in my left breast before. I hadn't, but had had lumps in the right one investigated before and they were nothing to worry about.
The scan had shown a lump, so the next step was a biopsy, which I had immediately.
It's vile. Apparently I was vicious and fired off so many questions that the doctor doing the biopsy gave me far more information than he needed to.
He finally told me I probably had breast cancer.
That was a terrible blow. It just so happened that I had an appointment with my psychotherapist later that day and I remember walking in looking like a dazed beast and telling him my news.
But I didn't tell my husband Peter and my girls, Billie, 18, and Madison, 13. I wanted to wait until I knew for sure - what if it was nothing? But my therapist convinced me I should tell Peter, and I did. He had his tears, of course. But he is a rock, emotionally.
Peter came with me to see the surgeon a few days later. I remember us driving there on a nice sunny day and I had the top down on my Jaguar XK8 convertible.
We were at traffic lights, the stereo was on and we were getting envious looks from other drivers as usual. I saw all these people looking at me and thinking, 'lucky cow'.
And I remember feeling really good but suddenly realising: 'Trisha, you are never going to feel like this again.'
In his consulting room the surgeon told me I had breast cancer, and I cried for about five seconds. Then it was a case of wiping my eyes and saying, 'Right, what are we going to do about this?'
He told me I would need an operation but didn't know if it would be a lumpectomy or a mastectomy.
Obviously, I wanted to get on with it as soon as possible and I was booked in for the next morning.
That night we told the girls. Billie was very tearful. She's far more emotional, like I used to be when I was younger.
Madi is very intellectual and fired questions at us. What would happen? When would we know more?
But I made it clear they shouldn't treat me any differently - I don't do victim - and they never have.
I told them to be pain-in-the-a*** teenagers, but they kept any worries they might have had to themselves. The only difference was that from then on Madi started running with me, which was a big change.
By 7.30am the next day I was in the nuclear oncology department at the Norfolk and Norwich NHS hospital, having dye injected into my breasts. And that was pretty bloody awful.

Not the hospital itself, but it was a grim experience with some of the other patients gawping and calling 'Trisha!' They were clearly wondering what I was doing there with a patient's gown on.
When I came round from the operation I didn't know what I was going to find - one breast, two breasts or none at all.
But I was lucky. They had caught the cancer early and it was only a lumpectomy - the removal of breast tissue for testing.
But a few days later I had to have a second operation because they had discovered a cancerous cell in my lymph nodes and I had to have them removed.
This time I was in far more pain. Unfortunately, I picked up an infection and had to have the wounds under my arms drained. That kept me confined to bed for five days - definitely not my idea of fun.
I resented my 50-year-old body then. Where is the fairness in it all, I wondered?
I couldn't help thinking about why it had happened to me, especially when I saw obese people standing outside the hospital smoking.
I now realise that whatever comes your way, you've got to deal with it.
The hospital nurses were just great but I did have days where I was really down because I couldn't go out running.
But Peter would come in and we did laps walking around the hospital. The nurses used to laugh at us and thought I was joking when I said: 'Bring me Brad Pitt and my running shoes.'
And running is what I tried to do as soon as I got out of hospital. I started power-walking in the snow near my Norfolk home, and then slowly but surely started running again - up to six miles.
My greatest inspiration when I was running in the rain and felt like curling up in the nettles and vomiting was the late Jane Tomlinson, the cancer campaigner, who ran so many marathons.
My doctors informed me that I shouldn't exercise like this but I was determined to prove them wrong. And I did. I ran every day.
The medical profession is very good at telling you what you can't do. But the biggest buzz I got during my recovery was when a very senior surgeon told me he'd learnt something from watching me.
Next came an 18-week course of chemotherapy, where powerful drugs, administered by injection, and in tablet form, destroy cancer cells.
It was afterwards that I discovered what a difficult time I had.

