cancer cell at the moment of division
photo by Dr. Paul Andrews, University of Dundee
Bear with me for just one more entry, although, friends, this time, there will be no jokes and definitely no laughs. If that turns you off, so be it.
My blogging friend Deborah in her last post urged us to go and visit Caroline, who has recently started blogging about her cancer. Caroline's blog is desperately moving, she needs all the positive support the blogging community can give her.
Both Caroline and I have railed against the prevailing wisdom, which exhorts cancer sufferers to "remain positive" at all times and Deborah asked why we didn't buy into this philosophy whole-heartedly.
In an email I explained to Deborah, but I think it might be of general interest, so I will tell you all too.
This is what I wrote:
o-o-o-o
When you are first told you have cancer the world collapses around you. Suddenly you have no future other than a painful and possibly short one.
For everybody to concentrate on you being positive (bp from now on) when you really want to rave and rant and scream the place down and "why me, why me" and howl and weep and despair, bp is bloody hard.
You really want to be left alone to react the way you NEED to there and then.
Then you get used to the diagnosis (or not) and the rollercoaster of treatments begins. You feel bloody awful again and for quite a beastly long time. You have lost all control over your body, doctors and nurses and oncologists and radiotherapists take over. Inside you are probably still screaming; I was. The cancer becomes the centre of your world.
In spite of all that, it is possible to remain passionate about something; for me it was gardening. My oncologist and I used to discuss gardening and crops and hard work at every session, She'd root around inside me, (I had endometrial cancer), and take my mind off things that way. She'd also ask me about the garden and my plans for it, therefore giving me a future.
. . . . .
I think what many cancer sufferers and survivors, at least those who can think for themselves, object to, is that bp is the be-all and end-all for some. If the treatment doesn't work, bp doesn't work. Cancer is not something you are responsible for and bp isn't going to make you better. Neither is giving in without a fight, of course. Bp helps the whole person to be in a healthier place, better able to withstand the onslaught, and it bloody well is an onslaught.
But fighting and bp only help so far, you can still die in spite of the most positive attitude in the world.
I remember one day in particular; Waking up in the morning I found I was crying. Not howling, just crying, tears spilling down my face. An hour later, on the hour-long drive to the day's session, I was still crying. While I was waiting, in my scanty gown, to go into the radiotherapy room, the crying went on. Staff looked at me, "there, there, it's not so bad, you'll soon be on your way home again". "B p" Before, during, after treatment, and while getting dressed, I cried. On the way home, Beloved driving, I cried. At home, I cried, All evening, I cried. I went to bed crying. By next morning I had stopped.
I had been so bloody positive all the time, something in me took over and caused me and my psyche and my body to react the way it needed to react.
I had absolutely no control over those tears.
I felt a lot better afterwards and the bp wasn't nearly as enforced and straitjacketed ever again.
Dear Deb, thank you for asking, I think I needed to tell someone. My friend Jenny, whom I mentioned to Caroline, is only just starting treatment and all she tells me is, "I've got to stay positive", her cancer is inoperable and probably terminal and I can't bring myself to tell her to be kind to herself.
I know that there are a few of us who have blogged, and are still blogging, on living with cancer. Once you have/have had cancer (luckily, life expectancy is so much better now than it was), you find lots of others coming out and discussing this intruder, this unwanted, evil enemy that has taken over your body and how to cope with it.
I did everything I could, I took everything on offer, from every kind of alternative treatment to anything the doctors threw at me. I am a survivor.
If it should be you, now or in the future, or somebody you love, allow yourself/them space to despair, to weep, to rave and rant, to curse fate.
Although I can only speak for myself, I can say that I felt better for it afterwards, able to pick myself up and face whatever came next.
I think what many cancer sufferers and survivors, at least those who can think for themselves, object to, is that bp is the be-all and end-all for some. If the treatment doesn't work, bp doesn't work. Cancer is not something you are responsible for and bp isn't going to make you better. Neither is giving in without a fight, of course. Bp helps the whole person to be in a healthier place, better able to withstand the onslaught, and it bloody well is an onslaught.
But fighting and bp only help so far, you can still die in spite of the most positive attitude in the world.
