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Saturday 25 January 2014

His eye is on the sparrow...


His eye is on the sparrow,
And I know He watches me.


Since my last post, things have continued to get better. Well I should say they got a bit worse before they got better. I left you at the point where I had had the infusion all day at the cancer therapy centre and then a bottle was attached to my port that I went home with. I had that attached to me for all the next day and until 2pm on the day after that. Things went quite well when I got home. Theanti nausea   needle and tablets they gave me on the first day worked very well for the first night and day, and then on the Friday, after the bottle was removed, I started to feel the effects of the chemo! I had been given a bottle of tablets to take if I started to feel nausea coming on, so I started taking them, and kept them up for a few days. I didn't feel like eating at all, the thought of food and the smell of food was awful. I could feel the chemo pumping through my body and I could feel my body fighting with everything it had! I had a few issues with my eyes and my lips twitching, but, thank you God, after a couple of days, all the bad feelings started to subside. I was tired and worn out, but the first experience had turned out to be a lot better than I had imagined.

On the Monday when I saw the Surgeon, he told me that he wouldn't be re attaching my bowel, so I will have a stoma bag for the rest of my life. He feels that there is more chance of getting more cancer if that op so done. I can live with that. He also explained to me that he had scraped cancer off my bladder when he did the operation as well, and that explains why I have had so much pain in that area. None of this had been mentioned previously! So when the doctors lay all the facts on the table, they apparently like to keep a few facts up their sleeve to pull out later! It makes you wonder if there could possibly be more they haven't told me. I mustn't worry, it probably makes very little difference to the whole scheme of things, the chemo just has to work on a few more areas, oh yes, he also mentioned a few spots on my stomach!

The Tuesday appointment was to see the Oncologist, to chat about any side effects I may have had from my first round. He seemed quite positive about how things would go, and said that I would probably not have much of a different experience that the first time for a few months. I hope he's right! I am starting to imagine that I might be able to have a life in between chemo rounds. One week on and one week off. I can live with that!

I want to say a huge thank you to all those wonderful people who have been supporting me through this experience. My lovely friend Elaine, who has taken me to some of my appointments with a cheery smile, and a happy chat, to take my mind away from what's happening! My friend Beth, who calls, and pops in to see how things are going, another friend I met at choir last year who is such an inspiration to me, Denise, who fought breast cancer 20 years ago and who told me she used to say,
 "I know I have to die one day, but NOT TODAY!"
My daughters Anna and Emily send me inspirational messages and verses to remind me that there is so much to fight for, and that God is in control, He knows what I'm going through and He is always with me, through it all.

The song I started with has been a favourite of mine for a very long time. If you want to hear an amazing version of it, it's on the soundtrack of sister act 2. Have a listen to it, it is so worth hearing!

Again, thank you for your support. There are so many more people who have helped me along the way, I haven't forgotten you. Looking forward to your feedback as usual!
Liz

Wednesday 15 January 2014

Long line or port and my first chemo treatment...

Firstly, I want to tell you that I have the most wonderful husband who cares for me in everything he does. He has accepted my colostomy bag without a problem, he just loves me and he shows me every moment how much. This photo was taken before I even started on my diet in June last year, but what I love about it is the way it shows Iain looking at me in such a caring way! Thanks to my sister Jo, who always seems to capture the special moments so beautifully!


On last Sunday, we went out for a nice outing to the Mount Annan Botanical Gardens Cafe. We all needed something to make us feel a bit normal and to go somewhere with a pleasant atmosphere, something to help relieve some of the pressure that all of us had been feeling. I decided to have a lime and lemon tart, which came with ice cream, strawberries and a lovely white chocolate piped decoration. It was delicious and so nicely presented. It's hard to get your head around being able to eat this sort of stuff, after being so focused on my diet, but I want to use that same focus to get through the tough battles. Learning about what I could do with the diet is a great lesson for the rest of my life!


I also ordered a decaf iced coffee to go with it.


Monday was the day we went back to the oncologist to sign the papers for the clinical trial. Once we had gone through all the questions about the trial that we had come up with, I signed on the dotted line, and so did the Dr. Then, it was all on! I saw the lady who checks all the paperwork for the trial and organises all the things that have to be done in order for my participation to be correct. I had to have a blood test, I was booked in to go to St. Vincent's Hospital the next day, to have the port or long line put in, and then on Wednesday I was booked in to start my first chemo session for about 5 hours, and I also had to do an induction course as well. 

My mind was spinning, worrying and over thinking everything! It all seemed to be happening way too fast for my liking, not that I could ever get my head around any of it without going through the experience. That was really what confirmed to me that God is in control! He knows me well, and too much waiting would only make me think and worry more, and lose more sleep. That's the way it had to be. I don't think I slept a wink that night. There had been a mix up with my name, and I and the hospital had papers with the wrong Elizabeth Taylor, wrong date of birth and address. The booking had been done without all the usual checks and I was so mind boggled with too much information, that I hadn't noticed till I got home, hours after the clinic closed.

