Sunday, 18 November 2012

Busy getting cured

As usual, my blog is taking a back seat. Much of this is due to various types of therapy radio, chemo, speech (including reading) and occupational.

But first I need to congratulate Carol on her belated (21st October) Birthday, so her it goes......... Happy Birthday Carol ......... A very nice surprise around Carol's celebration was a visit from my little sister Marion and her daughter, my niece Claire. This was the first we have seen her in Switzerland for 20 years!


I started radiotherapy with concurrent chemo on 10th October. About the only difference since my radiotherapy back in 2007 was the mask had been improved to incorporate a dentat holder which improves the position accuracy and removes the nose hole for breathing. I will try and get a picture of me in the new mask if I can. See the previous blog entries for how it was 5 years ago.

Diagnosis & Treatment

The Chemo Man (Oncologist)

Concurrent Radiation and Chemo therapy

Radiation Therapy Ends

I started off on the Radiotherapy badly, I decided to try taking the Chemo before going to bed with the idea that any nausea I would have would be hidden by sleep. This was a big mistake, at around 3am in the morning I woke up and had to go straight to the bathroom to empty my stomach. This continued on an off until around lunch time. I was not sure wether or not this was caused by the regime or chemo body shock, but either way going (back) to the old trusted, morning regime, seemed to fixed the serious nausea, and I have not seen anything like that since.

I had thought that the side effecs were worse this time around; Nausea and radiotherapie burns, but looking back to the blog I can see that, as Carol had already said, that is just not true. In fact the only thing that is worse is my head sore all over due to, not only the burns on both sides, but also the scalp scars soreness. These keep me awake at nite.

Well at least there is only another week to go before The radio therapy ends and I get a few weeks reprieve from chemo.

Otha Therapies

By now I should have been doing regular Speech, Occupational and Neurological therapies, but due to a cock-up at the hospital my insurer has only just given their permission. So I have only just started speech therapy last week. The first couple of sessions were more about analysis rarther than therapy but finally I got a useful tool today. This was a simple tool that forces you to contextualize a sentence by covering up the bottom of the sentence while trying to read it. This lack of information forces you to take into the sentence context to fill out the missing information. I was sceptical at first but after a few sentences is really started to improve my reading.

Printed page to Speech

Earlier I had mentioned a dream tool for OCR to speach. In fact it turns out I can actually build up this using a couple of iPhone apps. The first is an OCR app called TextGrabber that uses the built in Camera (or existing photo), the second piece is the iPhone built-in Text to speech. I was astounded at how OCR has improved over the past few years when I last used it. The really cool feature of TextGrabber is built in language translation, so I can scan a German document and speak back in English!

Of course this solution is not perfect due to the camera weekness. If I use a scan from my scanner transfered via PhotoStream the OCR is almost perfect but a lot less convenient than the camera. That said we are talking a CHF3 ($3) iPhone app versus a CHF80 equivalent Mac app.

The Wall

No not the Pink Floyd album, a real wall. Over the last 6 weeks we have had builders / gardeners replacing a 40m (30m x 10m) retaining wall around our garden. I wanted to get a new car this year but we had to do this instead because The old one was falling down. I'd like to thank the workmen for doing such a great job (amazing eh) and our neighbours for put-ing up with this work except those neighbours who stole a big chunk of our garden.

Just about me

Very very tired,
tired of traveling to hospital,
tired of radiotherapy,
tired of the pills,
tired of trying to read,
tired that I can not read,
tired this blog takes 10 times than it used to,
tired of having to ask for help,
tired of what is till to come,
tired of not sleeping,
just simply tired of life but...….
The glimpse of life at the end of the tunnel makes it worthwile.

Sunday, 30 September 2012

Lots of updates

Latest MRI Sample

Shows before and after surgery. In the post pictures there is a lot of swelling still visible but this was only a day after surgery so that is no surprise. In the vertical post picture you can see a fair ammount of tumour still left so it is essential to get the radio and chemo therapies going as quiclkly as possible.
Prior to surgery - shows solid tumour

Post Surgery - most of tumour removed

Staples and Stitches Removed

On monday I went to my local doctor (gp) to get the stitches and staples removed. I was surprised at how painless the stapel removal procedure was, especially the way the the stapels just squeeze and lifted away". The only problem in this area Is the length of time the scars seem to be taking to heal, and the longer this takes, the later the radiology and Chemo treatment can start and the later this starts the longer time the tumour has to grow.

Radiology and Oncology Discussions

On last Monday and Wednesday I had discussions with my new Radiologist and my old Oncologist (same guy that looked after me 5 years ago.

Given the repeat performance of a Glioblastoma Multiforme , the tumour board had already decided to recommend standard treatment accordingly. This consists of 6 weeks of conformal 3D Radiation therapy to a total dosage of 60 Gray (maximum allowable dosage) concurrently with Temozolomid Chemo therapy followed by a further 6 cycles of Temozolomid (1 week in every 4) for the next six months.

Note that this is identical to the treatment I had for my original tumour. I can get the full dosage because, luckily the new radio beams will not cross over the old beams.

Interestingly, the lady raduiologist is English and ex NHS and used to work in Hertfordshire, where Caroll and I grew up. She had worked in the QUE2 hospital in Welwyn Garden City the hospital that our daughters were born in, and ironically the hospital in which my mother was diagnosed with her Brain Tumour! Given that and an ex NHS Neurolosurgeon also from Hertfordshire (Watford) it feels like I am back home :-)

How's the Brain?