I remember one day in particular; Waking up in the morning I found I was crying. Not howling, just crying, tears spilling down my face. An hour later, on the hour-long drive to the day's session, I was still crying. While I was waiting, in my scanty gown, to go into the radiotherapy room, the crying went on. Staff looked at me, "there, there, it's not so bad, you'll soon be on your way home again". "B p" Before, during, after treatment, and while getting dressed, I cried. On the way home, Beloved driving, I cried. At home, I cried, All evening, I cried. I went to bed crying. By next morning I had stopped.
I had been so bloody positive all the time, something in me took over and caused me and my psyche and my body to react the way it needed to react.
I had absolutely no control over those tears.
I felt a lot better afterwards and the bp wasn't nearly as enforced and straitjacketed ever again.
Dear Deb, thank you for asking, I think I needed to tell someone. My friend Jenny, whom I mentioned to Caroline, is only just starting treatment and all she tells me is, "I've got to stay positive", her cancer is inoperable and probably terminal and I can't bring myself to tell her to be kind to herself.
o-o-o-o
I know that there are a few of us who have blogged, and are still blogging, on living with cancer. Once you have/have had cancer (luckily, life expectancy is so much better now than it was), you find lots of others coming out and discussing this intruder, this unwanted, evil enemy that has taken over your body and how to cope with it.
I did everything I could, I took everything on offer, from every kind of alternative treatment to anything the doctors threw at me. I am a survivor.
If it should be you, now or in the future, or somebody you love, allow yourself/them space to despair, to weep, to rave and rant, to curse fate.
Although I can only speak for myself, I can say that I felt better for it afterwards, able to pick myself up and face whatever came next.
Thanks Friko. You have put this so well and while I have not been there/done that I am proud that you found your way and are able to help those beginning this journey. Good attitude only gets us so far. Having a vision on something we love is probably a much better addition.
ReplyDeleteAs always, you tell it like it is. Such honesty cannot be anything but a help to others who read your words and identify with the sentiments expressed. Thanks once again for making me think on yet another facet of this peculiar thing we call life.
ReplyDeleteFriko, What an important post. I'm sure many cancer survivors will be applauding!
ReplyDeleteWe need to be able to feel whatever it is that we are feeling, as you say. We need to express our truth of the moment. When our life could be cut short by serious illness - we enter a grieving process. To be told to be positive when we are grieving the possible loss of our precious life is absurd.
The thing is human e-motions move and flow. So we need to rant, weep and wail - but we have to be open the the movement of the emotion - like perhaps when we experience hope, or envision with joy a future. We need to be able to feel and express it all in a beautiful symphonic movement of feeling - crashing, building, soaring ... As Zorba the Greek (in the musical) says ... "the whole glorious catastrophe that we call life" (loosely quoted).
I think when we exhort others to be positive, we are really asking them not to feel because seeing their distress might upset US - and it is ourselves we are protecting. We might as well say "Don't lose hope and make ME experience pain and fear, too!" It is quite a selfish request, this 'be positive' and I would guess that is one reason that it infuriated you.
Your post gives people 'permission' to be with what is, to express what is - and when expressed it usually abates. When suppressed to please those around us, it builds and creates immense internal pressure. Even when it abates, it may recycle around again later ... and we express again then, etc. etc. etc.
Positive = good patient
ReplyDeleteNegatvie = bad patient
As if those struggling to deal with serious illness don't have enough stress, they are being, in a sense, held responsible if they are not positive enough.
Good post to chew over, Friko.
So well put. You have done a public service.
ReplyDeleteI wholeheartedly support what you've just written, Friko, and would like to add that the pressure to be ever positive is a great burden on friends and family of cancer patients too. When my oldest friend was in deep despair about her breast cancer I found myself weeping alongside her, despite making a huge effort not to - and instead of making it worse, I saw she was visibly relieved that her pain, helplessness, rage and fear were being shared and felt by someone else close to her. And then we wiped our eyes and carried on; she to survive, and I to stop trying so hard to be an impossibly-perfect supporter. It was a terrifying time, and it helped to acknowledge that, I think.
