Well.....
Last night didn't hold much restful sleep as I am sure you can imagine.
I was caught unaware whilst writing my blog post by all my Facebook friends lighting candles and posting pictures of them to let me know they were thinking of me. My Facebook went nuts for over an hour and my eyes leaked not for the first time, not entirely helped with my writing of quite an emotional blog. I often cry a little while I write my blog posts, especially the ones that mention the children. So I was already feeling a bit emotional. I really am lucky to have so many people supporting me through this hellish time.
I need to add tissues to the next shopping order....
A and I just could not settle. I took my Nozinan (anti sickness with sedative qualities) and normally this helps me conk out but not last night. We watched the Shawshank Redemption instead. A spent the night adding stuff to Pinterest or Dropboxing photo's for family. I eventually dropped off around 1am. Both the twins ended up in our bed again, O quite early and R around 5am at which point I was awake and spotted that A had lit three candles for me too during the night. Bless him.
I gave up trying to go back to sleep so carried on reading the book on my Kindle by Dr Kate Granger, a fellow blogger with terminal cancer but who also happens to be a doctor. Compelling reading and I totally relate to a lot of what she says.
We had to try and the fill the day as my appointment was not until four in the afternoon. So we had a long breakfast and played and watched television. My friend came over today after lunch to watch the boys so we could both go to the appointment so we took the children to the park to mark time until my appointment.
I am grateful of having the children around to help distract me especially at times like this.
Arriving at the hospital we both suddenly became very nervous, A grabbed my hand in the waiting room and we waited. I always notice that I am one of the youngest patients in the waiting area or on the chemotherapy unit. I often wonder how the older people tolerate all the treatment and stress of this disease? I am finding it tough going so I really admire them going through it. Before long though the nurse comes for us and my heart starts to race.
My oncologist meets me at the door of the room, which I think was the very same room he delivered the hammer blow to us that the Bastard had spread, he is smiling. He is a pleasant man and I am very pleased to have him on my side. He immediately shakes our hands and invites us in to sit down, telling us it is a good news appointment. He explains he didn't want to beat about the bush as he knows that up to now all my appointments with him have been filled with the worst kind of news. We sit and take a moment to let this news sink in. We look at each other with disbelief in both of our faces. I had prepared myself for no discernable change to be honest being the best outcome I could hope for. He says would I like to see my scans? I say yes please, I haven't actually really seen one since my diagnosis. Probably no one wanted to scare the living daylights of me. It is there in black and white. It has shrunk. The Bastard has shrunk! Not by a little bit but by a good half. We cannot believe it and are mesmerised by the images on the screen. There is a palpable change in the air as A and I audible relax and breath. Dr Oncologist goes on to explain that even better the bone cancer has also responded and there is no evidence of further spread. A and I are properly smiling now. This is good news. Dr Oncologist says this is the best news he could have hoped for. I'll take that. We still can't quite believe it. We leave. For the first time in this journey so far we leave the hospital feeling happy!
We get home and inform our friend of the news then start telling family before informing the world of social media. I know there are several people waiting anxiously to hear what has happened and I know I can't keep them waiting too long. My Facebook account goes bonkers again and I struggle to remember where I posted and where I didn't and who to respond to and when. I always like to respond to my followers, if they take the time to respond to me then the least I can do is return the favour. Only problem is when something big like this happened with my cancer I end up chasing my tail a bit then feeling bad as I realise I have forgotten to tell someone somewhere....
I am now sitting on the bed with the telly wittering away to itself trying to write this blog to make sure all of you know too.
I am not yet sure how I feel about this news. Obviously I am delighted. This is the best news we could have hoped for and we are truly over the moon but somehow I am finding it hard to be as happy as all my friends and family are about this news. People ask are we going to celebrate? To be honest I hadn't thought about that. I had only thought as far as dealing with the outcome. It hadn't occurred to me to have things planned to celebrate a good outcome. This shows the pessimist in me I guess. I cannot allow myself to think that the best thing could happen as I couldn't handle it if it didn't.
We continue to ask a couple of valid questions and I mention my numbness but Dr Oncologist is reasonably happy that this is not likely to be cancer and if it were it is likely to be too small now to see on any scans so we will just monitor that for now. I also ask him for a letter for my spa weekend (our first ever in eighteen years of marriage).....they are insisting I cannot receive my booked treatments without my Doctor's agreement. I can't bloody wait. A whole day without a child with me. Love them as I do this will be bliss.
What does this mean for me now? Well. The treatment will continue, we will complete the course of chemotherapy and then have a four week break and start the radiotherapy. Surgery is still not on the cards at present and it won't unless the tumour shrinks some more and the bone cancer is totally on the run. The reason they are reluctant to carry out the surgery is that it carries a six month recovery rate and currently my outlook is still fourteenth months to live. Yes even now. So as you can see it makes no sense to put myself through such a traumatic experience when it will cut my useful time in half. The radiotherapy will hopefully be a good replacement though for surgery and will zap the Bastard yet further with a bit of luck. The problem that we still have though is the fact that I still have metastatic cancer and the majority of people who die from cancer die from metastatic disease. Bladder cancer has a particularly nasty reputation as being a cancer with a high reoccurance rate. A point Dr Oncologist was careful to point out even in the early days. He is clever so I am not going to nay say him. However, for now it means the Bastard is on the run and that is good, hopefully it won't get all clever and learn how to fight the drugs and will go into hiding for a good time yet.
I have been wondering for a while just how many people are actually reading my cancer blog drivel and judging by the response to my update a fair few more than I realised. Often the usual people interact with my blog or my Facebook blog page but lots of new names appeared today to say how pleased they were with our news. Even people in the village A grew up in are following and asking A's mum how things are. Never under-estimate the power of the media and social media. It is difficult when you make the decision to share your innermost thoughts with complete strangers, the thought that no one could be paying attention is slightly disconcerting. However that appears to not be the case and hopefully my aim of being a friend to other sufferers and their carers whilst lifting the veil on the secretive world of cancer is being fulfilled. A neighbour popped over to talk to A earlier and she had brought over a huge chocolate cake, she had heard via a friend of the blog and she had heard our good news and wanted to show her good wishes. How lovely is that? I love people.
I am now starting to believe that maybe, just maybe I could live with cancer for a while before it does take me. Could I be a survivor? Shrink You Bastard, Shrink.
Take care xxx
