My last post reached somewhat of a momentous milestone - it was number 100.
No matter which way you look at it, I have a lot of things to be thankful for - not least being actually still here able to write this blog.
So, how am I going to start the next century?, well it is unfortunately going to be somewhat of a gripe. I've praised the public health system throughout my battle and, despite what I'm about to say, the treatment and compassion I've received has been faultless.
My issue/problem revolves around my hearing. Given the results of my two hearing tests clearly show a significant loss (which can only be contributed to my treatment given the relatively short period of time between them), I'm struggling to get any traction with regards a resolution.
I'm finding it increasingly frustrating to have to concentrate as hard as I need to in order to understand what people are saying to me in certain environments. It is worse in some situations than others and is normally more of an issue when the person is speaking quietly and/or not talking directly at me.
I've rung the audiology clinic at the hospital and asked what is going on and they said they'd retrieve my file, take a look at it and give me a call to discuss. That was a couple of months ago now. At my last appointment, I left under the impression my file was being referred back to medical oncology (it was their treatment that has this side effect) and expected some delay given they had effectively discharged me. I now feel like I've fallen through one of those oft talked about holes in the system.
There is no doubt a fine line that can be crossed if you continue to hound people, but this is by far the biggest "disability" to come out of my treatment. I'm learning to find workarounds for my eating issues, and in reality don't go hungry, so that is more of a minor inconvenience than struggling to hear.
I know I'm lucky to be able to hear as well as I can - there are a lot of people who would no doubt happily cut off a limb to be able to hear as well as me - and perhaps given how well I've recovered in other areas, I should consider the bigger picture and just be thankful full-stop.
The problem is, I've come out the other side from my battle with the cancer, but it is like there is this secondary battle over my hearing that I feel can be won, but nobody is putting their hand up to give me the necessary weapons.
I suppose one option is to wait for my gang of 7 appointment and see if they can rattle some cages. That is only a few weeks away and given how long I've waited, I can no doubt survive until then. But, can I resist the temptation to ring audiology again before then though, now that I've "purged" myself (or is that wound myself up) via this posting?
Bugger, another dilemma to think about.
Sunday, March 27, 2011
Tuesday, March 22, 2011
Oops - Body Reasserts Control
OK, so of late I've been feeling pretty good and starting to behave like days of old. I've also taken it a step further and started to partake in some former favourite food treats as well.
Latest treat was to sample the joy that is marshmallow Easter eggs. While my ability to eat chocolate is now largely governed by the saliva condition (and tends to mean minimal quantities), last night I managed, over a couple of hours, to eat 2 of the aforementioned eggs.
Well, the joy ended up being relatively short-lived as when I went to bed, I started to feel sick. It is the first time since I've resumed eating that I've felt like that, and it was not pleasant and not something I want to experience again any time soon.
With the body clearly reasserting its control, the night was one of broken sleep and a slightly elevated sleeping position, along with some out of the norm trips to the loo. Today I've felt pretty much washed out, although the stomach seems to have settled back nicely.
So, lesson learnt, and it is one my Mum would have told me probably many times as I was growing up - too much of a good thing is bad for you. Last night proved that to me.
On the upside, this little wake-up call does mean that Easter will last longer for me this year as the chocolate will be effectively rationed.
And of course, I've been reminded that things aren't what they were and I still need to take things a little more cautiously than I may think I do.
Now, where are the jet planes?
Latest treat was to sample the joy that is marshmallow Easter eggs. While my ability to eat chocolate is now largely governed by the saliva condition (and tends to mean minimal quantities), last night I managed, over a couple of hours, to eat 2 of the aforementioned eggs.
Well, the joy ended up being relatively short-lived as when I went to bed, I started to feel sick. It is the first time since I've resumed eating that I've felt like that, and it was not pleasant and not something I want to experience again any time soon.
With the body clearly reasserting its control, the night was one of broken sleep and a slightly elevated sleeping position, along with some out of the norm trips to the loo. Today I've felt pretty much washed out, although the stomach seems to have settled back nicely.
So, lesson learnt, and it is one my Mum would have told me probably many times as I was growing up - too much of a good thing is bad for you. Last night proved that to me.
On the upside, this little wake-up call does mean that Easter will last longer for me this year as the chocolate will be effectively rationed.
And of course, I've been reminded that things aren't what they were and I still need to take things a little more cautiously than I may think I do.
Now, where are the jet planes?
Monday, March 21, 2011
The Toad Still Rocks
Some good news, Toad In The Hole is still a viable meal alternative. Sure, it requires some contribution from gravy, but that is an acceptable situation.
Interestingly, some other foods are becoming less effort as well over time. For example, potatoes of the non-mashed variety (roasted, fried chunks) are certainly less of a challenge than they were a month or so ago. The processed potato (chips, wedges) are still very much hit and miss. Seems if they are "natural", they offer less resistance.
Had a full on week at work last week, and it took its toll over the weekend when I finally "stopped". The last couple of weekends have seen me returning to "normal" type activities - sorting out the shed, lawns, washing car, housework, etc. This weekend, I did some of those things on Saturday, but crashed on Sunday. I just had no energy and "wasted" a reasonable day weather wise.
