And so ends the worst year of my life.
Since about August/September I've been waiting for today, well the end of today anyway. This year has been an emotional and physical rollercoaster ride and I really can't wait for it to end. Physically I'm still feeling the after effects of my treatment, sore shoulder, stiff neck, tender mouth and still can't taste properly. These will all improve in 2010.
Emotionally I'm much, much better. I'm really beginning to feel normal (only for a given value of normal of course :) ). This week I'm back to learning stuff and it's given me a real buzz. For the first time in ages I go to bed thinking about technology problems rather than personal problems and that can only be good.
I hope everybody has a great 2010, and a very healthy 2010. It can only get better!
Happy and Healthy New Year to all :)
Thursday, December 31, 2009
Thursday, December 24, 2009
Thursday, December 17, 2009
Follow Up
I had another follow up on Tuesday this week (two days ago from when I write this), and again it was all good. The doctor (same one I saw last time), was still amazed and pleased at how well I looked. Half jokingly he told me it must be in my genes. (I have a friend of a friend who was diagnosed with the same cancer as me three months before me and he's still struggling with the recovery, he still has mucous, still feels sick and is struggling to eat).
At the check-ups two things are done. The doctor stands behind me and feels both sides of my neck, looking for lumps I guess. Once he's done that he puts a camera up my nose which goes down into my throat, this is nothing like as bad as it sounds. I think this is for two reasons, to look at how my throat is healing (it's still pretty swollen), and to check for any abnormalities.
It was all clear (not that I expected anything else) and I have to go back again in January. They do the follow-ups every 4 weeks or so, not sure why they're so regular, maybe is an aggressive cancer or maybe it's because the healing process takes a while and they keep an eye on that.
At the check-ups two things are done. The doctor stands behind me and feels both sides of my neck, looking for lumps I guess. Once he's done that he puts a camera up my nose which goes down into my throat, this is nothing like as bad as it sounds. I think this is for two reasons, to look at how my throat is healing (it's still pretty swollen), and to check for any abnormalities.
It was all clear (not that I expected anything else) and I have to go back again in January. They do the follow-ups every 4 weeks or so, not sure why they're so regular, maybe is an aggressive cancer or maybe it's because the healing process takes a while and they keep an eye on that.
Friday, December 11, 2009
On Feeling Better
When you have a physical illness it's relatively easy to point at something and say 'that hurts less today' and also to understand why it hurts less, there's a physical healing process. With me, as well as feeling physically shot I've also been 'down.' I wouldn't go so far as to say depressed, it hasn't been that bad, but definitely not feeling myself. I don't think this is directly because I have been diagnosed with cancer, to be honest that's never really bothered me, I've always assumed I'd get over that. However with cancer the treatment is pretty brutal, I've described it before as medieval, slash and burn medicine. Slash out the tumor with surgery and burn away any remaining cells with radiotherapy and/or chemotherapy, none of this is very pleasant, but it will likely have a happy ending.
The issue with the treatment, at least for me, is the medium to long term effects, these are the things you have to live with for a while after the cancer has, hopefully, gone. For me this has been loss of appetite, loss of taste, stiff shoulder, stiff neck, dryness. You may look at this and think 'get over yourself, none of them is that big a deal' and you're probably right. But, when I look at these and think I may have to live with them for the next 10,20,30,40 years then it shines a different light on them, and I think that is what's been getting me down over the last three months.
This week things have changed, and I can't point at it and say why. I'm generally a happy, optimistic person, but I haven't been for the last few months, at least not as much as I normally would. But for some reason this week I feel a lot happier, a lot more like my old self. Maybe it's just a timing thing, as enough time goes by you body gets better and your mind sees that and starts to feel better. IANA psychologist so I'm in no position to say.
One thing may have contributed though, I'm starting to get my appetite back. I still can't taste much and I'm still dry but now I want to eat. This is a huge plus for me. I can't say what came first, appetite or feeling better, and I'm not convinced there's a link (correlation does not imply causation) but it's good to be feeling something like back to normal.
One other minor thing, the beard is coming back on my right cheek, not very thick yet but there's definitely something there. Another small victory.
The issue with the treatment, at least for me, is the medium to long term effects, these are the things you have to live with for a while after the cancer has, hopefully, gone. For me this has been loss of appetite, loss of taste, stiff shoulder, stiff neck, dryness. You may look at this and think 'get over yourself, none of them is that big a deal' and you're probably right. But, when I look at these and think I may have to live with them for the next 10,20,30,40 years then it shines a different light on them, and I think that is what's been getting me down over the last three months.
This week things have changed, and I can't point at it and say why. I'm generally a happy, optimistic person, but I haven't been for the last few months, at least not as much as I normally would. But for some reason this week I feel a lot happier, a lot more like my old self. Maybe it's just a timing thing, as enough time goes by you body gets better and your mind sees that and starts to feel better. IANA psychologist so I'm in no position to say.
One thing may have contributed though, I'm starting to get my appetite back. I still can't taste much and I'm still dry but now I want to eat. This is a huge plus for me. I can't say what came first, appetite or feeling better, and I'm not convinced there's a link (correlation does not imply causation) but it's good to be feeling something like back to normal.
One other minor thing, the beard is coming back on my right cheek, not very thick yet but there's definitely something there. Another small victory.
Tuesday, December 08, 2009
Appetite
The dietitian I spoke to also said that having my appetite suppressed is normal. Could take between three and six months to return to normal and with some people up to twelve months. Again fingers-crossed that this will be sooner rather than later.
PEG Removal
Spoke to a dietitian today; she hopes I can get my PEG removed on December 22nd. It's an outpatient job, they cut off all the 'taps' and simply yank the thing out. Unlike insertion where it's a full endoscopy, which was extremely unpleasant. Fingers crossed.
