Archive for the ‘Blogs’ Category

With recent discussions regarding my health I thought I haven’t updated the blog in a while. So here it is 🙂

The last blog mentioned..

“My Lamotrigine has been increased from 150mg twice a day to 175 twice a day to see if they will help my seizures. Give that a month and if no change, to increase that to 200mg twice a day, failing that, they will be reduced and another tablet introduced.”

Since then I have been to see my Epilepsy specialist nurse for medication review, not on the exact date but at some point my Lamotrigine was increased to 200mg, then 225mg and now it will be 250mg twice daily. Keeping fingers crossed that this will help as not much has happened being on 225mg other than the strength of the seizures. If this does not work then Zonisamide will be introduced, scary isn’t it? sounds like I am going to be Zombiefied!!

My aim really is get the frequency down from every 10 days to as far as I can as I want my driving licence back.

I’m sure many of you are in the same boat and understand what I am really saying deep down, people not in our situation don’t understand the loss this is and how it affects everything you want to do.

However, must keep positive as I have been luckier than a lot of others. If you can and are able (like me) to get out and about, take time to step away from the rat race. I’ve been trying and my photography hobby has increased somewhat.

One of my favourite seaside towns, Whitby looking through a whale jaw bone at the ruins of Whitby Abbey.

Take care everyone and bye for now 🙂

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Well, just a quick update. Not posted for a while as you might see but I am still here and well. My Lamotrigine has been increased from 150mg twice a day to 175 twice a day to see if they will help my seizures. Give that a month and if no change to increase that to 200mg twice a day, failing that, they will be reduced and another tablet introduced.

The only news I got at present is that on Sunday 9th April 2017 I had two seizures, both were light but one at 4pm and one at 9pm. Seemed to be no link but may have missed a dose of tablets as I get confused some days or busy and forget. This shouldn’t be a problem because the oncology specialist nurse say that the change won’t affect you that quick. It would be interesting to know how many have this issue.

Luckily I get free tablets but that must be costing the NHS a fortune!

I’m on yearly MRI scans now so nothing to report on that front, hope you all are doing well and bye for now.

 

The date 23rd July 2016 marks the 2nd anniversary of having surgery to remove a brain tumour. While an anniversary usually celebrates a happy occasion, this is  something worth celebrating as I have had no further growth.  For some it will be a fight for survival, surviving or in my case waiting on that time bomb to go off. For some odd reason it had affected me this year when usually thinking and talking about it normally doesn’t. Keeping fingers crossed it will be better next year as next scan is in September and result will be about end of October/early November.

In order to mark this occasion I am releasing an ebook. The ebook is slightly different to this blog as it covers a little more on the personal side of the experience.

LIFE WITH MY BRIAN-Living With A Brain Tumour

I wish all patients and families who are going through this journey all the best and hope you get some good news.

Anniversary

Posted: June 4, 2016 in Blogs

The date 3rd June 2016 marks the 2nd anniversary of being diagnosed with a brain tumour. While an anniversary usually celebrates a happy occasion, this is certainly not something worth celebrating but more of a marker. A marker in time where your life changes forever. For some it will be a fight for survival, surviving or in my case waiting on that time bomb to go off. For some odd reason it had affected me this year when usually thinking and talking about it normally doesn’t. Keeping fingers crossed it will be better next year.

A change

Posted: April 22, 2016 in Blogs
Tags: , , , , , ,

Not been online lately as it can get depressing reading about other people’s brain tumours so decided to give it a break and take up new hobby. I’ve always used nitro engine powered rc cars and found a little project nitro powered plane. Spent quite a bit of time researching it and got it running. While being enjoyable it has also taken my mind off things. Here is a before picture and in the future if I don’t crash it I will post an after pic.

So for all you brain tumour sufferers out there what do you do to take your mind off things.

image

My Recent Development

Posted: April 2, 2016 in Blogs

15th March 2016, now 1yr 8 months post operation latest MRI scan results show little to no change. Any change that has been seen has been attributed to scar tissue.  Appointments have now been chan…

Source: My Recent Development

Sounds a bit morbid doesn’t it? well not today, feel like being a bit positive after a walk with my camera. Since surgery I’ve not really been out and about doing the hobby I love so I decided it was about time even though a little rusty with the camera. Sometimes I think it will do good to focus on something other than the unwanted lodger and more what you can still do so here are a few pics taken recently…

Daylight followed by afternoon light and then stages of sundown(dying light)

15th March 2016, now 1yr 8 months post operation latest MRI scan results show little to no change. Any change that has been seen has been attributed to scar tissue.  Appointments have now been changed from 6 monthly checkups to 9 month checkups.  While this a small victory for me it is quite a hollow one compared to what I’ve read recently. Three years ago I wouldn’t have looked twice at brain tumour issues specifically(but i’ve always given to cancer research).  With this month being brain tumour awareness month there has obviously been a lot of focus on this, the stories I’ve read put mine to shame and I am so lucky mine is what it is.  Sounds a bit strange as a brain tumour is devasting in it’s own way for both patient and family.

I have been spreading awareness myself and including this blog website in hope that it will make people aware.

Positivity

Posted: February 19, 2016 in Blogs

Lately I have noticed a lot of positivity within the brain tumour support groups despite the constant up and downs we all go through. There has been a fair bit of coverage on the internet and reaching the media regarding alternative therapies, success stories and people trying to make a difference.

My own positive attitude comes from the fact that I have a grade 2 which isn’t as bad as a grade 4 and i’ll worry about the future when it comes.

Anyway, there is a young lady that has been trying to help and support people within these support groups whose name is Angela and has a grade 2 Astrocytoma. Like myself she has created a blog and making it public, which I am always being told “you are brave for making it public”.

She has some great information on her blog, check her blog…

Brain Tumour Warrior

Also while we are on the subject of websites, facebook offers some good support groups(closed so your comments are private)…

The brain tumour charity.

Brain tumour support.

And the Astro Brain Tumour Fund – Low Grade Glioma Support, this concentrates on low grade whereas the others cover all types.

 

For now, keep positive everyone, look out for information as a lot is starting to come out with regards to treatments and medical advances.

 

Been a few stories lately about alternative treatments and/or a combination of treatments.

Apparently it has been proven that Canabis can kill cancer cells and human trials are being carried out.

http://theantimedia.org/federal-government-finally-admits-cannabis-can-help-kill-cancer-cells/

Another link to the story…

http://personalmedicaltreatments.co/very-first-human-trials-using-cannabis-to-treat-brain-cancer-under-way/

Another link to pretty much same story…

http://personalmedicaltreatments.co/new-research-finds-cannabinoids-may-help-drastically-reduce-forms-of-brain-cancer/

Got to be something to it rather than fake reports.

Another interesting one I read not so long back was about using a refined deadly virus on a tumour to kill it and it has worked in animals but human trials have not been done and could be risky due to unpredicatable immune system.

http://www.bbc.co.uk/news/health-26188765

There also seem to be a little more hope on the horizon with new technology that can reduce the “inoperable” rate in patients.

http://www.crainsdetroit.com/article/20151219/BLOG010/151219780/henry-ford-hospital-redefines-meaning-of-inoperable-brain-surgery

 

Seems that research is starting to show results.