Posts Tagged ‘Brain Tumour’

For four years now I have been on Keppra and Lamictal both slowly increased to… Keppra 1250mg morning and evening, Lamictal 250 morning and evening. My belief is that the side effects of these have contributed to the end of my marriage, many reasons were given for the failure without telling I was changing (shame as married couples should talk), so here are some of the reasons…

  • Agitation or restless
  • Problems sleeping
  • Panic attacks
  • Aggression, anger or violence
  • Depression
  • Anxiety
  • Personality change
  • suicidal thoughts

Looking back now I see I had experienced all of them which was hurting her however, it should have been talked about so I could get help, change tablets, seek counselling or something.

So some advice for all of you out there, if you think you may be experiencing these side effects speak to your partner and see if they have noticed a change in you before it’s too late like my failure to notice, speak to your doctor or specialist nurse. After speaking to numerous people about this drug they say it’s evil and shouldn’t be used and I now agree. No doubt surgery has some blame too.

I would point out that I never physically hurt anyone but I guess emotions are stronger than physical pain.

 

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Almost forgot to post this despite saying I would, not long ago I was contacted by the Royal College of Art regarding brain injury Telerehabilitation project. Two students wanted to interview me regarding my brain tumour experience as they saw my short story, I was curious as my situation is a lot different from others and wasn’t sure what I could contribute.

I gave them my website as it has my full story but they wanted to interview me face to face.

It was arranged and two nice young ladies came for an informal interview that I hope helped them.

If you have been contacted, it might be worth giving them the time, I remember being a student and having to do something similar and it is hard if people won’t take part.

The interview is about your experience both physically and emotionally with a hope of designing or re-designing a service, this is not just about brain tumours but anything that can cause brain injury and how it affects you and your family.

If you haven’t been contacted and fancy taking part I am sure sure they won’t mind if it is not too late..

Vanessa email: vasiliki.karaoglou@network.rca.ac.uk

or

Ji Young Lee email: jiyoung.lee@network.rca.ac.uk

 

All best

Derran

A recent experience has shown me that some patients don’t confide in their parents and parents don’t always talk to their siblings about the deeper things, feelings, emotions and fear.

While we all may be suffering from brain tumours, today is especially for mothers. If you are a mother with a brain tumour, you are still a mother not just a brain tumour patient with children. If you can celebrate, celebrate what you have while you have it. My thoughts go out to all mothers out there hoping you can have a nice day and something to look back on.

Best of luck to the future and happy mothers day.

 

Just a quick blog today, with winter in full effect for the past few days I hope everyone is ok and not badly affected by NHS issue’s, luckily I’ve not had to use emergency services but from what I’ve seen the NHS has been affected in many areas to the point of staff sleeping at the hospitals to ensure patients get the care they need.

I have to give them credit for what they do, personally I think they do a fantastic job even though there are issue’s.

While from time to time we complain about the NHS, just think that some countries charge for treatment.

All the best to everyone for BT awareness month.

As we all know cancer is such a cruel disease, has so many forms and brain tumours being one of the worse, as with my case it is not cancer but it can’t be completely removed so there is a chance it will grown again and become cancer. Patients have to go through horrifying treatments such as radiotherapy, chemotherapy and surgery. I’ve had surgery but don’t want to go through radiotherapy and chemotherapy and at present with a sane mind would more than likely want euthanasia to be legal in UK. That is a debate for another time as it is not to be taken lightly and I might change mind.

Everyone of us dreads the day we are told it is cancer and even more so that it is terminal, many with cancer choose to fight it until the bitter end and try to remain positive and others quite the opposite. While browsing through a brain tumour support group I found a post that was quite touching and asked permission to use it. This post shows that there is positivity despite what people go through.. (for now I will keep her name out unless she would like to me to add it)

“Today found out loosing my battle with my cancer (Oligodendroglioma). Brachytherapy didn’t work like they where hoping. I hope all of you when your battle against cancer. There isn’t anything left they can do for me. But I am praying you all win against this awful illness.”

After asking her for permission to use her post she also replied with..

“When you post just remember I don’t want anything. But if you can help other cancer patients I would be grateful. I am ready to pass on”

While this is a really horrible situation to be in, how amazing is her selflessness!!

So, if anyone reading this whether touched by it or not, please give to brain cancer research. There simply isn’t enough being done by the government. While the government has recently pledged to help…

https://www.gov.uk/government/news/brain-cancer-research-to-receive-45-million-funding

This will help but not enough and simply too late for many.

I send my best to her, her family and loved ones as well as anyone else going through this.

Thank you for taking the time to read,

Derran

A sigh of relief Tuesday 20th February 2018.

MRI was on 15th December 2017 so I guess this is how bad the NHS has got in UK, 2 months is a little long for results I think however, I would take a guess that if it was bad news I would have been called in earlier for a consultation.

Took a day off work as I usually do.

Took 30 minutes to travel to hospital

5 minutes waiting

3 minutes to tell me nothing has changed since previous scan and a new scan will be December 2018 and results in February 2019.

45 minutes to travel home.

So, for now it is possible you will have me for another year in annoyance to my wife. Fingers crossed that the same consultation will occur next year. Next appointment will be 8th March to review my tablets.

All the best to everyone and hope you get good news.

While Christmas may be over, I do hope those who could had a good one. For those who didn’t I wish you all the best for the future. For some reason this time I am not calm about going for my results in January, usually I don’t care but I feel something is different this time, keeping fingers crossed! Anyway, new year is on it’s way so I will continue as I have done before and celebrate what I have now and how lucky I am to a certain degree (I don’t like using the word lucky as none of us are)

So once again, I wish you all a Happy New Year and hope 2018 is a better one.

After having surgery I was advised that there are a number of things that could happened and I would need MRI scans every 3 months and reviews on medication every 6 months. The things that could happen are…

  • Become seizure free
  • Seizures could be slight
  • Seizures could be worse due to scaring on brain

Luckily up to now I have only had slight seizures every so often especially if I miss a dose of medication or take it too late.ย  The seizures started off very slight and you wouldn’t know I was having one.ย  These have started getting stronger but nowhere near as bad as they was and they do not affect what I am doing at the time I have them.

At the moment my eyes flicker to left and I may move my head but I am able to talk and do things while it is happening, usually I will try to hide it as it passes in a about 10 seconds.

Due to the fact that in the past I have had grand mal seizures I am unable to get my driving license back until I am a year free of minor seizures. It does have benefits as I can now be taxied everywhere and can drink :).

For now life will continue as it has before but โ€œLife moves pretty fast. I do stop and look around once in a while, as I don’t want to miss it.โ€ ๐Ÿ˜‰

Hope you enjoyed this rather long winded true story, I will update it as things happen until the time comes when I can’t.

Other blogs will be information that might be of help so for now that’s it and have a listen to this…

Life without brian.

 

With recent discussions regarding my health I thought I haven’t updated the blog in a while. So here it is ๐Ÿ™‚

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 ๐Ÿ™‚

The date 23rd July 2017 marks the 3rd anniversary of having surgery to remove a brain tumour. While an anniversary usually celebrates a happy occasion, this isย  something worth celebrating as I have had no further growth.ย  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, at Christmas my scan results confused the neurology team and gave me a bit of a scare, it was sent to a team of experts who reviewed it and came to the conclusion that it had not changed. Keeping fingers crossed it will be better this year as next scan will be around December and results about Januray.

 

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