I had a "clear" scan in August, and am not on any treatment currently except anti-epilepsy drugs. All being well I might get my driving licence back very soon, but we've gone to being a 1 car family and unless I need a car to get to a job further afield then we'll be staying as a 1 car family for the forseeable.
My next scan is in the summer, & can I just say that waiting 12 months between scans is torture? I'm at a point where since diagnosis I have never been this long between scans & every ache & pain gets me stressed. I'm not prepared to give myself the description "survivor" yet, the stats are 50% of people with a BT die within 5 years, so there is plenty of time for things to go wrong yet :-(
I'm planning to do my bit though, & am hoping to enter the Liverpool to Chester bike ride in July to raise funds for Brain Tumour UK. All being well I intend Josh to join me, we could both do with getting a bit fitter & it will probably be easier together than in isolation.
Sunday, 12 February 2012
Thursday, 19 January 2012
Life etc..............
Okay, being a man of few words I've decided to commit to the Internet an idea that has been rattling around what is left of my brain. My name is Jonathan, and when I was 39 1/2 I was diagnosed with a grade 2 Oligodendroglioma Brain Tumour. I'm 42 now, and I've had 2 surgeries and a 6 week course of radiotherapy. My intention is not for this blog to be a textbook or a support group, it's my way of telling my story. A bit more autobiographical stuff. I'm married to my gorgeous wife Joanne, and we have a great son Joshua. We've also got Molly the Dog & Ritchie the Hamster to complete the family. I'm a career nurse, straight out of school & I'm still nursing now, so I've got 23 years experience behind me. Joanne has a more varied work background, but in short has always worked in education in one form or another. This is a short post to get started, more to follow.
Okay, the more to follow bit starts now; advice, look for the specialist Brain Tumour charities, from my reading Brain Tumour UK, www.braintumouruk.org.uk is one of the best ones out there, while macmillan etc can provide more generalist advice into cancer, treatment etc. Having said that I've rarely used Macmillan resources, and not yet needed the services of a Macmillan nurse.
Many people have asked if I knew something was wrong before my diagnosis; in short, no. I'd felt "off", tired, head achy & glandular for a couple of months, but having seen a GP I'd felt reassured that nothing sinister was going on. How wrong can you be! In the space of a week I went from being able to ride 100km on a bike, to having zero energy & being so bad tempered (personality changes as a symptom of BT's) that the mere thought of exercise made me want to give up. I was never "ill", and between the onset of symptoms in mid February until the day I was diagnosed I didn't have a single day off sick, what was I bloody thinking? Obviously I didn't know what was going on, but when I look back I cannot believe that I continued slogging away like a fool! I was a right nasty person at home, very bad tempered, very snappy with Joanne & Josh, but oddly very few other people. I regret that & wish that I'd lost it at work a bit more often, they might have sat up & taken attention of the fact something was not right.
The first real evidence that something was greatly wrong was one morning, that I remember with distinct clarity, where I recall the alarm clock going off. It was a Tuesday. I hit the snooze button to get an extra 10 minutes, and then sometime later waking in the local A&E department, IV lines everywhere & ECG monitor cables. The A&E consultant was quite clinical & blunt - I'd been fitting, and a CT scan whilst I'd been asleep showed changes, either a bleed or a tumour. Now I was awake I think they felt it was safe enough to get an MRI scan done, in order to get better images. They confirmed the presence of a tumour, & in view of the severity of the seizures I was to be admitted and a plan formed from there.
The Role of Fate in these Situations
Fate number 1: My wife was at home on that particular day. Without a shadow of a doubt if she had been in work I would have died, been found dead in bed as a sudden "unexplained" adult death.
Piece of fate Number 2: Meeting Dr Malcolm Steiger, a consultant neurologist from Liverpool's Walton Centre, visiting my local hospital for a routine clinic. He arranged for me to get transferred to Walton (The Neuro, in local hospital parlance) that same day, and Fate Number 3 came along in the form of Mr Andrew Brodbelt, consultant surgeon & clinical lead at The Neuro, whose specialist interest turned out to be brain tumour surgery.
Operation Number 1
This took place on 9th June 2009, and Mr Brodbelt felt if all went well he could potentially remove 95% of the tumour in a procedure called debulking; he was, however, crystal clear that this was treatment not cure, due to the nature of most brain tumour cells infiltrating healthy tissue & having a very similar appearance to healthy brain matter. Mr Brodbelt also felt that I could be home within 48 hours if all went well & I didn't need ICU or high dependency care.
There was very little pain after the operation, best of all Mr B came into the recovery room & asked me Joanne's mobile phone number, which I gave him. That was a releif to me, talking, memory functioning, no weakness that I could determine on either side of my body. Best of all I didn't need ICU/HDU, so the 48 hour discharge might still be possible, and it was. Almost exactly 48 hours later I was discharged home. I could sleep like a log at night, and daytime was spent recuperating at home - Joanne had been signed off sick through stress so we had a little time together.
Obviously we needed more detail of what the tumour was, and whether any follow on treatment would be needed, and this was put to us a fortnight after discharge in one of Mr Brodbelts' clinics; my tumour was a grade 2 Oligodendroglioma, a tumour of the brain's connective tissues, & not the most common adult tumour. What was reassuring was that it was grade 2, because there is a scale of 1 to 4 indicating benign to malignant, & I had been quite anxious that I'd be dealing with a very aggressive tumour needing a lot of follow on treatment. Mr B concluded with the news that I'd require another MRI scan in 6 months (December). There was to be no follow on treatment yet, a decision that at the time was reassuring, but that I've since questioned in my own mind.