My surgeon told me I hold his record, and maybe the hospital's, for the most drainage of a wound. I had an infection the size of a tennis ball under my arm, but I was still doing my television show every day.
I had some very low moments during chemotherapy. How can I describe the pain? It's similar to chronic arthritis and you feel as if you're 103 years old.
Every connective tissue is screaming out and, one day, I could not stand up. I started panicking.
But then I remember being told how it helps to breathe deeply and slowly through pain. I was sceptical but I did breathing exercises for about ten minutes and then, thankfully, it started to work.
My physical symptoms included chronic diarrhoea and mouth and throat ulcers. My hair and eyelashes fell out and sometimes I'd be doing a piece to camera in my show and a producer would point out that my false eyelash had fallen off.
As for food, some days I'd just eat pretzels because I was too nauseous to eat anything else. My eyes got infected and very often there'd be tears streaming down my face.
But I'm sure the fact that I was fit before my cancer and continued to exercise helped me through it.
I couldn't find anyone approaching chemo and radiotherapy in the same way as me until I was contacted by someone from an American group called the Cancer Thrivers.
They said they supported people working out through chemo and radiotherapy and that I was doing the right thing.
I found a physiotherapist who helped me with an exercise programme. He advised me to cut back a bit and I reduced my runs to three miles and the amount of weights I was working out with.
But I still found the best cure for nausea was to do sit-up crunches with a 5kg weight on my chest! I knew exercise stimulates endorphins, and they in turn reduced my pain.
In the end I spent more time with my personal trainer and with my psychotherapist than all the medical professionals put together. I couldn't have beaten cancer without them.
There is a significant proportion of women in this country who are not being inspired by cancer charities. Women tell me they don't want to sit in support groups talking about headscarves. They don't want aromatherapy.
After my radiotherapy - which involves projecting high-energy X-rays on to the tumour or surgically inserting a radioactive substance close to it with the aim of destroying it - ended two months ago, we went to New York.

My husband and I were running in Central Park at a big charity event for breast cancer. I suddenly burst into floods of tears when Peter and I went into the Survivors' Tent.
I was thrilled to see they were selling running gear. I met people like me who ran daily, also going through chemotherapy and radiotherapy.
The incredible thing was, you couldn't tell who had breast cancer and who hadn't.
I much prefer the American approach to cancer, where sufferers help tackle cancer by striding out, getting fresh air and exercise. All of those things are great for low-grade depression, pain and nausea.
Even during chemotherapy I enjoyed going to work. But I did have to stop for two weeks when I was having the radiotherapy because the treatment was every morning and I couldn't do both.
That was the worst time imaginable. I'm the kind of person who really needs work as a release from everything else in life. I don't do slowing down. It's just not who I am.
Cancer has changed my attitude to life. I've stopped saving stuff for best. I found myself becoming more assertive and not sweating over the small things.
My family were at the cinema last week and children were talking during the film. The old me would have just huffed and puffed.
But I turned round and said to them: 'Will you be talking throughout the whole film or will you be coming up for air anytime soon?' I thought, where did that come from?
Despite the physical pain I have endured I never felt as if I was going to slip back over the edge mentally, as I did when I had my breakdown in 1994 and spent four months in a psychiatric ward.
One thing this cancer experience has shown me is how sane I am. If I did have a bad night, I'd take half a sleeping tablet because I know that lack of sleep is a big contributor to any mental problems.
Earlier this month I went back to my surgeon and I have been given the all-clear. I must have six monthly scans, but for now the cancer has gone.
Now I am going to take one day at a time and I know just how lucky I am to be with my loving family.

lyndu
Member

Re: Don't know whether to laugh or cry!

Thanks, Jane, for bringing up the statistics.
I'm afraid that when I get the comments about how treatable my breast cancer is "this time round" because treatment is so good now - I just remind people bluntly that more than 30 women die every day in the UK of bc. At my first diagnosis in 1991, it was just over one every half hour, now it's just over one an hour.
Better, but still not good enough.

Lyn

ostrich
Member

Re: Don't know whether to laugh or cry!

What always makes me want to scream and scream louder when I watch GMTV and celebs on there is that BC is portrayed as "pink and fluffy".

Where do you ever see lung cancer/bowel cancer/blood cancer etc as being pink and fluffy?

