A friend called me tonight, a friend whom I have always really liked, and got on well with but never quite sure if it was returned...Do you have those kind of friends? We have talked several times about 'getting together' but one thing or another always got in the way, and I thought that I would leave it as I have a complete phobia about pushing too hard.
Well, that friend called me tonight we have a really honest chat about how my friends are nervous about calling or communicating and I, in return, am nervous about ringing them up and inflicting my troubles on them. So, spurred by our honesty tonight, I thought a really good idea would be to clarify some of the ways that YOU can help someone who has cancer or really any chronic illness.
Of course, all you wonderful people that come back and comment and really, really listen to me on here, are a complete life saver. I can only be as honest, and as direct as I want to because of the way you all accept my feelings and for that, I thank you all deeply from the bottom of my heart...
So how can you help?
1) Don't wait to hear from them but call, text or email to make it clear that you are still interested. I am petrified to boring you to tears. I know that my friends are all in a completely different 'zone' to me. They are juggling young children, schools, dinner parties, husbands and forging their own identities within their careers. They are not thinking about whether their wills are completely up to date, sorting through their 'stuff' so if they do go, their kids won't have to do it, they aren't waking up nervously every morning and feeling their necks to see if the cancer has, by chance, jumped up somewhere else...and I don't want to bore you with it all.
2) Please talk to me about your life without saying stuff like, 'compared to your troubles...'. Yes, cancer is major, but I want to share your life still. By talking about trivia as well, you take me out of my preoccupation and help to shrink the fear. It makes cancer balance with your problems and it really helps me to know that I can still be a useful listener and friend to you. I know I am hugely volatile at the moment. It is getting better but everytime someone asks me how I am and I reply truthfully, tears start flowing. I don't mean to, it just happens and because I am so desperately vulnerable at the moment, I feel that I am taking all the time, and I really really want to be a good friend to you as well. I desperately want to feel that I can still give, as well as take.
3) Please forgive me if I don't leap to call you back, if I can't accept an offer of help, or if I seem reticent. The drugs I am on at the moment, as numerous blog friends of mine can attest mean that I am getting to bed somewhere between 4 and 6am every morning. My energy levels are ok at the beginning of the day and then droop massively. That affects my emotional reserves too and sometimes I can call you back and sometimes, I just want to shrivel up inside my blanket on my sofa and avoid any contact with the outside world. I will call, I promise, and if you call back, I will be delighted to hear from you.
4) Chemo brain is a real syndrome. Chemo does affect the memory and I forget so much. My mother will remind me of something and the next minute I will have completely forgotten what I had to do. If you do need me to do something, please remind me over and over. Just treat me like an aged, forgetful aunt and we will be fine!
5) I need you, I need you desperately. Because I am not working, because my children are not always at home, I really need to feel connected. You, my friends, can help me to feel that, help me to feel that I am still a part of your lives even though I am, through necessity, burrowed in my house. My self esteem has plummeted due to the side effects: my hands are peeling with blisters and dry, flaky skin which makes them feel burnt and hard to move,my nails are long as they are too painful to cut, my face has erupted with dark blotches on one side, I am bald and I am bloated with steroids. For a fat teenager who had hoped to have left those days behind, I am deeply insecure about the way I look and just catching a sight of myself in a window, or a mirror serves to remind me of the dichotomy between how I feel, and how I look. This has complete battered the way i feel about myself. I am insecure socially, emotionally and physically.. A good day means that I get dressed, feed the dog, cook, get to the gym and read, and collapse....
6) I have always been appalling at keeping in touch. I know that, I am tremendously insecure socially and I really don't want to bother you or make you feel that you have to invite me over, or that you have to do something because I really don't want to make this that kind of post and I can't invite you back at the moment and it all comes back to that taking without giving thing...
7) There are real dangers associated with being with people the week after chemo. If I catch a cold which turns into an infection and makes my temperature rise above 38 degrees, I have to go directly to hospital where I will be admitted and put in IV antibiotics and given transfusions to raise my white blood cell count which has been decimated by the chemo. I don't want that to happen so if I ask you if your house is 'coldy' or you have viruses, it isn't that I don't want to see you, that I know you haven't wiped your children's noses for three weeks, or that you are so covered in snot, that they call you the 'green house', it is just that I recognise that my job over these six treatments is to allow the chemo to work so that I can get better to beat this bloody thing and be around for my children as long as I can....
8) Last and not least, people in my situation HATE ASKING FOR HELP. We are so embarrassed at having to ring up and appear vulnerable, and needy... We know you can't read minds, that you need direction but we want to appear strong, and in charge of our destiny and letting the real vulnerability through, the fact that we feel a victim of our illness, is scary and frightening because, let's face it, we all hate asking for help don't we, preferring to cope on our own.
And finally, thank you for reading this, if you have... Thank you for being my friends. Cancer can do many things, but it cannot take friendships away, it cannot split up close families, and it can't decimate the human spirit...
