Posts Tagged ‘support’

At the time of diagnosis they said I could have a life expectancy of anything between 5 and 20yrs. Well, I’ve passed the 5yr milestone and approaching the 5yr year post op milestone in July. Still no sign of growth so that was very good news on 19th Feb 2019 and will be monitored yearly as normal.

Needless to say, this is good news so I felt the need to update the blog for anyone reading.

Unfortunately there is no good news on the marriage front, we are still separated with no sign of getting back together. Living on my own since Sept 2018 has been a struggle with not having support from a loved one, I now understand the struggle some people go through and feel how lucky I am to not battle cancer on my own.

I’m going to put my neck here and say if anyone needs someone who is not biased to talk to just message me. I made a friend in America as she needed someone to talk to and have a laugh with, she said I helped her in her difficult time so I have done what this blog was set out to do.

Once again I would like to thank the NHS for the hard work they do with underfunding for brain cancer cases.

Take care all.

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I heard you sigh!
Thought I’d better raise one’s head before you think I’m dead. I think last post was about marriage failure and contributing factors. Personally I think the tablets and surgery has changed me slightly. GP and epilepsy specialists think not. Due to my situation/torture I went to the GP about the stress I was going through, all sorts of up and down feelings, panic attacks, aggression and the feeling of wanting a quick way out. They refered me to a therapist.

Yes I’ve said it! THERAPIST

It needn’t be a taboo word, whether or not you have a brain tumour or related to or friends with someone who has one. We all suffer mental health issues at some point in our lives. I don’t think rasing awareness does much because there are so many things that could fall in to the category of mental health. I clearly thought I was being brave and coping well but infact was being wore down by it all and i can see it now.
Anyway, was let go after a few sessions (probably thought “can’t deal with this nutter”). Having moved out of the family home and living on my own I feel better for it and the therapist helped through this period (I won’t go in to full details as you would think I made it up, even the therapist was slightly shocked and amazed at the same time lol), sounds strange doesn’t it. I’ll tell you why, the type of stress at home with a failed marriage infront of kids is different one from living on your own with access to your kids; where both parties are not under eachothers feet making the situation worse.
Transport is an issue as my wife was the “taxi”.
If you live in the UK it might be good to speak to your council office to see if you are eligible for a free bus pass, I am because of the epilepsy (if you live in Derbyshire it is called a gold card and it is not just for pensioners). It has now given me a little freedom, never bothered with it before as I was with my wife and she had the family car.
Christmas coming soon, I’ll stick another post up soon.

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.

 

A link to a fellow blogger covering a lot of information like my blog…

Brain Tumour Warrior


 

There are a lot of sites out there that can give you info and help from forums to support charities, I never used any support charities but here are some links I did read through…

http://www.braintumoursupport.co.uk/


Everyone know MacMillan but here is their link in relation to astrocytomas…

http://www.macmillan.org.uk/information-and-support/brain-tumours/types-of-brain-tumour/astrocytomas.html


A good group to join is the facebook group “The brain tumour charity”, there are over 3,000 members all of which are supportive and in similar situations…

https://www.facebook.com/groups/114009085471466/

or the website…

http://www.thebraintumourcharity.org


Another good website to have a look at is..

http://www.braintumourresearch.org/


Another good support group I found is the astrofund who concentrate on the support for those with low grade Atrocytoma tumours…

Website : http://www.astrofund.org.uk/

Facebook Group : https://www.facebook.com/groups/240720846050761/


Other links can be useful such as Wikipedia, NHS, WEBMD and just google but be careful what you read as almost all sites tell you that you are going to die.