I Am Okay...

I am okay and I am so sorry to anyone that has been worried about me! I know it's been an age since I've blogged and the truth is that ever since I arrived home from my stint in hospice and hospital I have had nothing but health issues. I thought I'd come home and each day be building up my strength and really making the most of this time, however, it hasn't been that way at all. First I put my neck out, which is no major health problem but it is very annoying and does stop you doing things! Next, I developed a terrible rash around my groin (I know that's probably too much information and it is an entire other story...) anyway that got so bad that I could hardly walk and then, just to top it all off, I got a really bad urinary tract infection that gave me terrible pain in my left kidney, blood in my urine, extreme fatigue, the whole bit. I was actually quite relieved that it was what it was because I was afraid that my kidney was failing, so in comparison it was quite good news! So I finally got the antibiotics late yesterday and should be on the mend soon. I had been just so exhausted and drained, sleeping just about all day and then easily all night as well and I was so concerned that this was how it was going to be for me from now on. I thought that it was symptoms associated with the cancer progressing and that being just so very tired was normal for me now and I hated it so much. I couldn't do anything, finally my very sensible district nurse came to see me and we talked and she went over all the symptoms I described very carefully and then said to me "you haven't thought that perhaps it could be a urinary tract infection have you?" Well, I could feel the hope rise up inside me as I had myself written off as going into hospital and having something horrific done to me to fix my broken down kidney...etc, etc. I looked at her with excitement and slowly said "No.....that hadn't occurred to me actually, why, do you think it's possible that's all it is?" She said she did and what's more she had a test that she could do there and then that could tell me whether I had an infection or not, so of course, we did the test and yes I had an infection, matter of fact she'd never seen the test react as high as it did for me so I must of had it for a while and it was pretty bad. She then explained to me just how bad urinary tract infections can actually get, I didn't realize but they can make you absolutely exhausted, cause kidney pain and even worse if let go long enough. Anyway, next step was to have a pathology test done, they came to me thankfully as I was in no condition to have to go out, then I had to wait 24 hours till I finally phoned my doctor and got my script faxed through to pharmacy and antibiotics delivered later that day. So, hopefully, fingers crossed and all that..., I should be on the mend in the next day or so.

In other news, I have had Jack home with a nasty cold which in a way has been kind of nice as we have both been under the weather and lazed around in the lounge room together, occasionally playing 'Uno', watching a movie (I love kids movies), or just reading and chatting quietly, so quality time in an enforced manner, not good to be sick but if you have to be it's nice to be together.

A friend and I were talking the other day and we decided to hire someone to come in on a weekly basis and clean my home thoroughly for me (she thought of it and I was only stunned that I hadn't thought of it myself.) We decided I deserve that as I am not strong enough to keep up with it anymore and I have more important things to spend my limited amount of time on. My home has become quite rundown and very cluttered and just depressing. It was getting bad when I went in to hospice for my five week stint away from home and by the time I got back, it was a nightmare. I mean, things like washing and kitchen had been kept up with but no-one vaccumed, no one washed floors or cleaned bathrooms or changed bedding - just horrendous to come home to. Anyway, I have been unable to get on top of it and it has been getting me down just so much. I only wish I'd thought of it sooner but never mind, I feel better already just knowing it's going to happen! I am going to get someone in for the first couple of times to do a great big clean, I don't mind how long it takes I just want it done and then I will hire them weekly to maintain and also to help me with ironing, or anything else I may need. How wonderful is that? I am thrilled about it, it almost fixes my depressed mood. If I can just get on top of these niggling health issues I will be feeling much better physically and mentally and if I have to be ill, then it's much better to be ill in a clean home. I think it will also help my relationship with my mother as it will stop me wishing she could do more to help.

