After another appointment at Velindre a few days ago I've been informed that, although the tumour appears to be stable, the fact that there was clearly some activity that lead to my recent admission to hospital means the oncology team are inclined to believe I would benefit from having further treatment sooner rather than later.
As a result I will be beginning a course of chemotherapy on Tuesday. This will be different from my previous chemo as it will involve a combination of tablets and IV drip, whereas my previous chemo has all been in tablet form. This method of chemotherapy is called PCV (Procarbazine, Lomustine - known as CCNU, Vincristine) and will consist of an intravenous drip on day one of each treatment cycle followed by 10 days of chemo tablets. I will then wait until six weeks from the injection date for my next cycle to begin, and I will be having a total of six cycles.
As the mathematically astute amongst you may have realised, this means that I will be under treatment for a total of roughly nine months. After nine months of sickness, scans and hospital visits I'm half expecting to give birth to Timmy at the end of it all, although I have a feeling he'll manage to hang on in there like some sort of annoying, life threatening, brain dwelling embryo.
One small mercy is the fact that this type of chemotherapy does not usually result in hair loss, although it will likely mean a return to the sickness and sleeping problems that I so enjoyed last time around.
In other news the stitches in my stomach have finally dissolved and I'm expecting imminent delivery of a bunch of Bio-Oil so that I can start working on minimising the visual impact it will have on my abdominals.
This does also mean that I won't be able to go on my trip until at least this time next year. If it's true what they say and good things really do come to those who wait then it should be absolutely unbelievable by the time I eventually manage to go.
Saturday 27 February 2016
Monday 15 February 2016
Convalescence
Since my last post I'm glad to say I've left the hospital behind, along with the dreaded catheter and cannula that they had installed during my stay. While I'm on that subject,I don't know about you, but I had always assumed there was some clever way of removing a catheter involving special valves or a clever twisting manoeuvre, this assumption was shattered into a million pieces however when the time came to have mine taken out. Instead of some clever manoeuvre the approach turned out to have a lot in common with the process used when starting up a troublesome lawnmower, which as any males reading this will attest, is not a particularly welcome way to treat that part of your anatomy.
In the time since I'm glad to say the jaundice and bruising my arms were displaying has all but vanished and, as a result, I'm looking fairly normal, especially after I had an emergency procedure on my haircut to restore some order to the top of my head after my latest brain surgery partial head shave.
Despite having my head and stomach cut open as part of the shunt fitting, the biggest down side of this latest stay in hospital was having to postpone my travels. Working my way through all my hotel/hostel bookings and clicking cancel on each was nearly as painful as the moment the catheter was yanked out of place a few days earlier.
Due to this unexpected visit to hospital my Oncologist arranged a new MRI scan to take a look at the tumour and assess the situation now the shunt has been fitted. Once again I didn't follow my own advice and neglected to make sure I was hungover enough to sleep through the scan. Instead I lay there in the machine, wide wake, listening to noises reminiscent of how I imagine it would sound if R2D2 got stuck in a blender for half an hour.
Following the scan I asked if there was anyone that could take a look at the stitches in my stomach, as they didn't seem to be dissolving very quickly and the wound looked quite aggravated and red. There was a nurse available and she came to give her opinion on the wound. She was followed by another three nurses who came for a browse at the stitches when they heard rumours of abdominals being displayed, so at least I know my stomach won't be completely ruined aesthetically by the scar I'll be left with when the stitches eventually dissolve.
I've now had a phone call off my oncologist stating that there doesn't seem to be any significant change in the tumour, so at least the latest episode was not caused by a flare up of growth in the tumour but more likely by smaller changes that happened to be in the exact place the fluid was trying to drain away. Although I still need to wait to find out if any immediate treatment will be recommended after discussions between my oncologist, the other specialists in Cardiff and the specialist from the Royal Marsden in London.
In other news Piri must have been feeling left out and decided she was due a trip to hospital herself. We noticed a problem where her eye was watering a lot and took her to get it looked at. At the vets we discovered she had an ulcer developing in her eye and she needed a temporary lens fitted as well as medication and eye drops. So in the house at the moment we have two of us convalescing but obviously priority goes to Piri as she's far cuter than I am. Especially with her cushion secured around her neck.
In the time since I'm glad to say the jaundice and bruising my arms were displaying has all but vanished and, as a result, I'm looking fairly normal, especially after I had an emergency procedure on my haircut to restore some order to the top of my head after my latest brain surgery partial head shave.
Despite having my head and stomach cut open as part of the shunt fitting, the biggest down side of this latest stay in hospital was having to postpone my travels. Working my way through all my hotel/hostel bookings and clicking cancel on each was nearly as painful as the moment the catheter was yanked out of place a few days earlier.
