Hello my dear, dear friends,
I have finally arrived home today, well, this evening at 6pm to be exact, and I have finished reading all your lovely, caring comments and just had to sit down and update my blog immediately. I know David has kept you somewhat informed in the comments section and I am so very glad he did. I have been on so much medication that I couldn't remember how to tell him to get into my blog so he could post and then I kept thinking that I'd be home and I'd do it myself and time just kept marching on until here we are five weeks down the track, well that's how long I've been away from home anyway. It was tough! Man, I've done it tough this time, I've gotta be honest. There was a time or two when I didn't think I'd make it home and then there was a time or two when I didn't think I'd ever be courageous enough to go home in case I died in front of my boys. It was awful but I will explain it to you as much as I can without making this post too lengthy.
First things first, it started with me waking in the wee small hours in excrutiating pain. I tried absolutely everything that was available to me, including injecting myself with ketamine and nothing stopped this pain. I finally called an ambulance just before Jack woke to get ready for school. Mum arrived at the same time and I got to hospice absolutely screaming and sobbing. There were times I asked them to kill me because the pain was just so horrendous. I just never knew pain could be like that, I mean I've given birth to two big bubbas and that was really bad and I truly thought in all my naivety that that was as bad as it gets. I was wrong. There is way, way worse and I wonder if there is any limit to pain actually. My pain specialist Brian, (my hero) arrived not far behind me and knocked me out cold. Thank God! Thank God for the fact that he could. When I woke the pain had passed and he had me hooked up to some ketamine and an IV in my arm so they could give me breakthrough medications through that but they still had to knock me out a few more times before they had a plan.
The plan involved a tube into my spine and I had a button attached to the drug bivipucain (not sure of spelling) which I could bolus into my spine as I needed it. It was fantastic. Knocked out the most horrendous of pain in less than 5 seconds. I felt nothing. Heaven. Problem was though that it was purely temporary, something to do with the tubing not being protocol and it being such a rare thing to do nowadays (here in Oz anyways) that they had no way of keeping it running on a more permanent basis. I didn't get right into all the technical details of it with them, or rather I did but my brain just couldn't retain what it kept hearing so I had to just let it go and trust. The final thing was to give me what is called a saddle block. So far it has worked reasonably well. It is not perfect and I still require breakthrough pain relief but only in the form of a very small amount of methadone, nothing like the huge amounts I had required previously and that hadn't made a difference. I need my heat pillows in the night and it wakes me but it is a walk in the park compared to what I've been used to so I'm not complaining in fact I am thrilled that it works so well. I go into hospital at, they think around 3 months and get a top up of the drug (can't remember the name sorry) and hope it lasts at least another three. So all really good there. It took a while to get organized and I spent one entire week with horrid headaches and nausea whilst I got used to the first spinal pump but after that was removed and the saddle block put in, all headaches and nausea stopped.
Next the real trouble started. I went home one night to have dinner with my sons and David. As I was walking up my front porch steps, I suddenly lost all my strength, lost my breath and needed to lean completely over whilst holding onto David. He immediately got me seated and held my head for me while I was sweating and struggling for breath, I actually thought I was going to faint and I told him that I was but I didn't, I just kept fighting for breath and strength. I must have felt the teeniest bit better because I told him I needed to move to the couch to lay down. He helped and I lay there for a short time and then told him I needed to go back to hospice. I just felt inside myself that I needed to go even though I wanted to be with my boys and Jack had a play to put on for me, I just couldn't stay, so David drove me back. It took a few days and I started having chest pain. The doctors put it down to the fact that I have lung tumors (tiny ones) and that being on a lot less pain medication was allowing me to feel what pain could have been there all along. This didn't ring true with me, however, I didn't know enough and so didn't have anything better to offer up. A CT was booked for the pain and also just to check on the cancer and it was discovered that I had two clots or Pulminary (sp?) Embolisms either side of my heart, inside my lungs. I was told that if either of these moved I would not stand a chance and in fact it was a miracle that I hadn't been killed when it happened which we established was most likely when I came home and walked up the steps. I was put on blood thinners straight away and my risk of death dropped significantly but for several days I was walking around at such an enormously high risk of dying, I was just so very lucky to be alive, most people just don't survive clots like these. Of course, then I had other scans and tests and they thought that perhaps one of them came from my left calf but not for sure. Most likely is that my pelvis, due to damage from the tumor, is where the clots broke off from. They cannot see where and they cannot see anywhere that looks dangerous to them now which, I don't know whether that makes me feel better or not. They were going to put in what is called an IV Filter which was described to me as something that gets put into the main artery that goes from your pelvis up to your heart. It opens like an umbrella and filters the bigger clots and stops them from getting to your heart. However, they decided that I didn't require one, oh they have a protocol and I guess it is based on finances a lot which I must ask because I may like to have it done and pay for it myself if that can happen, anyway, they can't see any immediate danger so they don't think I require one. My doctors were hoping for one but didn't think I'd get one more based on the fact that the tumor in my pelvis had compromised that main artery in some way making it impossible to do the procedure safely but that is not the case or the reason.
So, (sorry I know it's long) I am still on blood thinners which we have to be very careful with because my tumor can bleed out. When I first went on the thinners I started losing clots in the shower from the back passage (charming I know) so they had to lower the dose, so I am now on less than the recommended dosage for my weight and height but I am not bleeding so that is a good thing. All of these things can happen at any time and it does terrify me when I start thinking about it all but I had to just stop. I was getting to frightened to go home, just so frightened in general. The shock of knowing you could just stop living so quickly and suddenly was very confronting for me and I have done a lot of crying and praying and asking questions and wondering and just being absolutely miserable and then I just had to stop. I had to try and accept all of those things and then move forward and force myself to be brave and enjoy whatever amount of time I have left. Fear is not going to take from me the very things I love so much which is spending time with my boys and whilst I will be as sensible as it is possible to be, I have to get on and live my life for however long or short it is from now on. I can't hide from my boys in case I drop dead in front of them. I just can't. I can't live in misery and fear, I need to laugh and love and live in the now even more than I did before. I need to do and say the things that are undone and unsaid and try and be loving to everyone in my life so that I can be an inspiration to others not a scared little girl that hides away from the world because of fear of dying. That cannot be my legacy and will not. Brave words indeed but I am quivering inside a little. This is my first night home in 5 weeks and I am here on my own with my two boys so I am nervous but I have enjoyed being with them earlier and hopefully I will wake in the morning and be with them again before school and work beckon them and I will feel more confident with each morning that I wake up. I will leave this terribly long post here for now except to say thank you so much for your support and prayers, they mean the world to me and I truly mean that, so thank you my dear friends and I will update again very soon.
Tuesday, 26 May 2009
Hello my dear, dear friends,