Bernadette

Well I am still in hospital and will be here until Monday. My neutrophils are still low (as expected) and it is not safe to be out in the real world at the moment. So the plan is to stay until Monday by which time hopefully my neutrophils have returned to normal. I will have a CT scan on Monday morning and then get the results on Monday afternoon. Usually I see my time in hospital as a drag and grumble and groan about it. This time I am using it as an opportunity to rest up and do some long overdue tasks like arranging three years of photos into albums and converting 2 years of video into DVD. Luckily I am allowed passes out of here to go home for short visit (no visits to shops though - bummer I have missed all of the post Christmas sales!!!). I will let everyone know how the results on Monday go - fingers crossed!!

Well chemo is finally over and done with. I had round 16 on Wednesday and that is now it - I am at the end of chemo!! When I came in on Wednesday my neutrophils were low and it was a little bit of a battle to be allowed to have chemo but in the end I got to have it. The downside is because my neutrophils were low to start with and now they are going even lower because of having had chemo I have been told that I have to stay in hospital for 10 - 14 days. In two weeks I will have a CT scan to see what is happening and hopefully by then my neutrophils will be up again and I will be well enough to have the small operation to remove my portacath (yeah - I hate my portacath as I have lost so much weight since it went in and it sticks out and hurts all of the time).

 Sorry it has been awhile. After my last little stint in hospital I managed to get out on Monday Dec 4th on the condition I started on Neupogen injections. Unfortunately they did not quite agree with me and made me very sick (severe head spins) and I was in bed for most of Tuesday. Wednesday was my birthday and the day did not start well. My head was reeling and the nausea was pretty severe. I was trying to get myself ready for going to my wednesday mum’s group christmas party when Jess called to say that Tim had locked his keys in his car. It was the incentive I needed to get out of my misery. I picked her up and drove to the place where Tim had supposedly locked his keys in the car. When we got there it looked a little strange as it was a suburban streeet with a fire station at the end of it - no office buildings in site. Jess asked if I wanted to come for a walk but I said I did not feel well and would wait in the car. Well a few minutes later a group of my friends arrived and at that point it dawned on me what they had planned - a surprise birthday morning tea at the fire station!!! They knew I have always had a thing for firestations (and firemen!!). It was such a lovely surprise. We had a cake and the kids all got to play with the fire hose and sit in the fire truck. Just as the morning was finishing they were called out to a fire and the kids got to see the fire engine roar off with sirens blazing. It was the best birthday morning ever. Then we had our Christmas party at Kylie’s and then we went home. Unfortunately whilst at Kylie’s I started to go downhill and by the time I got home I was feeling pretty revolting. Cam and the kids and I were supposed to go out for afternoon tea and pick up my present but I was having trouble being vertical at all. Luckily Cam had already picked up my present and he and Tiernan gave that to me (a lovely bag and an Elizabeth Arden makeup set that I have had my eye on). I lay down for a few hours but did not feel any better. Then my temp started rising and after a few calls to the doctor and hospital it was decided I needed to come in. They thought I may have had a small infection on my port. The did some tests but none of the results would be ready until the next day. My Neutrohils were very high and that is usually the main concern. Given it was my birthday they allowed me to go home as long as I went to see Kerry the next day. So at 10.30pm the four of us truddled off back home (Tiernan thought the whole thing was quite an adventure especially as he loves seeing anyone take blood out of me because red is his favourite colour). I saw Kerry the next day and it was concluded that the Neupogen injections were the culprits and I would not be having any more.

The week went without incident and once off the Neupogen injections I was feeling better than I have felt in a long time. I had energy and very little nausea. I came in for chemo on Tuesday and by then my Neutrophils had dropped but were right on the border of allowing chemo to go ahead. So go ahead we did. I am feeling quite off this time around. I am not managing to get much food in and nothing wants to stay in for long once it does get in. None of this does too much good for my energy levels!! I want to go home as I feel miserable being here and miss Cam and the kids but I will have to see what Kerry says. As I am not going to be on Neupogen I am not sure what the deal will be with being in contact with people and potential for infection risk.

