It's been an awful week. The weight of not knowing bearing down every second of everyday. I would love to say that I've just been able to switch it all off, but I haven't. I would love to say that I'm strong, but I'm not, I'm just like anyone else in this situation.... afraid. I woke up this morning with my pillow covered in hair. I've never lost hair due to stress before, but it brought to light the impact of how we are living through this at the moment.
Today is the day we get the call and find out what is going on regarding treatment. I have sat all day and watched my phone like a cat would watch a goldfish. At 5.25pm the call came, it was Peter Clarke (surgeon) from The Marsden...
He began by saying that the tumor is not
inoperable, but it can not be removed entirely using surgery alone. There are sections of the tumor that are to close to sensitive structures for surgical intervention alone to be successful. He
suggested going in lightly, removing a small amount of the tumor and
limiting damage as much as possible while identifying what is tumor and
what is RT damage from previous treatment. This information will then be used to guide the back up plan that Prof Nutting would perform with radio therapy and Chemo. With this on the table I could now make my feeling towards this known. I requested that he is as aggressive as
possible regardless of risk and permanent damage so long as he feels it
will open up a better chance of cure. My feeling on this is that I have nothing much to loose at this point, and if it came to it and we run out of options I would hate to be on my death bed thinking "what if" or "I wish I had"... and if this does end up taking me out I will have done my very best in committing to the treatment. He explained that this more aggressive approach could potentially open up options once he is in there, if this is the way I want to go. I do... if this is a one time deal I want get the best chance at this. I think anyone would wouldn't they?
He went onto explain that he will need to work very closely next to the nerves that control eye movement and the dreaded Carotid Artery, in his words "I don't want you bleeding to death on my operating table.... I'll try not to.
In addition he mentioned that there is possible
involvement with the lining of my brain, he is still uncertain and this
can only be confirmed surgically. If this is the case it changes the
game quite drastically making a cure virtually impossible... but this is
yet to be seen and will be confirmed or dismissed after the surgery has taken place.
Once the result/mapping gained from the surgery
the RT/Chemo approach can then be decided by Prof Nutting. The whole thing will be implemented over 6 weeks or less depending on what Prof Nutting decides once he has the information from the surgery.
He is still talking about a 20%
chance of cure, which we are all holding on to desperately at this end.
His closing words to the call were "let's try and get you inside that 20%".
It feels as though it's time now to let these guys take over, to stop trying to second guess everything and let them get on with what they do and hope it goes the right way.
The operation will take place on Monday 9th of November.
Wednesday, 28 October 2015
Wednesday, 21 October 2015
The other side of the coin...
Just returned home from London. Bethan and I flew out again from Newquay at 11am this morning to Gatwick and took the train up to London to meet Head and Neck specialist surgeon Peter Clarke at The Royal Marsden.
We had time to find some lunch and a sit down so we could get ourselves together before the 4.15pm appointment. We were still in a very comfortable place (mentally) following the meeting on Monday with Mr Nutting, so we were able to sit and enjoy spending time together without the doomy feeling that has been hanging over us both for the last three weeks. We had hit on some progress and to use his words we're "on the right side of a bad situation". Today is the day where we see how it's all going to unfold... or so we thought.
Anyway, we arrived at The Marsden a little early again but were called through quite quickly this time by Mr Clarke. We were sat down in his office and looked forward to another blast of optimism. Not to be... he went straight into explaining how they have to carefully consider the use of surgery in this instance. The tumor is very close to the Carotid Artery that supplies blood to the brain, it has also grown into the muscles in my jaw. This means that treatment of any kind is very risky indeed due to the risk of long-term damage and possibly death through the treatment alone.
He went on to explain the surgical process, (without getting too gory) involves an incision in the upper gum above my front teeth and the removal of a section of the soft pallet (roof of the mouth). This alone with the tumors removal will have a permanent impact on swallowing/eating and speech down the line. All this is doable and I'm happy to live with the consequences if it gets the job done, but that's the problem it won't...well not 100%. The complete removal of all of the tumor through this method of surgery alone is impossible. This means that everything hinges on the effectiveness of re-radiation as a follow-up to the surgery. Here's the scary part... he then went on to say that "Not only is there just a 20-30% chance of "cure" using this process. If the tumor does not respond to the Radiotherapy a second time... I will have only 6-12 months to live and that is with Chemo holding things back, far less than that with out the Chemotherapy"
We were utterly lost for words... we had only been in the room the day before yesterday bathing in rays of hope from Nutting, only now to be brought crashing back down to earth with this brutal new perspective... it was heart breaking. I felt myself trying to hold back the exact same sentences that I said when I was first diagnosed in 2011. "There has to be something more out there...there's more to this than just me you know, I've got two little kids, what are they going to do without their dad?"... but I said it all anyway, it dipped out of me like a leaky tap. He's heard it all I'm sure and sat back in his chair and said "There's no escaping the gravity of this, but what we do now is get our heads together and try and find the best option for treatment".
