Posts Tagged ‘grade2’

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.

Friday 18th Sept 2015, had a consultation regarding medication. Nothing exciting or too interesting.  Still having seizures on average of every two weeks is too much apparently, the meds are obviously not working as desired regardless.  1000mg a day is a small dose so my Keppra has now been increased to 750mg in evening and 500mg in the morning for two weeks and then 750mg both morning and evening to see if that settles them. This has to be done slowly because it takes about a week for any changes to settle in your system.  Either way I am starting to rattle as I walk now 😉

So the myth of missing a dose causes seizures can be settled now 🙂

Wednesday 25th November 2015, Keppra incresed last month to 750mg morning and 500 evening and then 2 weeks later 750mg both morning and evening. Seems to be no change and getting minor seizures around every 10 days. Will be seeing the nurse at the local GP, don’t know why as I am under consultants for reviews.

On the 21/8/16 my Keppra was increased to 2,000mg a day and as this hadn’t helped much it was increased to 2500mg per day. I’m getting no side effects but feel this had no real effect on me.

It was decided that I should increase my Lamotrigine to 450mg a day and on 02/07/17 this was completed (as you know it has to be increased slowly). This has had a slight effect of reducing the length of the seizure and a minor changed in strength of the seizure. It was discussed that I may have to be put on another tablet.

Been a while since updating this, today (17/12/18) I am still on 1250mg keppra twice daily but Lamotrigine has chnaged to 250mg twice daily, nothing has changed seizure wise but maybe thats stress at this particular time, they don’t want to introduce another tablet because I “Tolerate these well”. Love that terminology!

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.


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.


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.


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


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.

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.

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.


23rd July 2014

The morning came and I was first on list for 5hr surgery, I had a pre-op assessment and surprisingly the nurse said she has never seen someone so calm and blood pressure normal. Reason for this is as explained while scared of the operation, I had accepted I am a dead man walking (a bit dramatic I know)

Not long after I was dressed in my sexy gown and even sexier compression stockings (after a struggle to get them on, best way is to use the plastic bag they come in to help slide over your feet). I was wheeled of in a wheel chair and transferred to a bed and left in a waiting area while everything prepared (a final check I would imagine).

Not long after this I was wheeled off in to what I can explain as a prep area, I was made comfortable and given a mask with some sort of gas followed by an injection in wrist near the artery. Assuming what followed next general anesthetic straight in to the artery, I shouldn’t have watched but I remember a large needle going in and could see it moving upwards. Obviously no pain was felt and then my eyes were blinking really fast uncontrollably, and that was that.

Next I remember waking up staring at the ceiling strapped to a table with a team around me. My head was in a clamp but couldn’t move despite being able to move my body, at this point my skull was already cut open and surgeon was ready to start. I will stress that this is weird and uncomfortable but not painful. Your head is clamped in position to the operating table and I believe the clamp has pins that pierce the skin to hold skull in place, you don’t notice this until after surgery. In fact if you didn’t know you were having surgery it certainly doesn’t feel like you are.

When you think of a brain surgery you think of a lump growing on or in the brain, in this case it was soft and a sucking tool was to used remove it (a bit like the one used in the dentist) as well as I believe some sort of laser knife as he was cauterising areas at same time. All the while people were talking to you and electric probes were used to test reactions when probing the brain, the only sensation you will feel from this is the twitching of areas the brain controls; in my case it was left hand side of neck, arm and leg.

When they advise you it will be uncomfortable I think they meant the clamping of the head to the table and the inability to move head. This caused a lot of pressure on my neck and that was uncomfortable, bear in mind I was stuck in this position for around 5hrs.

Unfortunately they were unable to get it all out due to the effect it would have on my left hand side. The area affected was about the size of a 50 pence coin and they managed to get around 99% out. I did ask if he had some father beans and a nice chianti (if you don’t know what this means then watch Silence of the Lambs), I guess this is not the first time he has heard it.

The next step is putting humpty dumpty back together again, this was quite uncomfortable too. At first the bone flap is positioned with what I can only guess is the clamp that was used to take it off. Not sure if it is the same for everyone but in my case it felt like it was being rammed into place, there was a lot of pulling and shoving and sensation of bone against bone grinding. Once in place four small titanium plates were put in place and screwed in with titanium screws, this was slightly uncomfortable and you could feel the pressure increase on the neck with every down stroke twist. After it was screwed in, some sort of spray was used to seal the cracks where it was joined. The next step was to put the skin flap back, this is a weird sensation as there is no pain but a lot of tugging and pushing like trying to fit a cushion in a slightly smaller cushion cover. Once in place it is held with staples, staples are not like I was expecting; it was a slow process but gentle and you can’t feel anything but can hear a kind of squeezing noise. Once all done a plastic type spray was used to further seal it and instead of using a typical dressing.

Hope this wasn’t too gruesome for you!!

Click the link below for next blog.

Next is recovery in recovery post.

The start of a tumourous story

A saying I heard once “Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.” made me ponder why we bother with the rat race in the pursuit of success forsaking the small things taken for granted.  This came clear in June 2013 when my life changed for ever.

In previous years I thought I had all the bad luck in the world with every corner turned a brick wall appeared to struggle over or take an alternative route.  Unlucky 13 turned out to be more than a superstition in 2013 for me and no doubt many others.