Update - Kerry has just been to see me and my levels are not good. Haemaglobin is at 85 (normal is above 115 and I dont think I have ever dropped below 95 before) so I am in for a blood transfusion today - explains why I am feeling so, so tired!! My neutrophils are up the creek to at 0.4 (below 0.5 is severe neutropeania and effectively no immune system). Oh well I should plan on staying in here a little longer!!

Here are some professional photos we had taken of the kids - aren’t they adorable (I know I am biased)

Well the doctor just came to see me and I have to stay in until Monday morning at the earliest. They want to make sure I do not get any more sick. I am not impressed as I had decided that I would be leaving today and had even packed my bags and was just waiting for the doctor!! I know they are doing it in my best interest but I miss my kids so, so much! We are trying to concoct a plan right now so that I go home for a few hours - hope it works!!

Well I am still in hospital. My counts are not recovering and I suspect that they will start me on my injections today. It has been 4 days since chemo now and I cannot afford for my counts to go any lower if I want to be allowed out in the real world! It is just unfortunate that when the injections seem to work they go into overdrive and then cause so much bone pain. 

It has been a rather reflective week for me in hospital this week. I have seen my psychiatrist each day and had some good talks with him. I have also seen the support worker from the leukaemia foundation. I found out that a friend I worked with in London passed away from lung cancer in August. I knew she was sick and had been keeping in contact with her husband however I had not heard from him for awhile. I kept wanting to write but was afraid that the news would not be what I wanted to hear. Whilst I was in here this week I wrote to him and I found out that she passed away in August. It seems kind of ironic that in August our beautiful little baby came into the world and my friend left behind her husband and children. Her husband is the sweetest, most caring person you could imagine and my heart goes out to him. It doesn’t seem fair that this could happen to such a lovely couple. 

It made me appreciate my situation and be grateful that although I am still undergoing treatment, in all likely hood I will be cured of this disease in time. As much as I hated this round of chemo and hated how sick it made me, I was grateful that at least it will fix me and make sure I have the opportunity to live my life. 

My attitude to Christmas has changed a little. Before I was scared of what ifs – now I realise that I need to appreciate and be grateful for now. I have two such beautiful little children and spending this Christmas with them is a blessing. In April it was questionable whether I would be there for Christmas day let alone having Arielle. How lucky have I been? I am so looking forward to Christmas day this year. Tiernan just loves anything to do with Christmas. He is so excited about Santa – he loves going outside to check if Santa is on the roof. I keep thinking of Christmas morning and how excited he will be. Arielle will be too little to appreciate it however she will not know what a little miracle she is and how special it is to me that she is here with us this Christmas. I remember people used to say that Christmas is about kids. Now having children of my own I realise how true that is. To an adult a Christmas tree is just a tree with some decorations and lights on it – to a child it is a wonder, a magical mystery full of wonder, promise and awe. Sometimes we need to sit back and look at life through the uncomplicated eyes of a child. Look at a Christmas tree and let it fill our minds with wonder and excitement and joy. 

I miss my children desperately. I miss all of their little antics and cuddles and smiles. I miss feeling their soft little hands touching my face and their tiny little arms giving me cuddles. I miss Tiernan’s big sloppy kisses and Arielle’s “I think I might be getting a feed” kisses. I miss smelling that sweet baby smell when I pick up Arielle. I miss Tiernan telling me I am his best friend and just about strangling me when he cuddles me. I have felt a tonne of guilt this week as the children have been farmed out all week. Tiernan has spent most of the week with Jess and Tim and Arielle is up at mum and dad’s (dad is now home from having his operation). I know that they are being spoilt and loved and having a great time but I felt guilty that I am not there for them. But then last night a nurse asked me why I felt guilty. I explained that the children are being farmed out and are not with their parents. She then told me I am in hospital because I am unwell not because I choose to be. So I am stopping the guilt and instead thinking about how much fun the children are having. 

Well despite being neutropenic I went ahead with chemo this week. I just want it all to be over and done with as soon as possible. I am currently still in hospital as my neutrophil count is still very low but hopefully I will get to go home soon. I am feeling pretty revolting and not eating much but that is pretty normal so not much else to report really as far as I am concerned.

Dad has had his prostate removed this week (Monday) and he went home today. The operation was a difficult one however the doctor is pretty confident that he got all the cancer out. Hopefully dad will have a speedy recovery. It was a scary time but it is so great to know that the cancer is gone. Dad has the most amazing strength and attitude and I am looking forward to him being back on his feet and feeling well again.

