Thursday, 12 June 2008

At The Risk of Repeating Myself...

Okay it has become apparent to me that some of you haven't heard my story of the 'cancer journey' in it's entirety. I know this because some of you very kindly followed me over to the new blog I am an author on and in the comments a few of you said that you hadn't ever known the full story before. So, I have decided to just copy and paste it here for the readers that don't end up getting over to the new site (hmmm come on get over there and support it grrr lol!!), maybe hearing my story properly will inspire you. Not only is my story on the new site but also stories from some remarkable women fighting cancer. Anyway here is the post that I introduced myself with on the new blog. I still haven't covered everything because it would just take so long to do it justice because so many, many things have happened including the pain and my treatments in hospital and hospice etc, etc but it is the most comprehensive explanation I have ever written and it is all I have at the moment - maybe one day I will try and do the full story properly.

Hi There and Welcome to My Story.

Well, firstly a big welcome to our brand spanking new site. What do you think? A wonderful idea huh? I think we Mums (we spell it with a ‘u’ in Oz) can use all the help we can get raising kids. You know the saying ‘it takes a village to raise a child’ I believe that is so very true. The thing is when you add cancer into the mix, well you need one heck of a lot of support. It is almost impossible to keep functioning as a Mum, trying to protect our children and keep things running smoothly. This is a blog to support Mums that are doing it tough or have done it tough and are now helping others to get through the chemo, the radiation, the surgery, the fatigue, the pain, the emotional distress, and very often depression and/or Post Traumatic Stress Disorder.

My name is Jennifer Ballantyne, I am now 39 years old. I have two children one is 20 (shock, horror) and one is 6. I was diagnosed with bowel/colorectal cancer almost 5 years ago. It was the most terrifying thing I have ever faced and still is. My symptoms didn’t show up until the tumour was quite large, the size of a golf ball actually by the time the surgeon found it. Some of the symptoms that eventually showed up were things like, fatigue, I lost my desire to do things like I used to - I was really dragging the chain. I won’t go into too many details about this but I was horribly constipated, I now know that the tumor was partly blocking my bowel. I used to have to drink the stuff that people drink before a colonoscopy just to be able to go to the toilet. I would not be able to go otherwise which I can’t tell you how horrible that is. I know it’s not the nicest topic but I am not here for niceties I am here for the hardcore truth about cancer, my cancer anyways. My stomach was absolutely huge, I was so uncomfortable and then when I could go after drinking the drinks, there was blood in the toilet. I went to so many doctors before anyone diagnosed me correctly. No-one believed I could possibly have bowel cancer at that age. At that time in our country it was known as disease that men over 50 mostly got, not young women of 34. I even had surgery done for a fistula which had been caused by the tumor, although no-one knew it at the time, while they were fixing the fistula, the tumor was a matter of approximately 1Cm away and they missed it, can you believe that, they were right there operating and didn’t see it. If they had of found it earlier I might have been saved!

Finally someone booked me in for a colonoscopy, I woke to find the doctor sitting beside my bed looking so sad. He then very gently told me the news. I asked him to call my mother and she came to pick me up, he explained it to her also, although I don’t think she really took in the seriousness at that time. From there I had to have chemo and radiation to try and shrink it before surgeons could remove it as it was so big. I underwent some pretty tough chemo complete with a ‘pic’ line which is a tube they inject into one of the veins in your elbow (front of) thread it all the way up the vein in your arm and it ends in your chest. The chemo gets attached to this and you have it pretty much permanently, a few days off here and there where they disconnect you and then you go back and get hooked up again. Then I had six weeks of 5 days a week strong radiotherapy which burnt like heck and, as it was my butt, I had trouble walking and sitting, you can probably imagine, it is an area we use quite frequently but don’t think about. Then came the surgery, I was operated on in a surgery that lasted 7 hours. I was cut from pubic bone up to just below the middle of my breasts, I was given an ileostomy which is a bag that you poop into. That was supposed to be the good news as an ileostomy is reversible. I also woke to find that I couldn’t urinate on my own anymore. I found that out the hard way by my bladder nearly bursting in hospital because no-one believed that I couldn’t wee on my own. Finally I was given a catheter which hung down my leg to just above my knee, I wore that for about a month (yuk) and then went to a specialist where I was told that the nerves were damaged in the surgery and it was unlikely that I would wee again on my own. I was shown how to catheterize myself at least 6 times a day as I had no sensation of when I needed to urinate. I have done that for 5 years and continue to do so. I had to have more post operative chemo in case the cancer had spread because it was found in lymph nodes. Then a few months later a tumor was found right near the original site, now I was eligible for a clinical trial which my oncologist encouraged me to do so I did. For 8 months I was monitored and I had to do paperwork and have the Avastin that was the drug they were trialling it did shrink the tumor significantly and I was monitored for about another 8 months during which time the tumor didn’t change at all. Next the cancer spread to my liver after about 8-9 months of feeling like I might be okay . So next the cancer is in the liver, scans showed that again very luckily they were not clustered, there were 3 of them completely separate which meant they were operable which was so so lucky. I then went through liver surgery. I woke up as weak as a kitten, I literally could only whisper for a couple of days. Anyway I felt such happiness when I woke as I naively believed that I would be okay now that they had cut out all the tumors. I can’t explain to you how good that happiness felt. I was like a person who had been let out of prison for the first time, I thought that now I would be there for my baby and I could help others and I would do so many wonderful and amazing things, like being able to go and help out at my sons school, start a support group here etc, etc. It was like I could breathe again! It was that happiness that let me know how very unhappy I had been, how scared and worried, I had just tried to bury it and focus on getting through all the treatments. Anyway it was short lived happiness as the surgeon came and told me that “unfortunately” (hate that word) the tumors had spread to lymph nodes around the liver, he cut out all that he could find but we couldn’t be sure that the cancer hadn’t already spread somewhere else or was on it’s way at the least. My happiness simply evaporated, there was nothing I could do to get it back, but oh how I wanted that feeling back, it was the best feeling in the world.