Despite saying I'm going to pace myself, it has been really hard to do that lately with the workload. I still see it as a positive thing that I acknowledge the issue and I'm not letting it go, but just have to keep chipping away at it to get it more under my control again.
I'm walking with Ruth S and her new puppy (Jethro) a couple of times a week now as well, and normally an hour at a time, so that is helping the rebuilding of energy levels.
All in all, things are continuing to improve.
Interestingly, some other foods are becoming less effort as well over time. For example, potatoes of the non-mashed variety (roasted, fried chunks) are certainly less of a challenge than they were a month or so ago. The processed potato (chips, wedges) are still very much hit and miss. Seems if they are "natural", they offer less resistance.
Had a full on week at work last week, and it took its toll over the weekend when I finally "stopped". The last couple of weekends have seen me returning to "normal" type activities - sorting out the shed, lawns, washing car, housework, etc. This weekend, I did some of those things on Saturday, but crashed on Sunday. I just had no energy and "wasted" a reasonable day weather wise.
Despite saying I'm going to pace myself, it has been really hard to do that lately with the workload. I still see it as a positive thing that I acknowledge the issue and I'm not letting it go, but just have to keep chipping away at it to get it more under my control again.
I'm walking with Ruth S and her new puppy (Jethro) a couple of times a week now as well, and normally an hour at a time, so that is helping the rebuilding of energy levels.
All in all, things are continuing to improve.
Tuesday, March 8, 2011
The Burger Debate
Well, I've been and done it. I've now sat down with a KFC burger combo, a Junior Whopper combo from Burger King and a Quarter Pounder combo from the golden arches.
I've already expressed my disappointment with the KFC combo and now realise that it is as much to do with the hit and miss moistness of the chicken as much as it is about the lack-of- saliva induced bread issues. I've experienced the same moistness issues with a 2 piece quarter pack meal - one was absolutely edible because the chicken was moist (a fresh batch or just good luck?), while the other (from the same store) was an absolute effort because the chicken was dry.
So, next off the rank was the BK offering. And, I'd have to say I was pleasantly surprised. My only change to the standard menu order was no onion, no pickle and I duly sat down with some anticipation. The chips were so so - not overly hot - and given the need to try the burger at it's hottest, by the time I got to the remaining chips, they were pretty much cold and not overly pleasant. The burger was nice and moist and the salad made things a little easier to handle, helping to keep things moist. I ate it all bar about a finger width of bun. Overall didn't require too much effort and even at the end the thing was still warm enough to be pleasant.
After that experience, I was looking forward to the McD experience. You'd think I would have known better, but it's been a year since my last sampling, so I thought they might have improved. They haven't. I ordered with the same exclusions and the chips were definitely superior to BK - they were hotter and crispier, so easier on my throat. The burger was however an unmitigated disaster. From the first bite it was an effort - a gluggy mess. What an effort to get through every single mouthful. After a couple of bites, I removed one of the pieces of "cheese" (given the sorry state of the melted mess, I am perhaps wrongly assuming it was cheese) to see if that made a difference. It did, making it easier to realise the meat pattie was pretty much textureless and the major cause of the problem. The other noticeable thing was the lack of any lettuce, tomato etc which had been an added bonus with the BK burger. Whereas the BK burger was almost totally consumed, I gave up with only 1/2 the quarter pounder eaten.
Now, it would be fair to say this is probably a good thing - too much fast food is bad for you, and I'm not going to deny that. I'm guilty in my "past life" of eating too much junk food and I've already said I have no intention of falling back into these sorts of bad ways on a routine basis, but I needed to establish what options are available to me - consider it a food science experiment if you must.
So, my totally unscientific experiment has a clear winner - for me, in my circumstances, the undisputed champion is Burger King. It was easy to "process" and I came away feeling quite satisfied. The inconsistency of the chicken at KFC rules it out as being too risky / not worth the effort, but I'd still give it second place. The McD offering was just plain unpalatable and I wouldn't even consider it as an option again, and I was still hungry after eating it!
I've already expressed my disappointment with the KFC combo and now realise that it is as much to do with the hit and miss moistness of the chicken as much as it is about the lack-of- saliva induced bread issues. I've experienced the same moistness issues with a 2 piece quarter pack meal - one was absolutely edible because the chicken was moist (a fresh batch or just good luck?), while the other (from the same store) was an absolute effort because the chicken was dry.
So, next off the rank was the BK offering. And, I'd have to say I was pleasantly surprised. My only change to the standard menu order was no onion, no pickle and I duly sat down with some anticipation. The chips were so so - not overly hot - and given the need to try the burger at it's hottest, by the time I got to the remaining chips, they were pretty much cold and not overly pleasant. The burger was nice and moist and the salad made things a little easier to handle, helping to keep things moist. I ate it all bar about a finger width of bun. Overall didn't require too much effort and even at the end the thing was still warm enough to be pleasant.
After that experience, I was looking forward to the McD experience. You'd think I would have known better, but it's been a year since my last sampling, so I thought they might have improved. They haven't. I ordered with the same exclusions and the chips were definitely superior to BK - they were hotter and crispier, so easier on my throat. The burger was however an unmitigated disaster. From the first bite it was an effort - a gluggy mess. What an effort to get through every single mouthful. After a couple of bites, I removed one of the pieces of "cheese" (given the sorry state of the melted mess, I am perhaps wrongly assuming it was cheese) to see if that made a difference. It did, making it easier to realise the meat pattie was pretty much textureless and the major cause of the problem. The other noticeable thing was the lack of any lettuce, tomato etc which had been an added bonus with the BK burger. Whereas the BK burger was almost totally consumed, I gave up with only 1/2 the quarter pounder eaten.
