Jenni

It’s nearly time.

Jenni, we love you, we miss you, we wish you peace and freedom from all the pain and suffering. Goodbye, good friend.

David, you will always be welcome here with us.  We send you strength, and the freedom to admit weakness, and most of all, pure, simple love, the love that all mothers have for all children, and that you and Jenni have for Jack and Jamie.  May little Jack grow up knowing how important his mother was to women all around the world, and how very much we learned from her.

Peace be with you all.

Jen Ballentyne

Our friend Jenni Ballentyne has entered hospice.  It’s a good thing, my friends, for she is able to relax and be cared for, although of course it is a signal that all is not well.  All hasn’t been well for Jenni in a long time, though.  If you’ve ever read her blog, you know that.  You know that she has suffered in ways that most of us will never have to suffer.  And you know that sucks.

Because it does.  There is no good way to say this.  Cancer sucks.  Her kind of cancer has its own special horrors.  But Jenni has persevered through rounds of treatment, surgeries, crises, and indignities that no one should have to face — and Jenni has done it with a determination and a will that awes all who know her.

Jenni loves her children, Jack and Jamie, and is singlemindedly focused on what’s best for them and their future.  She discussed that in a comment this week, talking about her decision not to try maintenance chemo again, knowing that it will not significantly prolong her life, and it will make the last few months miserable.  She says it better than I could,

The chemo affects you so badly that you don’t even want to talk to anyone, you can’t lift your head, I mean I just don’t see the point. Say I have six months, say chemo will buy me an extra three, but the entire nine months will be revolting. Not worth it. The price is just too high. If it helped my kids then I’d do it, but it doesn’t help them to see me so ill that I can’t lift my own head, there is absolutely no good to come from that at all…. Leaving Memory Boxes, letters, just sweet, special things for my boys is my priority now and I am building on that each day.

And once again, she inspires me as she walks the difficult road that is life after a cancer diagnosis.

Go give her some love, will you?  She has plenty — oh, she has so much love — but it will make you feel better, just to be in her presence.  Pinky swear.

Go.  She’s worth it.

It’s Been A While…

Hello all, I know this is a bit of a surprise, me doing a post after so very long and I realize I am being very presumptuous in thinking I am still allowed to post here at all but I did see that my picture and my name are still on the site so I took that as permission for now.  Thank you if you haven’t decided to get rid of me and if you have well then this post can be deleted I guess.

Anyway, here I am, wondering what on earth to talk about, I guess I will discuss what is on my mind lately and that is pain! The battle I have had with ‘cancer pain’ is just incredible. Early on in this disease, I was informed that no-one need suffer pain in this day and age. That no-one suffering cancer would have to put up with pain for long. Well, let me just tell you that that is a load of absolute….you know what! I have been battling acute and chronic pain for years now.  I have had a break here and there during those years, however, for the most part I have suffered relentlessly. I have nerve pain, the main tumour, which is in my pelvis, is touching the nerves in my lower spine. When it first started hurting it was horrible, but, I had hope. I had hope and that hope was founded on so called facts. Facts I had been fed by the medical profession. Huh, ‘facts’ my behind (literally lol). They had told me that I would not have to suffer pain and here I am two years later and still suffering agonizing pain. It is so bad I can only compare it to childbirth but without the reward at the end and without the breaks in between contractions. So bad, that I have been reduced to a sobbing mess writhing around on the kitchen floor. So bad that one time when my nurse was present, seeing me suffer like that reduced her to tears. So why was I allowed to continue on in this amount of pain? Well because it is nerve pain! Nerve pain is a different kettle of fish. Well, of course, when they told me no-one should have to suffer pain they didn’t actually mean nerve pain, oh no, that is terribly tricky to fix. The main way to ‘fix’ nerve pain is to use so many drugs and such strong drugs as to render you almost unconscious and even then, when the room is swirling and you think you are Nicole Kidman chatting at an afternoon tea with Brad Pitt, you can still feel, way down deep……..nerve pain. Admittedly it is a lot less violent but still there nevertheless. Now, yes, the pain is much more bearable but do I want to spend the rest of my days semi conscious thinking I’m Nicole Kidman (well that may not be all bad) but come on, I have a child living with me, I cannot function when I am off my nut on ketamine and methadone and pregabalin and I could go on and on but you get the point. Not only do I need all these medications, they are extremely difficult for me to get.  I have to pretty much jump through hoops to get my hands on both methadone and ketamine. I have to get the ketamine an hour away and I have been going through it so quickly that it is ridiculous the amount they give me in the first place. Same with the methadone, that is not an hour away but it has to be registered and oh, all sorts of crazy things before I can get my hands on it. I have to have a certain amount within a certain amount of days and if I need more woe betide me! That throws everybody into a spin. The problem is, the pain doesn’t just co-operate nicely into time frames for me, of course sometimes it is worse than others and sometimes it comes on more often than others and then I need different amounts of medication, honestly you would think I’d asked for a small country to be given to me. What a carry on! So this has gone on for quite some time now and I am coming to the end of my tether. All these drugs aren’t working well enough and all the hoops I have to jump through to get them is simply not worth it anymore. However, I have to have something done about the pain. I am seriously considering marijuana. I haven’t resorted to that yet but I feel the medical industry is letting me down and I have read of other people with cancer pain taking marijuana and having good results from it. I don’t want to feel strange or anything, I just want the pain to stop and I am getting desperate. I am probably being over cautious and should have turned to it months ago but I just felt weird taking what I have always known as a recreational drug, as a medicine. Guess what ketamine is worth though as a recreational drug… heaps! So, I don’t know, I will have one more appointment with my Pain Doctor and I’m actually going to run it by him and see what his reaction is and maybe, just maybe, I will give it a go – I’ll be sure to let you know the results if I do. What do you all think about using marijuana for cancer pain? Let me know in the comment section if you have time, I’d be very interested in your opinions. Take Care.