Campaigns for funding (tv or otherwise), ads to make you stop and think, vary according to the cancer except other than BC generally they are harsh, hardhitting and nasty. Charity events etc for BC are invariably "pink and fluffy". I am sure that the charities who use this to make money hit upon it as a great fundraising idea and - it works! - but as a major consequence BC is seen as "pink and fluffy" and therefore we are expected, particularly as we are women, to be "pink and fluffy" about it. Big expectation to carry on as before - superwoman etc - "its only BC", "look how she coped", "you're sooo brave" - and,massive failure if we dont - "well she managed it", "you're not pink and fluffy enough", "you're a failure then"

Thats what I hate about BC most. Make it like every other cancer. Nasty. Horrid. Life threatening etc. NOT something you do in your designer BC gym outfit on the way to something else - a mere trifiling!!!

belinda
Member

Re: Don't know whether to laugh or cry!

I've only just been on the GMTV site and seen the interview...I'm not bothered if Trisha wants to run during treatment but I'm very angry that she spoke in such a derogatory way about the other women she saw in the waiting room.

cherub
Member

Re: Don't know whether to laugh or cry!

I think there was a statement from Trisha and her husband after diagnosis that said she had a lumpectomy, then she had her lymph nodes out.

Jade Goody was in Big Brother over in India when she was diagnosed. I've always wondered what happened there - I mean, if her Consultant thought there was a chance of anything malignant surely she would have been told not to go anywhere? She has admitted she's doing the interviews and the documentary coverage for money as she says her sons have to be provided for if anything happens to her. On the other hand I read she had made about £4-6m in the years leading up to her diagnosis and she has always admitted BB made her rich.

lmlauder
Member

Re: Don't know whether to laugh or cry!

Just watched the interview and have emailed GMTV with my thoughts, pretty echoing everything said here
Maybe Im being hard on her but Im not sure what type of chemo she had, did she have a mx or a lumpectomy, did she have her nodes removed, how many rads did she have.

In JGs defense I think she was already filming a Documentary (use that word very loosly_ when she was dx

Cat
Member

Re: Don't know whether to laugh or cry!

I am clearly not living in the real world. I vaguely heard about Jade Goody - did she sell her story to all the mags then? Or is that a really stupid question?

cherub
Member

Re: Don't know whether to laugh or cry!

I agree Vodka - most of the people I met when I went for chemo were sitting chatting about what they were getting on with in their daily lives, or were using the time on the drip to read books and newspapers. I met a lot of people who were there for secondaries (one lady was using a wheelchair due to spine mets) and found they were often very inspiring on account of their difficult journeys through this disease. It was the same when I went for rads every day, people just trying their best to get on with whatever they were able to do that day.

I think we can safely assume Trisha will be writing and promoting a book entitled "Trisha - My Fight With Cancer" sometime in the near future - either that or it will be like Jade Goody, the celeb mags will be full of interviews for a price. If they have to be paid for interviews, they should at least donate the money as they are already wealthy.

Vodka
Member

Re: Don't know whether to laugh or cry!

i saw Trisha on GMTV and i have read your comments. I'd just like to say thank you for this topic as i thought there must be something wrong with me physically or mentaly as there is no way i could do or did what Trisha has done. I resented the way that she discribed women sitting all hunched over while getting there treatment. I for one never sat like that nor did any of the other ladies who were getting their chemo at the same time as me. Some of us sat and chatted. I am on rads just now and can only manage short walks at a slow pace, there is no way i could run/jog. I'm sorry but i have lost respect for Trisha, she made me feel like and look like to others that i am faking these horrible side-effects. This treatment is no walk in the park or in Trisha's case a run.

sorry, just so angry about it all. X

Cat
Member

Re: Don't know whether to laugh or cry!

Eloquently put, Soo. Just sent you the link on Facebook. Cat xx

AslansMum
Member

Re: Don't know whether to laugh or cry!

I,ve only just come across this thread and have found everyones comments extremely interesting.

I haven,t seen the Tricia interview as I live abroad. Cat can you send me a link please?

What I can glean from the above posts (correct me if I,m wrong) is that Tricia has given the impression that going through the rigours of cancer and its treatments can be overcome by exercise, and in her case, running. If that is the case then she was extremely fortunate but I would be curious to know, if medically recorded, what percentage of women do actually have the energy to do so.