Due to this unexpected visit to hospital my Oncologist arranged a new MRI scan to take a look at the tumour and assess the situation now the shunt has been fitted. Once again I didn't follow my own advice and neglected to make sure I was hungover enough to sleep through the scan. Instead I lay there in the machine, wide wake, listening to noises reminiscent of how I imagine it would sound if R2D2 got stuck in a blender for half an hour.
Following the scan I asked if there was anyone that could take a look at the stitches in my stomach, as they didn't seem to be dissolving very quickly and the wound looked quite aggravated and red. There was a nurse available and she came to give her opinion on the wound. She was followed by another three nurses who came for a browse at the stitches when they heard rumours of abdominals being displayed, so at least I know my stomach won't be completely ruined aesthetically by the scar I'll be left with when the stitches eventually dissolve.
I've now had a phone call off my oncologist stating that there doesn't seem to be any significant change in the tumour, so at least the latest episode was not caused by a flare up of growth in the tumour but more likely by smaller changes that happened to be in the exact place the fluid was trying to drain away. Although I still need to wait to find out if any immediate treatment will be recommended after discussions between my oncologist, the other specialists in Cardiff and the specialist from the Royal Marsden in London.
In other news Piri must have been feeling left out and decided she was due a trip to hospital herself. We noticed a problem where her eye was watering a lot and took her to get it looked at. At the vets we discovered she had an ulcer developing in her eye and she needed a temporary lens fitted as well as medication and eye drops. So in the house at the moment we have two of us convalescing but obviously priority goes to Piri as she's far cuter than I am. Especially with her cushion secured around her neck.
Monday 1 February 2016
Heath Hospital Revisited
If you had asked me 10 days ago what my next blog post would be, I would have said something along these lines: "it will be a post just before we board the first flight on our 3 month tour of the world". It definitely wouldn't have been "it will be from a hospital bed, having been admitted for emergency brain surgery", yet, here we are, it is the first day of February and instead of getting ready to fly across the world I'm sat in the Heath Hospital with a new hole in my skull to add to the ever-expanding collection.
This story begins last Monday with my final memory of the event: Telling my mother that my eyes were really hurting, and not in a way that suggested eyesight issues, but in a way that suggested the tumour was awake and wanted to escape from my skull, preferably through my eye sockets.
From here I have to rely on accounts from my parents, as my memory of it all is worse than it would be after 12 pints with jäger bomb chasers.
Apparently the pain got so bad I was screaming and shouting in the house, so my father phoned an ambulance. Unfortunately, the dispatcher seemed more concerned that he check me for signs of a stroke than sending assistance, so my father put me in the car and drove me to the nearest hospital (the Princess of Wales in Bridgend) where I was put in an ambulance and blue lights shot me up the M4 to Cardiff's Heath Hospital. By this point I had slipped into unconsciousness.
I was taken straight into emergency theatre (of the surgical, not musical, variety) where I was operated on to relieve the pressure that was building on my brain. Some of you may remember I previously talked about how a surgeon had made a channel in my brain to allow fluid to drain away naturally, well that had become blocked, meaning the high volume of extra fluid produced by the tumour had nowhere to escape, and as a result was causing immense pressure to build inside my brain. To combat this the surgeon fitted a device called a shunt which is basically a tube that allows the fluid to drain into my stomach to be digested, thereby relieving the pressure on the brain.
My first recollection of hospital is waking up a day later and realising two things: One, I was definitely not where I last remembered being conscious; and two, something very serious must have happened, and I'd put money on Timmy being to blame.
Shortly afterward I made an attempt to sit up and was greeted with pain across my stomach, which under further investigation was revealed to be due to a surgical incision as part of the shunt installation process. I haven't seen the scar yet but know it will forever be a blemish on my otherwise perfectly symmetrical, and as far as I'm concerned aesthetically pleasing, abdominals.
Unfortunately I also made another discovery fairly soon after waking, the presence of a catheter inserted in a location that is only meant to be treated nicely. Despite my best, and continued, efforts to get it removed it has remained in situ and will do for the foreseeable future.
On my second evening in the hospital I was in my 3rd ward of the stay and made a troubling discovery when I looked to my left to see the man in the next bed watching a film that is less than appropriate in a communal sleeping setting. To sum up, the movie featured blonde beehive hairdos on the females and plenty of fake tan on the males and the central theme seemed to lack the finesse of even the most poorly planned home videos. I have since heard from other patients that he's been caught getting a little too in to his material on occasion though, so I count myself lucky that all I saw him fiddling with was the settings on his iPad.
