Tap tap tap
HELLO!!
Well.. can you believe.. it's 2017 and I haven't blogged since 2016! I'm so awful.
I've been Tapping away at this computer ALL day, because I have promised and promised this new website.. well finally it is done!
I eventually found a way to get the blog up and running and here it is! THIS IS IT!!!
So in here you will find all the entries from one year onwards. the others are to come but can still be accessed on the website. I hope you like the new format. It's soo much easier.
I have so much to tell you. One of the reasons I haven't written is because in the last two years they've been changing their minds about Morris and his growth and I didn't want to scare you. I know a lot of you worry about your remnants, or the tumour coming back and I wanted to have all the facts before I wrote. Where are we now..6 years!
Its a small risk that a residual tumour (One that wasn't fully removed) will grow again later. Sometimes even a residual tumour will just stop dead in it's tracks. Around about the BAHA entries they told me it was growing, and a long conversation was had with a different Dr who said it was my choice if I wanted Gamma. That I had to live with it, but that it could wait too. I left that appointment not knowing what to do or what was happening next. Then I heard from my consultant who said it didn't matter and not to worry. NOT TO WORRY! hah that's like telling a man hanging over the edge of the empire state building not to worry! So I did!
Many conversations later and another scan, things were still vague.(more later) In between I had left my job because Morris was just getting too much. I couldn't think straight. I couldn't remember things. I was walking around worried that I had forgotten to do something (as a nurse, can be a problem!!) It was an awful time. I was in so much pain .I don't even know why. I think it was too much pressure. Pressure from work, my social life, the admin that clutters us all. So I quit. A new relationship meant that I could finally take the time to rest and be looked after too and sit back a little and re group.
It was the best thing I did. Taking the time to actually listen to what my body needs. It isn't an easy journey, Learning to accept being off work (being useless I called it!) and finding a balance of "doing" and "resting" has been a fight! But I think I've finally made it. I know I've talked about learning to rest before, but I can really see clearly now and my body really tells me when it doesn't like something. I get it. I understand the warning signs for the down days, I can't stop them but I can antici[ate them and I can take time to let them happen and not have to push through it. A luxury that I am very lucky to have, but in our own little ways all of us could make a little more time for ourselves? Surely!?
The acceptance of this tumour and all it brings with it is the challenge. I think we can all deal with the physical manifestations because we have to. Doesn't mean they are easy, or comfortable but they aren't changing so we have to just deal with it.
But... dealing with how it feels, what it does to you, the frustration and how that makes you feel as a person. Understanding that you are the same but different, that things have to change a little to make way for this mass of cells, or the removal of a mass of cells! That's the hard stuff. Just this week. 6 years on and I dissolved to tears because I couldn't keep all the information in my head and I felt so useless. It's ok. It's just about accepting that. Each one of us on our own journey will have been an inspiration to someone else. Each one of us will have learnt something new. Each one will have traumatic stories to tell. Whatever it is that we've got out of this, it's shaped us, and that's ok. Call us evolved! hah living with something that you can't see but you can certainly feel is a constantly evolving journey.
Anywho... I got off topic!
Sorry... more about the tumour growth to come. After two years I am finally getting the results through. I changed Doctors in-between and he has ordered other tests and another MRI, so when I know you will too.
So 6 years on thanks for still reading! Hope you like the new website and blog. Still looking for testimonials of other people's journeys do just get in touch!
Jude