Now, it would be fair to say this is probably a good thing - too much fast food is bad for you, and I'm not going to deny that. I'm guilty in my "past life" of eating too much junk food and I've already said I have no intention of falling back into these sorts of bad ways on a routine basis, but I needed to establish what options are available to me - consider it a food science experiment if you must.
So, my totally unscientific experiment has a clear winner - for me, in my circumstances, the undisputed champion is Burger King. It was easy to "process" and I came away feeling quite satisfied. The inconsistency of the chicken at KFC rules it out as being too risky / not worth the effort, but I'd still give it second place. The McD offering was just plain unpalatable and I wouldn't even consider it as an option again, and I was still hungry after eating it!
Saturday, March 5, 2011
Some Things Are Just Frustrating
I'll get this off my chest now. This saliva thing continues to throw out curve balls, and the latest was one I would never have thought about in years.
I had reason to post something at work the other day, and the envelope was of the non-self seal variety. Have you ever tried to lick the sealing strip when you don't have saliva? Well I started the task oblivious to the pending problem and quickly got to the "what the" stage. OK, so what next? Hmm. trying to tip drops of water out of the water bottle to substitute for saliva wasn't exactly a) easy or b) successful. For the record, water doesn't work as well as saliva. Thank goodness for cellotape. Note to self, only buy self-seal envelopes for home.
And, I'm going to dispel an urban myth today as well. Pantyhose are not an effective temporary fix for a broken fan belt. On the way home on Thursday night, the fan belt in the car sucked the kumara and caused some serious overheating (unknown at this time if there is any long term damage to the motor - fingers crossed answer is no). Service stations these days don't stock such life saving items, so the pantyhose idea sprung to mind. Well, that was a waste of money. Seemed to work for maybe 30 seconds before it all turned to custard. Another note to self - when fan belt on 31 year old car starts looking a bit dodgy, replace the sucker.
So, what about the recovery, etc? Well, by in large, things are going really well. I'm told I'm looking pretty good - my colour is back and I'm not looking so gaunt apparently. I'm certainly feeling a lot better, but still struggle with energy levels, etc.
Case in point, the boys and I went out last Friday night (25th Feb) and started by going to the driving range to hit a bucket of 50 balls each. Obviously, this sort of activity didn't feature much during last year, but I was surprised how little strength I had in my arms. I know technique is more important that brute strength, but my golf abilities are purely social, so technique doesn't really exist. So, sore arms were the order of the day on the weekend.
On Sunday, Sharon & Phil came up to remove the remainder of the cursed bamboo and I'd got up early to finally sort out the garden shed. By the end of the day, with both tasks duly tackled, I was knackered. Yet, in a perverse sort of way, I was really happy about it. At last I was getting back into doing things, and despite the discomfort, I know I have to keep pushing the boundaries to get my energy/stamina levels back.
Work has been really quite hectic this week and, again, by pushing myself a little too hard, I "suffer" when I get home by falling asleep in the chair early in the evening. Despite all my banter about pacing myself, etc regarding work, the reality is I'm buzzing with the current challenges and forget myself at times. It is so great to be doing this stuff again that I'm somewhat torn between the buzz and looking after myself.
I know the latter has to win through in the end and this week's challenge will be to start balancing/controlling that workload a bit better.
Eating wise, things are still ticking along nicely. Got back into adding gravy to some of the meals this week and that certainly meant things like chips became more manageable. Still don't see me having gravy with fish and chips though. Had this random thought during the week as well regarding, of all things, toad in the hole. Given it is basically sausage in a dough/yorkshire pudding "base", and given my inability to eat buns, etc (which have a similar texture), does this spell the end of this tasty treat from my food choices? Moira has agreed to knock one up, so time will tell.
Also going to try a hamburger at some stage over the weekend, so watch this space on that one.
Have my next appointment with the gang of seven now confirmed - Wed 13th April - so not long to go. That is only a couple of weeks before the anniversary of the initial confirmed diagnosis, and I see it as another important step on my path forward.
I had reason to post something at work the other day, and the envelope was of the non-self seal variety. Have you ever tried to lick the sealing strip when you don't have saliva? Well I started the task oblivious to the pending problem and quickly got to the "what the" stage. OK, so what next? Hmm. trying to tip drops of water out of the water bottle to substitute for saliva wasn't exactly a) easy or b) successful. For the record, water doesn't work as well as saliva. Thank goodness for cellotape. Note to self, only buy self-seal envelopes for home.
And, I'm going to dispel an urban myth today as well. Pantyhose are not an effective temporary fix for a broken fan belt. On the way home on Thursday night, the fan belt in the car sucked the kumara and caused some serious overheating (unknown at this time if there is any long term damage to the motor - fingers crossed answer is no). Service stations these days don't stock such life saving items, so the pantyhose idea sprung to mind. Well, that was a waste of money. Seemed to work for maybe 30 seconds before it all turned to custard. Another note to self - when fan belt on 31 year old car starts looking a bit dodgy, replace the sucker.
