Late last year I went to my GP and discussed with him how I could go about being screened for any possibilities of having cancer in the future. You've heard of the forms you can fill in which then get sent back to genetic research experts who calculate your chances? Well, it was one of those. The people in the correct department obviously felt that I could be a risk as they agreed and sent a form out for me to fill in and return within two-three months.
It's still sat in my kitchen, not filled in.
Why?
You're probably thinking that it's daft isn't it? Just fill in the form and send it off; forewarned is forearmed of course. And I do like to be prepared for the unknown so it makes perfect sense to fill it all in and find out if I could be susceptible to developing cancer in the future.
Yet I can't fill it in. It is a ridiculously complicated form that I need to find out dates etc. for all incidences of cancer in my family, and there's been a lot of them. All of my grandparents died of cancer and my maternal grandparents' siblings have died of it. Pancreatic, breast, stomach, oesophageal; you name it, they've had.
My dad has had cancer three times in the past eight years; bowel, liver and lung. The most recent was in March.
My sister has spent the past eleven months battling an aggressive form of breast cancer.
Cancer is raw.
Cancer is debilitating.
Cancer reaches wide through a family, ripping at the hearts and guts of family members, the uncertainty, the fear of the unknown and unpredictable.
What's caused it?
Why him? Again?
Why her?! She's never put rubbish in her body, she is the picture of health. Why? When? How long? Will it go? Will it come back? Why didn't I treasure our times together more in the past? Did we need to have that argument? Does it matter now? What about that time when I said that thing?
The overwhelming and gutwrenching moments grasp you when you don't expect it. Singing in the shower and suddenly you realise that's not water, but tears streaming down your face and you can't breathe or stand up. Driving along in the car talking to your child who asks if his aunty is still having the nasty medicine which makes her tired and you have to fight the urge to pull over to the side of the road and vomit through the cold fear which has just gripped your heart. Holding your mum who is sobbing about the injustice of the situation. It is astonishingly powerful and all encompassing.
Yet you paint on a smile and keep your chin up. Take your sister to the supermarket and give her the trolley to lean on so she can stand upright. Invite your parents over for a meal so you can create a memory. Go into work and teach how to use adverbs. Mark thirty books. Put up a display. Smile in the staffroom. Weep in the toilet.
And now they've both had an all clear. No further treatment needed for my dad. Ten years of medication for my sister. They're both still here and every day is another day and another memory and a blessing. I am thankful for this.
That's why I can't fill that form in. Not at the moment.
Do I find out that yes, I may be in danger of developing cancer? And then I spend the rest of my life with that hanging over my head. Every cough or cold, every ache or pain, every lump or bump, every blood test; is this it? Is this the day when I find out I have cancer? Or do I find out that actually there's no chance of it, and then I ignore the tell-tale signs because it couldn't possibly be that! The form said I'd be fine!
I am not burying my head in the sand. I am living my life one day at a time, the best way that I know of at the moment. One foot in front of the other, smile when I can, breathe when my lungs remember to, engage my mouth to say the right things and nod sincerely at others. Take a note of any illness, weigh it up sensibly and visit the doctor if it's worrying me.
And live.
You do what you have to do… although my first question would be is there someone who could support you to get the form done and out of the way then it's not hanging over your head? Not my form though, I appreciate you must have so many feelings swirling round, understandably. Hugs x
I will need to get dates etc. from my mum and at the moment she is still supporting my sister everyday. At the moment I'm leaning towards filling it in, but the long term scares me.
Such a heart stopping and yet simply precious and stunning piece of writing. Your love for your family and the agony you have endured is spilling from every word. I am relieved they have the all clear and I hope you have The Support you need and deserve for the pain you have all felt. Sod the form for another day. Huge massive cuddles. I'll be thinking of this post for a while. Your use of language is thought provoking x
Hey lovely, thanks for commenting. This post has been in the making for a long time, you know? I just had to wait for the right moment to get it out of my mind. And you might not be surprised to learn that I finally went to the doctor on Friday and asked for help.