Here's to you,
Minerva
31 comments:
I'm so glad I've found your blog. I wrote a post very similar to this a few months ago http://dunnbryant.livejournal.com/6002.html (though I have to say that my tone seems much more on the bitter side than yours.) This is a hard road, isn't it? Scary and twisty like driving through a storm. I'm glad to read you. Glad to know there is a kindred spirit out there, not matter how terrible it is that we have to have cancer in common to connect us.
Hi Minerva, My name is Joann. I live in St. Louis MO USA. I first read your blog your last go around and had you on my blogroll .. hence I have been reading since you have returned. I don't know that I have anything to offer you except that I am along on your journey. You are so brave and so hurt and so sick and so angry and that is okay. Tell it as it is and know there is someone listening and caring very much.
Those are good helpful hints for the clueless of what you need from people. Hopefully folks will understand n help you out better.
When my Mom had chemo I'd bought her boxes of disposable mouth/nose masks to hand out to her visitors with a little maladies who'd knock at the door. (cough, cough) She was very popular n it was disturbing how many didn't realize the danger their germs present to someone with chemo effects.
I sleep those same hours because I work nights. This world would be so much lonelier with out internet for me also-
My single-mom friend finished up Chemo, rad, n surgery, n is doing well now, working again after an ordeal year for her, the Sun is shining again.
Being able to do anything, however mundane or ordinary, is great compared to nothing!
Still thinking about you way over here across the water-way on Cape Cod.
Babe, a very touching powerful post. Not for the first time. And you wonder why people want to come back and read your words sometimes?
I have lots to say about it, but I must order my thoughts, so I'll be back soon to contribute. At the moment I have to get up and out and go and be sensible work-wise ;-)
Just wanted to say hi though, and have a good day, and don't for a minute think you are boring. And as for me not telling you about what's going on in my life...well now that's just not going to happen is it?!! You remain one of my best blogbuddies with your kind and thoughtful words in response to my outpourings. It's me who should be thanking you Min!
Friday hugs
x
And here's to you.
XX
Some really useful pointers that friends of sufferers all ought to read. It will give a good insight to them.
Thank YOU xxx
Recently a very good friend has been diagnosed and I did wonder about how to handle some things.
Thanks for writing this, my love, it's what every friend/relative/carer/pet of a cancer sufferer needs to read. It describes my father's thoughts and feelings to a T. If my mother had been able to read this, she might have spared herself a lot of torture about whether she was doing the right thing, too much, too little, well enough (and thereby driving my father up the wall...).
"chemo brain" - now I have the proper medical term for it, thank you. BUT how did I get this malady?
This is an exceptional post in its clarity, revelatory value and practical application.
I thank you for it. Now back on my knees I go - to make beautiful concrete.
Thanks so much for visiting. I have been following your story with interest and hope. I trust you will have a comfortable weekend. Lovely to hear that you are familiar with this part of the world :-)
Blessings, Su
I have read your March 1st post and it reminded me of this quote from Socrates: "Oblige with all your soul that friend who has made you a present of his own" So I feel gifted knowing you think of us all as friends. We don't always know what to say to you Minerva but you always seem to know what we mean. Here is another quote from Thoreau "The language of Friendship is not words but meaning. It is an intelligence above language"
Even about this, needing help and asking for it, you are so very eloquent and honest. This might sound odd, but I'm proud to read your blog. :)
I'm praying that God grants you peace and wellness. People who don't even know you really DO care, you know.
thanks for giving us these pointers. i, too, have been hesitant at times as to how i can reach out to you. i just wanted you to know that you are such a source of inspiration for me. never give up the fight. love and prayers always. ;)
Well said, Monxy!
They're just the things I'd like to say to my friends, but struggle with how to say them.
As always, you put it across incredibly eloquently :o)
xxx
And here's to you, Minerva. For your honesty, your strength and your determination.
As I read your entry, I couldn't help but think...if more people would be as honest as you were, if more people would simply just be up-front and open, if more people would go to the depths of their souls as you have....perhaps the world would be a better-understood and kinder place.
So most of all, here's to your honesty! Because it wins out every time. Enjoy your Saturday.
Yes, I have friendships like that. People, I find, are confusing out there in the real world. I'd be lost without the safety net of internet friendship. You can quantify how much someone likes you by the quantity and nature of their comments: easy and explicit.
Posts like this are really helpful for making the world better, you know. So much bad feeling in life comes from misunderstanding. That you're brave enough to be open about the whole picture, the warts n all, is a step towards understanding, surely.
More cheers for you! Hurray.
Dear Minerva I came this way via David and I'm glad I did. What you have written is really powerful and it does you great credit when you are not feeling on top form.
I commend your spirit and send you my sincere wishes and prayers - three things in which I totally believe.
Your forgetfulness after chemo will help to prepare you for when you are as old as I am. And you will be.
Pat
i just read the last line.
Minerva, Here's to you ( hoisting my glass half full)
a comment a day keeps your blues away.
As I walk by the crystal blue lake at 7000 ft (later) I will dream of the day you will walk along with us again, full of vigor and bubbling over with energy.
I don't care what side of the Atlantic, lets plan a walk through the countryside.