So, what about the recovery, etc? Well, by in large, things are going really well. I'm told I'm looking pretty good - my colour is back and I'm not looking so gaunt apparently. I'm certainly feeling a lot better, but still struggle with energy levels, etc.
Case in point, the boys and I went out last Friday night (25th Feb) and started by going to the driving range to hit a bucket of 50 balls each. Obviously, this sort of activity didn't feature much during last year, but I was surprised how little strength I had in my arms. I know technique is more important that brute strength, but my golf abilities are purely social, so technique doesn't really exist. So, sore arms were the order of the day on the weekend.
On Sunday, Sharon & Phil came up to remove the remainder of the cursed bamboo and I'd got up early to finally sort out the garden shed. By the end of the day, with both tasks duly tackled, I was knackered. Yet, in a perverse sort of way, I was really happy about it. At last I was getting back into doing things, and despite the discomfort, I know I have to keep pushing the boundaries to get my energy/stamina levels back.
Work has been really quite hectic this week and, again, by pushing myself a little too hard, I "suffer" when I get home by falling asleep in the chair early in the evening. Despite all my banter about pacing myself, etc regarding work, the reality is I'm buzzing with the current challenges and forget myself at times. It is so great to be doing this stuff again that I'm somewhat torn between the buzz and looking after myself.
I know the latter has to win through in the end and this week's challenge will be to start balancing/controlling that workload a bit better.
Eating wise, things are still ticking along nicely. Got back into adding gravy to some of the meals this week and that certainly meant things like chips became more manageable. Still don't see me having gravy with fish and chips though. Had this random thought during the week as well regarding, of all things, toad in the hole. Given it is basically sausage in a dough/yorkshire pudding "base", and given my inability to eat buns, etc (which have a similar texture), does this spell the end of this tasty treat from my food choices? Moira has agreed to knock one up, so time will tell.
Also going to try a hamburger at some stage over the weekend, so watch this space on that one.
Have my next appointment with the gang of seven now confirmed - Wed 13th April - so not long to go. That is only a couple of weeks before the anniversary of the initial confirmed diagnosis, and I see it as another important step on my path forward.
Sunday, February 20, 2011
Where Does The Time Go
Good grief, it's been nearly two weeks since my last post and it's taken me a bit of time to think about what has happened in that time. Sorry, but this blog will therefore be another biggie as I purge so to speak.
The march back to normality continues apace and my energy levels continue to improve. So as a one-liner, that's pretty good.
I've found that if I do stay at work beyond my self-imposed 4pm "curfew", while I can stay alert at work (and on the drive home), I suffer when I get home, invariably evidenced by falling asleep in the chair before 8pm. On the plus side, when I do stir again, the 'nap' doesn't impede my overnight sleep. Hopefully over the coming weeks, things will continue to improve stamina wise.
The current spell of fine weather comes with an unexpected sting in it's tail too. The heat means my throat dries out more quickly than normal, thus I need to drink more and I've found that I can't afford to go walking down town to get lunch without taking my water bottle with me. I've tried it on a couple of occasions and the gagging sensation from the dry mouth is simply very unpleasant. As with most such situations, when it gets dry and you know you don't have the water, you seem to try to swallow more and make the whole situation worse. It's a lot easier to take the bottle with me and if I don't need it, that's a bonus. But wait, there's more. Sometimes water just doesn't cut it, so I need a soft drink instead. No big issues with that, except yet again there is a balance to be struck. Just as water doesn't always work, too much soft drink sends things back the other way. The juggling act required loses it's novelty pretty quickly.
I'm also continually frustrated by the frequent toilet stops necessary as a result of the liquid intake. I'm not sure if the benefit I'd like most from some working saliva glands is the ability to eat those foods I still can't, or the ability to reduce the liquid intake.
Speaking of food, the menu options continue the now expected see-saw. I'd really love to chomp into a Burgelfuel burger, but two things hinder that. Firstly, the jaw isn't opening as far as it used too pre-treatment, so getting one of their fine creations into the mouth is slightly more than just a challenge. Secondly, the bread issue continues to haunt me. While sandwiches are back on the menu - crusts included (with some limitations regarding thickness of bread and filling), an attempt to eat a KFC burger last week was an unmitigated disaster. OK, so other burger buns might be different and I'll indeed continue to experiment, but this is looking like a long term issue. Never say never - and cutting back on such fast foods isn't a bad diet outcome anyway. Would just be nice to have the choice.
While on the subject of bread, toast in the morning (or anytime for that matter) only stretches to a single piece before the "gluginess' arrives.
So what about other foods? Kebabs - I'm up to maybe 2/3 of one, but still trying to find a consistent source where the meat is moist enough to compensate for my slow eating rate. Curry is still subject to the chef actually providing the mild sauce as ordered. When they get that right, a curry is manageable and enjoyable. Biscuits are another case of make the right choice. I'm not sure how you differentiate the different textures, but the soft biscuits can be eaten, but tend to glug quite quickly, whereas the crisper biscuits take longer to glug and aren't as much effort to eat. Sausages are back on the menu, but quantity is lower and texture remains critical. Fish and chips still pretty much a no go. The chips are so inconsistent that I don't bother now. Tend to have a sausage and potato fritters as that can be managed. Did however have a fish and chip meal at one of the bars in Wellington and the fish was lovely - nice and thick and moist. Chips were marginal though. At least I got to eat fish again though. The cuts I've been buying from the butcher (as opposed to from the supermarket) seem to be passing the test as well. Have had only a couple of "failures" with the majority being enjoyable, moist cuts. Pizza is a treat as opposed to a meal, chicken nuggets need to be battered not crumbed. Pies are basically limited to home-made bacon & egg (thanks Patty) because the pastry isn't as gluggy and the filling not supplemented with artificial fillers.