The meeting was quickly running out of steam, there was that sense that everything that could be said, had been said and things could easily start to just go around in circles. "We will discuss our plans and options for effective treatment and come back to you next Wednesday". Great.., another unbearable week of uncertainty.
So, there it is, in short... they're going to try some stuff, if it works, great! I survive with life changing issues resulting from the treatment. If it doesn't work... that's it.
I've read repeatedly about the various options out there, it seems crazy that the options in my case are so limited. These guys are the best though...so we don't have an alternative.
We returned home, I stared out of the window of the plane into the dark the whole way back... furious at the doctors that have treated me in the past for not seeing this sooner at a point where something more could be done, sad for Bethan sat holding in the tears in the isle next to me, distraught at the thought of my kids growing up without me... at the same time while this is all swimming around in my head I'm anchored to the thought that they are still using the word "cure" and that there is still a chance of getting out of this... we just have to hold on.
We had time to find some lunch and a sit down so we could get ourselves together before the 4.15pm appointment. We were still in a very comfortable place (mentally) following the meeting on Monday with Mr Nutting, so we were able to sit and enjoy spending time together without the doomy feeling that has been hanging over us both for the last three weeks. We had hit on some progress and to use his words we're "on the right side of a bad situation". Today is the day where we see how it's all going to unfold... or so we thought.
Anyway, we arrived at The Marsden a little early again but were called through quite quickly this time by Mr Clarke. We were sat down in his office and looked forward to another blast of optimism. Not to be... he went straight into explaining how they have to carefully consider the use of surgery in this instance. The tumor is very close to the Carotid Artery that supplies blood to the brain, it has also grown into the muscles in my jaw. This means that treatment of any kind is very risky indeed due to the risk of long-term damage and possibly death through the treatment alone.
He went on to explain the surgical process, (without getting too gory) involves an incision in the upper gum above my front teeth and the removal of a section of the soft pallet (roof of the mouth). This alone with the tumors removal will have a permanent impact on swallowing/eating and speech down the line. All this is doable and I'm happy to live with the consequences if it gets the job done, but that's the problem it won't...well not 100%. The complete removal of all of the tumor through this method of surgery alone is impossible. This means that everything hinges on the effectiveness of re-radiation as a follow-up to the surgery. Here's the scary part... he then went on to say that "Not only is there just a 20-30% chance of "cure" using this process. If the tumor does not respond to the Radiotherapy a second time... I will have only 6-12 months to live and that is with Chemo holding things back, far less than that with out the Chemotherapy"
We were utterly lost for words... we had only been in the room the day before yesterday bathing in rays of hope from Nutting, only now to be brought crashing back down to earth with this brutal new perspective... it was heart breaking. I felt myself trying to hold back the exact same sentences that I said when I was first diagnosed in 2011. "There has to be something more out there...there's more to this than just me you know, I've got two little kids, what are they going to do without their dad?"... but I said it all anyway, it dipped out of me like a leaky tap. He's heard it all I'm sure and sat back in his chair and said "There's no escaping the gravity of this, but what we do now is get our heads together and try and find the best option for treatment".
The meeting was quickly running out of steam, there was that sense that everything that could be said, had been said and things could easily start to just go around in circles. "We will discuss our plans and options for effective treatment and come back to you next Wednesday". Great.., another unbearable week of uncertainty.
So, there it is, in short... they're going to try some stuff, if it works, great! I survive with life changing issues resulting from the treatment. If it doesn't work... that's it.
I've read repeatedly about the various options out there, it seems crazy that the options in my case are so limited. These guys are the best though...so we don't have an alternative.
We returned home, I stared out of the window of the plane into the dark the whole way back... furious at the doctors that have treated me in the past for not seeing this sooner at a point where something more could be done, sad for Bethan sat holding in the tears in the isle next to me, distraught at the thought of my kids growing up without me... at the same time while this is all swimming around in my head I'm anchored to the thought that they are still using the word "cure" and that there is still a chance of getting out of this... we just have to hold on.
