Its hard to put into words and explain how much Cancer takes over EVERYTHING!! Not only in me, my family, my friends and even people I don’t know. It’s a S@&T disease and I can say the novelty of having it has well and truly worn off!!
I get up in the morning and its there, I talk to Stuart and its there, I look at the kids and its there, I watch TV and its there and I go to bed and its there. I can hear it in peoples voices and see it in their eyes, there is no way of getting away from it. The worst thing is looking in the mirror and seeing what it has done to me. I don’t recognise me any more, I look like a typical Cancer patient, skinny, bald and anorexic looking. It’s disgusting!! I’d give anything to go back to the girl I was, even though I didn’t like my appearance much then, its way better than what I am now. It’s the nature of the beast that grows inside of me, of which I have no control!!
This week has been very hard and emotional on everyone. I can’t say that this week is the hardest ever because every week seems to be the hardest ever. Anyway, I went into hospital on Monday as my tummy was soo painful and distended. I hadn’t been able to eat even though I was hungry. The amount of fluid that had built up was so immense that I was struggling to take a deep breath and the smallest amount of food was making me sick. The only way I can describe what it felt like is that all the fluid that has accumulated was causing my other organs to push together and there was no room for my stomach to expand when I ate.
On Tuesday I was given a very strong anti sickness medication which made me very drowsy. When my doctor and nurse came in to the room I saw four people and not two. It was very strange and I didn’t like it as I felt really out of control of my surroundings. That evening the Bowel Surgeon, a palliative care manager and a St Giles Nurse came into my room. I was a little more with it by now and all I kept thinking is there manor isms were all very morbid. He told me that my Cancer was very aggressive (which we already knew), and that it was causing the fluid to build up on my tummy (again we knew this). Due to how the atmosphere felt in the room and the looks on their faces, I felt I was running out of time to ask questions. I asked about operating and they said that wouldn’t benefit me as it would take 6 weeks to recover from surgery before any other Chemotherapy could be given. I then proceeded to ask the question about time-scales. He told me in a low morbid voice that it could be weeks if nothing works!! WOW, how am I supposed to take that in, it felt like someone had punched me in the chest and took my heart out. It had all made sense why they were all there and why it felt so morbid. Weeks, weeks, weeks that could mean as little as a week to as long as 52 weeks, but it would have been better if he had said months to be fair.
The next day the Bowel Surgeon came back and inserted a drain into my belly to make it more comfortable. The difference was amazing, within 30 mins I could sit up and take a deep breath and then felt up to actually eat. The drain was kept in overnight and in total I had 6 litres taken off. There is still more that could come off as it’s in pockets, that may be done next week.
On Thursday, we made the journey down to London. As earlier in the week I had received an appointment from the Royal Marsden. We thought it would be best to go on the Thursday night, due to the weather forecast for the Friday morning. I really didn’t go in, with any expectations and I really didn’t think they were going to give me a miracle drug off the shelf. The doctor explained to us about a phase one trial. This basically means a trial which has just been tested on animals and they have no research or evidence to suggest it works, or makes things worse. Nor do they know what the side effects would be and how they would effect humans. I would basically be a guinea pig!! The clinical trial really isn’t worth the risk, but it could be a road we go down if the Cetuximab doesn’t work either. We explained that my own hospital had offered us Cetuximab and they were positive that that is the best thing to try first. As this is a registered drug, and although we don’t know if it will work on my Cancer it has worked on others. I’ve come away glad that I went, and more positive that Cetuximab is what I will do next. As doing nothing is not an option!! The Royal Marsden has left the door open for me and will see me at any point. They are even going to look at my biopsy that I had done in June last year and investigate that further.
The emotional aspects of this week is immense. I’m angry and upset, as I don’t know what I have done to deserve this. I must have done something unforgivable and I would do ANYTHING to make it right. Time is precious and that’s what gets me, not knowing if things like birthdays are reachable. All I want to do is see my kids grow up and grow old with my husband!!