The weight seems to have settled down and I've had to buy some more jeans in a smaller size to compensate.
In closing, I'm enjoying my routine settling down and now have numerous occasions where I can actually make a choice as to what I do. For so long now, there has been little in the way of choice, but now I'm actually asserting some control over my actions and it is a wonderful feeling. I'm being more sociable and feeling more confident in myself, and it is great.
The march back to normality continues apace and my energy levels continue to improve. So as a one-liner, that's pretty good.
I've found that if I do stay at work beyond my self-imposed 4pm "curfew", while I can stay alert at work (and on the drive home), I suffer when I get home, invariably evidenced by falling asleep in the chair before 8pm. On the plus side, when I do stir again, the 'nap' doesn't impede my overnight sleep. Hopefully over the coming weeks, things will continue to improve stamina wise.
The current spell of fine weather comes with an unexpected sting in it's tail too. The heat means my throat dries out more quickly than normal, thus I need to drink more and I've found that I can't afford to go walking down town to get lunch without taking my water bottle with me. I've tried it on a couple of occasions and the gagging sensation from the dry mouth is simply very unpleasant. As with most such situations, when it gets dry and you know you don't have the water, you seem to try to swallow more and make the whole situation worse. It's a lot easier to take the bottle with me and if I don't need it, that's a bonus. But wait, there's more. Sometimes water just doesn't cut it, so I need a soft drink instead. No big issues with that, except yet again there is a balance to be struck. Just as water doesn't always work, too much soft drink sends things back the other way. The juggling act required loses it's novelty pretty quickly.
I'm also continually frustrated by the frequent toilet stops necessary as a result of the liquid intake. I'm not sure if the benefit I'd like most from some working saliva glands is the ability to eat those foods I still can't, or the ability to reduce the liquid intake.
Speaking of food, the menu options continue the now expected see-saw. I'd really love to chomp into a Burgelfuel burger, but two things hinder that. Firstly, the jaw isn't opening as far as it used too pre-treatment, so getting one of their fine creations into the mouth is slightly more than just a challenge. Secondly, the bread issue continues to haunt me. While sandwiches are back on the menu - crusts included (with some limitations regarding thickness of bread and filling), an attempt to eat a KFC burger last week was an unmitigated disaster. OK, so other burger buns might be different and I'll indeed continue to experiment, but this is looking like a long term issue. Never say never - and cutting back on such fast foods isn't a bad diet outcome anyway. Would just be nice to have the choice.
While on the subject of bread, toast in the morning (or anytime for that matter) only stretches to a single piece before the "gluginess' arrives.
So what about other foods? Kebabs - I'm up to maybe 2/3 of one, but still trying to find a consistent source where the meat is moist enough to compensate for my slow eating rate. Curry is still subject to the chef actually providing the mild sauce as ordered. When they get that right, a curry is manageable and enjoyable. Biscuits are another case of make the right choice. I'm not sure how you differentiate the different textures, but the soft biscuits can be eaten, but tend to glug quite quickly, whereas the crisper biscuits take longer to glug and aren't as much effort to eat. Sausages are back on the menu, but quantity is lower and texture remains critical. Fish and chips still pretty much a no go. The chips are so inconsistent that I don't bother now. Tend to have a sausage and potato fritters as that can be managed. Did however have a fish and chip meal at one of the bars in Wellington and the fish was lovely - nice and thick and moist. Chips were marginal though. At least I got to eat fish again though. The cuts I've been buying from the butcher (as opposed to from the supermarket) seem to be passing the test as well. Have had only a couple of "failures" with the majority being enjoyable, moist cuts. Pizza is a treat as opposed to a meal, chicken nuggets need to be battered not crumbed. Pies are basically limited to home-made bacon & egg (thanks Patty) because the pastry isn't as gluggy and the filling not supplemented with artificial fillers.
The weight seems to have settled down and I've had to buy some more jeans in a smaller size to compensate.
In closing, I'm enjoying my routine settling down and now have numerous occasions where I can actually make a choice as to what I do. For so long now, there has been little in the way of choice, but now I'm actually asserting some control over my actions and it is a wonderful feeling. I'm being more sociable and feeling more confident in myself, and it is great.
Monday, February 7, 2011
Dental Dilemma
Like most people, I don't really like going to the dentist. The trauma of the "un-necessary" work performed by the school dental nurse still haunts/annoys me, and initial dealings with the "grown-up" dentist weren't really much better.
My current dentist is however a really nice guy and I don't have the same dread come the time for my annual visit - that is until I'm actually walking to the chair. No amount of PMA makes that initial fear go away.
The other thing that makes dental visits interesting is that I'm "blessed" with a really strong gag reflex. My dentist has now learnt that he takes x-rays using the small holder and has everything pre-setup so the x-ray is taken before the gag reflex kicks in.