A friend’s dad also had a cancerous tumour removed this week and he too is now back home and on the road to recovery.

The kids are doing really well. Arielle has started to chuckle and it is just wonderful. She is such a chubby little bubby now with rolls and rolls of fat. It is so cute! Tiernan is also doing well - he went on his first fishing trip last weekend (with Nunnu of course). He caught a heap of fish - mostly toad fish but he was just happy he was catching fish. He must have fisherman blood in him though - he caught a Bream that was about 18cm long. When I asked him what he had caught he told me he’d caught a snapper. Then after he threw it back I asked how big it was and he stretched his arms out as wide as possible. Then later in the day I asked him what he caught and he said “a huge snapper”. I asked how big it was and he said “7 metres”. Then I asked again how big it was and he said “24 metres” then I asked again and he answered “2400 metres” at which point I commented that he was a great fisherman and he was very happy!!

For those that have not seen my email have a look at http://christmaswish.blogg.com/

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.
  
 

Well chemo number 13 is currently in progress. Unfortunately they are out of beds and therefore they are sending me home afterwards. The last time I went straight home after chemo I ended up back in hospital and very sick. I suspect the difference was not having the fluids pumped through me so this time I am staying and having 2 litres of saline pumped through me before going home and hopefully that will flush my system out a little.

I was released from hospital on Friday from my spider bite and ended up back in on Saturday night for a short visit. On Friday night, Nat, Tim and I went to Cirque De Soleil and it was absolutely brilliant. Our jaws and necks were sore from being so tense as the stunts they were performing were absolutely incredible. Somehow though, Tim and I managed to catch a tummy bug. By Saturday night I could not even keep water in and was in a lot of pain and Tim and Jess drove me to the Mater. They checked me out and ended up giving me anti spasmodic drugs as well as fluids and Panadeine Forte. My neutrophils were up to 11 (normal is 1.5 - and that was causing a lot of bone pain and then my tummy was going into spasms from the bug which was causing tummy pain. Eventually at 2am they released me and I had a quiet day on Sunday.

Sunday was also a sad day because Natalie went back to London. Tiernan was very upset and as she was leaving begged her not to go - he could not understand why she was leaving him as he does not think anyone else cuddles him the way she does!! Although we know Chris misses her heaps we cannot wait until they are both back in Brisbane for good. I think with everything that has happened to our family this year we are really learning to appreciate just how precious time together is and how easily it can be taken away. I feel that we are closer than ever and it is a nice way for a family to be. I suppose we have all needed each other a lot this year and going through what we have just makes us even closer.

 It has been awhile since I put photos up so I thought I would put a few on today. This one is of the rescue helicopter that Cam volunteers on. It is the Energex rescue helicopter and he volunteers one weekend a month. They do the rescue operations on the Sunshine Coast. It is very exciting work and he loves it. He has to assist the pilot with navigation, take offs and landings, assist with a rescue (such as being dropped into the surf to pick up someone in the water) and assist the medic with medical assistance to the injured person (Cam used to be squeamish like me so he has come a long way to do that too).

Here are some photos of my gorgeous little munchkins. As you can see Arielle has grown heaps - she is now about 4kg! She is a very strong little girl both physically and in her will power. If she doesn’t want to do something (like trying to move her arms out of the way when feeding) it is a real struggle. She is a little princess too and Cam and I constantly laugh at the little things she does. If she wets or dirties her nappy she insists on it being changed immediately - if it is part way during a feed she will not continue feeding until she is clean and she will cry until it is changed! It is lovely seeing her little personality come out. Tiernan still loves his little sister to bits and we have had no problems with jealousy. He is actually being quite helpful most of the time and just loves to nurse her and kiss her. The photo of Tiernan is a rare one now days as he is playing with water out of a hose. We are on strict water restrictions however mum and dad have a dam and the hose he is using is connected up to that. He had the time of his life playing with the hose and mum ended up as drenched as Tiernan was - he would water the roses and then say “Nuna come here and see this” - as soon as mum came over he would point the hose at her - he thought it was a total crack up and giggled and giggled.