We got up extra early, had breakfast and took the papers back to the clinic to be fixed and faxed to the hospital, and fortunately, the same nurse was there and got it all made right. Then it was a trip into town, a few wrong turns because our GPS didn't know that some roads are closed in peak hour! We were there in plenty of time to have a drink and something more to eat at the cafe. After that nice little breather, we went upstairs and booked in, checking that they had all the right papers faxed to them that morning. There was a lot of waiting, but I was finally called in to talk to the Dr. who was doing the procedure, he explained a bit about it and how long it would take, and then he led me to the theatre where it would take place. I walked in, sat on the table, lay down carefully as my stomach is still tender from my last op. They put lots of fixtures onto the bed to hold my arms comfortably, and to rest the covers they put over me so I couldn't see what was going on. I believe there was a hole in the covers that the Doctor worked through. I was awake through the whole procedure, which was very daunting to think about, but all the staff were so good, they helped me through it. There was a bit of needle pricking and stinging I could feel, and then it was just a lot of pushing and pulling in the boney area near your shoulder. It's near the side of your chest. He left the needle in the port so it could be flushed and then it was covered with a padded bandage and a plastic like dressing so it was completely covered, there was just a little tube and nozzle hanging out. When I went to recovery about an hour later, I was able to walk there. I sat in the recliner chair and was connected up to a drip to feed antibiotics through the line. I was so glad to have that experience over! Another day nearly ticked off. We did walk the dogs around the block when we got home and they loved it as usual!

I slept so well that night. I was surprised at how well I'd slept, it was definitely what I needed! Thank you God!

Chemo day 1, another day I had been dreading! Just get on with it I say.
Well, this day turned out to be not so bad, thank you God!
I had a beautiful nurse who was with me all day, no staff changes in between, so she took us through the induction and explained everything in a way that I could understand, all questions were treated with respect, no query was silly, I didn't seem to have any side effects that were too bad and I was able to eat a sandwich and have a drink. I do realise that this is early days and lots of things change as time goes bye, but I've come home with a chemo bottle attached in a little bag on a belt, it is slowly infusing through my new port, and tomorrow afternoon, I go back to the clinic to have it removed. The needle will be taken out and a smaller dressing will be put over the port again.

I have appointments for the first 3 days of next week, to see the Surgeon who removed the bowel cancer, for a post op checkup, and then the oncologist to see how the first chemo has been going, and then to see the stoma therapist to show me how to order my bags and supplies, and just to see how I'm coping with it all. By then, I should have a bit of an idea what one round of chemo therapy is like. My immunity could be low and I could be feeling very tired. 

We'll just have to wait and see. One day at a time!

This photo was taken a couple of days after I came home from Hospital. I had just come home from the hairdressers and had my hair coloured, washed and trimmed. I felt so much better after that experience. 
These are my daughters, who have loved me, cryed with me and cared for me so beautifully!


Im always thankful for your comments and feedback
so thank you in advance!


Monday 13 January 2014

Bowel cancer with a few spots on the side...

Well, this is an update on what has been happening in my life since the last time I posted on this blog. It's been a couple of weeks, I think, and last Monday, my husband and I went to see the Oncologist for the first time, to hear the whole truth, and nothing but the truth.

It turns out that the truth is very hard to hear! The spots of cancer are not only in my lungs and in the scar tissue from when I had another abdominal operation, but they found cancer spots on my lungs when they did the last chest CT scan while I was in Hospital. That scan was never mentioned while I was in hospital, and that made me a bit suspicious! I had an inkling that what the oncologist would say was the worst news, but when you actually hear the words, that they can only prolong your life, and can't make any promises to cure your cancer, and that this cancer will be the thing that will get you in the end, it's not an easy thing to take in, or to hear!

You see a picture of you on your death bed... You jump to your ultimate future, and it's just so scary! Even when you are offered a slight ray of hope, it doesn't seem like enough...you will never be off the hook... Your family who love you, have to come to terms with this news that is too much for anyone to bear at any time, but somehow they have to, and all the time, you are waiting. Waiting for treatment to start, waiting for the nightmare to be over, waiting for the time when you can have another painkiller to make you sleepy so you can sleep and not think, waiting for the night to be over where you think too much about everything, but at the same time, hoping that when you wake up, you'll not be living this nightmare!

It takes time to process all this information, and while time is ticking, I've been healing from my operation, getting used to eating more food, even though the reality and the thinking has left me feeling sick and not that interested in food.