ReplyDeleteI have four people close to me, all in their middle years, all fighting cancer just now. Reading this has helped a great deal. Often, those closest to the sufferers feel that, as long as they are 'being positive', somehow the disease will be on the back foot. You have put it all into perspective, and I'd like to thank you for that.
ReplyDeleteFriko, look what you've done! Reached out and touched people right where it matters; spoken your truth and made a difference. You have forever altered my persepctive on the way serious illness is dealt with. Your honesty is such a great part of you.
ReplyDeleteDear Friko, thank you so much for this post. I am so looking forward to meeting you on Friday. I am sort of going through something like this at the moment.
ReplyDeleteI have written at some length about when I was ill so won't do so again here but I would add that I only wanted to see those who are very dear to me when I was really ill and I suspect that one of the reasons for that is that for friends and colleagues I would have had to act a part in some way, and did not wish to.
ReplyDeleteMy other bugbear about the be postive mantra is that if the cancer wins, it then becomes somehow your fault - perhaps you weren't positive enough? bollocks to that.
I can't help feeling that coping with the cancer diagnosis and treatment is more than enough to be going on with . Why add more stress ?
ReplyDeleteWe have to learn to let people feel sad . I think I'd be enraged if someone tried to force me to be perky and positive when I felt so devastated and vulnerable .
Wow that was powerful. We all learn the stages of grieving DABDA and I firmly believe to follow them in the right order is so important. Some folks misunderstand the acceptance part. That does not mean you give up, of course, but if you allow yourself to work through the first stages and allow yourself the anger, denial, bargaining and depression, to a certain degree, than the acceptance will always give a person moral strength. I will pray for your friend
ReplyDeleteQMM
I haven't had cancer (knock on wood) but I know I'd scream and howl and then use my mind towards healing. I've managed to use that system with a brain tumor, so it works for me. As for it working every time, no, it will not work at some point, and then I pray for moving on with as much grace as I can muster. Thank you, Friko, for sharing. We are all so very vulnerable when we are sick, and reading others stories always seem to help, at least it did for me.
ReplyDeleteTabor - "Something to be passionate about", a vision on something we love, isn't that always the best medicine?
ReplyDeletejnksy - so long as we are able to learn from each other, we don't feel so alone.
Bonnie - as always, words of wisdom. You know, I didn't consciously see it at the time but often others want us to submerge our feelings in order not to disturb theirs, not just with serious illness but at other times too. I shall be watching out for that and query it more in future.
Pondside - Exactly, as Bonnie, it is often a selfish feeling.
Vicki - thank you, Vicki,
rachel - you were a 'true' friend in every sense of the word; true to her and true to yourself, the only friend worth having.
Martin H - I hope you will be able to support the people you love, who are suffering, as they would want you to, not as would make you feel least troubled.
Deborah - it was all your fault, you asked for it. thank you.
mollygolver - my best wishes to you, see you Friday.
elizabethm - I thought of you when I wrote this post; I like the 'bollocks'
SmitoniusandSonata - exactly, so let's hear it for genuine feelings!
QMM - I had not heard of DABDA before, It is the perfect mantra, to be learned by heart.
Nancy - Being vulnerable is so very human, why won't people let us be so. As you say, we DO come out of it and carry on, until such time as we don't. Thank you Nancy.
Well said friko and I am with EM, Bollocks to positive thinking, women get blamed for so much already without being told its their fault they arent being chipper enough when they have cancer or anything else for that matter. Sometimes you just need a bloody big howl no one can be expected to cope and put on a brave face all the time!
ReplyDeleteWell put! I can't imagine anything worse than some nit wit telling you to be positive. I'd rather feel free to be in touch than told how to be? My friend passed away around four years ago (breast cancer)..though her death was from the results of chemo (a heart attack). This was her decision though. There is something to (B 17- known as laetrile)..worth looking into- (G.E.Griffen).
ReplyDeleteI did some in home care for a woman whose husband was diagnosed with cancer..he began using this and his cancer disappeared. It came back so he decided to quit his wiskey (don't think he stopped smoking)..unfortunately, the second time around he ended up doing the chemo together with the b 17. He's doing well actually.