Monday, 19 October 2015
Day trippin'...
Early start and we're flying off across mashed potato skys to London to meet Professor Nutting at The Royal Marsden Hospital. We arrive two hours early, but let them know we are here just in case there was a chance of being seen early. As I'm sat filling in forms I get a "No ID Caller" come through on my phone... it's Prof Nutting's secretary wanting to know where my most recent scan is, as it hasn't arrived at her office. I panic! I was told by the secretary at Trelisk that all info was forwarded last Friday. I'd spent four hours last Friday making sure that all the information needed had been passed on. If this scan isn't here in London it makes the whole trip pretty much invalid.
After a few minutes of calls to and from Trelisk Hospital the CT scans are found and sent over to The Marsden... and we both breathe a sigh of relief.
A glance around the waiting area, it's full of people from all over the place, different ages, colours, religions... whatever, pretty much all with cancer. It just hit home once again how indiscriminate it is. 2.30pm comes around and we are called in. Nutting introduces himself with a strong handshake and we get down to business. I didn't really expect much in the way of answers today as I knew that this would be more of an introduction as a "new patient", but he was quick to tell us the score. "You have to understand this is a very serious situation we are dealing with here". "When a tumor returns like this having been treated with Radio and Chemotherapy it becomes highly resistant to treatment".... I felt my throat tighten. "We are looking at surgery as the only possible method of cure in this instance".... okay, he said the magic word "cure"!
I had read pretty extensively about breakthrough treatment using endoscopic and robotic surgery techniques. A lot of them pioneered by a man called Peter Clarke who is based at TRM. It turns out Mr Clarke is the man I am being referred on to.
The first time I went through treatment I wasn't ever shown any of my scans or the images of my tumor... to be honest, I hadn't really wanted to see. Today was different... there it all was on the screen in glorious 3D, the inside of my head with the primary tumor illuminated with radioactive dye in the back of my nasal space about the size of a twenty pence piece just below my sinus cavity and brain. Nutting explained that we are "on the right side of a bad situation" due to the fact that the tumor is yet to move to bone or vital organs, is not yet in my brain and hasn't invaded my sinuses. He was quick to say that if that were the case we would then be looking at Chemotherapy only as a way of trying to control the tumor and extend life for as long a possible rather than getting rid of it for good...
I'm back there on Wednesday to meet Peter Clarke to discuss how it is all going to move forward with the operation and there was also a mention of the possible use of Cyberknife as a follow up treatment. This is an accurate single dose radiation treatment that will be used to unsure that nothing has been missed.
We shook hands and said goodbye.
We walked out of the waiting area and into the hallway. I was a bit numb to it all, it felt like I'd just had a 500 gigabytes of information downloaded into my head and there was an immediate need to process it before normal function could resume, I think Bethan felt the same... we needed a brew!
On the drive back to the airport I called my Mum and told her the news as I knew she would be sat in the front room of our house on her seventh cup of tea worried to death. The flight home was pretty sedate, though not physically tired, I think we both needed to give our brains a rest. It had been a day full of stress, worry, relief and excitement all rolled into one.
We arrived at home and I needed fresh air... I walked alone along the beach just as the light was dying off trying to process the day when I realised, I won't be doing Chemo! I will be able surf once I've got over the op. There's a really good chance that life won't be completely shut down for an entire year like that first time around. Things are still pretty scary, and I'm sitting here with cancer in the middle of my head, but it feels like things are looking up.
Friday, 16 October 2015
Scans and plans.
The biggest concern since finding out we were back in this has been trying to measure how different things will be this time round. I'm a terrible second guesser, by that I mean when I'm placed in a desperate situation like this, I will unhappily sit around thinking of the hundred and one ways that things can possibly play out (positive and negative) based only on the limited information I have. I guess some people have the ability to compartmentalise these things, sweep them under the carpet and keep on truckin'... not me I'm afraid, I'm a total whittler!
