So today was the day for my CT scan results. I wasn't overly looking forward to it but I think I have handled the last week quite well. I have been optimistic and felt pretty relaxed especially over the weekend.
I met Pete there and as I had been warned the hospital was ultra busy to the point where I couldn't get parking...Then on entering the clinic we were greeted with a minimum of two hours waiting. Tha'ts not me moaning but setting the scene. We actually visited Ray during that time as he has been there since last week.
Then approaching the time I got nervous. I had a 'good feeling' all day today and we had received so many messages from friends saying they had too.
Professor Harris stormed in like a whirlwind as usual but was less friendly this time. He seemed to ask lots of questions about when we last saw him and he flicked through notes. He asked why hadn't I seen him sooner? We explained that the DC therapy was for four montths and that I hadn't had any symptoms. He didn't ask me how I was so I didn't get to tell him that I that the feeling has returned in my hands and feet and that I am now having periods.
Then he blurted out that the scan says I have further progrssion of the disease. As usual the scan report was all of about 4 lines. Very brief in detail and only highlighting the odd node that caught their attention. There was no mention of any nodes having gotten smaller or gone and no mention of how many there are. Only the mention that the nodes have progressed in size and that there is one that has increased from 7mm by 7mm to 23mm by 16mm. The other increases are all a bit vague and when asking for specifics we were told that they couldn't give us that info without looking at the scan.
OK at this point I had a hot flush of adrenalin and felt quite sick and red in the face. Pete didn't look great either. Prof Harris just bombarded me with the fact I have to start chemo right away and told me of two drugs; Taxol and Capecitebine. One is by injection the other by tablet. I asked what they do and how long would I need to be one them? He said that they could stop growth or even regress the disease. He then said you can't be cured. Luckily I had already been told that but what if I hadn't? What a way to tell me! I felt like saying, 'Thanks for that gem of information'. It's like they stab me every time they something so bluntly. I imagine a cartoon when a fox looks at the bird and all he sees is a cooked chicken. To me all they see is a disease, not a person with feelings who is scared to death of getting ill and dying way before their time.
I advised him that we are going on holiday and no I cannot cancel it. He said let's just get some drugs inside you as soon as possible then, so wants me to start taking the tablets tomorrow. I asked when will we know if it's working and he said in about 6 weeks when I am to have another scan.
Pete looked at the scan and said, 'There is good news though? Some of the nodes haven't been mentioned so that must mean they haven't changed or better still gone. Would that be reported?' Prof said 'No' They just focus on what has progressed. There is mention of pericardial effusion which is fluid round my heart. Not much to be told here other than that could indicate my lymph nodes not working properly and if it got much worse then I may need to have it removed or my heart won't work properly. But seeing as I don't get out of breath then at the moment it's not affecting me! Also Pete mentioned the fact that the report did say it hasn't gone to my liver or bones. Prof said 'Yes that is good news I guess.' He then blustered out of the room and went on his way. Ten minutes.
I was left spinning. My heart sank like a lead balloon. So much for me being intuitive. I'm not being down on the NHS or the way I percieve my treatment to be and I normally really like Prof harris but today I felt like he wanted to prove to me that I was wrong with the DC therapy and that I will die unless I do what he suggests. I get the feeling that he really didn't like us going somewhere else for treatment or advice. I don't like being made to feel this way.
Right now I can honestly say I want to tranfer hospitals or send Pete to get my results so he can digest the info and give me the actual story rather than a bleak outlook that makes me want to come home and go to bed and never get up again.
As we left obviously I was upset because I really felt I needed a lift, a sign of the disease going, not to be told 'Oh my god you better get some chemo in you or else'. Pete sat me down and hugged me and in true Pete style got out a piece of paper and we discussed the report based on the info we had from the last one back in August.
Things they didn't focus on must mean it hasn't changed or could infact mean it has gone. They never mentioned the necrotic node. Is it still there or has it infact gone? The report mentions that the pulmonary metastases have progressed but only mentions the one big node that in my last scan had doubled in size from 6mm to 11mm in 6 weeks. This time it has only increased from 11mm to 14mm. That means that growth has slowed down. It has only increased by approximately 26%. Surely that is positive? It says that right hilar region nodes have increased slightly but it's only progressive is when it is 30% or more. And there is no canSer in the liver or bones. There is no mention if any have actually gone completely. So infact there is one they have mentioned that has changed significantly but as Pete points out what if that is being blitzed by my dendritic cells which is why it is bigger?
He is so sure that things are changing for the better, that I must battle on and that chemo was never ruled out, infact it has always been a part of the plan. I find it hard to get my head round. How can having chemo which kills every cells in the body do any good when I am trying to build my immunity and fight the canSer?
We have decided to get a copy of the scan and actually get a detailed review of each and every node and canSerous tumour. I need to know if there have been any changes- like some dying, getting smaller and where they are located. I am guessing this will need to be paid for.
I came home in a state. It's like being told you have canSer for the first time all over again. Maybe I was being silly having high hopes but Pete says they are good results- if you don't focus on that one that has gotten really large. It's called 'stable' if there is 25% or less growth. I want more than that. I want it to regress completely.
So since then I have had a little cry (well a big one actually), thought the worst, then dusted myself off and got on with the ironing. I so wanted to blog today some brilliant news. But not this time.. Sorry. Next time. :)
I've already started getting neurotic and think that every feeling I have is a symptom of canSer. The power of the mind eh? I think if I had a clearer picture with what I am working with then I could focus more. If I am plucking them off one by one then great. At least I am progessing with my battle. But you are not told that. I wish so much to be better, to get up and not to think how lucky I am but to have an off day sometimes. But because I do feel like I have to make the best of every day I don't want to waste what I have got. It goes back to living every day as if it's your last because you never know what's going to happen. The way I see it is that in 5 months I haven't had any symptoms surely if it is as bad as they say I would have by now?
I want to be a miracle. I want to be more than a survivor. I want to show people it doesn't have to get you down and I don't want to lose this battle. It's not fair on everyone involved. I want Pete not to have to worry about losing me and most of all I don't want to leave him without ME! It's all about me. ha ha! Actually that would be lovely. For it not to be about me anymore. I am fed up with talking about myself! :)
Anyway shut it out, move on to the next chapter and hope the little cells inside me get with the program a little quicker please!
I'm going to have night of cuddles.. No change there then!
Night! Love you. X