Regina-
I enjoyed reading this post where you tell it like it is, no fudging about it. I have a very little family, not many people to have been sick. My father died suddenly of unknown causes and my mother did not want to get an autopsy for him. My mother had Parkinson’s disease but a cancer killed her. I still don’t know what type of cancer she had because she did not want me to know and did not want to fight it. I think that when people say “be positive” it is because they don’t know what to say and it’s like a tap on the shoulder saying “everything will be OK dear” but really means “well, I don’t want to talk about your sickness, let’s forget it.” I think it is OK to scream and yell and weep and want your friends to weep with you rather than smile it off with some positive nonsense comment.
ReplyDeleteher at home - to hell with what we are expected to do, t be able to cope you need to accept the facts first.
ReplyDeleteKilauea Poetry - I am all in favour of doing everything going; alternative, complementary and conventional. I don't think I would want to go without conventional.
Vagabonde - It is a pity your mother didn't allow you to know what cancer she had. Mine was the same, she didn't even want to know herself and wanted the doctors to keep it from her. She was a silly woman; I wouldn't do the same to my daughter. It is much better to know the enemy, otherwise, how do you fight it.
World must become better, because of people like you.
ReplyDeleteFriko, I am very late in reading your very wise post.
ReplyDeleteThe comments before mine say much that I wanted to write. Vagabonde in particular.
My cancer experience is light ... several skin cancers on my face, and some breast scares. I know and have known many folks with heavier experiences.
I won't write more here, just wish that there were not an ocean between us. How I would like to have a cup or glass of something with you.
How glad I am to have this electronic magic make the physical ocean narrow.
xo
Robert - thank you
ReplyDeleteFrances - how sad that we can't do what you say; it would be so lovely.
I drink to you!
Oh Friko! THANK YOU!
ReplyDeleteAs my Dearly Beloved fights for his life we have had to draw the boundaries with our friends who have complained that "he must keep a positive attitude." He has spent years with a group of men learning to be "emotionally literate" and now that he is facing the worst possible prognosis, everyone wants to shut him down. The truth is they are the ones who can't take it. They do not want to face the truth about how awful cancer is. It is an attempt to cover it up and make it go away. If they don't have to see, hear, or deal with his emotional pain, it doesn't exist and they have no duty to help him. Now they have the nerve to criticize us for making lifestyle changes they don't agree with. What they are really saying is that they want him to continue to be his ususal happy, generous self and join in their merry-making. Sorry. Our life has changed because of this disease and we deal with whatever is in front of us in the moment.
I try to forgive our friends. They have no clue how hard this is and I don't wish to ruin their day with our pain. But it is so nice when someone understands and can be with us just a little while to love and accept us the way we are now.
I applaud your insight and your statements. You have just educated many, which might ease a little pain and suffering of someone else. God bless you.
Oh Friko how , just how could I have missed this post? My mum is undergoing chemo and radio therapy at the moment and not only thinks she must stay positive but also strong ( or is that the same?) It made her so incredibly hard. Hard and self-righteous. She hurts her youngest daughter ( my sister) by refusing to talk to her. Threatens to divorce my dad, yet to the outside world she is the incredibly positive Mrs xxx
ReplyDeleteIf only she would let her true feelings show, we'd be there, but she behaves like an injured wolf, snapping and growling at everybody who gets too near. As long as the facade remains intact... even her own brother and sister are not allowed to know she is ill. Is this about bp?
Karen - I have replied to this very moving comment at your blog.
ReplyDeleteIvy - Das hoert sich furchtbar an. Vielleicht hat deine Mutter selber so grosse Angst, dass sie es sich nicht erlauben kann, ihre weichere Seite zu zeigen.Vielleicht hat sie Angst, dass sie dann zusammenbricht. Vielleicht ist sie auch dem Krebs so boese, dass sich diese Wut irgendwie zeigen muss. Dem Krebs gegenueber ist sie schliesslich hilflos, liebende Angehoerige kann man da eher treffen.
Ist es nicht furchtbar, wie schwer sich manche Leute das bisschen Leben machen. Ich kann bloss immer wieder sagen "be kind to yourself' and you will be kind to others.