I was first diagnosed March 07 and underwent a mastectomy and reconstruction. The drugs that I was on made me feel so wretched that I had to give up my thriving restaurant business as I was unable to work for sustained periods. I should also add that 2 days after my op I also hemmoraged and had to have 4 hours of more surgery which has left me with further stomach problems.

I was re diagosed May 08 and have had 2/3rds of my recon removed. I am on a totally different course of treatment + Herceptin this time. To be honest, by comparison to last year, this time around has been a doddle Does that make me Superwoman?? Of course not! It just shows how each and every one of us reacts differently to our treatments and of course also by events in out lives.

I am full of admiration for those of you that are holding together family lives/looking after children etc. If I had those pressures to contend with then maybe this round of treatment would be more difficult for me.

It is impossible to pigeon hole any of us. We will all react differently because we are not Stepford Wives!

Enough of me rambling. I look forward to seeing the link and then maybe adding a few more pence worth!

Soo

magsi
Member

Re: Don't know whether to laugh or cry!

Hi Jane,
I can see where you are coming from and agree there that there is probably too much focus on the individual with cancer and not enough focus on the disease as it affects the whole population.

The balance needs to be redressed, whilst still remembering that the whole population is made up of individuals.
Its a difficult one isn't it?

I'm so glad that there are people around like you who can help to provide us with a bigger picture and perspective.

For my self I prefer or am more comfortable focussing on trying to make a difference to the individual with cancer, probably something to do where my gifts lie. But I'll continue to pick up knowledge and wisdom from your various threads and blogs.

Magsi

JaneRA
Member

Re: Don't know whether to laugh or cry!

Thanks Magsi.

Yes I agree that there are many ways an individual can respond to having breast cancer (though I prefer not to label those responses as 'postive' or 'negative'), but a focus on inidividual attitudes at the expense of the collective problem of cancer is one way of avoiding really looking at what matters...prevention of and cure for the disease.

How individuals choose to live their lives in the face of illness, good fortune, bad fortune etc is in a sense irrelevent.

I always think there is a remarkable similarity between the silly notions of 'postivity' advocated on Deal, No Deal....and the popular conceptions of 'thinking positive' about having cancer.

Too much focus on the individual with cancer..not enough focus on the disaese as it affects the whole population.

Jane

Cat
Member

Re: Don't know whether to laugh or cry!

Well said, Jane!

belinda
Member

Re: Don't know whether to laugh or cry!

Agree Jane, it's shocking we are drowning in pink merchandise but the true figures and stats on this disease are so well hidden.

magsi
Member

Re: Don't know whether to laugh or cry!

Thank you Jane,
I've just printed the above off, to keep as a source of info, and also to show to my OH and adult son as we were talking a little about this last night and the general reaction to the Trish story, and I am not very good at putting a point of view across.

I hope you don't mind if make a comment on your final sentence. Whilst I agree that
' ...........running, being stubborn, having a positive attitude or a negative attitude or no bloody attitude at all won't make any difference to whether you get to live or die.' I do think that for many of us they can make a big difference as to HOW we get to live or die.

JaneRA
Member

Re: Don't know whether to laugh or cry!

I wish some celebrity would use their breast cancer, not as an opportunity to tell us of their individual expereince (you can find plenty of that on websites like this), but to campaign, really campaign for a more focused and determined and effective approach to cancer in general, and because I have it, to breast cancer in particular.

Why can the oridnary truths of breast cancer not be spoken of..and no they are not, not by individuals, not by the charities not anywhere..it's all sanitised half truths about progress and survival...

And what I mean by the ordinary truths of breast cancer is this:

More than 44,000 and increasing women (and some men) are diagnosed each year i the UK

Treatments, though improved, and though leading to greatly imporved 5 yeasr survuival rates, are still for many women gruelling and unpleasant. Chemotherapy and radiotherapy cna leave permanent debilitating side effcets. Surgery, chemotherpay and radiotherpay cure primary breats cancer in greater numbers than 10 years ago but:

between 30 and 50% of people with primary breast cancer (and you can't even find out the truthful number such is the unwitting cover up) will get secondary breast acncer.