We have plodded through this last week taking each day an hour at a time while we wait for the fragments of information to be fed to us as this new chapter unfolds. Wednesday saw us driving over for a late appointment at Dorset Hospital. The mobile PET/CT scanning unit that services the South West was making its weekly stop there and this was the quickest available appointment. It was nice to spend time with Bethan and we stayed over with family close by, which offered a welcome dose of laughter and helped to chase away the looming tension following the scan. This scan forms the final piece of the diagnosis and will show the current state of the tumor(s) and how they are acting in the body. It will also show any metastasis (spreading of the cancer) to bone, spine and major organs. If this is the case it will seriously effect the treatment and whether they will be looking to cure (gone for good) or just treat (suppress and slow growth) the cancer. We were told that following the scan we will receive a call on Friday providing us with the scan report.
We drove back home on the Thursday and it was hard not to think about what is just around the corner. Visiting Poole hospital was a stark reminder of the cold, harsh world of hospitals and cancer care. The everlasting corridors, the "brutal" architecture with wall to wall sickness built in as standard.... it's just grim! It brought the last time I went through this flooding back in waves of fear and anxiety.
We arrived back home early Thursday evening and the kids were up and about, excited to see us. The Grandma's had been looking after them both while we were away so they had been spoilt crazy. We were both very tired from the drive and whole Dorset experience, so weren't to far behind the kids in hitting the hay.
I woke at 4.30am the following morning, the wheels in my head turning. I went down stairs and lay in the sofa in the dark once again summing up all the possibilities that lay ahead. Today was the day we would get a glimpse into the future as the final piece of the diagnostic puzzle falls into place.
The phone rang at 10.55am. I almost dropped my coffee muddling to answer the "No Caller ID" phone call... It was Jackie, the Head and Neck Specialist Nurse. "No report yet, but I thought I would call and let you know all your other info has been sent to The Royal Marsden for your Monday afternoon appointment". I have been referred to a team at "The Marsden" that have a more specialist interest in what I have. The team at Truro were very open in saying that because of its rarity they would be "looking wider" at ways of solving the issue. The plan is that we fly over for the day to London and see Professor Nutting, or as I can't stop calling him "The Nutty Professor". I'm pretty sure I'm going to let that slip at some point... watch this space.
From what I've been able to read and gather together he seems to be one of the best Oncology guys in the country and works as part of a clinical team made up of equally skilled chaps who all specialise in folk like me with rare or hard to treat situations.
"The scan report is not ready yet, but I will call you later once I have it here in front of me" Jackie said. So, I wait...
Eventually the call comes through. Jackie says that she is going to read it as it is. She lists and series of codes and numbers and then tiny bits of positive information like "no evidence of recurrent disease in any other areas". Once she finishes reading the report I instantly start with my storm of questions. The bottom line (and neither of us are doctors), is that the tumor is there in my nasal space and has begun to spread to a Lymph node in my neck... that's it, not spine, not skull, not lungs or any other vital organs as can be the case. This was great news!.... well not great, but it must surely mean we are able to have a good crack at it from a good place? "Yes, I would think so"... Jackie agreed, "Prof Nutting will offer far greater clarity on Monday, and while this is a different situation from last time I don't think it's quite as bad as you possibly imagined it, is it?". Jackie was right, we had had far to long to work out every horrific scenario imaginable.... yes, it's still cancer, cancer that has returned having had everything thrown at it...but for some reason and I'm not sure why, for the first time it feels like it's going to be okay... we just have to hear that in London on Monday.
Couple of big thank you's... Chris and his Brother Paul Stimpson. Close and not so close friends for your amazing concern and support. Easy to think it makes no odds, you're wrong it makes a massive difference! Family near and far for your everlasting love and support.
We have plodded through this last week taking each day an hour at a time while we wait for the fragments of information to be fed to us as this new chapter unfolds. Wednesday saw us driving over for a late appointment at Dorset Hospital. The mobile PET/CT scanning unit that services the South West was making its weekly stop there and this was the quickest available appointment. It was nice to spend time with Bethan and we stayed over with family close by, which offered a welcome dose of laughter and helped to chase away the looming tension following the scan. This scan forms the final piece of the diagnosis and will show the current state of the tumor(s) and how they are acting in the body. It will also show any metastasis (spreading of the cancer) to bone, spine and major organs. If this is the case it will seriously effect the treatment and whether they will be looking to cure (gone for good) or just treat (suppress and slow growth) the cancer. We were told that following the scan we will receive a call on Friday providing us with the scan report.
We drove back home on the Thursday and it was hard not to think about what is just around the corner. Visiting Poole hospital was a stark reminder of the cold, harsh world of hospitals and cancer care. The everlasting corridors, the "brutal" architecture with wall to wall sickness built in as standard.... it's just grim! It brought the last time I went through this flooding back in waves of fear and anxiety.
