Archive for September, 2015

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.

 

Advertisements

News

Posted: September 17, 2015 in News
Tags: , , , , , ,

Not going to fill this section with news articles so will link news stories from elsewhere…

The iknife, not Apple lol …

iKnife News

New scanning technology to help determine extent of tumours…

New Scans To Help?

A new breakthough, state of the art radiothereapy (proton beam)…

Proton Beam Therapy

and

Wales, UK PBT

 

More to be added when available.

 

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.

 

15th Sept 2015 – To Present Day updated with latest scan result.

15th Sept 2015 – Medication updated with more info and picture.

15th Sept 2015 – Recovery – The First Week updated with picture.

16th Sept 2015 – Info – links to support.

16th Sept 2015 – Brain Tumour – types and mine.

22nd Sept 2015 – Medication – Medication Update

26th Sept 2015 – Info – links to support.

10th October 2015 – News – Treatment

25th November 2015 – Info-  brain tumour charity website and brain tumour charity facebook group

23rd December 2015 – Blogs – various new/alternative technology/treatments

19th February 2016 – Blogs – Positivity

31st March 2016 – Blogs – Dying Light

DSC00778-1

Going through the whole process from seizures to surgery you will go through a number of medications too. The first port of call will be epilepsy medication unless they the cause first.

There are many epileptic medications available but mine was Lamotrigine branded as Lamictal, it is used in an attempt to control the electrical activity in the brain that can lead to seizures. You will most likely be started on a low dose due to some of the dodgy side affects. Basically if you get a rash seek medical help immediately to get it checked as it can lead to blisters and your skin falling off.

As my body tolerated it well the dose was increased to 150mg in the morning and 150mg in the evening. I love the way they use the word “tolerate” !!. As this didn’t work too well I was moved on to Levetiracetam as well. This is branded as “Keppra” so it is easier just to call it that. This has similar side affects as Lamotrigine so seek medical help if you have any rashes.

Keppra did seem to work better and serious seizures stopped up to present day. At present I am on 500mg in morning and evening, you maybe put on more or less depending on circumstances.

5 days before surgery you are likely to be given Dexamethasone which is a steroid used to reduce inflammation, I was told this was to reduce swelling for the operation. One problem is that it makes you starving all the time and they give you Lansoprazole to stop your stomach getting damaged. This was the case with me and I could eat all day and still feel hungry, in the end I resorted to drinking milk or water a lot. After the operation you can come off it slowly.

After surgery there was some other medications that I can’t remember but in total I was taking around 30 tablets per day all carefully planned out. Luckily, if you live in the UK you will be given a medical exemption card that means you don’t pay for them.

The advice I can give for all this is take them according to your doctors instructions, don’t change anything and I wouldn’t read the side effects or look it up on the internet as it will more likely worry you.

If I find what else I was taking I will update this blog.

The holiday was a great holiday and we were camping for two weeks, such relief to get the kids out of your hair. It would have been a killer staying at home for the remainder of the school holidays.

With me having a keen interest in photography and my feeling in my hand and fingers back to normal, I was able to use the camera properly again (which was important to me).  If I have lost the use of left hand I don’t know what I would have done.

I like landscapes…(from holiday)

SONY DSC

Sunset

With me getting better week by week I was able to go back to work full time 5 weeks after the op.  It was suggested by surgeon that I go back part time after 6 weeks if I felt ok and if not I could be signed off longer.

My employer had been really supportive over the whole process from diagnosis to operation and recovery so I decided to go back full time on 1st Sept 2014.

At first it was weird being back as you had just been through a major ordeal, not feeling 100% right and people not sure how to approach you.  To break the ice I just spoke about it freely and made a laugh and joke about it such as…

Staff : How you feeling?

Me : Glad to be back, it’s a weight off my mind!

Jokes such as this continued, questions asked and soon enough it was like I had never been off or had an operation.

see to present day.

The first week after being released was a simple case was sitting around bored, resting and sleeping when I could, due to resting a lot I was advised to keep my sexy compression stockings on which is understandable.

26th July 2014 I was able to sit out in the back garden enjoying the sunshine relaxing in the shade and had the pool out for the kids also dipping my feet.  Was really great to get out for a bit.

With the passing of each day things got better and in the first week you can have your staples out.  Now some people may be worried about this and I was certainly anxious but there was no need.  There was no pain at all and all I felt was a kind of pinch sensation. The concerning thing for me is when I walked in to have them removed I had a newly qualified doctor who looked very nervous and taking a drink of water before proceeding – lol

With them being removed you can then wet the scar and give it a bit of clean providing there was no problem with the scar healing.  A sigh of relief as mine was fine and I could now clean my head, they say you shouldn’t submerge the scar and just dab it with a wet flannel at first. You can have a bath of shower before removal but you have to cover the scar, you just can’t wet the head as it will delay the healing process…

cropped-ouch.jpg

Cleaning the head was great as it relieved a little of the tightness and you could finally get rid of the iodine, dried blood and the protective spray they put on.  In my case it was very hard to get rid of the dried blood as it was stuck to the hair and wouldn’t loosen.  Trying to loosen the dried blood did work to a certain extent but it also removed some of the hair which made the scar look bigger, I started losing hair around the scar which I assumed was because it was just killed off because of the surgery. Not looking too bad though…