Along the course of my cancer diagnosis and treatment, everybody has learnt about the limitations my gag reflex introduces to the way they work and the things they want to do.
The gang of seven have been frustrated many a time as my gag reflex has stopped them actually getting a look at my tonsils, etc, so Wayne Gillingham, the dental guru in the gang, devised a plan whereby they give me nitrous oxide to dull the gag reflex.
The first attempt to do this worked well - and this was the first time they gave me something concrete as far as proof that the treatment had worked.
This morning, we had another session, and despite the success of the last one, the old fear thing came back again, albeit slightly different. I've talked about maintaining my PMA previously, but sometimes you just can't overcome the fear that the cancer has returned. Despite the fact I'm only really in the chair for 10-15 minutes, waiting for the confirmation there is nothing to worry about seems to take forever.
The news was all good. In fact it was even better news than last time. The mouth ulcer that first alerted us all to the cancer has now in fact fully healed and disappeared.
I'm starting to rethink my fear of dentists. The last two visits have after all been nothing short of life changing, in a positive way of course.
My current dentist is however a really nice guy and I don't have the same dread come the time for my annual visit - that is until I'm actually walking to the chair. No amount of PMA makes that initial fear go away.
The other thing that makes dental visits interesting is that I'm "blessed" with a really strong gag reflex. My dentist has now learnt that he takes x-rays using the small holder and has everything pre-setup so the x-ray is taken before the gag reflex kicks in.
Along the course of my cancer diagnosis and treatment, everybody has learnt about the limitations my gag reflex introduces to the way they work and the things they want to do.
The gang of seven have been frustrated many a time as my gag reflex has stopped them actually getting a look at my tonsils, etc, so Wayne Gillingham, the dental guru in the gang, devised a plan whereby they give me nitrous oxide to dull the gag reflex.
The first attempt to do this worked well - and this was the first time they gave me something concrete as far as proof that the treatment had worked.
This morning, we had another session, and despite the success of the last one, the old fear thing came back again, albeit slightly different. I've talked about maintaining my PMA previously, but sometimes you just can't overcome the fear that the cancer has returned. Despite the fact I'm only really in the chair for 10-15 minutes, waiting for the confirmation there is nothing to worry about seems to take forever.
The news was all good. In fact it was even better news than last time. The mouth ulcer that first alerted us all to the cancer has now in fact fully healed and disappeared.
I'm starting to rethink my fear of dentists. The last two visits have after all been nothing short of life changing, in a positive way of course.
Tuesday, February 1, 2011
PMA Is An Ongoing Requirement So It Seems
I was asked the other day how long I'll keep doing this blog. My response was until such time as they say I'm definitely clear. With Tonsil Cancer, I understand that is two years or so. Most cancers seem to be around five years, but for some reason, this one apparently has a shorter time frame.
So given I'm still some months away from the first anniversary (August), I got to thinking about what "abnormalities" will be in my life until that wonderful day in 2012. I've finished with all the medical intervention stuff, so am largely being left to resume my normal life by the gang of seven, bar the regular clinic visits.
It was then it hit me. There are days when I'm struggling to keep from falling into the old habits. I've resumed full time work at a time of year that is really busy for us and it would be really easy to start working the long hours again to make sure everything goes to plan. The saving grace so far has been that I still don't have the stamina to do that, so am leaving when I "should".
I've also come home feeling tired and been tempted by some of the "treats" I've accumulated as I try to find out what I can handle food wise. In the past I'd rip into a block of chocolate and probably have 2-3 rows at a time. Again, I'm lucky something is holding me back, this time in the form of the saliva issues which still restricts chocolate in this format to one square at a time. I'm finding it is easier with some other "treats" and have had to really refrain from just grazing on a mixture of things. At least my subconscious is looking out for me.
I'm also making the effort to eat proper meals and have found by doing so I'm more than satisfied and have accordingly cut right back on what had become a norm of having a nightly dessert. It was east to justify when the push was on to gain weight so Jake would be removed, but I didn't want it to become the norm after that.
So, in reality, I've now come to the "shocking" realisation that the need for PMA didn't end when the treatment did. It is something I've got to keep on at through 2012 at least. I shouldn't really be surprised because there have been so many changes in my life over the last 10 months or so and there is still some settling down to do as I return to what will become my normality. Of course I've got to continue being positive, it isn't that surprising is it? Then why did this realisation catch me out?
I'm lucky I suppose as so far I haven't succumbed and "fallen off the wagon", and I'm still in the stage where I feel really lucky to have got my second chance at life, so the PMA has still been flowing. It is however a timely wake-up call that the second chance came with some" baggage" and it is up to me to ensure I remain on the straight and narrow and make the most of it.
As part of the PMA affirmation, I weighed myself today and it seems like the weight has settled down. I'm probably just under a kilo lighter than I was for the Jake weigh-in and that seems about right given the fudging that was done on the day and my increased activity. So what I've got to do now is actually make the effort to improve my fitness and stamina over the coming weeks. And I've got to ensure those temptation at work and home don't derail me.
So given I'm still some months away from the first anniversary (August), I got to thinking about what "abnormalities" will be in my life until that wonderful day in 2012. I've finished with all the medical intervention stuff, so am largely being left to resume my normal life by the gang of seven, bar the regular clinic visits.