These are the photos of our house. It is really coming along now and is really looking like the end product. We had a wardrobe person come out this week and she asked what we did with the old house. She was suprised when we said it was still there beneath all of the new product. Once the house is finished though the only way any of the house will be visible will be inside the roof!! Cam and I both love going over there as it is so exciting to see your dreams finally taking shape and slowly becoming a reality.

Back to why I called this blogg “Along came a spider” - Sometimes you really have to wonder if someone has it in for you!! On Monday night I dropped Cam off at Kangaroo Point to go climbing and whilst I was there I sat on the rocks talking to Cam. There are always ants and spiders and bugs around but they dont usually bother you. Well on Monday night a little spider thought my calf muscle looked a little tasty and decided to take a sample bite. It stung but I was not too bothered as it was only a little spider and it didn’t look too scary (I let it live and scurry off to play with its other spider friends). On Tuesday it was a little itchy and started to swell a little but again nothing too bad. Early Wednesday morning it started festering and my calf became quite swollen. I called my doctor and sure enough hesaid to come in. My blood was tested and I was even more neutropenic than I was on Monday and it looked like the bite had caused an infection (couldn’t the spider have picked someone who was not neutropenic and bitten them instead). So I was admitted to hospital - they had a shortage of beds and I had to wait to 4pm and as I was severely neutropenic I was not able to wait in the general waiting room due to my risk of infection. Eventually I convinced him to let me go home (I had not brought any bags in) as long as I promised not to be in contact with anyone else other than Cam (Tiernan was with Jess) and I promised I would come back to the hospital!

So now I am in hospital having a few IV antibiotics to combat the spider bite infection (the festering has calmed down and it is now just a bright red splotch mark on my leg), some Neupogen injections so that my white cells don’t have middle names (an expression they use to indicate that you have so few white cells it is possible to name them all with middle names) and a blood transfusion to get my red cells into gear and increase my currently very low blood pressure. Oh then I forgot to add to that some Phernergen and Hydrocortisone to combat any adverse reaction to the blood and some Panadeine Forte to try to dull the pain caused by my bone marrow trying to get into some heavy duty white cell production from the Neupogen injections!! In the few minutes one of those drugs are not being pumped through my body I have fluids going in me just to help me along a little. And I might add all of this is in a room shared with 3 other cancer sufferers as the ward is so full at the moment. Oh the joys of having cancer!!

It has been quite amusing sharing a room this time. The lady beside me is about a hundred and two and snores like a trooper when she is not throwing up - very helpful in trying to eat or get a good night’s rest before they wake you at 4am to take blood. It is quite amusing actually as I think she may have dementure as well - she just buzzed the nurse and said that she does not know why she is in here as she definitely is not pregnant and had a very active sexual life until recently - maybe she thinks she is in the Mater Mothers!! The two ladies opposite me are lovely ladies in their late 50’s. They are both newly diagnosed (one yesterday and the other last week). It has been quite interesting talking to them as I realise what a pessimistic cynic I have become in the past 6 months. They have wonderful positive attitudes and keep talking about how much of this is mind over matter and keeping a positive attitude and are both looking at trying alternative treatments in addition to traditional medicine. We have had some great chats and I have managed not to infect them with my knowledge of how bad chemo really is. I remember a time when I felt the same way they did. I have tried only talking to them about positive things and trying to pass on a little knowledge about how the ward works and any tips and tricks I have on suriving this rotten journey.

I am sitting here and am listening to Sarah McLachlan’s “In the arms of the angels” http://www.youtube.com/watch?v=cdgNj303ghE. It is a song that always makes me feel sad - it reminds me of my cousin’s funeral last year and it is a song I like listening to when I am feeling sad which is appropriate for right now - maybe it is weird to say this but it is also a song I think I would like played for me one day.

I had my CT today and they showed that the mass had shrunk - you might think that is great news however that was not the result I was hoping for. The fact that it has shrunk means that the mass is still cancer and not just scar tissue. That means I am up for 4 more rounds of chemo - not at all what I want. We discussed radiotherapy however that carries a much higher risk of me developing breast cancer or leaukaemia after treatment so Kerry did not want to go with that option. I had considered two options from the CT today - one was that the mass had not changed in size and therefore was no longer cancer and was just scar tissue or that the mass had grown. I had my heart set that the mass was just scar tissue and that being the case I had decided I would definitely not have any more treatment. I had decided I would only have more treatment if the mass had grown. I was so sure that it was no longer cancer though - I was so sure that was why the past few chemos have made me so sick - I figured that the cancer had all gone and as the chemo had no cancer to attack that was why my body was not coping with it.