On the emotional front, Jack has been such a happy, well adjusted child. David was over for dinner last night and we were all sitting in the lounge room, I was reading my book and Jack and Dave were on the couch together talking and playing playstation and I looked up and watched them every now and then and Jack would be explaining something to Dave and he was just so animated and happy, he looked beautiful because his inner sparkle was just beaming through, he was laughing and talking and I thought to myself, gosh he really is such a happy little boy. Then, of course, as often happens these days, I felt a dark cloud fall over me as I remembered that I would not be in this picture one day in the not to distant future and I found myself hoping against all hope that Jack never lost that inner sparkle. That my death would not, could not, take that away from him. Please God! I just found myself wondering what exactly it will do to him, what does it do to a young child to lose it's mother? I actually don't know and I really need to go and see a grief counsellor before I die to ask what does it do to a child? How can I minimize the damage? What, if anything, can I put in place now to ensure minimum impact? David should go too and learn what he can do after I've gone, to help Jack cope. I will have a talk to him and ask him whether he'd be willing to go. I am really sure he would as he has Jack's best interests at heart. Well, I don't want to end this post on such a flat note so let me think about something nice I can tell you.....okay, my garden has been just lovely lately with all the Autumn colors and my camellias are out and I have so many birds visiting. Although it's Winter, we've had some gorgeous, bright, sunny days here so it has been a joy to just sit and watch the birds and look at the colors (which have just about finished now) through the windows or sometimes to sit outside in the afternoon sun and read a book. There now, that's better isn't it? Okay, well that's all for now folks, I will try not to leave it so long in between posts next time, take care to all of you and again, thank you for your continuing support and love, you know I appreciate you all so very much - huge hugs and love, bye for now.

Photo Post...

Just some random shots of our family and our lives in our tiny cottage. I have thrown in some old photos of me, the little one in the bath is me (blush), that's also me in the rainbow overalls, also me in the emerald green satin (oh to be young again), and me with Jamie and our dog and Jack and I feeding the deer at an animal park. Honestly, I have such trouble getting the photos in order with blogger, I know it's probably me but it is frustrating. Anyway the trees are in my back garden in early Autumn. Another is Jack running with the turkey, Jack on his first school morning, Jamie with my Nana (his great grandmother), Jack and David at the snow, Jack in the bath, Jack in batman costume. Hopefully when I click publish the photos sort themselves into some better order!

Breathing Easier...

I can breathe a little easier as I have had talks with Jack and he is just such an awesome little guy I am just so impressed by his strength. I have had, I guess, a series of talks with him as I haven't wanted to overload him with one huge long discussion. So we have talked several times and each time I am so impressed with the way he handles it. One of the very first things he said when I intimated to him that I may have to die and leave him while he was still very young was how very lucky he was to have such a good daddy that loved him! I honestly thought my heart would melt. What a positive and wonderful thing to think of. Anyway I knew I had to discuss my leaving him and it had been bothering me that we hadn't talked about it in a while and in such detail before. I knew that now I had two big clots on either side of my heart that this was much more serious in terms of when my passing could occur than it was before. It is mostly due to complications of cancer that we die and complications have started to arise with me during the past 6 months or so. So he now knows that it could happen suddenly and that if it does he will be loved and taken really good care of. He knows he will move to Warragul and attend a new school which we talked about for a long time. I told him how I had changed schools when I was young and he was fascinated and wanted to hear all about that so I told him and I told him that I found a really special friend when I changed schools and it was a good thing so he feels much much better about that. I told him that it would be hard on him and he would miss me terribly but that I know without a doubt that we will be together again one day. I showed him in the Bible where it promises and the part about no more sickness, or pain, etc, etc. I told him to hang onto that and if people tell him otherwise that is their opinion but to remember that mummy believed in her heart that we would be together again and that's what is important. I told him that I am not going to be an angel who can watch out for him and help him because I don't want him thinking that when things go wrong in his life, and they will from time to time, that it's because I wasn't helping him or watching over him. I told him God will have to do that and he can talk to God anytime, anywhere. I've tried to give him something he can believe in and hang onto to help him get through the times when he misses me terribly and I do believe we'll be together again, I just know it somehow. So it all went really well, he took it really well and hasn't shown any behavioural problems since. He is happy in himself. I have been spending quality time with him, we've played lots of board games together and talked together a lot and just hung out together. Next time he goes to his dad's place, I have been invited (by his dad and by Jack) to go with them and spend the night and Jack can show me his special things up there. I have been before but it was a long time ago now so David and I thought it might be nice for Jack to have the memories of me being there a few times and being a part of his future home. It is very nice to have David on the same page, makes things a lot easier and I am grateful for that I can tell you.

