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.
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November 9th, 2006 at 3:44 am
Hello to you and your beautiful family. Stay strong, know that so many people ( even those you don’t know at all ) are praying for you. Every morning I have my coffee and pull up your blog…. and say a prayer. Hoping you will feel better soon. One day at a time.
December 16th, 2007 at 3:21 pm
very interesting, but I don’t agree with you
Idetrorce