Tuesday, December 01, 2009
Dexterity
Since the operation on my throat the motion of my right arm has become restricted. For example when I put on a coat or jacket I put my left arm in first which is not something I'd normally notice, except that now, when I put reach my right arm behind me to grab the coat it hurts like hell!
Similarly, stretching the arm to get to anything also hurts, holding the arm above my head hurts, so, basically, it hurts.
The other thing I realised today though, is that my writing has been affected. I don't write much with a pen, mostly my signature, and I had noticed recently that sometimes when writing my signature I found it much more difficult to control the pen. This has happened occasionally (usually when I'm hungover!) so I'd put this down to a normal state of affairs. However today I was taking notes in a meeting and I do have a problem. There's nothing major, simply a lack of complete pen control, I found writing certain letters difficult (my writing isn't great anyway).
Another side-effect to cope with.
The good news is that things got better with use so I don't think this is a long term issue
Similarly, stretching the arm to get to anything also hurts, holding the arm above my head hurts, so, basically, it hurts.
The other thing I realised today though, is that my writing has been affected. I don't write much with a pen, mostly my signature, and I had noticed recently that sometimes when writing my signature I found it much more difficult to control the pen. This has happened occasionally (usually when I'm hungover!) so I'd put this down to a normal state of affairs. However today I was taking notes in a meeting and I do have a problem. There's nothing major, simply a lack of complete pen control, I found writing certain letters difficult (my writing isn't great anyway).
Another side-effect to cope with.
The good news is that things got better with use so I don't think this is a long term issue
Monday, November 30, 2009
Eating
Enough with the complaining already (me that is)!
Fish and chips for dinner, not home cooked but M&S best.
Lovely, really enjoyed it. Yum! Yum!
Fish and chips for dinner, not home cooked but M&S best.
Lovely, really enjoyed it. Yum! Yum!
The Voice
Since my radiotherapy my voice has deepened. I assume (lots of assumptions in this blog) this is because my throat is still quite swollen and that is affecting my voice box.
Last week I was struck down by a virus/throat infection, this has deepened my voice even further, to the point that when I phoned my wife today she didn't know who it was! I've started to sound like Barry White and am thinking of applying for a job as a late night radio DJ!
I've asked my friends to call me BW (sorry but Barry as a name just doesn't hack it).
So ladies, if you're looking for a sexy voice, I'm the man for you (hey, I have to have some benefits from this bloody illness) :)
Last week I was struck down by a virus/throat infection, this has deepened my voice even further, to the point that when I phoned my wife today she didn't know who it was! I've started to sound like Barry White and am thinking of applying for a job as a late night radio DJ!
I've asked my friends to call me BW (sorry but Barry as a name just doesn't hack it).
So ladies, if you're looking for a sexy voice, I'm the man for you (hey, I have to have some benefits from this bloody illness) :)
Friday, November 27, 2009
On Getting an Infection
This week I've been laid up in bed for most of the week. I came down with what I think was a virus over the weekend. In fact I think it hit on Friday last week and I slowly went downhill until by Saturday evening I was completely out of it. Went to bed 11-ish on Saturday and didn't really get up again until Tuesday night, finally got dressed for the first time on Thursday. It wasn't flu (I don't think) as I didn't have any sort of temperature, to be honest I'm not really sure what it was.
Late last week and over the weekend when I went to drink anything, especially first thing in the morning, I found it really hard to swallow, to the extent that sometimes I'd drink and I'd feel the water coming back out my nose. Just a drop of water but still not pleasant. Obviously this was happening because my throat was closing up and stopping me swallowing. I'd also have that taste of puss whenever I eat, which is now slowly going away (again) which tells me I had a throat infection.
The question in my mind is, what caused what? Was my throat closing because I had an infection which spread to my throat. Or, did I have a throat infection which caused me to feel ill (as well as stopping me swallowing). I have a feeling it was the later.
I was also ill for longer than I'd expect, and not just unwell but completely flattened. I think I can say that my immune system is not compromised, I've not had chemotherapy and I've not been told to steer clear of anyone who is ill. However I'm still in 'recovery' mode, it's only weeks since I ended radiotherapy and I still get tired easily which I assume is why I'm going to take a while to get over illnesses. Also, I've had the lymph nodes in my neck removed, lymph nodes help to fight infection but as there are some 500-600 in the body (according to Wikipedia) I don't think removing the few in my neck is going to cause a huge difference.
I've been lucky (actually,don't talk to me about luck!) since I've been diagnosed in that I haven't picked up any other illnesses, that also means though that I have nothing to judge this week against; if I get an illness over the next few months will I take a lot longer to heal than 'normal'? or was last week just a one off?
Late last week and over the weekend when I went to drink anything, especially first thing in the morning, I found it really hard to swallow, to the extent that sometimes I'd drink and I'd feel the water coming back out my nose. Just a drop of water but still not pleasant. Obviously this was happening because my throat was closing up and stopping me swallowing. I'd also have that taste of puss whenever I eat, which is now slowly going away (again) which tells me I had a throat infection.
The question in my mind is, what caused what? Was my throat closing because I had an infection which spread to my throat. Or, did I have a throat infection which caused me to feel ill (as well as stopping me swallowing). I have a feeling it was the later.
I was also ill for longer than I'd expect, and not just unwell but completely flattened. I think I can say that my immune system is not compromised, I've not had chemotherapy and I've not been told to steer clear of anyone who is ill. However I'm still in 'recovery' mode, it's only weeks since I ended radiotherapy and I still get tired easily which I assume is why I'm going to take a while to get over illnesses. Also, I've had the lymph nodes in my neck removed, lymph nodes help to fight infection but as there are some 500-600 in the body (according to Wikipedia) I don't think removing the few in my neck is going to cause a huge difference.
I've been lucky (actually,don't talk to me about luck!) since I've been diagnosed in that I haven't picked up any other illnesses, that also means though that I have nothing to judge this week against; if I get an illness over the next few months will I take a lot longer to heal than 'normal'? or was last week just a one off?