Lost in Thought…

Wow, it’s been such a long time since I have written anything for this wonderful site and I feel quite bad about it actually, however, it is what it is and I can only continue on and try to be as involved as I would really like to be from now on.  I am honored to be a part of such an inspiring, generous, sharing, educational site.  I consider myself very lucky to be still able to participate when I can.

So, enough about all that, now that I am back I will fill you in on what has been going on in my journey with cancer.  I can tell you it has not been easy in any way, still there have been  blessings along the way which have been most timely.

I think where I left off was around the time I was due to have an operation called a ‘pelvic exenteration’.  Well that didn’t happen.  Oh, I went into hospital alright, even got put under the anesthetic, the surgeons started to do their thing, opened me right up and I mean I am cut from just below the breast bone right down to the pubic bone.  Once they got inside me and could see the tumor and what it was attached to they were shocked.  Apparently it took them over eight hours deliberation on what to do and they decided they couldn’t do anything because all of their options would have risked my life far too much.  So much to their chagrin, they had to just sew me back up and take me up to recovery, where my surgeon was good enough to be there when I awoke to tell me the bad news himself.  I was shocked to say the least.  Devastation came later when I was strong enough to support that emotion.

From that point things went downhill fast.  I was stuck in hospital recovering from a surgery that never needed to happen, I had my CT Scan which was due, I had already had a CT  scan before the surgery at Peter MacCallum so it wasn’t long between drinks so to speak….and in that very short amount of time, the cancer which only approximately 8/9 weeks ago was completely contained within my pelvis which is why this surgery was an option for me in the first place…in that very short amount of time the cancer managed to travel to my lungs, there are 7 tumors that we can see clearly and there are other tiny pinhead type ones!  OMG!!!  I was frightened, I was overwhelmed, I was angry and so hurt, don’t ask me how feeling ‘hurt’ comes into it but it did or rather, does!  I felt as though if you touched me I would bruise that’s how sensitive and sad I felt.  This was when I really, truly felt as though the cancer had won.  I was going to die.  Soon.  Too soon.  My oncologist (who by the way hates giving a prognosis like this and was not exactly forthcoming) told me that I would have anywhere from 6 months to two years.  Two years but no more than two years, no definitely not more than two years!  Two years I think to myself rapidly – Jack will only have just turned 9 – far far too young to lose a mother!  I want somebody to wake me up and tell me this is a horrible tragic dream, please, please tell me that, oh how I wish.

