Happy Days…

March 12, 2009

I am just so very happy my friends, you won’t believe this but the terrible, debilitating pain I have been suffering for so very long has gone! I haven’t said anything earlier as I felt I might jinx myself somehow, I needed to wait a while and make sure that it had really gone before I passed on the wonderful news. It all came to a head a couple of Monday’s ago, the 2nd of March to be exact. The weekend leading up to that Monday was one of the worst bouts of pain I’d had in terms of not getting a break from it. I had to lie down most of the week and then that entire weekend I could not get off the couch for more than about 2 minutes before the pain would start and I would have to race back to the couch and lie down because I couldn’t stand it. I was getting very depressed and was thinking I’d have to get a wheel chair so that I could go to chemo, or anywhere else I needed to go. Anyway I put up with it all weekend as there wasn’t much I could do about it. Monday morning I phoned my pain specialist and told him where I was at and he suggested that I come into the unit (hospice) undergo some drug therapy and hope that that helps. I told him I would think about it. I got off the phone utterly sick and tired of the same answers that never seemed to work for long enough and always involved me having to go on heavy drugs. As I was thinking about all of this, I suddenly remembered another tablet that my pain specialist had told me to try a few weeks back. I didn’t end up trying it because I didn’t like the side effects that went with it and frankly I didn’t believe that another tablet was the answer. Well, I decided that I may as well give it a try since I was only going to end up back in hospice on strong drugs anyway. I took one that lunchtime and another after dinner and by later that night was out of pain. Little by little, day by day, the pain got less and less until it has been completely gone for four days! I am just so thrilled and really amazed too as I would never have believed that taking that one extra tablet would have made such an enormous difference. I am just so very glad I remembered the tablet and took it.

The one good thing that has come out of so much suffering is the enormous capacity I now have for joy and peace. I can feel joy so easily. The most simple things can delight me and I feel so warm and happy inside. I am so very grateful to feel comfortable, I revel in it and I can now enjoy the days of my life for however long I’ve got left. I didn’t want to waste a moment in pain and agony especially when my time was so precious. So, that is the latest news and so nice to share something good with you for a change, take care everyone…
Oh and I didn’t even need the marijuana!


It’s Been A While…

February 23, 2009

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…

December 19, 2008

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.


Been to Peter Mac…

August 18, 2008

Crossposted from my blog The Comfy Place.

Hi there dear ones, well, I had my much anticipated appointment with the surgeons at Peter MacCallum Institute yesterday afternoon. I am still a little numb as I write this so forgive me if I sound as though I am on auto pilot. This is what I was told, I can have surgery BUT not the full kit and kaboodle. What this means is that, no they cannot cure me! (sob) Yes they can buy me some quality for the time I do have left. In order to buy me this quality they have to do the same operation they were originally going to do but a slightly less radical version. What this entails is that they don’t need to take my vagina, well, only a part at the very top where the cancer is pressing it’s way through but not as we first thought the entire thing from the vulva which would have required reconstructive surgery. So that is something I guess! Secondly, they don’t have to take my bladder which means I won’t be left with two bags. Another good thing! What it does entail is still quite radical, I will lose my lower spine, (tailbone), my entire bowel and rectum, everything that you would lose in a hysterectomy plus a bit more, so muscle and some lymph nodes etc. It still requires reconstructive surgery for the rectum which they apparantly take muscle out of one side of my abdomen and make a sort of flap that folds over and creates a false rectum (I think that’s right, it’s a lot to take in). Anyway, I think what I am saying is that it is good that I don’t lose as much during this surgery but the price for that is high as I also don’t get cured. The cancer has, unfortunately, spread out of the pelvis area and has been making it’s way up towards the liver again. This doesn’t necessarily mean it will go into the liver as I understand it and the cancer that is there is tiny. My surgeon described it thus – like a field of mushrooms and he could go in and pick all those mushrooms but next day a whole new batch would be up. He did say though, that these may grow in size or in terms of spreading, very slowly, or one or a few could rear their ugly heads and cause trouble very quickly too. We have no way of knowing! So, it is not worth doing the major radical surgery because even if they remove it all from the pelvic cavity it is still elsewhere in my body, however, they feel that, because of my age, (being reasonably young lol) and because of the pain I will suffer if they don’t do this surgery, that it is worth doing this less radical surgery. Am I making sense? If I don’t have the surgery, then the tumor that is the cause of all my problems will get worse and the likelihood of chemo working on it is pretty much nil because of the amount of chemo I have already had over the years and same reason with radiotherapy. So the tumor will grow and because of where it is will cause me so much pain and suffering that I wouldn’t have any quality of life. I totally believe this as I have already had a sample of how much pain this tumor can cause. Remember I was in hospice because of it and was on an inordinate amount of drugs to try and control the pain, such a strong cocktail that I could barely focus which is no good for a mum and in terms of being here for Jack, totally useless, I may as well not be. So, they will do this less radical surgery to save me that outcome and give me some quality of life before my time is up. As I say that though, there is a chance that all these little cancers will stay small for a long time and perhaps new chemo’s will be introduced within that time, new trials, new stem cell research who knows what else may come along, so I can choose to focus on and hope for something of that nature to happen. I need hope at least, without hope it is too difficult to keep one’s head above depression. Anyway, if one of the tumors or more, does grow fast I think they believe it will be a less traumatic and painful (how do I put this) decline because the position of the other tumor would have made that decline a lot more traumatic and painful than if they go elsewhere. Some of the places they could go are lungs, bones, liver again, brain.

