The past week has been a tough week physically and emotionally. My body just does not seem to be able to cope with the chemo as well and I have spent a lot of the past week in bed which is not at all like the usual Bernadette!! I do feel better for resting however I only seem to be able to manage a few hours up and about doing things before I feel the need to rest again – I feel like I am old before my time! It is so frustrating to be needing so much rest when you like being on the go so much. It is so frustrating to be having to spend time in bed resting when you would rather be spending time playing with your kids. Having said that I know when I rest I do feel so much better and I often end up falling asleep and I would not be doing that if my body did not need it. I am sure I am probably going neutropenic however I am not having the injections yet. No point really as I just have to make sure I have good neutrophil levels by next Tuesday – so whether I start the injections early or late makes no difference other than the fact that I just have to be a little bit more careful about not catching anything. I will see Kerry on Thursday and see what my bloods are like then. Oh I think back to the days when I had no idea what a neutrophil even was!
Emotionally I have found the past week to be a struggle. I found out that the reason I can only have 16 chemos is to do with allowable lifetime doses for the specific chemo drugs I am on. Studies advise recommended lifetime maximum doses that you are allowed before people start experiencing cardiac problems. In my learnings I have also found out that the concern with radiation is that the specific chemo drugs I am on increase your chance of mammary cancers and leukaemia. Radiation then increases those chances significantly. The real unfortunately thing is that the drugs to treat leukaemia can be the drugs I am already on and seeing as I will reach the max dose then treatment becomes an issue. I have also done some more reading on stem cell transplants and my understanding of that is a little clearer too. A stem cell and a bone marrow transplant are effectively the same thing it just refers to where they get the stem cells from. It is basically replacing your white cell production and immune system with somebody else’s and the risk with that is that the new immune system can reject your own body’s organs. They can also use your own stem cells that they get whilst you are healthy and that carries much lower risks. I suppose the cancer has taken on a new seriousness for me recently as I realise it could actually kill me.
I suppose at age 33 you don’t expect to have to face your own mortality. Up until this point in life I truly believed like so many of my relatives I would be still going strong at 80 years old. My family has a long history of living long, healthy lives and I saw no reason why I would be any different. It really gets you thinking. I have obviously thought a lot about a lot of things in the past 7 months and the one thing I know is that I am not afraid of dying per se but rather I am afraid of not living. It is a combination of not being able to live life to the fullest right now because of the cancer and not being able to experience all of the future, especially seeing my children grow up. That is what I am afraid of. Tiernan is so into Christmas this year. He has a total fascination with Christmas and Santa Claus. He goes outside and looks for Santa up on the roof and he frequently talks about him. Last week we bought a Christmas train to go around a tree and Tiernan absolutely loves it. Santa rides in the front carriage and he has some of the best conversations with him. On Sunday I took Tiernan out and bought a Christmas tree. We put it up on Monday morning and he just loves it. He keeps talking about his “beautiful Christmas tree”. The Christmas train goes around the base of the tree and he is in seventh heaven. As much as the experience was wonderful it also got my mind ticking over – wondering will I be here next year and the one after to share Christmas with my kids – will I get to see Arielle as excited about Christmas as what Tiernan currently is? A few years ago, Cam and my brothers went to Rovanemi in Lapland for Christmas. We went to Santa’s village and had the time of our lives even though we were 4 grown adults. It was so much fun – seeing Santa, playing on snow and ice slippery dips, going on dog sled and reindeer rides, ice fishing, going on snowmobiles. We always said when we had kids we would bring them back when they were old enough (the well below freezing temps are hard for kids lungs from climates like ours to cope with so they would have to be around 5 to cope). We were talking about this with friends on the weekend and I could not help but wonder would I get to do this with the kids or would I just get to watch from somewhere above?
All of this talk about what tomorrow might or might not bring has made me do a lot of soul searching. It has made me think about what is important in life and why I got cancer. I really believe things happen for a reason even if that reason is not always blazingly apparent. Maybe my life needed a shake up – maybe I was taking too much for granted – maybe there was some good to come from all of this. Sometimes I think about Shave for a Cure. I think about the amazing effort everyone made to help us reach an amazing total of nearly $9,000. If I had not got cancer then we would not have raised those funds. At the time little did my family know just how much cancer would effect our lives this year. A close friend of one of my brothers has also been diagnosed with cancer last week and is having an operation to remove it next week and also this week waiting to find out if there is a secondary cancer on his lung. Dad is having his prostate removed next week to hopefully save him from his cancer. Luckily mum’s tests have all come back clear and the problems seem to be stress related which given the events of late are not at all surprising – thankfully at least they did not find any problems with her heart.