Thursday 11th April 2013 seemed to be a normal day at work with the only exception of finishing work and travelling to parent-in-laws to fix the home computer.  After having something to eat I proceeded to attempt to fix the computer when out of the blue my eyes felt funny as if they were moving to left and head trying to catch up.  Unable to do or saying anything but hearing my father in-law asking what I was looking at was quite scary although it only lasted about a minute, my head had actually turn right level with shoulder and flicking back and forth with no control.  Quite disturbing as at the time it felt like an external force was trying to break my neck.  Not long after this I felt as if I had a headache in the centre of the brain getting stronger and stronger and my eyesight going.  At this point I remember being scared and thinking this is it! Not even a good bye to my wife and kids and what about the baby? And then I became unconscious.

After five minutes it appeared that this was not the case as I came around not knowing who I was, where I was or what happened and wondering why the hell are the ambulance staff picking me up.  Rather then be left on the floor, I was moved to a more comfortable area and laid to rest on the bed while being asked questions and not able to answer them.  One question that stuck in my mind was “what day is it?”, while laughing at the question and thinking how stupid do they think I am the realism suddenly hit that I didn’t have a clue.  This didn’t last too long as my memory returned over the course of a few minutes but it did feel like an eternity.  It was explained that I had a grand mal(or tonic clonic) seizure, this meant nothing to me but thought that’s the last time I go to that chip shop!.

With no history of such events or knowledge of any events in the family I was taken for free bed n breakfast at a very large hotel full of sick people. Being kept in and monitored every two hours throughout the night barely getting any sleep made it feel like it was all a dream. Waking up Saturday morning with my wife at my side made it clear that it wasn’t. It was explained that during the seizure my muscles had locked up and it felt as if every muscle had too long a session at the gym. I had trouble walking but was released after having an EEG booked and advised it could have been caused by a number of things and must be monitored for 24 hours.

Sunday 2nd of June 2013 I took my daughter out for a walk with our camera’s and must have walked about 2 – 3 miles in total through country public pathways. When arriving back home I checked pictures on camera’s and transferred them to computer, all of a sudden I felt the feeling again and I was off for a 5 minute sleep only this time it wasn’t, while my wife was on the phone to the emergency services I started to come around and then slipped back in to another one. The only part of this I remember is being wheeled off to ambulance in a wheel chair and taken to hospital. After being kept in over night I was quickly sent for an MRI scan Monday morning, a few hours after having an MRI scan, a nice young lady drew my curtains looking a little nervous(which isn’t a good thing) and proceeded to tell me that the reason for the seizure was a lesion and started to explain what that was. If you don’t know what that is then it is basically an abnormality on or in the brain, in my case a low grade tumour on the surface of the frontal lobe (no wonder I’ve been a little quackers all my life ;)). Strangely enough this had no effect on me at the time and assuming it is the bodies defences shutting out this news. After being prescribed drugs and a plan on how and when to take them I was released, the medication didn’t seem to work at first as for the following two months I was in and out of hospital with seizures and each time was a precaution in case I had multiple seizures which can damage the brain. The lamotrigine slowly kicked in and seizures were becoming partial/focal but occurred ever two weeks with no warning, no trigger or aura. This was controlled through the use of medication eventually by a Neurologist. A concoction of Lamictal and Keppra was used with a dosage of 300mg per day of the former and 500mg a day of the latter. All of this is the easy part so far which is bad enough and yet the worst is to come. Don’t read the leaflets that comes with these as these scared me to death!!

The realism of it all didn’t seem to kick in until I had a detailed MRI scan at a better equipped hospital with a follow up meeting with a brain surgeon. Nothing can prepare you for the news that the best option is brain surgery, no family, no friends can help and I chose not to speak to other patients as all cases are different. Support groups were offered but never really chased up or encouragement to go to them, at the time I’d rather not talk about and happy to stick head in sand.

After a year of taking tablets and having scans some good news was that it hadn’t changed, so in April 2014 the decision was left with me to have surgery or not. The only responses I ever got from people was that it shouldn’t be there so have surgery, fine for those who don’t have to go through it. As you can see it took a year to get my head around it and go for surgery and I still wasn’t ready. Around June I made the decision to just go for it and roll with what happens afterwards.

It’s not rocket science!!

As previously mentioned I was left with the decision to have surgery or not after driving my wife crazy with my indecision I woke up one morning and said what the hell, advise them I want to go through surgery. Having a meeting with the brain surgeon I chose to have everything explained and nothing held back, which he did.

How you come to the decision is your battle but my thought process was…

  1. If you don’t have surgery, life expectancy could be shorter than having surgery.
  2. If you have surgery they may be able to get all of it and increase your life expectancy.
  3. If you have surgery and they don’t get it all out, life expectancy could be longer than without surgery.
  4. Risks of surgery could end you life during surgery or in recovery.
  5. If you don’t have awake surgery they may be able to get it all out but you could awaken with a disability.
  6. After surgery it could mutate and become cancerous.

No matter how you look at it or morbid this sounds but we all die and some sooner than others, basically I accepted that I am a dead man walking as you rarely (if at all) get cured of a grade 2 tumour as they almost always come back. If I died during surgery I would leave my wife and kids behind but my suffering would be gone and I wouldn’t know. If I came out disabled and depending how serious it was, I would be alive but unhappy about it and dreading the day it comes back. If all went fine but it mutated and became cancer, I will die unless there is a major break through in brain tumour cure.

While I have not looked in to it, I imagine dying from a brain tumour must be horrific as it eats your brain and disables functionality until you are just a shell of your former self. It would be interesting if a family member would explain what they went through in detail. There is a lot of information on the internet but not specifics that I could find that would help me understand.

Before surgery everything was explained but it was still scary (I don’t even like having blood tests so you can imagine how scared I was, I never let this on and even went to work the day before surgery like if it was just a holiday coming)

Back to the brain surgery, do not read further if you do not want to know in detail what it’s like.

Click this link for next blog – surgery.