Some people with secondary breast cancer are living for many years, but many aren't and all but a tiny percentage will end up dead..prematurely. The average survival time with secondary breats cancer is still about two and half to three years.

Secondary breast cancer means permanent, debiliating treatment.

Secondary breast cancer means eventual death. Death from breast cancer is nasty

Over 12,000 people, mainly women, die annually in the UK of breast cancer....think about that number...TWELVE THOUSAND. I think we all feel sad when we hear of a forum death...perhaps 20-30 women a year get mentioned here...but TWELVE THOUSAND will be dead.

The treatments for breast cancer are simply not good enough..lets focus on why, lets focus on reducing those numbers lets foucus on prevention..lets just stop all the bleating and simpering from celebrities.. Breast cancer is not just an individual affliction...running, being stubborn, having a positive attitude or a negative attitude or no bloody attitude at all won't make any difference to whether you get to live or die. Focus, focus on what matters..this is not designer disease, or daytime telly chat.. this is a contemporary scandal.

Jane

cherub
Member

Re: Don't know whether to laugh or cry!

I have even had a relative tell me I couldn't have been that ill, because I didn't have a mastectomy! Her neighbour's daughter had one and in this relative's mind that meant she was very, very ill compared to me. This is another thing that people don't understand, mastectomy or lumpectomy you can still face dire consequences whatever op you have had.

As for celebrities, I prefer the ones who just deal with it in a dignified way - Maggie Smith for instance, who has hear anything about her recently? I was also quite shocked when I read an interview with Elaine Paige last year and she said she had been diagnosed 10 years ago; Also Sheryl Crow and Anastacia are just speaking about their experiences now, post treatment.

ForumMember
Member

Re: Don't know whether to laugh or cry!

RoadRunner - please don't stop posting (there is an echo around here) your posts on another thread encouraged me to take up running/jogging after I finished radiotherapy. I would recommend it to anybody I felt soooo good doing it and I hadn't previously been a runner. The trick was to start with walking and then mix running and walking, going out three times a week.

There is another lady in my village who is on chemo and she is doing so much more than I was able to. But we each had our way of coping.

My Onc told me to take 1 month off after the first chemo (EC), I ignored him and went back after a week. However the cumulative effect of it all took it's toll in the end.

take care everyone and just do what you can when you can.

Frannie
Member

Re: Don't know whether to laugh or cry!

At the risk of repeating what everyone else has said...

RoadRunner - please don't stop - I don't think anyone has suggested that it is wrong to be as active as Trisha seemingly was, but that the programme failed to acknowledge the range of responses, and coping strategies, that people experience during their treatment.

I overheard a conversation yesterday of 3 young mums in a cafe, discussing a friend having some form of cancer treatment. I was quite surprised that they really didn't seem to know the difference between chemo and radiotherapy, was very tempting to go and enlighten them, but too cowardly! For many people, GMTV, the Daily Mail and so on can be their main source of knowledge on many issues, it's so important they get it right.

sarssquatty
Member

Re: Don't know whether to laugh or cry!

I knew I'd be opening up a can of worms when I posted this.

I've just dragged my body off the settee after my nap!!! Been to work again all day, the fatigue after chemo and RADS seems to last for ever (I finished RADS in JULY.) I agree with everything you ladies have said. I think it is because we feel inadequate, and we do not like to feel like that, Trisha with that sheepish grin, (almost sardonic, or cute, little girl look )makes us feel that way. I was fit and healthy before BC, never been ill (some might say lucky!?), then wham you are being carried along in a nightmare to a place you do not want to be physically or emotionally and you cannot stop it. I fought it all the way, I am quite stubborn and independent, but when you just cannot get out of bed or walk up and down stairs no amount of positive thinking or visualisation, or mind over matter will crack it, of course that army of physios, counsellors (porters LOL), might get you moving!!!

As you have said we are all different interestingly Cherub, I was really ill on FEC, so I was dreading TAX, but apart from the first few days after the steroids wore off, I was quite well (if that isn't a contradiction) on TAX.

