I would like to wish you all a very HAPPY NEW YEAR!!!
Wherever you are tonight or whatever you are doing I hope you are having a great time or doing something that suits you and makes you happy.
I have chosen to stay in this year as it feels right and not only that I feel like I want to reflect on what has happened over the past year and just basically relax.
My plans were very up in the air until the last minute due to feeling unwell with the cold and also the infection with the wound.
Luckily I was able to see a wound specialist at my Mum's GP surgery in Surrey who was recommended to us and she has been able to help treat me (and saved what could have been an unnecessary trip to London!)
I am having a Silver Oxide style of treatment as it's something to do with how the skin has healed (or not healed in my case) and the only way I can describe it is like having a giant matchstick rubbed on the infected area which causes a reaction to help heal the wound in a better way and hopefully end this cycle of scab, fall off, infection, scab and round again etc. I will update on my progress as the treatments should be competed by Monday 6th January.
My Mum and I decided that I could come back home to spend New Year with my partner and I jumped at the chance as I find it hard being away too long (and of course I miss my own space and surroundings) so I'm back for a while until the next trip to London which is another psychology appointment on Monday 6th January.
2013 started well but it wasn't all roses (as most of you know) so I'm looking forward to a fresh start and new beginnings.
Xmas Day 2013 was very special to me this year as my lovely Carl (wait for it!!).... proposed- yay :) I feel like one lucky lady indeed and am so happy. We had a beautiful day together and he said it just felt very right to propose on that day. I will of course share more about this in the New Year!! For now I want to revel in the joy...Oh but here is my pre ring, ring for you to see:
I love the quirkiness of this ring and I love that my partner Carl has tried to ensure when I look back over 2013 that I don't feel it's all bad- he's a keeper in my eyes.
I feel very blessed and lucky and cannot wait to share everything with you all over the coming months, although I'm not sure how quickly we'll marry, that remains to be seen as I think we'll need to save a bit first!
What I like about the above too is that I feel like I have a focus on something now and that's a nice feeling. I think if you can become engrossed in some sort of project be it personal, work or leisure time, that it helps you to just get on and live your life as opposed to focusing too much on the distant future or wondering about the 'what ifs'.
On that note I have a quote I would like to share with you all:
"Yesterday is History, Tomorrow a Mystery, Today is a Gift, That's why it's called the Present"
I am not sure who originally wrote or said this but I think it's beautiful.
With lots of love,
Gem xx
Whhhhhhhaaaaat?! Congratulations! So happy for you both! Emma & Jonny xx
ReplyDeleteThank You Emma :) I am so happy!! Yay!! I told Carl about our convo at Dave's wedding- Aww he's a gooden in my eyes! I'm excited to keep everyone updated- may have to start another blog! Happy New Year to you both. Lots of love xxx
DeleteCongratulations gemma xx I'm so happy for you both xx Paula xx
ReplyDeleteThank you Paula- Happy New Year- Lots of love xxx
Deletehey gemma :) congratulations on the engagement! i've finished reading through your blog now and watching your youtube cast. seems we have a similar taste in tv and diseases. my surgery isnt going to be awake so perhaps we have different surgeons? which isnt surprising i guess considering there is over 20 of them there. a couple of questions. do grand mals hurt or are you completely unaware of them happening? our tumours are in completely different places and different sizes soo i assume the neurological after effects will be differentr but how bad was the pain after? thanks for getting in touch :)
Deleteben x
Hi Ben, Thank you for your comments. I've been editing tonight as the text format in my blog was all over the place (I use my iPad and iPhone blogger app mostly but I find this makes all the text weird) so I finally got on the laptop this evening so I hope it was all ok for you to read through! I made the vlog about the craniotomy as all I could find on the internet seemed to be live ops and that was not something I wanted to see as I'm squeamish! Anyways I would advise not looking up anything like a live op as it may make you feel more unsettled and you want to be calm. As you can see I only found out about 2 weeks before my op that I needed the awake craniotomy (revealed in the functional MRI scan) so I was more anxious in the sense I could not get my head around it as I thought I would be asleep (not that I feel either is better or worse) as I think either way it makes you anxious- again fear of the unknown. I'm reading your blog as we speak so I am catching up with your type of tumour etc- do you have an email I could contact you on as then I could give you more info re surgical team. With regards to the pain I had no pain before the op (apart from occasional mild headaches, numbness in left hand fingers, hiccups, brain fog and mental health issues as I've mentioned). My seizures were all grand mal in the lead up but they all happened when I was asleep so I have no recollection. After the op I had pain at the site of incision, around my eyes (as the pictures show) and a puffy face to the left (where they had to be most aggressive with removal). It was most painful for around 5 days and I did have sickness but they are very good at giving you morphine, painkillers and anti sickness via your cannula/s as needed- do not be afraid to mention you are in pain. I slowly weaned off morphine and then just had paracetomol when needed for headaches or any pain near the wound. I currently have an infection in the surface wound which is being treated and other normal post op things I am adjusting to etc. I hope this helps in some way- as I say do email me or get in touch and will let you know any additional information where I can help!