The next thing I feel I need to do is talk to Jamie some more. We have discussed things before and even as recently as while I was in hospital but I still have the feeling that more is needed there so that will be the next thing I will tackle. I am very grateful to have the opportunity I can tell you, it's one thing I can leave my boys that matters most, how to cope the best way they can without me and to make it as easy on them as it can possibly be. Then I have some letters I want to write and I imagine that when those things are done I will breathe a sigh of relief and feel that I have done what I could and I will have a measure of peace when I do have to go. Oh who am I kidding, I am not going to want to leave my boys no matter what so I will probably go out kicking and screaming. I am never going to be ready to leave them really am I? Still, I know I won't have a lot of say in it in the end so I am really glad to be getting these things done and I am so relieved to have spoken with Jack. I am sure we will have many more talks the longer I am around for because I really want what I tell him to stay with him to help him get through. I am sure he is such a strong and resilient little boy and he does have a wonderful father so I know he will be as okay as it is possible to be after losing your mum. He will have a life again and he will be happy again. His dad is, thankfully, very affectionate and has no shame in kissing and hugging Jack and snuggling him up in bed with him if Jack is scared or just wants to come into his bed. He reads to him each and every night that he has him, he makes sure he cleans his teeth, eats his fruit and vegies, says his prayers. He lets him play computer games but not too much, he plays with him in make up games and also other games so he really is a good all rounder. I know Jack will miss cuddles and kisses from me but at least his father isn't one of those men that can't show his feelings that way so Jack will still get that kind of nurturing from him. Anyway, that's where things are at right now. I am still here and I am kind of surprised and happy when I wake each day. This time I have right now feels so very precious and I am making the most of it by simply just being with my boys. Little things like we all sit at the table at night and play games and laugh and just love each other, it is so wonderful. Well, thank you all for your wonderful comments and prayers and support, I love you all and need you helping me through this. It may seem strange to people that hear about it but this blog and you all supporting me along the way has helped me enormously so I truly thank you again for everything you say. Take care my dear blog family and I will update again soon. I have some photos I think I'll share next time just for a change, just random ones but it will make for a nice change I think.

Making It Through the Fear...

Hi my dear friends and thank you for all your support and comfort after my last post, it is indeed much appreciated. Well I've been home a week tomorrow now and I am still here! I haven't dropped dead in front of my boys yet, thank God! I have been nervous, mostly at night when things tend to seem much worse anyhow, but the days are passing and so far so good. I must admit that I would feel much more comfortable with another adult in the house with me during the night but it is very difficult for people so I am trying to be strong and cope with the worry. I have asked my doctor for some sleeping pills as I am having trouble shutting down enough to sleep, I guess I feel as though I don't want to waste whatever time I may have left sleeping and also the fear that I won't wake up again is ever present and I think that it will be until I have the CT Scan that says the big clots in my lungs have dissolved. Until then, I am bound to be a bit nervous and on edge. I am not letting it rule my life but it definitely gives me the willies every now and then I must admit.

