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Asking for answers when you know you won't get what you want
Ok. I have mentioned this before and those of you who know me have said wisely, Let it Go. It won't help, it will slow your recovery from grief, it will cause more pain.
But I have been thinking and I have to do this. I have to get these questions out of me so that in 2 years or 3/4/5 years I am not left thinking, "I wish I'd asked that."
I think my questions will not give me any answers. They will not tell me what I want to hear. They will not alter the outcome - my man is dead. That cannot be changed. In the big picture, they probably would not have made much difference to the final outcome, but they need asking. Just in case, in the future, some poor patient presents with various symptoms and somebody thinks, "Hmm. Perhaps we'll keep him on the books. We WILL keep seeing him very 6 months. We will keep looking for the source of these weird cells just in case............."
Or, "Hmm. this patient keeps complaining about back pain. Well yes, there might be good reason for that but hell, he has had weird cells for a while, too. Perhaps we should send him for another scan and not just write him a script for more morphine."
Or, "Hmm. this patient has mets all over the place. Perhaps we should look n his brain and see if there are any there."
Am I angry? You bet. But that is not why I have to do this. I have to do it as a homage to the man I have lost. He deserves that I do this much. Actually he deserved much more from this inadequate, understaffed and overstretched health system.
I do not wish to cause pain or make people feel guilt. I do not want people to reach for the phone to their Medical Defence Unions. I do not even want to read the answers my questions may elicit. Because nothing but nothing will give me the outcome I would so dearly love.
I just want to stand up and be listened to. I want people to THINK before they respond in future. Maybe go the extra mile. Maybe look after one of your own? Maybe improve things for the future. Doctors are only humans, I know that.
So there you are. That is what I want to do. And suddenly I feel 10 feet tall and don't even patronise me. Don't fob me off. Because I was once a warrior and I have been to that place "beyond everything."
Dear Little Warrior with the big heart,
I've been where you are with the thousand and one questions, not just of medical staff, but of my own reactions too. I let it go, but I sometimes wonder whether I should have asked those questions. I realise now that if I had asked them I would probably not have believed the answers I got unless they were what I was expecting.
Whatever you decide to do, we will be right there beside you.
Best Welsh cwtches,
Medium Litlle Odin xxx
Little Jen, I applaud your courage and dignity.
I think I understand your desire to ask those questions. My beloved J is, as far as I know, healthy with regular 6-monthly checks, but every thime he clears his throat (one of his early symptoms which we didn't then realise WAS a symptom) I feel the ice in my stomach and the Fear that never goes away that I might lose him as you lost your brave, lovely man. Good men are (possibly) everywhere (pace, paddyman) but it took me 44 years to find mine and I can't bear the thought of being where you, Little Jen, are now.
Much, much love to you. You are a shining light and I admire you tremendously. x x x
Just wanted to write back, like Lm said, you're still a warrier, but also, I reckon I'd be doing the same as you, I'd be asking questions. I'm not very good at letting go and I'm also always asking questions... so I think you're doing the right thing because as you said, it could help future patients who may present the same symptoms. That's one of the reasons I gave feedback to the hopsitals that treated Tom - whether it be well or not so well...
Good for you for standing up and wanting to be listened to you 10 foot tall lady :)
Lots and lots of hugs to you
Biggest, tallest, strongest Jen, you are an amazing woman. Do what you have to do, you seem prepared and know it wont all be what you want to hear but if you think this is what you need to do in memory of your beloved man, we stand beside you every step of the way. I love that you want to find out things that could possibly open eyes and change the system slightly to benefit others in the future, and wish you mega luck every step of the way.You are doing brilliantly, one step at a time.Love n hugs, Isis xxx
Oh my dear friends -
Thank you from what's left of my heart. Thank you, dear LM and Medium Little Odin (cwtches always welcome). Thank you Minima, Clairlybel and Isis. Thank you all. I did not expect any reply to what I wrote for I just wrote things for myself. They came from inside the pit I fall down into rather too much these days. Sometimes I write things and think Yep, that's it. That really is what I need to do. Or yep, that really is what I think.
And all the questions above are what I want to ask because sometimes you have to bear witness for someone. You have to act as spokesman when someone is really ill. You have to stand up and say, "Excuse me, you need to know that.........." And the same is true when someone is dead. Someone worth everything to you and a lot to the community in which he lived. Someone who was, in the end, taller, bigger, braver and more dignified than you knew could be possible. You have to stand up and bear witness to those qualities. And if it means that you need courage yourself to do that, then it is as nothing to the courage you have witnessed. And it is right that you do this thing and then, only then can you let it go. That is what I have worked out for myself and myself only.
And you, dear friends, have helped me by giving me support, by listening and by standing by me. Thank you.
And if you think I am brave, well I am flattered because most days at the mo I am a bit of a snivelling little jelly I promise you.
Enjoy each day as much as you can, dear friends.
too much to put on here so sent you a private message. Hope you dont fall asleep reading it. XXXX
You are brave. Bravery is about being a jelly and still carrying on. Snivelling or not. It is not about tough people fighting. Bravery and courage are for when you are scared stiff and think you can't cope, yet you do, whether you do it as a jelly or not. You are here and you help me too and that is amazing
You are jelly brave :)
I admire you Jen and I love the love you had together- that is special. It might give me a bit of eye incontinence, but love it the same. I am so pleased you have found those lovely and special ladies Respect and jmd and jackie and the others. They leave me gobsmacked with their courage same as you.
Take care and you know I am here breathing and wibbling and wobbling along next to you.
Little My xxx
Dear Little My
We will all be having eye incontinence at this rate and wibbly wobblying too.
Hope all is well with you tonight. xxxxx
Hi LittleJen, he would be so proud of you. You write beautifully, engaging your readers to stand alongside you in your righteous anger. Ask those questions, maybe in writing because you can do it so eloquently, and they will then have to answer your questions properly. I'm so sorry for your loss and the pain it is bringing you. Love and hugs,
Yvonne x x
Sorry,I missed this as I was on Holiday. I have just read it, and I can only say how proud I am to have met such a Warrior as you! You will always stand up for what you believe in, and especially for your man! I have a pen and writing paper near my bed, if I have something niggling at me I have to write it down, once written I can then sleep. I agree, writing down our thoughts helps to make our decisions, helps to choose the paths we take.
Go get em my wibbly wobbly warrior friend!
Much love, hugs and Respect
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