It was then it hit me. There are days when I'm struggling to keep from falling into the old habits. I've resumed full time work at a time of year that is really busy for us and it would be really easy to start working the long hours again to make sure everything goes to plan. The saving grace so far has been that I still don't have the stamina to do that, so am leaving when I "should".
I've also come home feeling tired and been tempted by some of the "treats" I've accumulated as I try to find out what I can handle food wise. In the past I'd rip into a block of chocolate and probably have 2-3 rows at a time. Again, I'm lucky something is holding me back, this time in the form of the saliva issues which still restricts chocolate in this format to one square at a time. I'm finding it is easier with some other "treats" and have had to really refrain from just grazing on a mixture of things. At least my subconscious is looking out for me.
I'm also making the effort to eat proper meals and have found by doing so I'm more than satisfied and have accordingly cut right back on what had become a norm of having a nightly dessert. It was east to justify when the push was on to gain weight so Jake would be removed, but I didn't want it to become the norm after that.
So, in reality, I've now come to the "shocking" realisation that the need for PMA didn't end when the treatment did. It is something I've got to keep on at through 2012 at least. I shouldn't really be surprised because there have been so many changes in my life over the last 10 months or so and there is still some settling down to do as I return to what will become my normality. Of course I've got to continue being positive, it isn't that surprising is it? Then why did this realisation catch me out?
I'm lucky I suppose as so far I haven't succumbed and "fallen off the wagon", and I'm still in the stage where I feel really lucky to have got my second chance at life, so the PMA has still been flowing. It is however a timely wake-up call that the second chance came with some" baggage" and it is up to me to ensure I remain on the straight and narrow and make the most of it.
As part of the PMA affirmation, I weighed myself today and it seems like the weight has settled down. I'm probably just under a kilo lighter than I was for the Jake weigh-in and that seems about right given the fudging that was done on the day and my increased activity. So what I've got to do now is actually make the effort to improve my fitness and stamina over the coming weeks. And I've got to ensure those temptation at work and home don't derail me.
Friday, January 28, 2011
The Body Does Weird Things Sometimes
It's now over a week since Jake was removed and things have gone really well on the healing front.
The wound is healing really well, but at the moment I still have two belly buttons - the hole where Jake was is still quite noticeably indented. It is slowly flattening out and I don't honestly know if it will eventually become "flush" again. To some extent, I'd like it to stay noticeable so I have a visual "memory" of what I've been through. A case of wait and see.
The weird thing though is that since Jake came out, my sleeping patterns have changed. Although the only change to diet/drinking habits/routine was Jake coming out, I'm now not getting up as often during the night. Don't understand it, but happy for the extra sleep.
Given everything my body has been through (often without any input/control from me) over the last nine months, I shouldn't really be surprised at this latest little surprise, but I had already gotten myself in a good space before Jake came out and didn't think there was anything that would happen as a result - bar the need to care for the wound obviously.
Moral of the story - never, ever underestimate the wonder that is our body.
The range of food I can eat seems to continue to widen as I find more foods that I can now tolerate. This week, for instance, I've had a sandwich for lunch on two occasions and apart from the crusts, the bread doesn't seem to be presenting the obstacles it has in the past.
There are still some limitations, but they seem to be lessening over time, so that is another step forward.
The wound is healing really well, but at the moment I still have two belly buttons - the hole where Jake was is still quite noticeably indented. It is slowly flattening out and I don't honestly know if it will eventually become "flush" again. To some extent, I'd like it to stay noticeable so I have a visual "memory" of what I've been through. A case of wait and see.
The weird thing though is that since Jake came out, my sleeping patterns have changed. Although the only change to diet/drinking habits/routine was Jake coming out, I'm now not getting up as often during the night. Don't understand it, but happy for the extra sleep.
Given everything my body has been through (often without any input/control from me) over the last nine months, I shouldn't really be surprised at this latest little surprise, but I had already gotten myself in a good space before Jake came out and didn't think there was anything that would happen as a result - bar the need to care for the wound obviously.
Moral of the story - never, ever underestimate the wonder that is our body.
The range of food I can eat seems to continue to widen as I find more foods that I can now tolerate. This week, for instance, I've had a sandwich for lunch on two occasions and apart from the crusts, the bread doesn't seem to be presenting the obstacles it has in the past.
There are still some limitations, but they seem to be lessening over time, so that is another step forward.
Wednesday, January 19, 2011
Jake And I Part Company
Today Jake and I parted company. It has been many months now (13th of May we were joined together) that I've had the stomach peg and it is really good to have it removed. It is in effect the last medical step in the return to normality. From here on in, it is up to me.
Jake was the last of the pre-treatment procedures and it seems somewhat appropriate that he is also the last to be removed. He has been a "faithful servant" and for my part, the endoscopy nurse praised me for how well I've looked after him and the site.
I had always believed that Jake was held in place by a balloon inside my stomach. It turns out they have only been using such devices for the last couple of months and my version was somewhat different. Not to put too finer point on it, the removal was not going to be without some discomfort.
In reality, Jake was held in place by a disc and the only way to remove it was to pull it through the hole in my stomach. So, we have a disc the size of a 50c piece coming out through a hole the size of a straw - end result is discomfort. That visual image not enough for you? - OK, a picture is worth a thousand words and all that, so here you go.