Lately I have been thinking about ways I could make a difference. I have an idea that I am working on and I will email it out to everyone soon. I am aiming to make an effort to make a little difference in 1,000 people’s lives. For me that will make this journey worth it. If this has made me wake up and smell the roses and try to make the world a better place in my own little way then all of the pain is worth it. Lately I have sat back and thought about what I want out of life and what is important to me. I have thought about the raw essentials and what is important when you strip everything back.
I sometimes wish I could see life through a 2 year old’s eyes again. On Monday I was very upset. We were supposed to have a family photo shoot and my brain went into overdrive again. I could not stop thinking about it perhaps being the only good family photo my kids would have of me. It got me very upset and in the end I was too upset to go. I was crying and Tiernan came up to me and said “why are you crying and so upset mummy”. I thought for a minute about what I could tell him – I did not want to lie and say that nothing was wrong but then I did not want to tell him the truth either. In the end I came up with something that got the essence of what I was upset about out without spelling out the details. I said “Remember last week how mummy had a spider bite and it hurt mummy (he said yes and looked at my leg to check out the bite), well mummy is really scared that a spider might bite me again and make mummy very sick and go to hospital and then I could not spend time with my beautiful little Tiernan and Arielle”. He thought about it for a few seconds and said “Don’t worry mummy, I will protect you. If you see a spider you tell me and I will stomp it. I will get my shoe and hit it and then it be dead and don’t bite you. I will protect you mummy. I will find all the spiders and kill them mummy so they don’t bite you. I will stomp them with my shoe – don’t be upset mummy”. He then cuddled me as much as his little body would let him. It broke my heart and made me cry more which I think confused him a little so I told him I was crying because I just loved him so much and I was so lucky to have him to protect me. Then I thought maybe he is protecting me. Although this journey would physically be so much easier without children, having them also makes my will to fight it so much stronger. On days when I feel I really can’t do it, I think about the kids and know that even when I don’t have the strength to keep going for me I have to keep going for them. Arielle will wake me up in the middle of the night and I am so tired I just lie there for a few minutes and wish she would go back to sleep. Then I realise that her hungry little tummy will wait for no-one and I get up to feed her. Then I go in and feed her and she looks up at me with the most beautiful eyes and gives me a smile that makes everything else just melt away. I no longer feel tired and exhausted and just feel total, unconditional love oozing out of me. At 5 am when Tiernan announces that the sun is up and therefore it is time to get up, again I feel like I am just too tired to cope with it all. Then eventually I drag myself out of bed and after watching Tiernan so full of life I finally get on board. He is just bursting at the seams with the potential excitement of the day ahead. There is always some new wonder to be discovered. Lately it has been his Christmas train. He turns it on and then says “look at it mummy, it’s my Christmas train, isn’t it wonderful” and gives me a big cuddle. Or out of the blue he will just come up and cuddle me and tell me he loves me and that I will get better one day (at which point I realise that he thinks about me being sick a lot more than I probably give him credit for). Even though sometimes I feel like I am too tired to fight this battle for me I know that I have to for them.
I have so much guilt over spending time resting to let myself get better. I feel like a bad mum letting so many other people help me look after my kids when I am too sick to do it. I feel bad when I am in hospital and my kids are farmed out. I know that they are being looked after and loved but I feel guilty none the less that I am not there. Tiernan has had a ball in the past 6 months going on so many adventures with his grandparents, aunties, uncles and friends and yet I still feel guilty that I was not there to share so much with him. I have booked Arielle into daycare 2 days per week as at the end of January as a back up if I have to have more treatment. It is the same centre as Tiernan and you could not ask for a better daycare and more loving and caring carers. Yet still I feel as guilty as ever for even considering it. Then I think about why I am feeling guilty. On Monday I sat down with someone from the Leukaemia Foundation who has got to know me quite well in the past 7 months. She talked me through a lot of it and said I really did not have any right to feel guilty about giving myself time to look after myself. I am just making sure I am there for the kids in the years to come. My job as a mum is to protect them and nurture them and love them and if I don’t look after myself then I can’t be there to do that for them long term. So looking after me and giving myself the chance to get better is ultimately looking after them too. So I am now trying to think of it in that way. I am trying to focus on me a little bit more and allow myself the time and energy to get better. Hopefully it will work. Hopefully I will be able to rest and allow my body to beat this cancer.
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November 20th, 2007 at 12:52 am
Hard to believe Christmas is already around the corner. I am ready for some Thanksgiving turkey though.