Okay I then had another 6-7 months of relative peace when I was found, via a scan, that the tumor in the bowel was active again and growing “Unfortunately” (again) the surgeons couldn’t operate again as there was no room and this time the tumor had gone outside both sides of bowel wall and there just wasn’t any room left to operate. I also couldn’t have any more radiation treatment as my body had had all it could take the first time. If they over do it, it wreaks havoc with your bone marrow. The only thing left for me was chemo and a drug I had had before named Avastin. The Avastin was approved everywhere else in the western world except Australia so I had to pay $25,000 dollars to have it. My oncologist said if it was his daughter he would definitely get her Avastin, so we did, when I say we, my Mum had to help me pay for it as I just didn’t have the money after being unable to earn a proper income for so long, thank God for her huh? The Oncologist and Surgeons both say I am lucky to be alive I should have passed on a long time ago, they say they can only palliate me now and have given me 7 months without treatment, with treatment anywhere up to 3 years but definitely not 5! I don’t know what to make of that or where the statistics come from or how they are done, is it mostly old people that get this disease, I think it used to be but not anymore, so perhaps he has already allowed for the fact that I am fairly young, or maybe not. Anyway I try and continue to think positive but at the same time I have had to go to the place where I might die and what I need to do before then so that I don’t waste whatever time I may have left. I know this is very long winded but I really wanted to include everything so you get a picture of how much I and others have been through because of this disease so I didn’t want to leave anything out. I could go on longer as there is much more I could say I haven’t even touched on the debilitating pain that goes with cancer and cancer treatments but I will save it for another post. Currently I am in the middle of chemo and Avastin treatments and hoping dearly that it will get rid of the tumor for a very, very long time. Thank you for caring enough to read this. I wish you all well, take good care of yourselves and each other.

Edited to Add: I forgot to add whilst I was typing out my story a rather important detail I think that may be helpful to other Mothers and that is that I also was sent into early menopause, (I was 34) my very first chemo treatment was my very last menstrual cycle. Of course I had to deal with all that went with that including the crazy, messed up hormones, the sweats and flushes and also the awful truth that I could never have another child. Not that I would have because of my cancer but still it was rather a daunting truth to get a handle on. Anyway I just wanted to add this in case any other Mothers reading went through similar and would like to discuss any aspect of this with me. Thanks and take care.

13 comments:

  1. Jen, Before I read this I didn't know your whole story. Now I think your spirit is even more wondrous! One thing it does make me think though is that doctors certainly do not know everything. And they can't say how long you'll live. In the literature of healing there are many, many stories where people have recovered health unexpectedly. My own father is one. He was diagnosed in the fifties at the age of 34 with an 'incurable' cancer. In those days they didn't have drugs and he said they had no idea how much radiation to give him. Long story short—he lived to the ripe old age of 88 and in excellent health up to the last couple of years. So, onwards, dear Jenni! We are with you in all your desires!

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  2. Wow.

    I'm not really good at talking after all that information, but hugs! I'm good at virtual hugs!

    A dear friend of mine had ovarian cancer and should not have lived, that was five years ago and she's fine.

    sending love from the other side of the world,

    SL

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  3. After I read your blog several weeks ago, everytime I start to complain about something, I have to say Lord, forgive me. You are such a strong person and I pray for you daily.

    Nancy in North Carolina

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  4. Jen, Until I read that post ~ I had never read the full story either. Thank you so so much for sharing that, I feel now I can understand your journey much better. I hope and pray that your journey continues for many many many more years ~ my dear friend.
    My thoughts, prayers and lots and lots of love are with you.
    Take care ~ Tabitha XXX
    PS ~ I am popping over to the new blog tonight (when the kids are in bed) ~ to have a readXXXX

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  5. Jen, I have a token of my esteem for you on my blog.

    I love You.

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  6. jen-
    thanks for sharing your story!!

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  7. I saw your link to Freerice and I thought you maybe interested in hearing about another great charity site called AIDtoCHILDREN.com. It donates money to children in need through World Vision.

    Check it out at http://www.aidtochildren.com

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  8. I hope today is a good one for you and pain free, Jen.
    Hugs ~
    Alexandra

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  9. Hey Jen,

    Your story blows me away, even on the 2nd reading. It makes me realize, again, just how strong you are...in mind, body and spirit. That body of yours has been battling mightily for you, led by your indomitable, sweet spirit. I'm in awe.

    Much love to you, Jen.

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  10. Hi Jen, how are you doing? Just stopping by to say hello. I hope you are doing good today and it's a great day.
    Love, Muneera

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  11. jen; what can i say? the sky look at you and see the face of a brave girl. i´am budhist death it´s just another life.
    move on. and write to me if you want

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  12. So glad you are in a happy place... :)

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