I am very lucky not to have died the night that the clots broke away and went into my lungs. I keep thinking it is because I have unfinished business here and I must get on with it as I have been given this chance but it is so scary to get what I need to get done finished because I am afraid that then I will die. See how these thoughts kind of mess with my head a bit. However, I truly must use this time wisely as the fact is I am a bit of a time bomb and there is absolutely no guarantee I will be here for the next hour let alone beyond that. I know that I need to talk with Jack about me passing sooner rather than later. While I was in hospital so afraid, one of the things that was really bothering me was that Jack wouldn't be expecting me to die and would not be in any way prepared for it. Well that is not quite true, we have had talks before but it was a long time ago and I don't believe it was in depth enough for the seriousness of the situation now. I felt and still do feel that I have a lot I want to tell him and I want to prepare him as well as it is possible to prepare a child for the death of a cherished parent. I realise he will not be able to truly fathom what it will be like but I still need to leave him with a legacy of honesty and one where he believes he will see me again one day because I truly do believe that and I think that if he can carry that in his heart it will make it all a teeny bit more bearable for him. So I want to leave him with words he can remember and words that are meaningful and that will support him even after I have gone. So, I know what I must do and yet I have been home a week and I still haven't done it. It is a talk that is going to be so emotionally demanding and one that every mother would dread having with her child and yet it would be so much worse if I didn't. So I must stop procrastinating and get on with it because even this very day I have had some bleeding from the tumor and that is really, really not good. It is not a huge amount and I am not going rushing off to hospital but I will phone hospice in the morning and see what they say I should do. I know it is not a good thing and it is one of the things I have to watch out for being on these blood thinners. The problem is I can have a 'bleed out' and it is very hard to stop it because of the blood thinners I am on. It can cause death but as I say it is not enough to be panicking but still enough to remind me that I am on borrowed time and I must get done the things I know in my heart I want done before I go. Yes, I also need to speak with Jamie, although we have had some talks about it and he has also been talking with my mum and with David. He seems to be handling it okay but I know it must be hard on him too. There are some more things I want to leave him with also, so I must really get on with it. Anyway, that's where I'm at lately, just trying very hard to keep it all together and do what I know is right. While I was away in hospice and then hospital etc, I asked for a notebook and each day I dated it and wrote messages to the boys in it. Just whatever I'd be thinking about them at the time, I noted down so that if I died whilst in there, they could look at it one day and see what I was thinking about each day. Then my sister bought me a gorgeous journal so I am thinking of transcribing those notes into the journal as it would be nicer to keep than an old exercise book (that's what we call little thin note books that kids use in school here in Oz). So that's another thing I'd like to get done. There are many things. I would still like to get some more scrapbook pages for the albums done and letters to friends and family if I could. Things for them to keep and hopefully to make them feel better when they read what I have written. I don't know why I feel that when I have done those things I will die but that thought stays with me and perhaps it's because I have an instinct about it and perhaps it is just a fear and not based on reality at all, either way I am finding it difficult to get moving but I must and I will as it is too important not to get done.

I Am Home Again...

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.

Emotional Outburst Finished Now...

Thank you darlings so very much, your support and love is just so appreciated. I know I probably scared you, I scared myself! I just stopped coping for a while there but I am okay again. Well, a little battle scarred, a slight bit weary maybe but back in the ring so to speak. I really hit a bit of a low point there and it was a struggle to cope for a moment or two (well you know...). I had probably best explain what's been going on with me although I know I've put the cart before the horse the way I just exploded onto the screen with such an emotional outburst in my last post. I have been doing it a bit hard lately, I came down with a nasty chest infection which is being treated with antibiotics then I came down with a nasty case of cellulitis and that is being treated with stronger antibiotics, of course, being on all these antibiotics and being that my immune system is compromised means that I must miss chemo this week which is not good news for the pain that I am still struggling with. I have been too afraid (I'm a little ashamed to admit) to go to sleep tonight, although I am so very tired, but I am so afraid that the pain will build up while I'm asleep and then it will take so long to bring it back down again. I have injected myself four times now and am a little more confident that I can fill the syringe fairly quickly and easily if need be. I actually drew three up and left them in the fridge ready to use as I was so concerned that I would not be able to manage once the pain hit! The pain did start to build but I was able to prevent it getting out of hand so I feel a tiny bit more confident. I will stay awake though and sleep tomorrow while Jack is at school. I tell you what, I feel as though I have been through so much in the past few days that I am different somehow. Pain has really frightened me and has made me feel just so defeated. As though I have been beaten up.. ... I just couldn't stop crying even after the pain had gone away! Anyway, I will post again soon and please know how much I love and appreciate each one of you, thank you so much for coming and supporting me here, you are so very dear to me.

The Struggle Continues...