Other than this one entertaining (if slightly disturbing) episode my stay so far has been fairly standard and comprised mainly of pain and awkwardness from the catheter, interspersed with visits from friends and family. If I have one piece of advice to give anyone about to get a catheter fitted it's this: Run. Get out of there while you still can! I've been in a constant state of irritation and mild pain since it was fitted nearly a week ago. Thankfully the visitors have helped me keep my mind off the annoyance of the catheter while they're here by keeping me distracted and even after they've gone with gifts strategically designed to chip away at my abdominal definition (I'm looking at you Angel Cake Slices). Accompanying the calorific presents a theme has developed with people buying me colouring books. I now have both Lion King and Harry Potter themed colouring activity books and the pencils to accompany them. As my art teacher in school once labelled me a "disgrace to her profession" I'm not sure how well I'll do with them but I'm sure it will at least kill some time.
I have been told this evening that I may be freed of the dreaded catheter tomorrow, so tonight I shall dream of a world where a penis is free to swing in the breeze should it wish to do so and urination does not require a bag to be tied to your leg. A happier world. A simpler world. A less painful world.
This story begins last Monday with my final memory of the event: Telling my mother that my eyes were really hurting, and not in a way that suggested eyesight issues, but in a way that suggested the tumour was awake and wanted to escape from my skull, preferably through my eye sockets.
From here I have to rely on accounts from my parents, as my memory of it all is worse than it would be after 12 pints with jäger bomb chasers.
Apparently the pain got so bad I was screaming and shouting in the house, so my father phoned an ambulance. Unfortunately, the dispatcher seemed more concerned that he check me for signs of a stroke than sending assistance, so my father put me in the car and drove me to the nearest hospital (the Princess of Wales in Bridgend) where I was put in an ambulance and blue lights shot me up the M4 to Cardiff's Heath Hospital. By this point I had slipped into unconsciousness.
I was taken straight into emergency theatre (of the surgical, not musical, variety) where I was operated on to relieve the pressure that was building on my brain. Some of you may remember I previously talked about how a surgeon had made a channel in my brain to allow fluid to drain away naturally, well that had become blocked, meaning the high volume of extra fluid produced by the tumour had nowhere to escape, and as a result was causing immense pressure to build inside my brain. To combat this the surgeon fitted a device called a shunt which is basically a tube that allows the fluid to drain into my stomach to be digested, thereby relieving the pressure on the brain.
My first recollection of hospital is waking up a day later and realising two things: One, I was definitely not where I last remembered being conscious; and two, something very serious must have happened, and I'd put money on Timmy being to blame.
Shortly afterward I made an attempt to sit up and was greeted with pain across my stomach, which under further investigation was revealed to be due to a surgical incision as part of the shunt installation process. I haven't seen the scar yet but know it will forever be a blemish on my otherwise perfectly symmetrical, and as far as I'm concerned aesthetically pleasing, abdominals.
Unfortunately I also made another discovery fairly soon after waking, the presence of a catheter inserted in a location that is only meant to be treated nicely. Despite my best, and continued, efforts to get it removed it has remained in situ and will do for the foreseeable future.
On my second evening in the hospital I was in my 3rd ward of the stay and made a troubling discovery when I looked to my left to see the man in the next bed watching a film that is less than appropriate in a communal sleeping setting. To sum up, the movie featured blonde beehive hairdos on the females and plenty of fake tan on the males and the central theme seemed to lack the finesse of even the most poorly planned home videos. I have since heard from other patients that he's been caught getting a little too in to his material on occasion though, so I count myself lucky that all I saw him fiddling with was the settings on his iPad.
Other than this one entertaining (if slightly disturbing) episode my stay so far has been fairly standard and comprised mainly of pain and awkwardness from the catheter, interspersed with visits from friends and family. If I have one piece of advice to give anyone about to get a catheter fitted it's this: Run. Get out of there while you still can! I've been in a constant state of irritation and mild pain since it was fitted nearly a week ago. Thankfully the visitors have helped me keep my mind off the annoyance of the catheter while they're here by keeping me distracted and even after they've gone with gifts strategically designed to chip away at my abdominal definition (I'm looking at you Angel Cake Slices). Accompanying the calorific presents a theme has developed with people buying me colouring books. I now have both Lion King and Harry Potter themed colouring activity books and the pencils to accompany them. As my art teacher in school once labelled me a "disgrace to her profession" I'm not sure how well I'll do with them but I'm sure it will at least kill some time.
I have been told this evening that I may be freed of the dreaded catheter tomorrow, so tonight I shall dream of a world where a penis is free to swing in the breeze should it wish to do so and urination does not require a bag to be tied to your leg. A happier world. A simpler world. A less painful world.
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