Monday, May 18, 2015

4 Years 3 months

4 years 3 months

Big big things happening!

Health wise we are still on the search to find out what has been/is going on with my lungs/chest wall. Super blood test to determine the function of my adrenal glands has been done as well. I should have a clue how that went soon.

On the University front I have been thinking pretty heavily about what it is that I really want to do, where I want to be and what I hope to achieve at the end of it all. I have 99% decided that I will not at this stage be continuing with Science and will more likely be heading in the direction on neuropsychology. I haven’t ‘given up’ I am just readjusting my perspective. If I continue with my current Science direction, I would more than likely be closer to the end of my career than the beginning when/if I was able to do my own independent research. In the meantime I would not see a lot of my family and be eternally in debt. I have found through experience that family is far more important than most things. I missed a large part of my children growing up while I was ill and would be devastated to miss my grandchildren growing up.



Where does neuropsychology come in to it? Having been through the process that is diagnosis, treatment and recovery, I feel that I would be better suited to helping those who are going through those same experiences. There are some things that I experienced that I didn’t feel comfortable talking to ‘normal’ people about because they were too ‘weird’ I was often worried people would think I was crazy if I told them the things I was experiencing, If I had someone who had ‘been there’ to talk to it may have made my healing process easier and may be faster.

The bottom line is that I want to help people. I want to help the people who have the brain tumours and their families and friends. Finding a cure for brain tumours would be fabulous. We are well on the way to achieving that now. I feel that I would be much better placed on the ‘human’ side of things. I have enough experience and enough education that I am able to explain the more complex and confusing parts of treatment and surgery to people. I the reverse, I am also capable of communicating in the other direction, from patients to medical staff.



Things are insanely busy at the moment. We are moving in to our new house. Before that can happen we need new carpets put in, pest control done and security system resetting. Of course there is the packing to do as well. We have way more ‘stuff’ than will fit in the new house and we don’t use the majority of it anymore so I am sorting through as I pack. I have a couple of boxes and a roll of fabric for one community group. Six boxes of clothes, toys and bedding for our friend and his children, a lot of our currently unused furniture will be going with him as well. There are many bags of clothes and shoes to go to the community group who helped me source some of the things for those poor wee babes. I am also setting up a free library at our local community centre so am boxing up all the extra books to go there (a few hundred) On top of this insanity, my brother is getting married the first weekend of next month so it is all systems go for that!

It is all systems go and not much time for anything else. I assure you I am getting a lot of rest in as well. The fentanyl patches the specialist has me on at the moment make me quite tired so I do end up nodding off on the lounge, taking hours to get out of bed and taking whole days off in between busy days.

My brother and I went out for lunch and a movie the day the garage sale was on. It was too hard to watch people buying things that had belonged to our parents. It was nice to have some time without anyone else and just be able to talk about whatever we wanted to while also not being surrounded in ‘house stuff’. We had Vmax tickets for Ultron in 3D. It was an awesome movie but I kept nodding off from the fentanyl!

Oh! Last night I sent off a job application. We’ll see where that goes.

Next month there will be a whole lot more to tell you.

Sometimes I feel like I am completely recovered. At 4 years 3 months post op I ‘should’ be recovered. I do find myself thinking about how far I have come. I think about the things I am managing better than I was before and occasionally I get caught by something that hasn’t improved or I have to let go of something I hoped I would be able to get back and haven’t so far. The first winter after I came home I re-taught myself to knit so that I could keep my brain hole warm. I got very excited about it and bought lots more wool with a whole bunch of projects in mind. The problem was I got tired very quickly so I would not make a lot of progress. I would get frustrated and then leave it alone for days. By the time I came back to it I had forgotten how to knit. It was a similar situation with sewing. Pre-op I could put things together without a pattern. After I came home I could only use patterns and double check what I was doing at each stage.

While packing and clearing out things I have given away all of my knitting and crocheting gear as well as all of my embroidery stuff. I am giving away all of my fabric (except for a few pieces). This serves a number of purposes. I get to cull our ‘stuff’ as we currently have more than will fit in the new house. I won’t be taking up space in the house with things that will frustrate and upset me. This leaves more room for new things and things that I know I can do. It isn’t so bad after all.


I hope you are all safe, well and happy.