Operation Number 2
Yes, the first repeat scan showed the bugger was back. I'd celebrated my 40th birthday on 14/12/2009 with a 20 mile mountain bike ride. I'd then had my MRI scan on 17/12/2009, and on Christmas Eve Mr B gave Joanne & I the bombshell that the tumour was back. so we planned more surgery for January (after my actual fundraiser birthday party).
This operation was somewhat different, I was cautioned that follow on treatment was highly likely, and that recovery would be slower, & Mr B was correct on both counts, I was in hospital for a week nearly, and once the histology wsa back it still showed a grade 2 tumour, which Mr B described as "an oligo with a few astro cells", which wasn't good, sa mixed oligoastro tumours are not nice, & tend to be a bit more aggressive than a pure oligo.
Okay, the more to follow bit starts now; advice, look for the specialist Brain Tumour charities, from my reading Brain Tumour UK, www.braintumouruk.org.uk is one of the best ones out there, while macmillan etc can provide more generalist advice into cancer, treatment etc. Having said that I've rarely used Macmillan resources, and not yet needed the services of a Macmillan nurse.
Many people have asked if I knew something was wrong before my diagnosis; in short, no. I'd felt "off", tired, head achy & glandular for a couple of months, but having seen a GP I'd felt reassured that nothing sinister was going on. How wrong can you be! In the space of a week I went from being able to ride 100km on a bike, to having zero energy & being so bad tempered (personality changes as a symptom of BT's) that the mere thought of exercise made me want to give up. I was never "ill", and between the onset of symptoms in mid February until the day I was diagnosed I didn't have a single day off sick, what was I bloody thinking? Obviously I didn't know what was going on, but when I look back I cannot believe that I continued slogging away like a fool! I was a right nasty person at home, very bad tempered, very snappy with Joanne & Josh, but oddly very few other people. I regret that & wish that I'd lost it at work a bit more often, they might have sat up & taken attention of the fact something was not right.
The first real evidence that something was greatly wrong was one morning, that I remember with distinct clarity, where I recall the alarm clock going off. It was a Tuesday. I hit the snooze button to get an extra 10 minutes, and then sometime later waking in the local A&E department, IV lines everywhere & ECG monitor cables. The A&E consultant was quite clinical & blunt - I'd been fitting, and a CT scan whilst I'd been asleep showed changes, either a bleed or a tumour. Now I was awake I think they felt it was safe enough to get an MRI scan done, in order to get better images. They confirmed the presence of a tumour, & in view of the severity of the seizures I was to be admitted and a plan formed from there.
The Role of Fate in these Situations
Fate number 1: My wife was at home on that particular day. Without a shadow of a doubt if she had been in work I would have died, been found dead in bed as a sudden "unexplained" adult death.
Piece of fate Number 2: Meeting Dr Malcolm Steiger, a consultant neurologist from Liverpool's Walton Centre, visiting my local hospital for a routine clinic. He arranged for me to get transferred to Walton (The Neuro, in local hospital parlance) that same day, and Fate Number 3 came along in the form of Mr Andrew Brodbelt, consultant surgeon & clinical lead at The Neuro, whose specialist interest turned out to be brain tumour surgery.
Operation Number 1
This took place on 9th June 2009, and Mr Brodbelt felt if all went well he could potentially remove 95% of the tumour in a procedure called debulking; he was, however, crystal clear that this was treatment not cure, due to the nature of most brain tumour cells infiltrating healthy tissue & having a very similar appearance to healthy brain matter. Mr Brodbelt also felt that I could be home within 48 hours if all went well & I didn't need ICU or high dependency care.
There was very little pain after the operation, best of all Mr B came into the recovery room & asked me Joanne's mobile phone number, which I gave him. That was a releif to me, talking, memory functioning, no weakness that I could determine on either side of my body. Best of all I didn't need ICU/HDU, so the 48 hour discharge might still be possible, and it was. Almost exactly 48 hours later I was discharged home. I could sleep like a log at night, and daytime was spent recuperating at home - Joanne had been signed off sick through stress so we had a little time together.
Obviously we needed more detail of what the tumour was, and whether any follow on treatment would be needed, and this was put to us a fortnight after discharge in one of Mr Brodbelts' clinics; my tumour was a grade 2 Oligodendroglioma, a tumour of the brain's connective tissues, & not the most common adult tumour. What was reassuring was that it was grade 2, because there is a scale of 1 to 4 indicating benign to malignant, & I had been quite anxious that I'd be dealing with a very aggressive tumour needing a lot of follow on treatment. Mr B concluded with the news that I'd require another MRI scan in 6 months (December). There was to be no follow on treatment yet, a decision that at the time was reassuring, but that I've since questioned in my own mind.
Operation Number 2
Yes, the first repeat scan showed the bugger was back. I'd celebrated my 40th birthday on 14/12/2009 with a 20 mile mountain bike ride. I'd then had my MRI scan on 17/12/2009, and on Christmas Eve Mr B gave Joanne & I the bombshell that the tumour was back. so we planned more surgery for January (after my actual fundraiser birthday party).
This operation was somewhat different, I was cautioned that follow on treatment was highly likely, and that recovery would be slower, & Mr B was correct on both counts, I was in hospital for a week nearly, and once the histology wsa back it still showed a grade 2 tumour, which Mr B described as "an oligo with a few astro cells", which wasn't good, sa mixed oligoastro tumours are not nice, & tend to be a bit more aggressive than a pure oligo.
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