So, do we celebrate? No! I was hoping that if I had surgery like this I would come out of it with the absolute joy and freedom of knowing the cancer was gone from my body after all these years. I wanted that so very much I could taste it! Do we get terribly upset and feel that there is no hope? No, I make the most of what time is left, I appreciate the fact that the worst of the cancer is removed, I can have some more Avastin after surgery and perhaps am lucky enough to kill off those small suckers for a while! I watch for clinical trials, for new research being done and new ways to rid this evil disease from my poor little body. I take really good care of myself and make the most of what good, symptom free time I am granted because of the surgery. I go on a holiday with my boys, I try and do and see wonderful things with them because I know that time is of the essence but there will be that window of opportunity where I will feel good, providing, of course, that all goes well with this surgery. It is the kind of surgery where complications are not uncommon. Usually fixable complications but complications nonetheless. I will pray that I don’t have to bare that as well. The surgeon also explained to me that I would not feel as I do even right now in terms of health, for approximately two months and possibly longer. He said I will be wanting naps throughout the day, I will need help with the housework and will tire very, very easily. So I have to count that time out when I am considering my quality time with my boys. I really do believe though that after most types of surgery, if you can get up and out of bed and push yourself really hard, you will recover much more quickly. This is why the nurses and doctors do make you sit up and even get out of bed the very next day after quite severe surgery. They have realized that this helps people heal much faster. So, I will push myself as hard as I possibly can in order to get strong more quickly so I don’t waste what precious time I have left with my boys, on getting over the surgery.


Pelvic Exenteration…

August 4, 2008

That is what it is called! It is radical surgery indeed! More radical that I imagined! Here are some of the facts from Wikipedia…

Pelvic exenteration

From Wikipedia, the free encyclopedia

Pelvic exenteration (or pelvic evisceration) is a radical surgical treatment that removes all organs from a person’s pelvic cavity. The urinary bladder, urethra, rectum, and anus are removed. The procedure leaves the person with a permanent colostomy and vesicostomy. In women, the vagina, cervix, uterus, fallopian tubes, ovaries, and in some cases the vulva are removed. In men, the prostate is removed.

Contents

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Indications

Pelvic exenteration is most commonly used in cases of very advanced or recurrent cancer, in which less radical surgical options are not technically possible or would not be sufficient to remove all the tumor. This procedure is performed for many types of cancer including genitourinary and colorectal cancers.

Complications

After pelvic exenteration, many patients will have perineal hernia, often without symptoms, but only 3–10% will have perineal hernia requiring surgical repair.[1]

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It is pretty radical isn’t it? I have a LOT of questions for my surgeon before I make my final decision. One of the medical sites I researched (can’t remember which one) said that a 25-45% chance was typical! Gosh, I think I would want more of a quarantee than that. I mean we are talking major surgery here. Apparently the surgeons can reconstruct you a ‘new’ vagina during the surgery or you can have reconstructive surgery later on. I can tell you something for nothing ladies….I am terrified! I honestly don’t know whether I want to do this or not. My first thoughts on it are that if I didn’t have Jack, there is no way I would do it to myself. I would continue with the Avastin, have a couple of reasonably good years, try any clinical trials that came my way and just try to hang in there the best I could. The problem with that is, I may die in two years. I have been advised that I actually will die somewhere around there, could be less, could be a bit more. The thing that plays on my mind and heart though is Jack. If I die he is going to suffer immense pain, so much that I can’t bear to imagine it. If I have this surgery, I am going to suffer immense pain, better me than him. So you see my problem, I kind of have to do this because I don’t want Jack to suffer. I would feel selfish if I didn’t do it I think. Selfish if I didn’t try whatever chance I could get. That’s the other thing, I should probably feel very grateful because a lot of other people do not get an option to live a lot longer or even be cured which is what my surgeons are going for, a cure. I don’t know, I am extremely confused. This is all another part of cancer. It seems that it never ends. I have been through so much already, and now this. Am I even strong enough to cope with this? So many questions. I am interested as to what you ladies think about my position here. Any opinions or thoughts would be very welcomed.


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