After Washes

Not sure if it is the same with everyone who has head surgery but mine did weep a little and scab over, you have to try your best not to scratch, pick or catch them when washing as it could open up part of the wound. Unfortunately on one occasion I did catch a scab which has now left a bald patch…

Recent Scar

By the end of the first week I had enough of being stuck in so phoned the hospital and asked if it is too early to go on holiday in UK.  This was fine as long as I took care and didn’t fly.  We decided to go camping near a holiday park that our friends were staying at as it would make the holiday better if we also had support should anything happen or be needed.

see subsequent weeks…

Time To Go Home

Posted: September 12, 2015 in Time To Go Home
Tags: ,

After spending two day and one morning it was time to go home – yay! (so fed up of being in there).  Despite being able to walk I was told to take it easy and use a wheelchair to leave the hotel courtesy of the NHS. My wife had to get car and bring it around the front to reduce walking distance for me but the car park was quite full. This didn’t stop the taxi drivers taking up spaces for dropping off and picking up of patients and therefore forcing my wife to park in a different space that I had to walk to.

Getting in the car was such a wierd feeling (if you remember your head feels huge and your spacial awareness all over the place), and oh boy those bloody head rests do nothing for resting your head.  The journey home was terrible due to the fact that you are very uncomfortable and can feel every bump in the road.

The first stop before going home was to the supermarket to get a foam based neck brace, new pillows and an electric toothbrush – bye dog breath!. I really would suggest getting a neck brace and some really soft pillows, the nice puffy ones 🙂

When we arrived home the first thing was to brush my teeth and have a nice cool drink (weather was really hot for UK), second was to get the bed all nice and comfortable with a fan passing cool air over the bed. No matter what I did I couldn’t get comfortable but it was far better than being in the free hotel for sick people. After a while I did manage to get comfortable and drift in and out of sleep.

This continued for a few days and nights and every day getting better but I was expecting some sort of pain and it never happened, just a tightness of skin over the skull and staples, the feeling of pressure in head and the neck issue that is unexplainable. Something I did notice was that control over my left hand was an issue and fingers being the worst, I couldn’t text properly, couldn’t type properly and even tried and games console to pass the boredom. This is when I started to feel a bit more emotional, frustrated, angry and unfortunately it was released towards my family.

My wife tried to be supportive but I found every little thing bugged me and even worse it was the kids school holidays which really did wind me up (that I took the blame for as I chose a bad time to agree to have surgery.  My wife stayed supportive and tried everything to make me happy and comfortable and still does so today (12th Sept 2015), she really did put up with a lot from me and was a rock.  I do not know what I would have done without her by my side! If you are in a position where you need brain surgery or similar, I really stress that you should plan for after care, to start with I couldn’t even make a basic snack such as toast.

See the first week…

Recovery Day Two

Posted: September 9, 2015 in Recovery Day Two
Tags: , ,

Friday 25th July 2014

Today started off a bit more positive with the thought of I could go home. A group of doctors and nurses came around this morning looking at my notes and discussing things, asked me a few questions but still unable to talk properly I managed to answer them.

The surgeon came to see me and advised as thought it is a grade 2 Astrocytoma and they got around 99% out, recovery has gone well and asked me how I was doing.

My reply was I’m fed up of being stuck in here, most people have left the ward and it was lovelly outside again. To this he replied with I can see no problem why you can’t go home. I phoned my wife and advised she can pick me up. After a quick check over a nurse noticed I still had my heart IV line in. Removing this did make my stomach turn a little with it being quite a big line and the nurse putting pressure on which hurt adding to it.

My wife came to pick me up but I couldn’t go until after the MRI scan that has already been booked, nice communication there!

No problem at all, MRI scans don’t bother me other than I can’t stand needles and they always put a contrast die in. On this particular occasion it did not bother me though.

This is the fun bit (try not to laugh too hard), the way I deal with MRI scans is simply close my eyes and let them get on with it. This time I almost actually fell asleep in there! Being so high on drugs and head all over the place I closed my eyes, ignored the noise and felt as if i was floating. This sounds crazy but I was imagining I was floating in a space station – lol. If you know about MRI scans you will know that they take different scans and each time the noise changes. With me floating in a space station in my head, every time the noise changed a bulk head door opened and I floated in the the next section and this repeated until the scan was over.

Why a space station? I have no idea but think is what started off my weird dreams in the days to come.

After the scan was complete and moved back to the ward I was able to go home. Some nurses came around with meds, advice, support groups etc etc. You get these at every appointment so by now I was bored of them. Most of this information is about coping brain cancer, what help is available and the charities.

Ok, not much to report regarding night 2 as it was pretty much the same as night 1 but this time I slept in chair with the nurses checking on me every so often and trying to force painkillers down my neck. These were refused again as I wasn’t in pain probably due to the concoction of tablets given throughout the day, I couldn’t even tell you what these were.

Again throughout the night my stats were normal and they were considering letting me home in the morning. When you think about it, it is quite amazing (or at least it is to me, maybe it is the same for everyone?)…

23rd July 2014  –  5hr operation in morning with recovery in afternoon and night.

24th  July 2014  –  Recovery day and night

25th July 2014  –  Possibly going home in morning

See time to go home…