Firstly apologies for the huge gap between blog posts...no excuses really but have just been a bit busy living life, working, planning a wedding, getting married, having a honeymoon...oh and did I mention moving home (that was the same week we got married too...maybe a bit crazy in retrospect but more on that later). I'm exhausted just thinking about it all!
I also had a bit of a lull when it came to my blog posts and wasn't sure what to write about. So much changes with how I am feeling on a daily, weekly and monthly basis and sometimes I just want to sit back and be an observer for a bit, but recently I have had the urge to come back to my blog writing.
If you are a longer term subscriber you will see there have been some changes to the name and URL- this is because when I started the blog, Bertie Tickle was the name of my BT and it still is however I wanted to make things a bit more personal to me now and I think it's always a good thing to update occasionally to make sure it fits with everything you're talking about- I still believe that he will be exterminated at some point BUT for now I would like others to hopefully find my blog as I like to think I am still able to help others where I can.
So aside from the mini overview above I guess the best news which happened in June 2015 was that we were told that the suspected change back in November 2014 was a scanner error. It did cause 6-7 months of anxiety around what would be happening next and where we did not find this out until the June 2015 it meant the wedding which took place in May 2015 was slightly fraught with the underlying feeling that things were about to change again imminently, however perhaps that added to the event in the sense that I cherished every moment and we both had a wonderful day with our family and friends- thank you everyone for the well wishes. Here's one of my favourite pictures from the big day:
After the wedding we had a short mini moon over in Spain and we then went on a beautiful Meditteranean cruise later in the year starting in Venice and then going on to what is now one of my favourite places in the world...Santorini! I love Greece and would happily go back again when I can:
So that was my big 2015 news really. I had another appointment with my Neuro Oncologist at the beginning of January 2016 and this scan also showed "stable changes" so effectively I am still stable from the point of surgery in October 2013. I am still attending my hospital NHNN (Queens Square, London) every 6 months and my next appointment is now looming so I will be sure to update after this appointment with my news. The best news we can hope for is that I am stable again.
I spend a lot of my time constanly thinking about all my friends that I have met on this journey and people that I have come into contact with along the way. I am always thinking positive thoughts and sending well wishes to you all. My meditation practice has waned slightly- I no longer attend a class which is slightly regrettable however where I am agnostic, I generally practicesed to acheive a calm state as opposed to a religious reason or desire. I respect all faiths however for me meditation needs to be about inner calm and peace so I practice at home and using my "headspace" app on my phone as often as I can.
I am also tyring new things where possible. I haven't found "my thing" yet and I think that crafts will never be my strong point but my current love is trying to learn to play a Ukulele...very soothing and comforting and I find when I play this I just sort of zone out. It may not be for everyone and I have found some chords a bit trickier than others (don't get me started on reading music either or hand/eye cordination) but really I am just happy to strum away and make my kind of own tunes!
I spend a lot of my time constanly thinking about all my friends that I have met on this journey and people that I have come into contact with along the way. I am always thinking positive thoughts and sending well wishes to you all. My meditation practice has waned slightly- I no longer attend a class which is slightly regrettable however where I am agnostic, I generally practicesed to acheive a calm state as opposed to a religious reason or desire. I respect all faiths however for me meditation needs to be about inner calm and peace so I practice at home and using my "headspace" app on my phone as often as I can.
I am also tyring new things where possible. I haven't found "my thing" yet and I think that crafts will never be my strong point but my current love is trying to learn to play a Ukulele...very soothing and comforting and I find when I play this I just sort of zone out. It may not be for everyone and I have found some chords a bit trickier than others (don't get me started on reading music either or hand/eye cordination) but really I am just happy to strum away and make my kind of own tunes!
Work continues to be a bit of a challenge for me and I am going to write a post on this separately at some point. I am intrigued to know how others cope with the return to work and/or changes in their life post diagnosis, surgery and treatment. I have been generally lucky that I have had supportive employers which has meant I can maintain my profession but at the same time I have read some quite profound infomation from other BT patients who have commented on not feeling the same way any more about their work and perhaps having new desires to do something new or to try a different line of work which fits with their current situation. I am certainly conflicted in this area and it does make me very stressed at times to the point where I question things alot. When you have a "?" what I call a question mark diagnosis/prognosis what is the answer to some of this conundrum...I definitely do not hold the answer to this as yet, but I will get back to you when I have found out...
So in other news last year in May 2015 as I mentioned we also moved into our new home. There are several reasons around this one. Firstly we wanted to downsize to make everything more affordable and to support ourselves in the future should anything change in our circumstances and also because we had an opportunity and we thought why not. It is a lot smaller than where we lived previously but its newer and lovelier (is that a word?) and we are happy here. I do worry about what the future holds, but for now it is a little piece of something for us both and also it has become a safe haven for me and a place where I can relax when it all becomes a bit too much. I do still dream of a chocolate box cottage in a village somewhere (or another bedroom) but for now this is good. Life is good.
So I think that's it really and we are just about caught up with where I am with things. Overall re meds and regime, there is nothing new. I am still trying to eat healthily and I am still trying to exercise as much as possible. My meds remain the same for epilpesy. There is one new thing that we introduced and that is alongside some of the other supplements I take and that is in conjunction with the Care Oncology Clinic in London http://careoncologyclinic.com/
I know this is not necessarily affordable for everyone as it is an optional clinical trial however between myself and my family (and lots of research by my Mum) we decided that this could be something I could try and I have been with the trial since around late 2015. I have added the link for those who may be interested. My Neuro Oncologist is fully supportive of this trial (with the caveat that it is affordable for me and does not interact with any of the other medications which I take- which it doesn't) and my GP is also supportive and willing to prescribe medications as recommended by the trial Oncologists. If anyone has any questions about my experince with the Care Oncology Clinic then please feel free to contact me. I can also at some point share a post regarding all the medications/supplements that I take if this is helpful.
That's all from me for now,
With lots of love,
Gem Xx
So in other news last year in May 2015 as I mentioned we also moved into our new home. There are several reasons around this one. Firstly we wanted to downsize to make everything more affordable and to support ourselves in the future should anything change in our circumstances and also because we had an opportunity and we thought why not. It is a lot smaller than where we lived previously but its newer and lovelier (is that a word?) and we are happy here. I do worry about what the future holds, but for now it is a little piece of something for us both and also it has become a safe haven for me and a place where I can relax when it all becomes a bit too much. I do still dream of a chocolate box cottage in a village somewhere (or another bedroom) but for now this is good. Life is good.
So I think that's it really and we are just about caught up with where I am with things. Overall re meds and regime, there is nothing new. I am still trying to eat healthily and I am still trying to exercise as much as possible. My meds remain the same for epilpesy. There is one new thing that we introduced and that is alongside some of the other supplements I take and that is in conjunction with the Care Oncology Clinic in London http://careoncologyclinic.com/
I know this is not necessarily affordable for everyone as it is an optional clinical trial however between myself and my family (and lots of research by my Mum) we decided that this could be something I could try and I have been with the trial since around late 2015. I have added the link for those who may be interested. My Neuro Oncologist is fully supportive of this trial (with the caveat that it is affordable for me and does not interact with any of the other medications which I take- which it doesn't) and my GP is also supportive and willing to prescribe medications as recommended by the trial Oncologists. If anyone has any questions about my experince with the Care Oncology Clinic then please feel free to contact me. I can also at some point share a post regarding all the medications/supplements that I take if this is helpful.
That's all from me for now,
With lots of love,
Gem Xx
