I know I haven’t been what you would call forthcoming with posting on this site up to date and I feel I must admit I have been finding it rather difficult to know what to post about here. Apart from sharing my diagnosis and what that entailed, I have reached a brick wall. At first I wondered whether it was because I felt intimidated by the quality of the writing here, which would be perfectly understandable, and I guess it was a bit of that but I talked myself through that and came out the other side. There was something more to it. I think that because there are many stories here of such bravery and strength, stories of pain and sadness I wondered how I could possibly have anything to add. I mean, I had told my story, most of it – up till the time of writing anyway. So what more could I add? I couldn’t write about how it feels to have lost my breast or breasts because I still have mine, is there perhaps a little bit of guilt as I am surrounded by women on this site who have all lost breasts, or breast, or are in the process of losing them. I sit here with two perfectly good breasts, sure they are starting to droop a little as I approach 40, but, nevertheless, I have been blessed with what I guess you would call ‘good’ boobs! I find myself trying to imagine what it would be like to lose them or one of them and I just can’t quite get there, not fully. All I can come up with is me having to have an ileostomy, which although figure changing, and very difficult for many women to get their heads around, it is still not quite the same as losing breasts is it. But, as I write this, I suddenly realize that, no, it is not the same at all, and that is what makes writing about my experiences worth while! I have literally only just worked this out as I type it now! This is not about whether I write well or write often or anything to do with how anyone else writes, it is about me sharing my experiences in order to help other women! The very fact that my cancer is different and stands alone (so far) on this site is the very reason I must write about it and how it feels and what it entails and every detail I can include – because there could be women out there who come to this site wanting support and information on their particular cancer. I know that is what I wanted when I went to sites for information. I will just clarify one thing before I go on, I do believe there is definitely a solidarity with other women who have cancer because of the cancer, not because of where it is and what type it is, nothing can change that and I believe that is how it should be. It is the cancer that is the important issue and where it is should be secondary to that. However, in saying that, I do think that it can be very helpful to be able to read or gain information about your particular type of cancer, simply because you can relate to it more easily. So, having clarified how I feel about that, I can move on without giving the wrong impression. I think it would be wonderful for this site to have contributors who have many different types of cancer. (Obviously I don’t mean that I wish more people had cancer, just that those that already do would come and share their different stories.) The more types of cancer written about, the better, as more women can be supported not only by an entire site of amazing, empowering women with cancer but also women who are dealing with or have dealt with their particular cancer. I think the more we can learn about cancer in general, the better, the more we can learn about emotions and the details of living and dealing with all the different types of cancer, the better. It would result in more tolerance, more understanding, less shame, less inhibitions about the often ‘body changing treatments’ we go through in order to try and stay alive.
So, I guess after thinking all of that through, I should be able to share more, realizing that it doesn’t have to be terribly interesting to all who read it, as long as it contains some information about my cancer whether physical or emotional, then no matter how simple I keep it, it may be of some value to someone- really, if only one person benefits by me discussing my journey with cancer, then it is worth doing, which is the same reason I ended up talking about my journey on what was, a simple scrapbooking blog, now the stats say I have around 2,000 readers a week, 300 odd people per day! That amazes me, but it also tells me that people like the simple truth, I don’t need to be a great writer (thank goodness) just to write about what it is like coping or even and especially, not coping and living and mothering with cancer.
Now, although an ileostomy, (that is a bag you wear on your tummy and it catches the poo, nice huh!!) is not the same as losing a breast or breasts, it does come with it’s own unique set of body image issues, management issues, health issues and quite frankly it’s not really something you would ever choose to have unless it were pretty much a life and death situation, or if you had been living with excrutiating pain for a very long time. I can tell you that when I first woke up with one (a bag) I was shocked and horrified. However, I determined that day, that I would get a grip on this and handle it in a positive way. There were a couple of people whom I could talk to about my fears and disappointments and I did as I believe it was a healthy way of dealing with it. It is a very real image change, quite startling in intensity actually. To go from having a young(ish), slim, quite pretty figure, and then to wake up with an ugly brown, large ‘bag’ attached to you that is full of well….shit!…is really difficult. (Not to mention the huge scar from pubic bone to breast bone). It is definitely ugly and not only does it look ugly but what it is there for is ugly too, to catch the ummm..sorry..shit! That’s the plain harsh truth of it. So, I understand completely what it is like to have a body go from one certain look to another that is not at all attractive. Luckily I was able to deal with it. A lot of women can’t. I personally knew one woman that died last year, the entire time she had that ‘bag’ she hated it and she just kind of gave up on life largely, I am sure, because of the bag. She felt embarrassed and ashamed and never learned to accept it, right up until the day she died. Part of what I want to do and this is what I wanted to do on my original blog, is to help take the mystery out of ileostomies, well all kinds of stoma issues actually. I want to acknowledge that yes, it isn’t the nicest thing that could happen to you – but you can learn to deal with it and find ways to make it less intrusive and less embarrassing. I really do believe that if folks discussed it more openly it would not be conceived as something so abnormal and freaky. I think that more women would be able to get their heads around it and fight to live a reasonably normal life. Anyway this post is so long I must stop, I do have a lot more to say on the subject and I will but it will be in the next post. Okay, thanks for bearing with me, take good care of yourselves and each other.
Posted by marybethvolpini 
Mothers With Cancer 