Tuesday, November 17, 2009
First Follow Up
Been to the hospital this morning. Nearly all good news but some not so good, nothing serious just not quite what I was hoping to hear. The good news is that everybody was amazed at how well I looked and at how much I'd progressed. I also persuaded the nurse that I should have my PEG out (after giving her a hug :) ).
The not so good was that I'll have a dry mouth for up to twelve months, the feeling in my head and neck may never come back and my taste, if it comes back at all, could take twelve months! Nothing too serious, but still a slight downer.
I have to go back in 4 weeks - which is 'interesting'. It looks like they keep a very close eye on throat cancers, so if it's going to come back it'll be sooner rather than later. Not sure if I should be disturbed by this or not. Fuck all I can do about it at the moment so I'm not even thinking about that!
The not so good was that I'll have a dry mouth for up to twelve months, the feeling in my head and neck may never come back and my taste, if it comes back at all, could take twelve months! Nothing too serious, but still a slight downer.
I have to go back in 4 weeks - which is 'interesting'. It looks like they keep a very close eye on throat cancers, so if it's going to come back it'll be sooner rather than later. Not sure if I should be disturbed by this or not. Fuck all I can do about it at the moment so I'm not even thinking about that!
Monday, November 16, 2009
Operations and Scarring
Before I started radiotherapy I had a couple of operations. The first was to remove a tonsil (the one on the right hand side) which left me in pain for about two weeks after. The net op was to remove the swollen gland in my neck, and I'm still paying for that.
I assumed the gland removal would be 'trivial'. It wasn't until I got to sign my consent form that I realised how large an operation it was. The surgeon told me (on the morning of the op) that there would be two cuts, one from my jaw hinge to my Adam's Apple, the other from under the chin to the first cut. You could say I was surprised at this as I though it would only be a small cut around the gland. As it turned out I only had one cut, from beneath my ear for about 6 inches down towards my throat.
The next surprise was the possible side effects. It turns out that the lymph nodes can 'attach' themselves to the nerves in the neck and removing the nodes can result in nerve damage at worst, and nerve trauma at best. The damage could result in: limited tounge movement; losing the ability to raise the arm (you get shoulder nerve damage and sometimes they have to cut through the shoulder nerve); and, at the extreme, damage to the nerve that controls the diaphragm, making breathing difficult. These side effects go from most to least likely.
Luckily when I cam around from the op I didn't appear to have any of these problems. My tounge is fine, I never thought I'd lose the diaphragm nerve, and the first thing I did when I came around was to raise my arm above my head to prove to myself that I'd still be able to swing a golf club!
After the op, the surgeons told me it had 'been successful', I assume by this they meant there was no real nerve damage.
The worst side effect post operation was the numbness on the side of my head, this I hadn't been told about but according to the doctors who saw me the following day was 'normal' and should clear up in about 3 months. The numbness felt fairly severe, the worst part was trying to lie on that side of my head, it felt like I was lying on a wooden block.
I had the op about 3 months ago, and the numbness is still there (seeing the doc. tomorrow and it's something I intend asking about). I could stick pins in the side of my head, the back of my shoulder and the side of my shoulder and not be able to feel them. Turning my head can also be tough partly due to the soreness and partly due to the scar. Having said that things seem to be moving, my collar bone and shoulder are starting to feel really sore and tender, I'm hoping this is the feeling coming back into the nerves.
The scar has healed amazingly well and you probably wouldn't notice it at first, or even second, glance. The thing pulls like buggery though. In the morning especially, my scar feels very tight, this eases a little during the day but tends to worsen again by night. It feels like somebody's attached a bungy cord to my neck and pulled it tight. It's bloody uncomfortable and I wonder if it will be like this forever. I'm using 'Bio Oil' (good for stretch marks apparently) but if anybody has scar 'tips' I'd happily take them!
I assumed the gland removal would be 'trivial'. It wasn't until I got to sign my consent form that I realised how large an operation it was. The surgeon told me (on the morning of the op) that there would be two cuts, one from my jaw hinge to my Adam's Apple, the other from under the chin to the first cut. You could say I was surprised at this as I though it would only be a small cut around the gland. As it turned out I only had one cut, from beneath my ear for about 6 inches down towards my throat.
The next surprise was the possible side effects. It turns out that the lymph nodes can 'attach' themselves to the nerves in the neck and removing the nodes can result in nerve damage at worst, and nerve trauma at best. The damage could result in: limited tounge movement; losing the ability to raise the arm (you get shoulder nerve damage and sometimes they have to cut through the shoulder nerve); and, at the extreme, damage to the nerve that controls the diaphragm, making breathing difficult. These side effects go from most to least likely.
Luckily when I cam around from the op I didn't appear to have any of these problems. My tounge is fine, I never thought I'd lose the diaphragm nerve, and the first thing I did when I came around was to raise my arm above my head to prove to myself that I'd still be able to swing a golf club!
After the op, the surgeons told me it had 'been successful', I assume by this they meant there was no real nerve damage.
The worst side effect post operation was the numbness on the side of my head, this I hadn't been told about but according to the doctors who saw me the following day was 'normal' and should clear up in about 3 months. The numbness felt fairly severe, the worst part was trying to lie on that side of my head, it felt like I was lying on a wooden block.
I had the op about 3 months ago, and the numbness is still there (seeing the doc. tomorrow and it's something I intend asking about). I could stick pins in the side of my head, the back of my shoulder and the side of my shoulder and not be able to feel them. Turning my head can also be tough partly due to the soreness and partly due to the scar. Having said that things seem to be moving, my collar bone and shoulder are starting to feel really sore and tender, I'm hoping this is the feeling coming back into the nerves.