DeleteSorry I mean right hand side as my tumour is located to my left hand side!
Deleteall the dates were messed up, it had your pre -op under todays date so at first i thought you were going for a second surgery but it figured itself out. i had one surgeon in cardiff want to do awake and plymouth and london wanted to do asleep. plymouth didnt have fMRI though.
Deleteemail is benwatterson@msn.com
sounds all pretty awful. did you sleep a lot? is it a manageable amount of discomfort?
need to tick the notify box
DeleteThis comment has been removed by the author.
DeleteHi Ben,
DeleteSorry are you asking me to notify you? I've ticked the box with the comment so hope that works!
Yes I noticed when I was editing that my dates became messed up so I had to manually go back and change the dates around. I will send an email to you now- thanks for your address.
Will email you re all the above too with my surgeon's opinion on both. I have now read all of your blog too.
I deleted the previous comment as I had made a lot of typos again! I'm still getting used to my new laptop!
Hi Gem, firstly I'd like to say congratulations on your engagement and also thanks for sharing your story. I too had a craniotomy last year. My tumours were also graded as a 2 but will also need to be monitored for many years to come. I hope you are recovering well, my surgery was now 4 months ago. I found the first 6 weeks really hard and still occasionally need afternoon naps but it gets better. I hope you are continuing to recover well.
ReplyDeleteI'm also taking Keppra and another anti-epileptic and recognise the fear that comes with having these drugs and the possibilities of seizures occurring. I have not had a seizure for almost 4 years ago and whilst the medication seems to be doing its job well I also believe that a positive mindset helps tackle that fear and reduce the risk of seizures occurring. Especially considering the fact that for me, anxiety is something that can trigger them. I've also been writing a blog which has helped me through the last few months as well. Feel free to have a read. I live in Australia and don't know any other people my age who have gone through similar experiences so it is really helpful to read about other people's journeys and realise you're not alone. Take care, Cass
Hi Cass,
DeleteThank you so much for your message- great to meet you and hello from across the globe! I am most certainly going to read your blog after and find out all about you too :)
I am sorry to hear about what you have been going through- I am glad that your results showed a grade 2 and I hope that your BT remain static and wish you well for good future scans. Are you following a different diet or lifestyle plan now out of interest??
I feel well- as you say the initial adjustment takes a while but amazingly the body (including the brain) has this amazing way of recovering themselves. I try to tell others this now as someone I met with a BT before the op told me this and I thought no way!! But it really is true.
Yes Keppra- I am tapering off the Phenytoin and on to Keppra (1000mg p/day with one 500mg tablet taken once in the morning and once in the evening). The tapering has been hard at stages and there was a period over Xmas where I had a mini freak out but I think it was the combination of drugs in my body and I also had the typical Xmas cold/flu and I think all of these things mixed together made for a bad combination!
I can totally relate to the fear of seizures- I have mentioned this before but I fear the seizures more than the tumour if that makes sense (even though my seizures all happened during the sleep phase). My biggest fear is just dropping down I guess but I try and put that out of my mind- I have a bracelet with all my emergency contact stuff on it so if the worst happens, if I am alone I hope I'll be ok!
I am so pleased to have met you as I too believe the power of the mind and a positive outlook is like food for the soul! I have worked hard to reduce stress and I implement my meditation practice where I can (I need to focus on this again more seriously as I practiced this a lot more pre op and have some posts on this).
You are definitely not alone and you can talk to me whenever. Although I belong to a local BT group, I too have not met many other people my age along the way, just a handful of people either younger or older so I feel good knowing that my blog reaches others as I love meeting and speaking to other people as it's nice to know you're not alone as you say.
Lots of love,
Gem xx
hows the infection coming along?
DeleteHey Ben- all good- I've just replied to the other message you left so hope you had a notification- going to catch up with your blog now!
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