Good post.
There also and excellent article here, "angels and bolters" see here: http://www.cancerlynx.com/angels_bolters.html
All I can say as someone three and bit years out from initial diagnosis and treatment is that it does get better again. Chemo is such a tough time, you are mentally and physically exhausted and trying to anticipate what is still to come. And worst of all you've lost your peace of mind, and that's the cruelest cut of all.
I lost some friends, and sadly family along the way, but I made new friends too, and all of my true friendships have endured.
The best thing I can say is to offer practical help, shop, or cook a meal for the freezer, take the kids out, walk the dog, or better still don't offer, just do it! And above all listen before offering an opinion.
It's hard to see someone you love suffer, and some people handle it better than other. My pride was hugely offended, I'd always taken care of my family, and not being able to do that hurst the most, and I felt like I was inflicting my illness on them too and that made me difficult to be around, and on top of that I was tired, sick, sore, scared and mad as hell.
Breast cancer is a severe life laundry, no question about it.
Good luck with everything.
I wrote about my year, the mastectomy\node clearance, and a year of chemo and rads here:
http://www.cancerchronicles-apprentice.blogspot.com/
Best wishes
Anna
PS My friend had a local recurrence and it responded to treatment and she now back working and has been clear for a couple of years.
I didn't appreciate you were dealing with one as another friend just passed on your comments page - so if my last comments seem like those of an eegit please forgive me.
I too have been told my clavicle nodes are the most likely site for a recur, although they did include them in the rads fields as a precaution. I had 11/13 positive axilla nodes and vascular invasion, etc,etc.
Anyway good luck with this, it's a bugger to get such an early recur, but as you say there much still to play for.
Hang in there.
Anna
xx
Your spirit amazes and inspires me, Minerva. I'm printing this entry - as I have so many others - and adding it to my shoebox of must-reads.
I keep hoping that by reading your words, some of your courage and humanity will rub off on me. Here's to hoping...
Hugs all the way from Phoenix AZ. I think of you often and can only imagine what you are going through.
I am glad that you have this blog to put your feelings into words.
Take care xx
Hi, Minerva: If I were in London, I wouldn't hesitate for one moment to ring you up to get you out and about for tea and to get caught up as a new Blog Bud! This post should be required reading for anyone to graduate from High School into Adulthood (and I mean this as a compliment!). I've had 4 members of my family with Cancer (including my Mom). Plus, I dated a girl with Lupus for 3 years and I witnessed 'first-hand' the reticence you have described here. People can be very ignorant. And that ignorance hurts deeply to the afflicted person; it is quite cruel. However, from the number of comments I see here, you have touched a nerve with people who care, though we have never had the pleasure to meet you in person. You can rest assured that if I ever get to London, I will ring you up without hesitation. And with great pleasure!
Very honest, honey. I hope your friends all read that, as well as your blogbuddies.
I had a member of staff whose wife had breast cancer, and I would add - if you're in that position, give your staff all the time they need and any other support you can provide. Don't be afraid to ask what they want or need.
We're still listening, Min....
cq
I will remember your advice in case I ever need to use it. Thanks Minerva.
M, you have quite a pack of good blogfriends here - I am a tad envious. I am off to church, to seek the strength that comes from the creator.
And always remember to call from the back of a cab when visiting London... ;)
Seriously, this is brilliant. You have said it all so incredibly well. This should be posted in every hospital in the world. Everyone needs to know this.
We experienced a bit of this during the past week as we've had a death in the family. It's interesting to see the people that immediately came to our aid and those that were so afraid to bother us. I think I'm now figuring out how to pass it along to the next person that might need my help.
Thanks for writing this. Oh and know that you're still in my daily prayers.
Hugs from Wisconsin...
Minerva...this is a terrific post! You know I am pretty much confined to my home and I used to be a very active person out in the world. It is a lung condition that makes me very vulnerable to any kind of infection or bacteria...So, I must avoid crowds of people--and that could be three, or in fact, it only takes ONE, if that one happens to have a cold or thinks they are getting a cold. My situation is not nearly as precarious or difficult as yours, by any means, my dear...But, I so resonated to a lot of what you said in this post. I can have visitors you see, if they are "well"....but what I have discovered over these two years is that many people are reluctant or scared/worried that they might give me something...(I have no cleansing system in my lungs anymore so if someone has a cold...the strange germs they may be carrying would give me a horrible bronchitis or worse...) and because they worry, I see very few people. And I discovered that people are very busy with their lives, too, and so because I am off the radar, so to speak...unless I ask them to please come visit---(and I find that hard, too) they don't. I only speak of my situation to say I dearly appreciate your dilemma where your physical vulnerability is concerned, and understand it in a very small way. A always,
you expressed everything you said in such a clear and wonderful way...Thank You for that. As always, you share from your heart.
Dear Minerva ~~ A wonderful post with good advice for all of us who have friends or family suffering severe illness. My thoughts and prayers are with you as you are one very brave lady. May all these troubles be behind you very soon. Love, Merle.
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