The actual process is really quick. You are told to breathe in, then breathe out and hold your breath. It is at this stage the nurse wraps her fingers around the tube and yanks the puppy out.
No stitches to seal things up - it should heal naturally within 24 hours.
No special precautions, apart from keep the area clean and dry and expect some oozing.
No restrictions on eating (refer potential oozing).
Within 10 minutes I was on my way. Bonus was because it took so little time, I didn't exceed the 30 minutes free parking time at the hospital. $3 saved.
I must admit it feels strange not to have a tube hanging out of me any more. While I've waited for this day eagerly, readjusting back to a "normal" body is taking some time. I'm conscious of the pad covering the wound and compensating my movements to ensure I don't do anything to dislodge it. On the plus side, no conspicuous peg related bulges in my shirt any more.
Jake now resides at home and can share "war stories" with Hugo and the jar containing my wisdom teeth. Somewhat of a morbid collection, but a great starter kit for Halloween going forward.
It is probably also an appropriate time to reflect on the last 8 months or so. As you can see from the three "From The Other Side" postings, this journey has had some wide ranging impacts. I must admit that from my side, I was concentrating on getting myself through it all, and while I understood it was having an impact on my support team, I didn't fully appreciate how much so. A very sincere thanks to you all for giving so much of yourselves to help me as you did.
So with Jake now cut loose, has normality returned? As I've said before, there is a new normal, but with each day my eating returns more towards normal, I'm now back at work full-time and slowly regaining strength. I've mowed my own lawns and washed my new car twice (very poor given it is 3 1/2 months old, thank goodness for the paint protection system). I've even, shock horrors, done some good old-fashioned house cleaning. I'm even giving Bax a fair bit of overdue lip and I'm told I'm smiling again, more of my old cheeky self.
I certainly feel like I'm back to normal, but am still being cautious not to overdo things, so there is still a gently, gently approach towards some things.
Today is definitely closure on the medical intervention front. You could even say it is the end of round two (round one being the treatment), so we've only got round three to go - the medical all clear. That may still be a year or two away, but with my birthday (and anniversary of the confirmed diagnosis) now less than four months away, I'm really looking forward to life again and just so thankful to everybody that has made that outlook possible.
How about a post-Jake shot to finish.....
Jake was the last of the pre-treatment procedures and it seems somewhat appropriate that he is also the last to be removed. He has been a "faithful servant" and for my part, the endoscopy nurse praised me for how well I've looked after him and the site.
I had always believed that Jake was held in place by a balloon inside my stomach. It turns out they have only been using such devices for the last couple of months and my version was somewhat different. Not to put too finer point on it, the removal was not going to be without some discomfort.
In reality, Jake was held in place by a disc and the only way to remove it was to pull it through the hole in my stomach. So, we have a disc the size of a 50c piece coming out through a hole the size of a straw - end result is discomfort. That visual image not enough for you? - OK, a picture is worth a thousand words and all that, so here you go.
The actual process is really quick. You are told to breathe in, then breathe out and hold your breath. It is at this stage the nurse wraps her fingers around the tube and yanks the puppy out.
No stitches to seal things up - it should heal naturally within 24 hours.
No special precautions, apart from keep the area clean and dry and expect some oozing.
No restrictions on eating (refer potential oozing).
Within 10 minutes I was on my way. Bonus was because it took so little time, I didn't exceed the 30 minutes free parking time at the hospital. $3 saved.
I must admit it feels strange not to have a tube hanging out of me any more. While I've waited for this day eagerly, readjusting back to a "normal" body is taking some time. I'm conscious of the pad covering the wound and compensating my movements to ensure I don't do anything to dislodge it. On the plus side, no conspicuous peg related bulges in my shirt any more.
Jake now resides at home and can share "war stories" with Hugo and the jar containing my wisdom teeth. Somewhat of a morbid collection, but a great starter kit for Halloween going forward.
It is probably also an appropriate time to reflect on the last 8 months or so. As you can see from the three "From The Other Side" postings, this journey has had some wide ranging impacts. I must admit that from my side, I was concentrating on getting myself through it all, and while I understood it was having an impact on my support team, I didn't fully appreciate how much so. A very sincere thanks to you all for giving so much of yourselves to help me as you did.
So with Jake now cut loose, has normality returned? As I've said before, there is a new normal, but with each day my eating returns more towards normal, I'm now back at work full-time and slowly regaining strength. I've mowed my own lawns and washed my new car twice (very poor given it is 3 1/2 months old, thank goodness for the paint protection system). I've even, shock horrors, done some good old-fashioned house cleaning. I'm even giving Bax a fair bit of overdue lip and I'm told I'm smiling again, more of my old cheeky self.
I certainly feel like I'm back to normal, but am still being cautious not to overdo things, so there is still a gently, gently approach towards some things.
Today is definitely closure on the medical intervention front. You could even say it is the end of round two (round one being the treatment), so we've only got round three to go - the medical all clear. That may still be a year or two away, but with my birthday (and anniversary of the confirmed diagnosis) now less than four months away, I'm really looking forward to life again and just so thankful to everybody that has made that outlook possible.
How about a post-Jake shot to finish.....
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