Enough of my physical condition and up and coming treatments but how's my brain?

The best news is nothing is worse since the operation and the worst news is that nothing is much butter. I still cannot really read and I still have these peripheral visual anomalies which confuse my attenpts to relearn reading and improve writing

I have seen some improvement in finding my way arounb my machines. I believe that this is due to re-learning rarther than regaining capability although, of course, I cannot be certain. As I have previously mentioned I am much better at reading symbols and icons than words I believe thad is because they do not have to actually be read. Ironically in the past I was a words man and had a lot of contempt for Icons. Now, without them my life would be almost unliveable.

You can not imagine how hard it is to live in our modern world without the skill of reading. Withot text to speech my quality of life would de approaching zero.

Technology keeps me sane, by providing me the tools to navigate the written world.

A device that could do real time OCR (optical character recognition) to speech is on my wish list then I would be able to read the printed word as well as just the electronic word.

Saturday, 22 September 2012

Horror Show

This is my second post since surgery, and is all of my own work
(last one was dictated to Amber)

In order to put this together, I needed some tools
As my reading is somewhat worsened due to some peripheral vision issues.

So to write this I make short sections and then play them back using my iPad's "text to speech" utility.

I think my reading seems to be getting better but omly symbol recognision. For example, i had lost the ability to read an analog clock but that has come back. My ability to use a keyboard seems also improved

My general health is OK although I feel rather tired.
Emotionally I am much more stable.

For your entertaimment here is the official horror show from the 9th of September.
Please forgive Carol's shaking hands, but you can agree the pictures are pretty grizzly.

The new scar and its 24 stapers

The repair job, I hope it worth it

The pair

On Monday morning I shouid get my staples (new scar) and stitches (dent repair) removed. In the afternoon I have a pre Oncology check up to see if I am fit enough to be poisoned and radiated.

By the way, writing this blog is a very slow and stressfull process and consequently the result loses much of it's personality, and I apologise for that,


Saturday, 8 September 2012

It's alive! It's alive!

(Hello this is Amber writing, because my dad can't write at the moment. This will hopefully change in the near future, but in the meantime dictating to me has to suffice.) Just a short note. Entered the hospital on wednesday the 5.9.12 and was operated on on thursday. The tumor was bigger than expected, but much of it has been removed. I haven't seen a picture of it as yet, so no idea how much bigger. The first couple of days after the op were bad, death wishes etc. But today I have my will to live back...even with the strange things I have to work around such as weird visual effects (the right eye has been effected so my eyesight seems to have gotten worse), disembodied body parts and having to relearn how to use the ipad and phone. I am also now titanium man thanks to a newly aquired titanium plate. (for the swiss readers: I upgraded to halbprivat, to enjoy the two beds per room and the coffee and cake trolley). Hoping to leave on monday if all goes well and will give you an update when I get home.

Wednesday, 5 September 2012

Busy day preparung for Op

Seemed to have seen everybody today.

First off I got all the usual checks. Blood tests, Blood Pressure, body temperature and quick strength tests

Next the neurosurgeon came in and told me the show would start at 9 in the morning he then explained the procedure (drill hole, remove gunk, seal up), and offered me a bonus.

My last operation (the Biopsy) five years ago left me with a significant dent in my head. Although this can be used as the base of endless jokes involvingik pick axes and places to store your haircream it has often brought too much attention from kids much to the embarasment of their parents. But more annoyingly it has became a hair trap requiring judicious use of a nose hair trimmer to keed it clear (too much info?)

Anyway the surgeon offered to me a bit if cosmetic work and I accepted on the condition it did not add any risk, I am not that vain.

And of course the last thing the surgeon did was was to get out the marker pen and mark the position of entry (I kid you not, its procedure)

Next along I got an ECG to check to my heart was par for the op and then the anistathist to explain her process. This seems to be by far the most important of all
the processes and the one that more than anything will keep me alive. Of course I am in no way demeaning the man with the knife and the steady hand (i hope).

Last up was a whole bunch of eye tests including, strength, peripheral, colour etc. Because tumour 2 is sitting close to the vision centre of my left eye that wanted chech on any recent damage and later if it gets better or worse. Getting any worse would be a major suprise seeing as I am pretty much blind in my left eye already!

Just had my last Pre-op meal, now its only water until the op is over.
Think I'll grab a shower and cudle up wish a movie and aim for an early night.

Good Night

In Hospital

Settling down in hospital, just a quick post to make sure that I can post from the pad.
Should go to theartre tomorrow morning, today will be checking that I am healthy enough for the operation.

The Aniethesist and Neurosurgeon should come in this afternoon for a chat.

My "Nuchtern" (no food) sign, tights (anti thrombosis) and bumless gown are already sitting on the side.

But for now, at least I can have lunch.

Tuesday, 4 September 2012

Surgery on Thursday

Just a quick post.

Going into hospital tomorrow for surgery on Thursday to get as much of tumour 2 out as possible. Should not get too many side effect from this one because of a clean entry from the back. Could get some peripheral sight issues on the left but given that I am already pretty blind on that side I probably won't notice it. But of course brain surgery is is never without risks.

If all goes well I will be in for about a week. Hopefully I'll be able to post a couple of short notes while I am in hospital.

Wish me luck.