Archive for the ‘Blogs’ Category

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.
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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 me 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.

 

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.

Still here kicking around and plodding on with life, nothing really to report other than I have my scan results on the 20th. Finally my mind will be at rest since 15th Dec, thats right, I had my scan on 15th Dec and finally get my results next week!! Unfortunately this is the state the NHS has got in to.

Forgot to post happy valentines and a post a saw today reminded me, it said…

” To my wife, I love as much today as I did yesterday but it is a lot cheaper lol”

So I hope everyone who was able had a happy valentines day, to all those who have lost loved ones or currently battling this horrible fight, I wish you the best for the future.

All the best,

Derran

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.

15th december 2017

Another MRI scan completed today, a little snooze in a magnetic tube courtesy of the NHS Nottingham City Hospital. Scan went fine as usual but won’t get scan results until January 2018. Slight bruising left around vein this time which is unusual as they are pretty good at not leaving a mark, no bleeding so no big issue there.

While looking at the facebook support groups I am part of, someone had posted information about Gadolinium poisoning from contrast dye causing serious health issues and in some cases hospitalisation. Ever scan I have has had contrast dye used but I am not sure which one, I have seen Gadolinium on paperwork from previous scans but it is not mentioned on the one today. I’ve not has any side affects so wondering if anyone has?