There is still a huge amount of ignorance around BC and RADS and chemo, maybe it's better that way? Unless someone has been there , people do not know what you go through. I still get " I don't know how you went through what you did", or "how did you cope?", "I couldn't do what you did". I know I was not superhuman. I remember my one experience, second FEC I was having at home, the nurse could not get the cannula in, after 2 1/2 hours she gave up, I was hysterical!!! I had to drive myself to hospital about 20 miles away, with my chemo drugs in a cool bag, I arrived in oncology in a terible state, bet Trisha couldn't relate to that.

I told someone yesterday at work, why I had been off, she thought I had had bladder problems, or a hysterectomy, she was shocked. It's unbelievable really in the 21st Century that we still feel that we should cover up BC as if it is something to be hidden, or not talked about, as if we are ashamed we have got it. I still can't really talk about it without filling up emotionally, no I do not sit on the couch grinning looking bashful.

I hope one of you has by now got in touch with GMTV, or the BBC to get a more realistic view of BC portrayed.

I have always found this forum really helpful, people share their experiences and offer advice and support, I think we are quite positive too at times.

Incidentally I don't think of myself as a survivor, I find that a strange term.

Keep posting ladies. Please don't stop posting Roadrunner

Good luck to you all with your journeys what ever stage you are at.

Sarah

Homer
Member

Re: Don't know whether to laugh or cry!

The thing that annoys me with what Trisa says,
is that friends,family and work mates hear her and then think i was making it up when i was on chemo.
They think if she can do it why didnt you?
people close to me saw how i was but those not so close really dont understand, so she isnt helping with her attitude.

i had to leave my job as it was a hard manual work, i work in an office now, but i was so wiped out on chemo
i dont think i would have been able to even do that.

I had to be rushed into hospital at one point as i had no immune system, i felt so ill i was carried in.

Then shes laughing about carrying mud into the hospital, she just didnt think about others like i was with no immunety
she could have been bringing loads of bugs/germs in with her!!

If she does do a book i will not be buying it!

lizcat
Member

Re: Don't know whether to laugh or cry!

Hi all,

Cat - thanks so much for the PM, it was very much appreciated & echoes everything the medics have said to me (apart from the kids element !). All your remarks here are so articulate !

Ostrich - completely agree. I think people do tend to come on the site at times when they need help/advice and will post at difficult times. Personally I've only started using this site comparatively recently for general info & to compare notes ! Prior to this I was concentrating on my treatment.

Roadrunner - I'm sorry if you feel so upset by this thread that you don't want to post again. I'm sure it was no-one's intention to make you feel this way. I don't for one minute think you had an easy time of it just because you kept running & looking after the kids and can fully understand how it was your way of maintaining normality.

I felt so guilty & a failure that I couldn't do stuff, especially go to work, as I've no kids or anything that when I did try to go back to work albeit on a very part time basis, I almost had a breakdown & think it was my call to my bcn that saved me. This isn't supposed to be as melodramatic as it sounds !

I think what made me furious was the bit in the interview when I felt trisha implied that the health pros were wrong in saying she should rest etc. I'm sure they were only acting in her best interests and telling her it was ok to rest if she needed to. That doesn't make them wrong just because she was able to maintain things largely as before. As Jane says above, this disease and its treatment effects everyone differently and everyone has their own way of dealing with it. No-one is right & no-one is wrong.

Apologies if I've offended anyone. I will watch this thread with interest ! Please all keep posting as comments are interesting even if we don't all agree - a good debate is healthy !

Good luck to you all,

Liz

PS I will add more if my chemo brain remembers something else.....

cherub
Member

Re: Don't know whether to laugh or cry!