I find myself looking at women who are older than me and thinking why?  Why did you get to live all those years and another woman dies before she even turns 40.  I am not just thinking about me here either, I am thinking why and what makes some people get this awful disease and others don’t.  There are no answers to my question really, you can argue lifestyle versus someone elses but really we all know someone who has smoked all their lives and not gotten lung cancer.  I have met people in the chemo ward who have never smoked, drank, eaten junk, who exercised daily and really took great care of themselves and guess what…yep lung cancer – so you really cannot judge, it seems completely random in who gets it.  Still I do look at people and wonder and I guess I should be really honest and say that I actually envy them.  I am not proud of myself for that but it is the truth about how I feel.  The other day I saw a mature age woman outside her lovely home on a beautiful sunshiny day just trimming her hedge and tidying up her lovely garden and I was oh so envious that it took my breath away.  I just wanted my health back so that I could get out in the garden and play, I want to continue to live in a lovely home with a beautiful garden doing lovely things until I am an old woman.  So you see I have been struggling to accept the fact that I am going to die and I really want to do it graciously and bravely and not look at other folks and feel envious but it is so difficult right now.  Anyhow, enough of the pity party, I don’t want this to be a ‘poor me’ thing that’s not what it’s about, it’s about sharing with you honestly, what is going on in my journey with this cancer.  How it is affecting me and my children, it is taking so much from us and I guess I just don’t know how to accept it !  It has been making me angry but I suppose this is just another stage.  I am sure that these ‘stages’ return often during this journey.  I hope I will get to a place like I hear others can get to and that is to not only accept my demise due to this cancer but to actually be grateful for what it’s taught me and be able to say I’m a better person because of it.  I honestly cannot see that day coming any time soon but I know some people actually feel that way and I always think how much more highly evolved they must be than me with my attitude of anger and hatred towards cancer, my lack of acceptance at the loss of my health and energy.  I totally agree with the saying that ‘without your health you have nothing’, it is true, it eats away at everything you enjoy and love in your life and you are left with a longing for how things were, a longing to be able to do the things you did before with your children, a longing to be out of pain so you can actually enjoy watching them play, instead of writhing around trying not to let them know the agony you are in and yet are unable to hide  as you fumble for your pills with shaking hands and sweat dripping down  your forehead.  You become someone else, someone you never ever wanted to be in front of your children, someone you swore you would never be but when pain and agony hit you that hard all you want is to be put out of your misery then and there and it’s not fair because it’s the pain making you that person, you are not that person, you want to live a vibrant and full life but are reduced to a snivelling wreck begging for drugs and if you think I’m lying or exaggerating, then you haven’t been in real, chronic, agonizing pain.  Anyone who has, knows my words ring oh so true!

Anyway, it’s not pretty but there it is, that is how I feel and I see no point in pretending otherwise.  People come here to read our experiences and I guess I don’t want to pretty it up or make it something it’s not.  I may come out of this stage, I don’t know but for now what I am feeling is very real and very tough.  I did hesitate to share this post but decided that we are here to share all aspects of cancer and our feelings surrounding it and this is how I feel right now.  I don’t mean to be negative and bring everbody down but honestly it’s a part of the journey and I think it needs to be shared.

heartbreaking

Our own beautiful Jen, from the Comfy Place, wrote a post that really got to me today.

“Last night came thoughts about how dying of cancer is in some ways a kinder way to leave those you love behind. It gives those we love time to come to terms with our demise well before it happens. I have even had my Mum remark that she feels she has been grieving whilst I am still alive. One of my close friends has said the same thing, in a sense. She says she has grieved already, she knows it will continue in fits and starts and she is sure that when I do finally pass she will grieve again but I have noticed how people seem to come to terms with their loss whilst the person with the illness is still alive and with them. I believe this is because they can think about it, as horrid as it is to think about the world without that particular person in it, they can think about it while safely knowing that the person is within touching distance or a phone call away. Then it came to me how children may not get this option of slowly grieving whilst the person they love is still alive. I think because we tend to protect them and want to shelter them from anything painful but I believe in cases like this, we are making it harder on them when the person does actually pass.”

Jen needs to have a talk with her sons, one that I have often thought about. She is brave and strong and thoughtful and loves her boys passionately.

There was a time, not that long ago that I thought a similar conversation with my own boys was imminent. Jen’s honesty is inspiring and I will think of her when my time comes.

But I grieve for her tonight.