The scar has healed amazingly well and you probably wouldn't notice it at first, or even second, glance. The thing pulls like buggery though. In the morning especially, my scar feels very tight, this eases a little during the day but tends to worsen again by night. It feels like somebody's attached a bungy cord to my neck and pulled it tight. It's bloody uncomfortable and I wonder if it will be like this forever. I'm using 'Bio Oil' (good for stretch marks apparently) but if anybody has scar 'tips' I'd happily take them!
Sunday, November 15, 2009
Eating and Drinking
One of the drawbacks of my radiotherapy is the way it affects eating. This is a three pronged attack, saliva, appetite and taste!
I have less saliva than I used to because the saliva gland on my right side has been destroyed. My left saliva gland is still there and I do have some saliva but only half of what I used to (duh!), although apparently the other gland will compensate, I'm still waiting for that to kick in.
My taste is an odd mixture. I can taste chocolate! I can also taste eggs, cheese and certain meats, for example I can still taste sausages, but chicken is too dry. I can, luckily, taste potatoes, so chips (fries to you yanks) mash and "bubble and squeak" all work. I can also taste some vegetables, brocolli is good, but brussel sprouts (which I used to absolutely love) now taste really nasty.
I seem to have lost most of my sweet taste so I can't taste sugar, Coke tastes (more or less) like fizzy water for example. Pepsi tastes more like Pepsi and Coke Zero tastes better that real Coke. But the real down side of this is beer. I love beer! That first beer on an evening out, or after a days work tastes wonderful. I also love Guiness, but now that I can't taste sugar beer tastes really, really bitter. Try and remember the first time that you tried beer as a teenager, that's how it tastes. This breaks my heart!
The other thing with my taste is that it seems to get overwhelmed quickly. So when I eat initially I can taste something, but after a few mouthfuls the taste disappears. I'm guessing this is because I've lost many of my taste receptors so that when I eat food, the food attaches to the receptors that are left and, as there aren't many, after a while my taste disappears.
Then there's my appetite, anybody who knows me knows that I normally have a large appetite. For whatever reason my appetite has all but disappeared. I can't think of any reason for this, unless it's linked to the two other things above, lack of saliva and limited taste!
Let me say up front that none of this is fun, especially for somebody who loves food, cooking an eating out as much as I do.
Things are getting better and I'm not sure why. I don't want to be overly optimistic and say that my taste is improving, I wonder if I'm getting used to things and my brain is starting to adapt to its new world. To be honest I have no idea.
Last night I went out for a meal with my wife and some friends. This is about the first time I've been out for a restaurant meal in 4 months or maybe more, I was starting to go stir crazy at home and fed up with not eating out. We went Mexican, mostly because in the week I'd had an Enchilada and enjoyed it (well mostly enjoyed it), so Mexican seemed the logical choice. I ended up with Beef Chimichanga at Chiquito's in Cheltenham. Now, Mexican here is nothing like the Mexican food I've had in California (another reason I'd like to live there!) but, I really enjoyed the meal I had. It was a shredded beef chimichanga and the beef tasted like beef. It tasted a little dry but that was due to my lack of saliva and not the food. I also had a drink, a Margarita and I could taste it, at least the lime in it.
This is s huge step forward for me, a meal I actually enjoyed and the ability to drink alcohol!
Tonight it's curry! Not especially spicy but another step in the right direction.
Happi(er) days!
I have less saliva than I used to because the saliva gland on my right side has been destroyed. My left saliva gland is still there and I do have some saliva but only half of what I used to (duh!), although apparently the other gland will compensate, I'm still waiting for that to kick in.
My taste is an odd mixture. I can taste chocolate! I can also taste eggs, cheese and certain meats, for example I can still taste sausages, but chicken is too dry. I can, luckily, taste potatoes, so chips (fries to you yanks) mash and "bubble and squeak" all work. I can also taste some vegetables, brocolli is good, but brussel sprouts (which I used to absolutely love) now taste really nasty.
I seem to have lost most of my sweet taste so I can't taste sugar, Coke tastes (more or less) like fizzy water for example. Pepsi tastes more like Pepsi and Coke Zero tastes better that real Coke. But the real down side of this is beer. I love beer! That first beer on an evening out, or after a days work tastes wonderful. I also love Guiness, but now that I can't taste sugar beer tastes really, really bitter. Try and remember the first time that you tried beer as a teenager, that's how it tastes. This breaks my heart!
The other thing with my taste is that it seems to get overwhelmed quickly. So when I eat initially I can taste something, but after a few mouthfuls the taste disappears. I'm guessing this is because I've lost many of my taste receptors so that when I eat food, the food attaches to the receptors that are left and, as there aren't many, after a while my taste disappears.
Then there's my appetite, anybody who knows me knows that I normally have a large appetite. For whatever reason my appetite has all but disappeared. I can't think of any reason for this, unless it's linked to the two other things above, lack of saliva and limited taste!
Let me say up front that none of this is fun, especially for somebody who loves food, cooking an eating out as much as I do.
Things are getting better and I'm not sure why. I don't want to be overly optimistic and say that my taste is improving, I wonder if I'm getting used to things and my brain is starting to adapt to its new world. To be honest I have no idea.
Last night I went out for a meal with my wife and some friends. This is about the first time I've been out for a restaurant meal in 4 months or maybe more, I was starting to go stir crazy at home and fed up with not eating out. We went Mexican, mostly because in the week I'd had an Enchilada and enjoyed it (well mostly enjoyed it), so Mexican seemed the logical choice. I ended up with Beef Chimichanga at Chiquito's in Cheltenham. Now, Mexican here is nothing like the Mexican food I've had in California (another reason I'd like to live there!) but, I really enjoyed the meal I had. It was a shredded beef chimichanga and the beef tasted like beef. It tasted a little dry but that was due to my lack of saliva and not the food. I also had a drink, a Margarita and I could taste it, at least the lime in it.
This is s huge step forward for me, a meal I actually enjoyed and the ability to drink alcohol!
Tonight it's curry! Not especially spicy but another step in the right direction.