You must do what you feel in your heart is right, no one can decide for you or judge you on your decision. I do hate it when forms have to be so complicated!! I cannot believe how much that 'c' word has affected your family, it really is such bad luck. However, I am so pleased for your sister and your dad. That is happy news indeed and i really hope cancer will f-off now and leave you all in peace 🙂
Thanks Jenny, I really hope it realises that we've had enough now and leaves us alone. It's supposed to be 1 in 3 of us isn't it? I think we've had our fair share now.
I went through this when my Mum had breast cancer last year. I filled the form in, with her help, we went to see the specialist, and it turns out that my risk of cancer is no higher than anyone else's. Apparently because my family develops cancer later in life there's no genetic test for that yet. The BRCA1 gene causes early-onset breast cancer, not cancer that comes on post-menopause.
I always say there is no such thing as too much information. If you are found to be carrying the BRCA1 gene there are things that can be done to prevent you getting cancer. The one thing you won't get as a result of filling in that form is an assurance that you'll never get cancer. All of s have a 1 in 3 chance of developing cancer in our lifetimes. I certainly won't be any less vigilant about future illnesses as a result of being told I am simply "normal" risk for breast cancer.
When I was filling out my form, my husband played me an adio recording of a talk given by a woman who had had a double mastectomy to prevent breast cancer. She was completely inspiring. I will see if I can find a link for you as I think it would be worth you listening to it.
I am so glad your Dad and sister have the all clear 🙂
I think it's the same in our family. All were nearing if not over 60, although my mum's was secondary BC at 65. I must get mine checked though, it's on my list along with writing a will!
I haven't written a will either!
I haven't had the strength to listen to the audiotrack yet, but I will. And more than likely I will fill in the form, but at the moment I'm still struggling with processing everything.
Such a hard piece to write. Great news on the 2 all clears.
I'm hearing you loud and clear. My family on my mums side is the same. My mum, her mum, her grandma, all died of cancer. My aunt survived. There's 3 of us female cousins and given the history plus 1 in 3 getting cancer I'm resigned to the fact that I'll probably get it.
I think you have the form, you can decide if and when it's right for you. I need to get one and get screened because for me I want to know and if I need to do something preventative I'd like to try it. I've got an NCT friend who's in the same position and we've said we'd do it together.
But it's 2 years since my mum died and I've not done anything about it yet. It's one of those things that you never know whether you should find out or not.
Exactly! I think if everything wasn't quite so raw at the moment then I'd fill it in, I always said I would. But at the moment with everything still so fresh, I just can't bring myself to do it. One day.
I don't know the answer, I started reading thinking 'just fill in the form and then you are more prepared but ended up seeing your dilemma very well.
All these years of blogging or reading random womens mags and seeing cancer stories I've never really taken them in, I try not to read sad stuff if I can help it. Cancer had never played any part in my life and I sucessfully managed to bury my head in the sand when it happened elsewhere. But I've followed your updates with a lump in my throat and a many a tear in my eye for your and your family and for the first time ever can start to understand a little of the cold fear you mention.
Sorry, I have no real advice for you but I think of you and your family all the time xx
Thanks Emma, it really does mean a lot that you're thinking of us. I am hoping that now they both have the all-clear, things can settle down a little more. Not sure how much more a woman can take!
I'm a bit rubbish at knowing the right thing to say, but didn't want to read and not comment. You have to do what is right for you, but I think I would fill it in then you and your doctors have a bit more information should it ever be needed.
Sending you lots of love. xxx
Thanks for commenting lovely, it is appreciated.
It is a kind of catch 22 situation isn't it and I honestly don't know what I'd do if face with the same decision, but ultimately you have to go with what works for you and your family and really going out and living is the important thing isn't it x
It really is. Just need to remember how to do that at the moment.
