Posts Tagged ‘brain tumour awareness’

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

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

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?

There are different types of Astrocytoma but I have not exactly been told what mine is.

What is it?

Astrocytomas are tumours that arise from astrocytes, astrocytes are star shaped cells that make up the “glue-like” or supportive tissue of the brain and spinal cord. While they are described as star shaped that is a basic description, if you look at images of them they basically have a central point followed by star shaped legs and then roots. It appears as though the tumours sit in the center of the astrocyte but I’m sure your consultant will be able to tell you more.

So, what types are there?

Below are descriptions of the various grades of these tumors:

  • Pilocytic Astrocytoma (also called Juvenile Pilocytic Astrocytoma)—These are grade I astrocytomas typically stay in the area where they started and do not spread. They are considered the “most benign” (noncancerous) of all the astrocytomas. Two other, less well known grade I astrocytomas are cerebellar astrocytoma and desmoplastic infantile astrocytoma. Pilocytic Astrocytomas generally form sacs of fluid (cysts), or may be enclosed within a cyst. Although they are usually slow-growing, these tumours can become very large.
  • Diffuse Astrocytoma (also called Low-Grade or Astrocytoma Grade II) Types: Fibrillary, Gemistocytic, Protoplasmic Astrocytoma—These grade II astrocytomas tend to invade surrounding tissue and grow at a relatively slow pace. Diffuse Astrocytomas tend to contain microcysts and mucous-like fluid. They are grouped by the appearance and behavior of the cells for which they are named.
  • Anaplastic Astrocytoma—An anaplastic astrocytoma is a grade III tumour. These rare tumours require more aggressive treatment than benign pilocytic astrocytoma. Anaplastic Astrocytomas tend to have tentacle-like projections that grow into surrounding tissue, making them difficult to completely remove during surgery.
  • Astrocytoma Grade IV (also called Glioblastoma, previously named “Glioblastoma Multiforme,” “Grade IV Glioblastoma,” and “GBM”)— There are two types of astrocytoma grade IV—primary, or de novo, and secondary. Primary tumours are very aggressive and the most common form of astrocytoma grade IV. The secondary tumours are those which originate as a lower-grade tumour and evolve into a grade IV tumour. Astrocytoma Grade IV (glioblastoma) may contain cystic material, calcium deposits, blood vessels, and/or a mixed grade of cells.
  • Subependymal Giant Cell Astrocytoma—Subependymal giant cell astrocytomas are ventricular tumours associated with tuberous sclerosis.

Location 

Astrocytomas can appear in various parts of the brain and nervous system, including the cerebellum, the cerebrum, the central areas of the brain, the brainstem, and the spinal cord.

Symptoms

Headaches, seizures, memory loss, and changes in behavior are the most common early symptoms of astrocytoma. Other symptoms may occur depending on the size and location of the tumour. With my Astromcytoma being grade 2 I guess this is why I had plenty of headaches, mine was only found after having a major seizure that came on all of a sudden with no other seizures previously. My memory has always been bad so I can’t comment on that but maybe I’ve had it all my life as I’ve never had brain scans.

Cause

Like many tumour types, the exact cause of astrocytoma is not known.

Treatment

Treatment options depend on the type, size, and location of the tumour, if and how far it has spread, previous treatment received, and the patient’s overall health. Treatment methods for the various types of astrocytomas are briefly explained below.

  • Pilocytic Astrocytoma: These tumours are often removed by surgery alone. In adults and older children, radiation may follow surgery if the tumour cannot be completely removed. Or, the patient may be watched carefully for signs that the tumour has returned.
  • Diffuse Astrocytoma: If the tumour is accessible and can be completely removed, the only additional care required is follow-up scans. In adults and older children, radiation may be suggested in addition to surgery. Radiation may also be used to treat an unremovable low-grade astrocytoma. The role of chemotherapy in treating these tumours is being investigated. I my consultations I was told that chemotherapy and radiotherapy are unlikely to work.
  • Anaplastic Astrocytoma: The first step in treatment of anaplastic astrocytoma is surgery. Radiation is then used to treat the remaining tumour. Chemotherapy may be recommended immediately after radiation or when and if the tumour recurs.
  • Astrocytoma Grade IV: The first treatment step is surgery to remove as much tumor as possible. Surgery is almost always followed by radiation. Chemotherapy is often given at the same time as radiation and may be used to delay radiation in young children.

Tumour re-growth can be treated with additional surgery, another form of radiation, a different chemotherapy drug (or combination of drugs), or any number of new approaches to treatment currently in development.

With my Astrocytoma it is a wait and watch with MRI scans, 99% has been removed (debulking they call it) but it has not been followed up with radiotherapy or chemotherapy. Like all tumours whether they are benign or cancerous, you never know if it’s “cured” but from my understanding in any of the cases you are just buying time, we all have to die I guess but some of us sooner than we’d like. If you are physically and mentally fit like me, we just carry on in the rat race with most of us doing jobs we don’t like to make our bosses happy and richer than us. Personally I would like to pack my job in and spend what time I have with my family but thats not financially viable.

I have been told I could have 5, 10, 15, or even 20 years left on this planet and I would like to hear stories of people living longer than 20 years after diagnosis. Those of you with grade 3 or 4 maybe reading this and thinking how lucky I am, I have told I am lucky, Really! none of us are lucky but some have more time than others.

It is now 26th November 2017 and I have an MRI scan on the 15th december while I won’t be updating this post, the result will be found blogs menu or in treatment section if I have bad news.

All of you who read this, I wish you all the best.

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 🙂