Happi(er) days!
Tuesday, November 10, 2009
Dryness
When I met the oncologist before my radiotherapy started he told me about one of the side effects, the dryness and lack of saliva. He told me that as I would only have treatment on one side of my neck the saliva gland on that side would be destroyed, however the gland on the other side should be spared. He said that the surviving gland would 'ramp up' and start to supply about 90% of the saliva I used to get and that I probably wouldn't notice the difference.
At the moment that's partially bourne out. I have saliva, so I'm not totally dry. However I am a great deal drier than I used to be. I said in a previous post that I keep water nearby all the time. Night time seems to be the worse, I wake about 3 or 4 times a night to drink water, and oddly enough this seems to be getting worse at the moment.
I'm hoping that my surviving gland hasn't yet fully kicked in and that as it does I will lose the dryness. This effects my eating, talking (my voice sounds really thick at times), sleeping and just general day-to-day stuff as I need to be sure to keep a drink handy.
I have a follow-up next week (17th November) so I'll know more then. Hopefully he'll tell me that the other gland takes a while to recover, hopefully!
At the moment that's partially bourne out. I have saliva, so I'm not totally dry. However I am a great deal drier than I used to be. I said in a previous post that I keep water nearby all the time. Night time seems to be the worse, I wake about 3 or 4 times a night to drink water, and oddly enough this seems to be getting worse at the moment.
I'm hoping that my surviving gland hasn't yet fully kicked in and that as it does I will lose the dryness. This effects my eating, talking (my voice sounds really thick at times), sleeping and just general day-to-day stuff as I need to be sure to keep a drink handy.
I have a follow-up next week (17th November) so I'll know more then. Hopefully he'll tell me that the other gland takes a while to recover, hopefully!
Friday, November 06, 2009
What the f**k happened there?
As you may know I was diagnosed with Tonsil cancer earlier this year, this is my story so far!
On July 3rd I went to my local hospital's ENT department for an appointment about a swollen gland on my neck. The registrar had a look in my throat and took some cells from the gland to test. He sent me off and told me to come back in an hour. Soon as I walked back in the room I knew it was serious, the ENT nurse looked at me with a very concerned face and said "Oh! You're Mr. Jones" - I can remember thinking, "Don't play poker".
The registrar told me what he thought was going on, that is was likely to be tonsil cancer (I had a squamous cell carcinoma), and that the lump on my neck was a secondary tumor. I would need more tests and then several operations and probably radiotherapy to remove the tumors. At this point I was fine with the diagnosis, if you know me I'm Mr Optimistic so I "knew" I would beat this. Although looking back I think I must have been in shock, I was a little too nonchalant about the whole thing. I knew the worst part would be telling people and I wasn't wrong. Teresa (my wife) immediately burst into tears - other friends were stunned (I think it's fair to say), me, I went off to play golf. Like I said, shock!
I went into hospital on the Monday 13th July for an operation to remove my tonsil and to biopsy various areas of my throat. Before I had the op the surgeon managed to get me in for an MRI (which originally was booked for the following Saturday).
After the op I spoke to the surgeon who told me firstly that the MRI scan was clear (which I took as good news), that it looked as if they found something in the tonsil and that they also biopsied the back of the tongue. They do the tongue apparently as this is one other place the cancer may arise (if not in the tonsil).
I was sent home on the Tuesday and spent the rest of the week resting. I had a sore throat and very bad earache (apparently the nerve runs from the throat into the ear and you get sympathetic pains!). I also picked up a nasty throat infection the following weekend so the tonsil didn't heal for almost two weeks!
On Friday July 17th I went to the hospital met the consultant. He laid out the treatment that I might have which was 'interesting'!
He said that it looked like the tonsil was the primary tumor and that the swollen gland on my neck was a secondary tumor. It appears from the MRI that this is the only other tumor. As I'm young, fit and healthy (his words) he's going to be as aggressive as possible which means he wants to operate to remove that swollen gland After that he thought I'd need six weeks radiotherapy to clean up any residual cancer cells lurking in the throat. This would cause two problems one short term and one on-going. The short term problem would be that towards the end of the radiotherapy I would not be able to eat, to mitigate this they would have to insert a 'PEG', this is a tube that would let me feed directly into the stomach). The longer term issue would be that the radiotherapy would destroy my saliva glands so I would probably suffer from a continual dry throat. As you can imagine learning of the side-effects was a bit of a shock. However the ENT team then set up an appointment for me to meet the oncology consultant.
On Tuesday 21st July I saw the oncology consultant Dr Shepard (and his sidekick Dr Gray, and if you've ever seen Gray's Anatomy you'll know why that's funny) on August 19th (a Wednesday) and he was much more encouraging. It appears that the cancer is only in the right side of my head and hasn't spread to the left, again I think this was based on the MRI. To confirm this, when they remove the neck gland they'll biopsy other glands in the region to see if there are any other small tumors lurking. If they find that the tumor is only in that one gland and that the cancer hasn't spread then they'll work on the assumption that it hasn't spread across my neck. If that is true then I'll only need radio therapy on the one side which will only be for 4 weeks (if only I knew then what I knew now I would never have said 'only'!). Which means that I'll still have one saliva gland (and probably won't miss the other one).
I went in for the operation on August 5th. Before hand I was warned of all sorts of disasters that might happen, such as having to have various nerves cut, but luckily none of that came about. The consultant described the operation as successful which I think means they didn't have to hack away at me for too long :). They removed the lymph nodes on the right side of my neck (basically under the throat on the right), they've all been taken away to be biopsied. I have a cracking scar which is now healing, eventually it will more or less disappear altogether. I'm still very stiff and tender on the right side of my neck but, again, that's getting better. The operation took longer than expected. After I came around in recovery the first time I was lying there feeling my neck swelling and finding it harder and harder to swallow, this was not pleasant (as you can imagine). The recovery nurse was obviously getting concerned and eventually release the pressure, I have no idea how but I'm hoping there was some drama and she had to cut the would open :)
Eventually I was taken back into theater where they found a couple of blood vessels that hadn't been tied off properly. Finally they closed my up and sent me back to the ward. By this time Teresa was going frantic as were all the folks waiting for news.