This is so, so hard. It is completely understandable why you have not filled in that form. My Mum put off her fears for months whilst she was caring for her father and it was only when she was gone that she went and did something about it. I am sure you will find the strength to do what you need to do. Just when the time is right for you xx
I think that last sentence is key, when the time is right. I'm not sure at the moment that I have the strength, but hopefully in a few months time.
You've all been through so much and it sounds so so emotionally draining on top of just the physical logistics of dealing with such a thing. It's completely understandable why you don't want to just yet. Am here for you any time you want to just vent or need some support xx
Thanks so much Tas, it's really appreciated. Every message you send me is appreciated. Hopefully in the not too dim and distant future I'll have the strength, but not quite yet.
I lost my Dad to cancer, he had a variety of different cancers through his life and I kind of expect to get it myself. Having said that, I don't want to know if I'm at higher risk of getting it, I don't think I'd fill in the form if it were me.
I am still in two minds, it depends on my emotional wellbeing on any given day!
Your writing is beautiful. Cancer is awful. The form is a very personal decision and you have it if you ever decide to use it. Either way, you are living life to the fullest.
Thank you so much for your comment, this post is a departure from the norm for me but something that I just had to get out.
Oh darling such a moving post and totally understandable that you are not ready to fill it in, do it in your own time if you feel it is right x
I think I'll be waiting a little while until I have the strength, and then I will. Thanks for commenting.
Very brave post. I think its easy to read and have an opinion when it doesnt affect your family and life. I assume majority would want to know but then as you wrote do you end up living the rest of your life waiting in fear for it to come and fearing for your children being in the same boat.
Whatever you decide will be right for you.
Thank you for commenting. It is easy to say what you'd do when it's not you. Eventually I will fill it in, when the time is right and I have the strength.
Would you do anything different if you found out one way or the other? I don't think I would actually want to know. Unless I could actually make a difference to the outcome that is. Having said that, my mum has been quite ill for a while and has been advised that an operation could help but she keeps saying she doesn't want it. She lives a long way from me and I just get cross about it as there is a chance she could have a better life. I know that's not quite the same but what it has taught me is that only you can decide what is right for you.
I always try and live each day to the max. Hug the ones I love till they let go. Enjoy the simplest things in life and appreciate how lucky I am.
Hope you find peace with that form.
X
I've spoken to others who've filled it in and essentially it tells them if they're likely to have the gene which can cause breast or a gynae cancer, and then they can have preventative surgery. In that instance I can see why it's important. When I have the strength, I probably will fill it in.
Thanks for commenting, it is appreciated a great deal.
I am so glad you have had two all clears, it must be such a relief. My family has all sufferer cancers in old age on my dads side and I have to admit I've not thought about tests and probably wouldn't have one as I'd be worrying about every niggle if they said was high risk. You make the decision that's right for you and your family xx
Thanks lovely, it's a hard old decision to make isn't it? I'll get there in the end.
Sounds like you are doing the right thing for you and living each day and living your life. Cancer sucks and it's so difficult. I'm sending you lots of hugs x
Thanks for your continued support Susan.
What a truly heart wrenching piece of writing. Glad you have managed to share this and hopefully your writing it will help you to come to terms with everything that has been happening.
That is a hard choice. To fill or not to fill, pros and cons to both.
I hope you find the strength to do what is for you the right thing.
You're right Elaine, writing this has helped me somewhat and I'm starting to make waves to healing. Thanks for your support and comments.
I've waited to read this, because I knew how raw it would be. I can't give you advice on whether to fill in that form, it has to come down to you. I would advise you mentally prepare yourself for the results, before you do.
Your family has had cancer attempting to rip it apart for far too long, but your strength as a unit keeps fighting it off.
We've met on several occasions, and I think you are an incredible human being. You are honest, caring and very funny. Don't let this fear define you, your family are far more than a stupid disease xxx
Thanks for reading and commenting Jo, it's really apreciated. I think you've hit the nail on the head when you say I should be mentally prepared for the results. At the moment, I can't cope with it emotionally so I'm not going to do it, when I'm better then I will.