What, no miracle??

A 'Royal day' today..... never good days..... the problem is that they tell you stuff you don't want to hear. But you have to hear it. 

Essentially the diagnosis hasn't changed. It's still there. As it was always going to be. I knew the surgeries weren't going to be curative. They told me that. It's not as big as it was, but it's still there. 

Next step is radiotherapy. Which, again, won't be curative but could manage it in a way that could see me back at work and living a 'normal' life. Again, still no deadlines, no timescales. 

I am ashamed to say I almost refused the radio. I was tired, scared and upset. Although it's essentially what we were told at the start, it was like being told it all over again. I had a moment where I didn't see the point. If it isn't going to take it away then why put myself through it?? The oncologist is yet another strong minded woman.... a bit like my surgeon....... a bit like their patient....... She didn't mince her words, she told me if I didn't do the radio that it would continue to grow and would cause me serious problems. I might be strong minded, tired and emotional..... but I'm not stupid. Let's get this thing managed. Nothing has changed. Our lives have changed forever but I'm far from written off. There was some talk of chemo after the radio but the oncologist was wise enough to see I was in no fit state to discuss that today. So it's still on the cards, but let's see how we go.

I have cried all day. Truthfully I've been crying for about a week now. I think that's probably fair. It's not normal to be constantly optimistic 24/7. Plus I've had two major surgeries and I'm tired. My life has been turned upside down, out of the blue. But I will never, ever allow this to make me live my life in misery and fear. No way. I've got 3 or 4 weeks to get myself built up physically and emotionally. I'm going to focus on that. 

After this consultation it was over to the City for some practicalities. I had to get a mask made of my face/head and then have a scan. Slightly unpleasant but no big deal. The worst bit to be truthful was that the mask has to be fairly tight so it irritated my head wound. It's still a bit uncomfortable now. But it's healing really well and, as one if the nurses pointed out, it'll be hugely improved by the time I start treatment.

Compared to what I've already done, radio will be ok. There are some possible side effects; mainly tiredness. I might have a few bald spots where the beam goes in. Those of you that have seen my current look will know that I'm not bothered about that! Priorities. 

Unfortunately I can't stay up as planned. The Cancer Centre accommodation won't allow Neuro patients to stay alone (probably because we have a tendency to do strange things like fit etc!) It's not practical for family to stay with me every night. Plus why would you stay away from home if you're going to drag family there every night?? Luckily they arrange transport if you need it. Which I'll take. The big man has a job and just can't take me up every day. I don't want others to have to do that. It's too much. So I've asked for transport but will not avail of it every day - I can choose. That means if family are about for some of it then they can come with me. It's good that the hospital are flexible with it.

The staff at the City were fantastic. Very reassuring and took time to talk to me and reassure me. One told me that the routine of going up for treatment every day can actually be quite good. It puts your day in and you'll build up a network of others going through the same. She also said there is lots of support available and is going to get someone to contact me about that. Another lovely nurse! I've met many along the way..... im likely to have a bit of time free while I'm up there so am hoping my Belfast friends might consider the odd cuppa........ I know the City Hospital isn't a great location, but it'd be lovely if anyone was willing to meet me for the odd cuppa before or after treatment. I've been told I'll probably have to wait for my transport home (I obviously won't be transported alone so I'll have to wait for everyone to finish). Although thankfully I'll not be doing a world tour on the way up....... it'll be 2 or 3, not a minibus full. 

So that's the craic. Still scary. But no real change. The next stage of the journey. No timescales. No deadlines. I'll keep doing exactly what I need to do. I'm scared but I know I'm strong and I still have the best Support Team in the world. I remain horribly guilt ridden that my family and friends are having to go through this too. I wish I could do something to save their pain. All I can do is keep being brave and I can promise I'll do that. ..... mostly!! I'm sure I'll continue to have the down day, and I'll allow myself them. But generally I'll stay strong. The worst bit of radio for me is the extended time period..... the surgeries were awful but they were over and done with fairly quickly. Radio is 6 weeks. But then I remind myself of all the other people who do it on a daily basis. And the fact that it's 10 minutes a day. I remind myself of all the things I said at the start....... that of course it's scary but it's better than many get. That's still true. 

Thank you for your continued support. My biggest issue now is going to be maintaining a positive attitude so any help you can give is exactly what you've already done and continue to do...... don't write me off. Don't sympathise...... I'm still here! Don't quiz me too much about the diagnosis and the treatment - I often get upset and then I worry I'll get you upset, turning it into a bit of s vicious circle. Make me smile. Keep my spirits up. I'm not great with phone calls but I love texts/messages and visits from smiling faces! 

Thank you xxxxx