When I finally came around I discovered that the right side of my head and my shoulder were completely numb. It appears that the lymph nodes can attach themselves to nerves and they have to be removed. I think there's been nerve trauma, hence the numbness. I'm told the feeling will come back after 3 months.
The following Tuesday (11th), I had a PEG fitted, this is essentially a feeding tube into the stomach. They fit this so that if, during radiotherapy, I can't swallow (my throat will get very sore) I will still be able to feed. That was fun (not!), it was done with the aid of an endoscope,
i.e. a camera down the throat! This was the worst of all the operations.
On 18th August I had a radiotherapy mask fitted. The mask was to hold my head in place while I have the radiotherapy, the beams have to be aimed exactly.
On the 20th I met the Oncologist again to get the results of the operations and biopsies. It was all good news.
The swollen lymph node was the only node that contained cancer cells and the cancer was 'fully contained' within the node (I assume that the oncologist means by this that there were no cells on the outside of the lymph or in the surrounding tissue). He did say that there was a tiny (< 5% chance) that the cancer could be hiding somewhere else, but as they've found the primary tumor as well (the tonsil) he's confident this isn't the case. Given that I will only need radio therapy on one side. He also said (and I didn't think I'd hear this) that with the surgery and the treatment I would effectively be 'cured'! So very good news all round.
The amazing thing to me about this whole thing is the timescale. 7 weeks ago I was a healthy young(ish) :) man, was diagnosed with a tumor and in another 4 weeks from now (so less than three months elapsed) I'll have been through 4 operations, 4 weeks of radiotherapy and some of the best care in the world to be 'cured'. It's been quite a ride!
And so began some of the worst weeks of my life!
I started my radiotherapy on Monday 24th August. I had to go every day and the treatment lasts about 10 minutes although I was often in the hospital longer than that, typically the rooms are running late so I was often there 30 to 40 minutes. At first this wasn't a burden, I sat in the waiting area and worked. However the effects of radio therapy are cumulative, so while I was fine the first week, by the beginning of the second week I was starting to feel very tired. By the end of the second week I was exhausted and could hardly taste anything. I was struggling to swallow because my throat was starting to close up. By the beginning of the third week I couldn't swallow at all (literally) and could only 'eat' through my peg, although at that point I didn't feel like eating anything. By the start of the third week my mouth started filling with mucous, this is produce by the cells as they break down in the throat, this had nowhere to go (like I said I couldn't swallow) so I spent the next four weeks with a bowl and a box of tissues as my constant companion - this was not pleasant - day and night. By the middle of the final week I'm in pieces, I can't eat, I can't swallow, I can hardly get out of bed. I spend most of the Wednesday evening in the hospital while they run various tests to see if they need to keep me in overnight. By the time I finish treatment on the Friday I'm totally spent and as I'm leaving the hospital I burst into tears in relief that my treatment was done.
The two weeks after my radiotherapy finished weren't a great deal better. I still couldn't swallow, still had lots of mucous and was still exhausted. I had some good days where I could get out, but as soon as I did that I'd be knackered again.
During the weeks where my mouth was full of mucous I'd also spend time throwing up, not that I had a lot to throw up so it was actually about 5 minutes a day retching, not pleasant - all in all a pretty shit time!
I also lost a lot of weight in that period, about 25lbs (11 kilos).
At the start of the 3rd week AT (After Treatment) I started to swallow, just the mucous and saliva, but it was a start. Towards the end of the that week we (my family) went to see Michael McIntyre in concert (he's a UK comedian), and at the show I managed to drink a Coke. It didn't taste a lot like Coke but it was cold and fizzy and just what I needed. That was the first drink I'd had in about 5 weeks and it was so good.
The following day (Friday 9th October) I had my first follow-up, this was with the McMillan ENT Nurse. Firstly she was really pleased at how well I looked (believe me, I looked like shit so God knows what she was expecting), then when I told her I was actually drinking she was amazed. She said that normally it would take about six weeks before I could drink, so I'm way ahead of the curve as far as recovery goes.
I asked her about my treatment and she told me that the treatment had been very aggressive and that I'd been given a very high dose of radiation. That goes a long way to explaining why I was feeling so bad physically and I guess why it dragged me down so much.
She also said that they knew it would be very, very tough for me during treatment, which I guess explains why she was surprised at how well I looked!
On the way out from the nurse I saw my ENT consultant and went to say "hello", we have a full follow-up in November. First thing he asked me was "When do you start radiotherapy?" when I told him I'd finished he was amazed at that and (again) at how well I looked. I think they were expecting some gray ghost to be walked in!
On the down side, the nurse told me that I probably wouldn't be able to start eating until November or December (but I'm hoping that as I can drink now then those timescales will shorten). The other news was that I probably wouldn't get my taste buds back in order for another 5 to 6 months, so sometime next year.
I actually started to eat on October 14th (about 6 weeks ahead of schedule) half a mini Mars bar and a tiny bit of Salmon. I almost cried, in fact I did shed a tear or two. It feels so fantastic to be eating again and starting to feel almost human. I also had a single weetabix the following morning for breakfast. Doesn't sound like the most exciting thing in the world but I'm so excited! Oh, and I drank my first cup of tea in weeks that morning, that felt so good!
Now it's November 6th and I'm eating three meals a day and drinking normally. I have no appetite and so am still losing weight, 2 or 3 lbs over the last couple of weeks which isn't too clever!. I can taste some things (eggs, sausage, bacon, sauces) but not others. I seem to have lost all my sweet taste receptors and alcohol tastes really nasty! Hopefully that will recover. I also find that after a few mouthfuls my taste buds seem to get overwhelmed and I can't taste anything, again that should get better. All in all as far as my taste goes it's better than I though it might be.