Honestly the past few days, or is it weeks now? I don't know anymore, the days all seem to blend together in a haze of pain and of me fighting, fighting, fighting to not let it drown me. The pain takes over every effort I try and make to pull myself above this illness and spend some sort of quality time with the people I love. I am so frightened and intimidated by 'the pain'. It sort of looms in front of me, I never know when it's going to hit, how hard it's going to hit, who will help me, who will have to see me writhing and sobbing and moaning in the absolute stronghold grip of 'the pain'. Did I miss one tablet somewhere along the line today, should I have done something different today, what if this, what if that, I question every single thing I do, I try and make sense of 'the pain', I try to prevent it, I try to understand it, it won't let me, it has a power so huge that it brings me to my knees and has me begging and pleading for it to leave me alone. It feels like a real thing attacking me, I hate it so much, I want to just rip it from my poor body and fling it as far as anything can be flung but it's so much bigger than me, it is huge, enormous, with an absolute hunger that can't be filled, it devours me. I cry as I try to describe this because I sound half mad talking about it this way as if it does indeed have a life force but honestly that's how it seems. I feel as though I have fought so damn hard, I take so much medicine and yet it still manages to find it's way into me and to hurt me so badly that I wish to take my own life. I don't really want to, of course, but the pain of it is so great that it seems the only thing I can do to stop it. I cannot live in that amount of pain, I just can't, it isn't humanly possible, I know, because if it were, I would do it, I know how strong I am but I know that 'the pain' is so much stronger that I don't stand a chance against it, not a chance. It is taking me from my boys, taking me from myself, I cannot focus on anything else anymore. It is bad enough that I have this illness and I must come to terms with the fact that it is not curable but I cannot even have the luxury of sorting out my thoughts and feelings and organizing things for my boys because of this horrific, all consuming pain. I would never have believed once that life could be so cruel. I feel as though I'm being punished. I know I'm not but it feels that way all the same. I cannot possibly be being punished because there are people in the world that have done far worse than I could ever possibly do and they are not suffering like this, so logically I know it doesn't work that way but emotionally it certainly feels as though I'm being punished. I may get a couple of days where 'the pain' is not all consuming but just as I start thinking that maybe I can do some things - back it comes with a vengeance and hurls me to the floor again and again and again, until I can't even get up. This time, I was asleep for maybe three hours and 'the pain' woke me. I knew I better get some breakthrough medicine fast because it could have been building for a few hours. I got the breakthrough alright but just the act of getting up and getting it sent me into so much agony that I was sobbing and shaking. I had to wake Jamie because I needed other medicines, I needed heat packs, I needed help and I couldn't do it myself because the pain absolutely crippled me. My poor son got up in the wee small hours, got my heat pillows, just did everything possible and had to watch me writhing, and I mean really actually writhing on the couch begging God to stop the pain, begging over and over again. I then got him to phone mum and then we got an ambulance to hospice and they got the pain under control but when I say they got it under control we don't actually know whether it just stopped or whether the breakthrough medicine finally kicked in, we just don't know. They don't know. Nobody knows.

I am pain free right now, I am at home from hospice, I have been taught to self inject with ketamine, deep into the subcutaneous layers, when I get into strife with the pain. I am still terrified that the pain will be bigger than the injection if it wants to be. There is no rhyme or reason at all as far as anyone of us can see.

I now wait for Jack to be dropped home and I will wipe away my tears, put a smile on my face, be grateful that right now the pain has left me alone and I can be here to greet my son and listen to the details of his day and feel the warmth and love emanating from him, it will do my soul good. I will say to myself, as I am doing right now, that I am thankful and grateful to be at home to greet him. To be able to listen to him and focus on him. I am so thankful that he is resilient. He always comes home smiling and full of life and energy and strength. I love that beautiful boy so very much, he is special, I have known from conception that he is special and I always had a knowing in the far reaches of myself that there would be a high price for having such a special child. Funny, I was afraid I'd lose him. That he would die of an awful illness. I never would have imagined that there could be something worse than that but there is. The something worse is me dying, him losing me. I still lose him too but he has to get hurt! So very hurt, which in turn hurts me more than anything else could, more than if it were him dying. If he were dying, I would know that eventually he'd be at peace and I would be left suffering and missing him. This way I know that he is left suffering and missing me and I hate that so, so much that I can't even put it into words. It is wrong, it feels evil that this should happen to a mother and child and yet I know it does and indeed it will and is happening. He is going to be hurt by this more than anything else could hurt him and I can't stop it, I can't protect him from it - How can life be so cruel. How can this be happening and how can I stand up under the weight of it?

I am sorry if this post is raw and messy I am just pouring out my heart and letting it be on the page as it is without editing, just my feelings and my pain, both physical and emotional. I don't know if it helps anyone anymore but perhaps it will one day, perhaps it helps people in ways that I can't even imagine, all I know is I am driven to share this story that is my life. I don't want, or need pity, I just feel a need to share and talk and reach out and have a voice that is heard, I don't fully understand it myself but I know that this blog is so very special to me. I am going to finish here for now but will be continuing on very soon as I want to talk to you about what the future may hold for dealing with the pain.