We arrived back home early Thursday evening and the kids were up and about, excited to see us. The Grandma's had been looking after them both while we were away so they had been spoilt crazy. We were both very tired from the drive and whole Dorset experience, so weren't to far behind the kids in hitting the hay.
I woke at 4.30am the following morning, the wheels in my head turning. I went down stairs and lay in the sofa in the dark once again summing up all the possibilities that lay ahead. Today was the day we would get a glimpse into the future as the final piece of the diagnostic puzzle falls into place.
The phone rang at 10.55am. I almost dropped my coffee muddling to answer the "No Caller ID" phone call... It was Jackie, the Head and Neck Specialist Nurse. "No report yet, but I thought I would call and let you know all your other info has been sent to The Royal Marsden for your Monday afternoon appointment". I have been referred to a team at "The Marsden" that have a more specialist interest in what I have. The team at Truro were very open in saying that because of its rarity they would be "looking wider" at ways of solving the issue. The plan is that we fly over for the day to London and see Professor Nutting, or as I can't stop calling him "The Nutty Professor". I'm pretty sure I'm going to let that slip at some point... watch this space.
From what I've been able to read and gather together he seems to be one of the best Oncology guys in the country and works as part of a clinical team made up of equally skilled chaps who all specialise in folk like me with rare or hard to treat situations.
"The scan report is not ready yet, but I will call you later once I have it here in front of me" Jackie said. So, I wait...
Eventually the call comes through. Jackie says that she is going to read it as it is. She lists and series of codes and numbers and then tiny bits of positive information like "no evidence of recurrent disease in any other areas". Once she finishes reading the report I instantly start with my storm of questions. The bottom line (and neither of us are doctors), is that the tumor is there in my nasal space and has begun to spread to a Lymph node in my neck... that's it, not spine, not skull, not lungs or any other vital organs as can be the case. This was great news!.... well not great, but it must surely mean we are able to have a good crack at it from a good place? "Yes, I would think so"... Jackie agreed, "Prof Nutting will offer far greater clarity on Monday, and while this is a different situation from last time I don't think it's quite as bad as you possibly imagined it, is it?". Jackie was right, we had had far to long to work out every horrific scenario imaginable.... yes, it's still cancer, cancer that has returned having had everything thrown at it...but for some reason and I'm not sure why, for the first time it feels like it's going to be okay... we just have to hear that in London on Monday.
Couple of big thank you's... Chris and his Brother Paul Stimpson. Close and not so close friends for your amazing concern and support. Easy to think it makes no odds, you're wrong it makes a massive difference! Family near and far for your everlasting love and support.
Saturday, 10 October 2015
Back for more...
I'm picking up this blog again because last Friday morning I was told that my cancer has returned.
As I'm sure you can imagine as a family we are all devastated to hear this and it seems as though the nightmare that has haunted us for the last three years has become a reality!
I've been suffering with the symptoms of an ongoing ear infection since last August and have gone deaf on my left side. Following a few courses of anti-biotics and lots of meetings with my head and neck/ENT doctors at the hospital it was decided I should have an MRI scan to see if radiotherapy damage was the cause of the infection not being able to clear. The MRI showed "an area of concern" in the back of my nasal space. Looking back, the tone of the conversations was very different. Usually there was a quirky optimism when talking to the cancer docs... but that had been replaced with a terrifying seriousness. The biopsy that followed confirmed that the Nasopharyngeal Carcinoma had returned, small... but in the same place as before. So... now what? More tests, more scans, more waiting. We are having to go over to Dorset on Wednesday for a full body scan. This more detailed scan is to see if the cancer has spread and will determine the treatment pathway. I'm completely guilty of doing the thing that you are not supposed to do in this situation... research! I'm not talking Wikipedia, but current medical journals and other trusted sources. From what I have found and confirmed as true with the doctors this type of cancer's return presents a "clinical dilemma" in that it becomes a lot less responsive to the standard treatment I had before and surgical removal is virtually impossible due to its location and the surrounding structures i.e brain, nerves and arteries. While this 'research' can empower and arm you with the relevant facts it can also scare the crap out of you! I could start throwing statistics and percentages about, but they are even more depressing. The crux is that as NPC is very 'curable' first time around, recurrence seems to be a very different matter thanks to the many hazards and difficulties associated with ongoing chemo and Radio Theraphy and the resistance to this treatment that the tumors second appearance offers. However... the doctors really seem to be 'on it'. They have said that they are 'throwing the net wide' in that they are talking to specialist teams at The Royal Marsden in London and have said that it is likely that some of the treatment I need is not available here in the South West or even in the UK, but that's jumping ahead a little in that they still need Wednesdays scan to see the whole picture.