I'm starting to get feeling back in my shoulder which is a bugger because it now really hurts, although my ear is still numb. My scar feels really tight I feel like somebody's attached a really strong elastic band to my neck and it's constantly pulling on me.
My mouth is dry, not completely dry but drier than it should be. I always have a bottle of water close to hand, in the car, on my desk, next to the bed... Again I'm hoping that this will get better.
Today I'm in a 'Why me?' sort of mood, slightly bitter about everything that's happend over the last three months. Having said that overall my attitude has been 'Could be worse'
This sounds trite but there's always somebody worse off than you and I'm well aware of that.
I have a meeting with my consultants on November 17th so will learn more then, although I've got a feeling that it will be a 'Hmmm, you seem OK, come back in 3 months' kind of meeting!
On July 3rd I went to my local hospital's ENT department for an appointment about a swollen gland on my neck. The registrar had a look in my throat and took some cells from the gland to test. He sent me off and told me to come back in an hour. Soon as I walked back in the room I knew it was serious, the ENT nurse looked at me with a very concerned face and said "Oh! You're Mr. Jones" - I can remember thinking, "Don't play poker".
The registrar told me what he thought was going on, that is was likely to be tonsil cancer (I had a squamous cell carcinoma), and that the lump on my neck was a secondary tumor. I would need more tests and then several operations and probably radiotherapy to remove the tumors. At this point I was fine with the diagnosis, if you know me I'm Mr Optimistic so I "knew" I would beat this. Although looking back I think I must have been in shock, I was a little too nonchalant about the whole thing. I knew the worst part would be telling people and I wasn't wrong. Teresa (my wife) immediately burst into tears - other friends were stunned (I think it's fair to say), me, I went off to play golf. Like I said, shock!
I went into hospital on the Monday 13th July for an operation to remove my tonsil and to biopsy various areas of my throat. Before I had the op the surgeon managed to get me in for an MRI (which originally was booked for the following Saturday).
After the op I spoke to the surgeon who told me firstly that the MRI scan was clear (which I took as good news), that it looked as if they found something in the tonsil and that they also biopsied the back of the tongue. They do the tongue apparently as this is one other place the cancer may arise (if not in the tonsil).
I was sent home on the Tuesday and spent the rest of the week resting. I had a sore throat and very bad earache (apparently the nerve runs from the throat into the ear and you get sympathetic pains!). I also picked up a nasty throat infection the following weekend so the tonsil didn't heal for almost two weeks!
On Friday July 17th I went to the hospital met the consultant. He laid out the treatment that I might have which was 'interesting'!
He said that it looked like the tonsil was the primary tumor and that the swollen gland on my neck was a secondary tumor. It appears from the MRI that this is the only other tumor. As I'm young, fit and healthy (his words) he's going to be as aggressive as possible which means he wants to operate to remove that swollen gland After that he thought I'd need six weeks radiotherapy to clean up any residual cancer cells lurking in the throat. This would cause two problems one short term and one on-going. The short term problem would be that towards the end of the radiotherapy I would not be able to eat, to mitigate this they would have to insert a 'PEG', this is a tube that would let me feed directly into the stomach). The longer term issue would be that the radiotherapy would destroy my saliva glands so I would probably suffer from a continual dry throat. As you can imagine learning of the side-effects was a bit of a shock. However the ENT team then set up an appointment for me to meet the oncology consultant.
On Tuesday 21st July I saw the oncology consultant Dr Shepard (and his sidekick Dr Gray, and if you've ever seen Gray's Anatomy you'll know why that's funny) on August 19th (a Wednesday) and he was much more encouraging. It appears that the cancer is only in the right side of my head and hasn't spread to the left, again I think this was based on the MRI. To confirm this, when they remove the neck gland they'll biopsy other glands in the region to see if there are any other small tumors lurking. If they find that the tumor is only in that one gland and that the cancer hasn't spread then they'll work on the assumption that it hasn't spread across my neck. If that is true then I'll only need radio therapy on the one side which will only be for 4 weeks (if only I knew then what I knew now I would never have said 'only'!). Which means that I'll still have one saliva gland (and probably won't miss the other one).
I went in for the operation on August 5th. Before hand I was warned of all sorts of disasters that might happen, such as having to have various nerves cut, but luckily none of that came about. The consultant described the operation as successful which I think means they didn't have to hack away at me for too long :). They removed the lymph nodes on the right side of my neck (basically under the throat on the right), they've all been taken away to be biopsied. I have a cracking scar which is now healing, eventually it will more or less disappear altogether. I'm still very stiff and tender on the right side of my neck but, again, that's getting better. The operation took longer than expected. After I came around in recovery the first time I was lying there feeling my neck swelling and finding it harder and harder to swallow, this was not pleasant (as you can imagine). The recovery nurse was obviously getting concerned and eventually release the pressure, I have no idea how but I'm hoping there was some drama and she had to cut the would open :)
Eventually I was taken back into theater where they found a couple of blood vessels that hadn't been tied off properly. Finally they closed my up and sent me back to the ward. By this time Teresa was going frantic as were all the folks waiting for news.
When I finally came around I discovered that the right side of my head and my shoulder were completely numb. It appears that the lymph nodes can attach themselves to nerves and they have to be removed. I think there's been nerve trauma, hence the numbness. I'm told the feeling will come back after 3 months.
The following Tuesday (11th), I had a PEG fitted, this is essentially a feeding tube into the stomach. They fit this so that if, during radiotherapy, I can't swallow (my throat will get very sore) I will still be able to feed. That was fun (not!), it was done with the aid of an endoscope,
i.e. a camera down the throat! This was the worst of all the operations.
On 18th August I had a radiotherapy mask fitted. The mask was to hold my head in place while I have the radiotherapy, the beams have to be aimed exactly.
