Bernadette

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.