We broke the news to the kids yesterday who dealt with it well it seems, but we are keeping a close eye on them. Even though its early days I've hated the impact the stress and worry has had on us as a family. I've had to drop out of a new teaching job, close my online shop down and the surf contest I had spent 6 months organising wasn't that enjoyable as I was pretty much numb with worry to the point that I could barely surf following the shock of the original scan results. Its been a testing time and we know its only just begun. That said, support from friends and family has been overwhelming and reassuring in equal measure. It doesn't make it that much easier, but we keep telling ourselves we have been here before, we know what's involved and as I said to a good friend yesterday it's not a battle, its not a fight... it's a ride. I think Bill Hicks might have influenced that statement a little.
I realise that writing a blog like this might seem like the usual attention seeking behavior we are all guilty of from time to time, but I genuinely find that it helps me a lot to be able to express what's going on. It proved useful last time as a distraction for me and an efficient, energy saving way of keeping those who want to know what's going on in the loop. I hope these first few paragraphs give some idea as to what we know so far. C
As I'm sure you can imagine as a family we are all devastated to hear this and it seems as though the nightmare that has haunted us for the last three years has become a reality!
I've been suffering with the symptoms of an ongoing ear infection since last August and have gone deaf on my left side. Following a few courses of anti-biotics and lots of meetings with my head and neck/ENT doctors at the hospital it was decided I should have an MRI scan to see if radiotherapy damage was the cause of the infection not being able to clear. The MRI showed "an area of concern" in the back of my nasal space. Looking back, the tone of the conversations was very different. Usually there was a quirky optimism when talking to the cancer docs... but that had been replaced with a terrifying seriousness. The biopsy that followed confirmed that the Nasopharyngeal Carcinoma had returned, small... but in the same place as before. So... now what? More tests, more scans, more waiting. We are having to go over to Dorset on Wednesday for a full body scan. This more detailed scan is to see if the cancer has spread and will determine the treatment pathway. I'm completely guilty of doing the thing that you are not supposed to do in this situation... research! I'm not talking Wikipedia, but current medical journals and other trusted sources. From what I have found and confirmed as true with the doctors this type of cancer's return presents a "clinical dilemma" in that it becomes a lot less responsive to the standard treatment I had before and surgical removal is virtually impossible due to its location and the surrounding structures i.e brain, nerves and arteries. While this 'research' can empower and arm you with the relevant facts it can also scare the crap out of you! I could start throwing statistics and percentages about, but they are even more depressing. The crux is that as NPC is very 'curable' first time around, recurrence seems to be a very different matter thanks to the many hazards and difficulties associated with ongoing chemo and Radio Theraphy and the resistance to this treatment that the tumors second appearance offers. However... the doctors really seem to be 'on it'. They have said that they are 'throwing the net wide' in that they are talking to specialist teams at The Royal Marsden in London and have said that it is likely that some of the treatment I need is not available here in the South West or even in the UK, but that's jumping ahead a little in that they still need Wednesdays scan to see the whole picture.
We broke the news to the kids yesterday who dealt with it well it seems, but we are keeping a close eye on them. Even though its early days I've hated the impact the stress and worry has had on us as a family. I've had to drop out of a new teaching job, close my online shop down and the surf contest I had spent 6 months organising wasn't that enjoyable as I was pretty much numb with worry to the point that I could barely surf following the shock of the original scan results. Its been a testing time and we know its only just begun. That said, support from friends and family has been overwhelming and reassuring in equal measure. It doesn't make it that much easier, but we keep telling ourselves we have been here before, we know what's involved and as I said to a good friend yesterday it's not a battle, its not a fight... it's a ride. I think Bill Hicks might have influenced that statement a little.
I realise that writing a blog like this might seem like the usual attention seeking behavior we are all guilty of from time to time, but I genuinely find that it helps me a lot to be able to express what's going on. It proved useful last time as a distraction for me and an efficient, energy saving way of keeping those who want to know what's going on in the loop. I hope these first few paragraphs give some idea as to what we know so far. C
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