On the 20th I met the Oncologist again to get the results of the operations and biopsies. It was all good news.
The swollen lymph node was the only node that contained cancer cells and the cancer was 'fully contained' within the node (I assume that the oncologist means by this that there were no cells on the outside of the lymph or in the surrounding tissue). He did say that there was a tiny (< 5% chance) that the cancer could be hiding somewhere else, but as they've found the primary tumor as well (the tonsil) he's confident this isn't the case. Given that I will only need radio therapy on one side. He also said (and I didn't think I'd hear this) that with the surgery and the treatment I would effectively be 'cured'! So very good news all round.
The amazing thing to me about this whole thing is the timescale. 7 weeks ago I was a healthy young(ish) :) man, was diagnosed with a tumor and in another 4 weeks from now (so less than three months elapsed) I'll have been through 4 operations, 4 weeks of radiotherapy and some of the best care in the world to be 'cured'. It's been quite a ride!
And so began some of the worst weeks of my life!
I started my radiotherapy on Monday 24th August. I had to go every day and the treatment lasts about 10 minutes although I was often in the hospital longer than that, typically the rooms are running late so I was often there 30 to 40 minutes. At first this wasn't a burden, I sat in the waiting area and worked. However the effects of radio therapy are cumulative, so while I was fine the first week, by the beginning of the second week I was starting to feel very tired. By the end of the second week I was exhausted and could hardly taste anything. I was struggling to swallow because my throat was starting to close up. By the beginning of the third week I couldn't swallow at all (literally) and could only 'eat' through my peg, although at that point I didn't feel like eating anything. By the start of the third week my mouth started filling with mucous, this is produce by the cells as they break down in the throat, this had nowhere to go (like I said I couldn't swallow) so I spent the next four weeks with a bowl and a box of tissues as my constant companion - this was not pleasant - day and night. By the middle of the final week I'm in pieces, I can't eat, I can't swallow, I can hardly get out of bed. I spend most of the Wednesday evening in the hospital while they run various tests to see if they need to keep me in overnight. By the time I finish treatment on the Friday I'm totally spent and as I'm leaving the hospital I burst into tears in relief that my treatment was done.
The two weeks after my radiotherapy finished weren't a great deal better. I still couldn't swallow, still had lots of mucous and was still exhausted. I had some good days where I could get out, but as soon as I did that I'd be knackered again.
During the weeks where my mouth was full of mucous I'd also spend time throwing up, not that I had a lot to throw up so it was actually about 5 minutes a day retching, not pleasant - all in all a pretty shit time!
I also lost a lot of weight in that period, about 25lbs (11 kilos).
At the start of the 3rd week AT (After Treatment) I started to swallow, just the mucous and saliva, but it was a start. Towards the end of the that week we (my family) went to see Michael McIntyre in concert (he's a UK comedian), and at the show I managed to drink a Coke. It didn't taste a lot like Coke but it was cold and fizzy and just what I needed. That was the first drink I'd had in about 5 weeks and it was so good.
The following day (Friday 9th October) I had my first follow-up, this was with the McMillan ENT Nurse. Firstly she was really pleased at how well I looked (believe me, I looked like shit so God knows what she was expecting), then when I told her I was actually drinking she was amazed. She said that normally it would take about six weeks before I could drink, so I'm way ahead of the curve as far as recovery goes.
I asked her about my treatment and she told me that the treatment had been very aggressive and that I'd been given a very high dose of radiation. That goes a long way to explaining why I was feeling so bad physically and I guess why it dragged me down so much.
She also said that they knew it would be very, very tough for me during treatment, which I guess explains why she was surprised at how well I looked!
On the way out from the nurse I saw my ENT consultant and went to say "hello", we have a full follow-up in November. First thing he asked me was "When do you start radiotherapy?" when I told him I'd finished he was amazed at that and (again) at how well I looked. I think they were expecting some gray ghost to be walked in!
On the down side, the nurse told me that I probably wouldn't be able to start eating until November or December (but I'm hoping that as I can drink now then those timescales will shorten). The other news was that I probably wouldn't get my taste buds back in order for another 5 to 6 months, so sometime next year.
I actually started to eat on October 14th (about 6 weeks ahead of schedule) half a mini Mars bar and a tiny bit of Salmon. I almost cried, in fact I did shed a tear or two. It feels so fantastic to be eating again and starting to feel almost human. I also had a single weetabix the following morning for breakfast. Doesn't sound like the most exciting thing in the world but I'm so excited! Oh, and I drank my first cup of tea in weeks that morning, that felt so good!
Now it's November 6th and I'm eating three meals a day and drinking normally. I have no appetite and so am still losing weight, 2 or 3 lbs over the last couple of weeks which isn't too clever!. I can taste some things (eggs, sausage, bacon, sauces) but not others. I seem to have lost all my sweet taste receptors and alcohol tastes really nasty! Hopefully that will recover. I also find that after a few mouthfuls my taste buds seem to get overwhelmed and I can't taste anything, again that should get better. All in all as far as my taste goes it's better than I though it might be.
I'm starting to get feeling back in my shoulder which is a bugger because it now really hurts, although my ear is still numb. My scar feels really tight I feel like somebody's attached a really strong elastic band to my neck and it's constantly pulling on me.
My mouth is dry, not completely dry but drier than it should be. I always have a bottle of water close to hand, in the car, on my desk, next to the bed... Again I'm hoping that this will get better.
Today I'm in a 'Why me?' sort of mood, slightly bitter about everything that's happend over the last three months. Having said that overall my attitude has been 'Could be worse'
This sounds trite but there's always somebody worse off than you and I'm well aware of that.
I have a meeting with my consultants on November 17th so will learn more then, although I've got a feeling that it will be a 'Hmmm, you seem OK, come back in 3 months' kind of meeting!
Subscribe to:
Posts (Atom)