I am on day 14 today and I am still neutropenic as well and the neutriphils are on their way down not up (they are supposed to start going up after day 10). So all in all I am feeling a little miserable - my body just does not want to come to the party! I was booked for chemo for Monday of next week (Kerry talked me around to having it by persuading me that 2 more months of treatment now was a small price to pay for still being here in 20 years time) however when I was on the way home I decided I could not do it and called and cancelled treatment. I just dont feel like I can do it anymore.

Update - Tuesday night

Cam and I talked at length today and I decided that even though I dont want to have it I really should have the next 2 months of chemo. I am dreading it with all my heart but know that even if I am not willing to do it for myself I at least owe it to the kids to do everything I can to try to beat this cancer. The scariest part is that I never expected the cancer to still be here now as 6 months is the standard treatment length so now I am having to go into having 8 months of treatment to actually get rid of the cancer. Prior to this I had always expected the final 4 treatments to be post cancer and more of a double dose idea to make sure there are no lurking cancer cells. 16 treatments is the max they will give me. After 16 treatments (mid Jan) I will have more tests and they will assess from there what to do. I was not too interested in talking about it but from my previous discussions I understand at that point radiation would be used. It all starts making me wonder if I will still be in the 80% but I suppose I have to keep positive. I am tired of all that the cancer has robbed me of in the past year - I feel that it has taken away such precious time with my family, especially Tiernan and Arielle. I feel so angry that this disease has just taken over my life and how it impacts me on a daily basis. I was so hoping it was all going to be over - I had even started to think I might be able to breastfeed Arielle again (relactation is highly successful). Jane is being the most wonderful friend ever and despite having three little girls to look after she is diligently expressing milk for Arielle and it is the most wonderful thing she is doing for me. I feel guilty that I should even want to be able to breastfeed but I miss it so much. I feel like life just can’t get much worse at the moment - kind of like all of the solid walls holding everything up are falling down. Cam and I spoke last night of the irony of the fact that not so long ago I commented how lucky my family has been. I have a very large extended family and yet all my life everyone has been very healthy. The statistics somehow had skipped my family and we have not suffered many losses. I am nearly 34 years old and still have 3 grandparents and I have all of my aunties and uncles. All of my cousins are healthy and we have all been lucky enough not to be victims of violent crimes or car crashes. Years ago one aunty suffered from breast cancer and my grandfather from prostate cancer but both have made full recoveries. Then suddenly this year it all falls apart - I find out I have cancer whilst I am pregnant, Arielle was born 7 weeks premmie, Arielle had to have a hernia operation, dad gets prostate cancer and yesterday we found out my mum has heart disease and may have to have a shunt or a stint or some other word I cannot remember put in to keep the artery to her heart open and the dad of a friend has cancer in his back. I know I have to sit back and try to look at the positive - right now we are all still here despite our various health issues but why did this have to hit all at once - wasn’t being pregnant and rebuilding a house enough to cope with in a year?!?! Although I am a fiercely independent person I realise that I will not get through the next 2 months without help as I really feel my body is at the end of its coping range. I am seeing a dietician to try to stop losing weight and hopefully put some on - I have been told to think of food as medicine - I have to eat regardless of whether I like it or feel like it - glasses of water are no longer allowed and any drink I have must be soft drink or juice to try to increase my calorie intake!! I have also decided to enlist the help of so many people who are offering to do things for us - especially helping out with meals and / or looking after the children. The only way I will get through this chemo is with help and a real lot of it - I will have to get over my independence and not feel guilty for needing help.

On a more positive note, Arielle is doing really well. She has recovered from her operation and is growing so quickly. She has started to smile and loves all of the attention Tiernan gives her. She is a little princess and a very delicate little miss. Her nappy cannot be wet or dirty for longer than a few minutes - if it is she will cry until it is changed even if she is halfway through a feed. She does not like loud noises or sudden noises and likes things to be just right. It is amazing that we can start to see her character coming through at such a young age!

Well I must sign off now and go to bed.