I think Jane makes an important point about treatments affecting people in different ways. When I was on FEC I was pretty much OK apart from the third cycle (which the nurses warned me about) and I was one of the lucky patients who managed to sail through 5 weeks of rads. I managed to have a reasonably normal existence, went for long walks, did Christmas shopping etc - then I went on Taxotere and it was like bang! I was in such excruciating pain I could not get up and down my stairs never mind walk or run and I only had about 2 days in every cycle where I was able to be up and about. It felt like I was just going to the hospital every 3 weeks to be made ill again. When I finished it, I was left very, very breathless and it took a few weeks to get over this aspect; there were also diabetic symptoms from the steroids. The oncologists said at the time I was very lucky that I managed all 4 cycles as a lot of patients don't. My experience of FEC lulled me into a false sense of security.

I would have loved to have been the sort of person who could have gone walking or to the gym or yoga, but for me Taxotere made any activity impossible and I was told I had to just try and ride it out. It made me feel as if a few months of my life had been robbed from me.

Cat
Member

Re: Don't know whether to laugh or cry!

No, please don't stop posting RoadRunner, what I find so amazing and helpful about the discussion forums is the diversity and richness that each and every one of us brings to it. Combined we all make up the public face of BC, we just want to show it.

Guest
Not applicable

Re: Don't know whether to laugh or cry!

Sorry Roadrunner,I take things too personaly.Please dont stop posting.

Cat
Member

Re: Don't know whether to laugh or cry!

I agree with both Ostrich and Jane. RoadRunner, terrific that you carried on with your regular life, but I think that's what we all do, we just do it in our own unique and individual ways. That's what makes each of us who we are. You and Trisha ran, it helped you keep control and normalcy. I've always been a walker and I continue to walk lots despite feeling rubbish with the chemo I'm having.

I think the main sentiment expressed by many women here is that they would like to see a more balanced view. The media portrays 'special' stories of ladies with bc, each battling valiantly (gosh I hate to hear the term 'battle' but I use it here because that's an over-generalised media portrayal) and beating the odds tenaciously. I'm a normal woman getting on with her normal life in a normal mundane fashion, there's nothing special about me and that's probably why a story such as mine or the majority of ladies who use this website don't make it into the public domain I don't run mud anywhere other than my hall carpet after my three-year-old and I have been out exploring (we go on bear hunts, Polar expeditions, jungle safaris - this is my normal life and I continue with it), I don't do anything amazingly out of the ordinary, I get on with it just like the rest of us who post here. But we all cope, and feeling exhausted, ill, unable to walk or run or dance, doesn't make us failures, doesn't mean we're giving up, it means we're human.

I feel really passionately about this which is why I keep posting on this thread.

ostrich
Member

Re: Don't know whether to laugh or cry!

I think it would be fair to say that apart from a few threads where I "chat" with friends, I tend to only come here when I need advice/support/am scared/worried etc and find that I can get that here or give the same to someone else who appears to be here for the same reason. I don't think many come here to post topics on their good feelings/times etc because certainly when I am having a good time/feeling good its not usually sat in front of my computer but out there in the real world. Perhaps thats why you feel that this forum isn't positive - it's not that we aren't it's just that when we are we're not here, x

RoadRunner
Member

Re: Don't know whether to laugh or cry!

I can see the point that the media is dominated by the good stories and is therfore not showing a representative sample, but I think it is a shame that this forum seems to go in completely the opposite direction. I think I will give up posting.

Guest
Not applicable

Re: Don't know whether to laugh or cry!

I

JaneRA
Member

Re: Don't know whether to laugh or cry!

Really agree ostrich. I also think its really important to remember that treatment affects people in many different ways. Some women are really really ill on chemotherapy..some aren't and everything inbetween.

We all I think try our best to cope best we can...and I think glorifying those who run mud into the radiotherapy room isn't helpful to anyone.

The point is there is no 'right' way to respond to a diagnosis of, and treatment for, breast cancer.
Jane

ostrich
Member

Re: Don't know whether to laugh or cry!

Its a valid point you make RoadRunner. I don't think any of the ladies who have spoken on this thread don't believe that there arent many women who cope as you and Trisha have done, the upsetting part is that its generally only women who cope in that way that are portrayed by the media as women living with breast cancer, I am not trying to stereotype but we are only shown the image of the "survivor" and what I certainly want to see is a more balanced view as we are not all like that and some of us do struggle to cope and don't enjoy the pressure to be a "survivor".

xx