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.