We've all read the clinical trial papers that has been offered to me, we've cried a lot and talked a lot about it all, talked about the pros and cons, the benefits of prolonging my life (even though early on, I found it hard to think why I would want to go through any of this more than once!) I decided that in all of this Doctor talk, there was no God in any of it! There was no talk of God's plan for my life, the fact that He is the only one who knows when it is time for me to go, and He already knows how much I can bare, He is my good shepherd who makes me lie down in green pastures, he is with me as I walk through the valley of the shadow of death, and he will guide me through. I will fear no evil, He will comfort me and give me hope. He will be my strength! I can talk to Him whenever I am afraid or when I feel weak, and I know that He is also with my family, helping them through their own journey, preparing the way, step by step.

I am to have a long line put in tomorrow, and then on Wednesday, I will start my first chemo session, which will take 5 to 6 hours to infuse, then I will have a special bottle attached with another chemo drug which I take home and that infuses over 2 days, then on Friday, that bottle is disconnected, and it goes in two week cycles. It's all happening very quickly, no time to think, that's how I know that God is in control, He knows me well!

I feel a bit numb! Nervous, but ready to give it a go. I sound braver than I think I am, but maybe I am that brave after all, I just don't know it yet.

Send me a line,
Liz Taylor

Friday 3 January 2014

Things are changing

I don't quite know how to start because my life has had the biggest flip and tumble that I could never have planned for. I think my blog is about to do the same! I'll start from the beginning which was the 16th of December 2013

I was feeling pretty healthy, but I had thought I must be constipated, I hadn't pooed for 4 days and my tummy just felt a bit bloated. I had a lot of wind that was moving around in my bowels, but for some reason, I couldn't pass it. That didn't seem like such a big deal to me and I just hoped it would resolve itself. On the fourth night, I started vomiting, and that was the cue to go to our local hospital. I had an x ray and the radiographer said, by the look of it you'll need a ct scan. That was the first hint that things were worse than I thought.

Within a few hours, I was signing a document that gave my permission for the surgeon to take out what looked like bowel cancer that had grown big enough to block it completely, they were afraid that if they didn't do it straight away, it could perforate! So I woke up in a nightmare, too soon, pain killers not taking effect yet, with a colostomy bag and feeling very afraid about my future! The dr also found that the cancer had spread and there are also spots on my liver.

That's the short version!

I'm at home now, I've had the staples out, which was another ordeal! I have to inject myself every day with a blood thinner so I don't get a clot in my lung. I'm getting used to the colostomy bag, and they tell me that it is reversible, though I'm not sure why I would put my hand up to go through that operation again!

I'm seeing the oncologist on Monday and that will be where reality sets in! There will be a whole lot of treatment and I'm going to have to toughen up a lot to get through the next bit! I have an amazing family, wonderful neighbours and friends who will be beside me all the way.

Losing weight is a definite no no! I am now not allowed to lose weight. I have to eat lots of protein and carbs.

I am so glad that I lost 16kg before all this happened! And I'm also glad that I have a buffer of weight that will help with the fight that is to come. I'm so glad that I was able to eat healthy food for the last 6 months so that other than the cancer, my body is strong and more healthy than it would have been, had I not started the 2/5 diet. This diet proved to me that I can do it on my own, and I think that lesson will come in handy in the future. I have willpower and strength of character. I see now that this diet has been part of the preparation for the next part of my journey. I have no regrets about doing the diet, and I'm sure that my weight loss was from my work, not the cancer!
Since the operation, another 4kg has fallen off, weather they cut it out, or I vomited it out or it's just fluid that is now leaving me now that I'm recovering. A Dietitian worked out that at the moment, I need to eat just under 2000 calories per day to not loose weight and repair what has been damaged. That's a mighty lot of food! I'm finding it hard to eat that much.

I'd love you all to try and leave me some words of encouragement, please! I'd also love to encourage you to stay on your journey, be strong in your endeavour to stick to the plan and eat healthy food and loose weight.


This is me about a week after the operation, trying to smile, even though I didn't feel like smiling


This was Christmas lunch in Hospital, it was as dry as it looked! The roast sweet potato was the best thing on the plate. I couldn't finish the meal.


I eventually got a private room and my darling Husband brought me in a decorated Christmas tree and fairy lights that were battery operated, for in the tree and on the end of my bed, he brought in all our Christmas cards and there were beautiful flowers and cards and plaques with encouraging and loving words.


this is me at the end of my Hospital stay, still scared and sore, able to change my stoma bag myself, able to get out of bed myself and walk around. I'd lost 4kg over the 2 weeks I was in Hospital but I mustn't lose any more! There is a plan being formulated right now, and I'll just have to live every day, day by day, till I get through this. It's a new and different journey, one that I wouldn't wish on anyone else, so if you are given the opportunity to take a poo test to screen for bowl cancer, just do it, don't be embarrassed and throw it away like I did! do it, and save yourself this agony, and that of your family!

Please try to leave me a message, I would really appreciate it right now
regards Liz