I had actually almost finished a post on another subject, but that can wait for another day.
My trip to the dentist today uncovered some interesting things.
Before I get into that, I travelled to Gisborne over the weekend to attend the funeral of the husband of one of my cousins. I'm not going to go into too much detail, but will say the service was a wonderful celebration of the life of obviously a much loved husband, father, brother and friend. I was blown away by the strength shown by Lynette and her sons and my love goes out to them all.
OK, the dentist today was to address the two holes on my left side and despite all the dental work I've had over the years, it was the first time I've had the nitrous as part of the process. I'm now a convert.
While I was in the chair, I had time to think about my pain thresh-hold and reaction to pain. Ashwin, bless him ,was doing his best not to hurt me as he drilled, etc, but there was a couple of times when I winced. Now, I've had so many people poking and prodding at me, taking blood, giving me drips, drugs, etc, not to mention the chemo and radio, that you'd think I would have built up a fair tolerance. And, in all honesty, I thought I had, but I've been questioning that of late and today confirmed my thoughts - I still don't like pain.
I'll credit the drugs (morphine rocks) with my perceived increased tolerance, but it could also have been that it was so much a part of the routine that I just switched off. Now I've been "clean" for so long, my aversion seems to have returned to normal. When I got my celebratory tattoo last month, I felt a fair amount of pain, but put that down to the loss of muscle condition and weight meaning there wasn't as much padding any more. Today merely confirmed that this aspect of my recovery is back to normal - I feel pain just like I used to. So, in future, I'll be adding the nitrous to my dental treatments.
Another observation / subtle change. As a result of the road trip, I've worked out that when I do things out of the norm that requires more effort/exertion (or whatever you want to call it), my body has developed a mechanism to make me take it easy as it recovers. Clever thing the body. In my case, I get a bout of the sniffles for a couple of days. When it first happened, it was after my first late night outing, so as I'm susceptible to the cold now anyway, I put it down to the night air. It happened again on each of the other times I've been out late, but when it happened during the road trip (Gisborne was a balmy 22 degrees each day, so you can't blame the cold), the penny finally dropped. I'm finally coming right again now and have a little warning signal to heed in the future. I'm sure over time I'll find a way to know when I'm about to over stretch myself and thus avoid the sniffles.
In case you were wondering about the tattoo, it is of the cancer society daffodil design. When I started treatment, I promised myself I'd get that tattoo once I came out the other side and beat the cancer (I might not have the official all clear yet, but as far as I'm concerned I won, it lost), as a reminder of how lucky I have been and the 2nd chance I have been given. It's on my right shoulder and here it is..
Had another check up today with the oral guys at Hutt Hospital. Another all clear, so the good news keeps on rolling on.
I think this was check-up #3 and I freely admit to developing quite an "affection" for nitrous oxide. It certainly mellow the mood and the only downside is it is over as quick as it started. Then again, that may be a benefit as I can drive away straight away (and don't need anyone else to get me home because I'm whacked out).
When I go to my usual dentist,and I need a filling (more on that later), I've always just taken the anaesthetic injection to solve the pain issues. Now, I'm beginning to understand the extra relaxing properties of the nitrous, I may just have to add some of that in.
I think Mr Gillingham actually got a bit heavy handed with the dosage today - his nurse was pretty quick at turning it back down. Never mind, I was happy by then.
This week so far has been somewhat all about dentists. I usually have an annual check-up, but last year's got caught up in everything else, so I never had one. Monday was this year's check-up and Ashwin was pretty happy with what he saw. Seems the saliva issues have one positive side effect. Seems saliva and tartar are linked - as a result of a lack of my issues, I'm not developing tartar. Yippee.
On the downside, I have two small holes on my left hand side (one upper, one lower) that need to be filled. That will happen next week. Semi-Boo. Now, I found out today that these small holes can pop up from time to time potentially as a result of my treatment.
When they took the 5 teeth out last year before my treatment started, it was to ensure the jaw, etc could heal before the zapping created havoc. Post treatment, there was/is the risk any teeth removed could cause issues as the jaw won't be able to heal as well (if at all?) as it could before being radiated. So, 5 teeth down, everyone was happy we had a good base to work from.
Now it seems this little "decay issue" may be an ongoing thing that needs to be watched.
The one thing that annoys me most about it is I'm getting tooth decay without enjoying the normal root causes (no pun intended) - things like chocolate, sweets, takeaway food, etc. In the past I've gone for a few years without needing fillings, while going crazy on the bad foods. Now I'm being a good boy (by in large), only have small quantities of treats (normally as dictated/restricted by the saliva issues) and I've got god-damn fillings required. Let's not forget I couldn't actually eat for 5 odd months during all of this either. And, I just remembered, I do most of my eating on the right hand side of my mouth now as well. Talk about stacked odds.
So, despite being a good boy with cleaning my teeth, using the required mouthwashes, etc, I'm screwed yet again by the after effects of the treatment.
Given the alternatives, I'm happy to have a slightly increased filling rate. At least I'm around to moan about such things.
Today is my Birthday. It is also exactly one year since they put me on the operating table to confirm the cancer diagnosis. Today is a good day.
Firstly, because I'm still here. Secondly, because they aren't operating on me on my birthday again. Thirdly, and arguably most importantly, I'm healthy again - we beat the sucker!
So much has happened in the last year, that it is quite easy to overlook and/or perhaps trivialise what I've been through. Some of that is selective amnesia - I don't want to remember the real scary bits. Other bits are merely because they were like collateral damage and seem like incidental to the overall journey, although they did in fact play a major part in the overall scheme of things.
I do have to acknowledge that however you look at it, the last 12 months have been tough. Not just for me, but also for those who effectively put their own lives on a holding pattern to support me through the treatment and recovery. I can't thank you enough for doing that for me.
It is also appropriate to once again thank the army of medical people who have been in my corner, and still continue to be there to ensure there are no nasty surprises still lurking. Tatiana could almost be considered my guardian angel - I am extremely lucky she picked up the lesion so early and got the ball rolling so quickly. The specialists, blood & cancer unit team, district nurses, et al have all been absolutely top notch. They definitely got me through some scary bits and theirs is a job I don't think I'm strong enough to do. Dealing with people on a daily basis who are facing the totally indiscriminate, uncaring, many faced disease that is cancer, takes a very special type of person. You guys & girls rock.
Today is a good day, and to keep the positive mood, I have decided to merely look at the major affects of the last 12 months, instead of dwelling on the journey.
On the negative side: Saliva gland and hearing losses, ongoing anxieties.
On the positive side: Hard not to consider the weight loss here, I have a new appreciation of the importance of both life and family, I now understand the need to and importance of putting yourself first sometimes, I got my wisdom teeth removed free of charge, I know that morphine is really as good as they say, I've got some cool "war" stories, I'm one of the lucky ones to get a second chance and did I mention, we beat the bugger!
So a resounding win to the positives. Although some might argue the merits of some of the positives I raise, it's my list, so my decision is final.
While I have no desire to go through any of this again, in it's own way it has been a very worthwhile journey because I know I'm a better person now than I was before, both mentally and physically.
They say some events change our life. Well, I've had my life changing event and it's all uphill from here.
Today is actually better than good, it's a great day and signals the start of a new year with a much brighter future than the last.
For the last few weeks I've been going to an osteopath to try and get my body loosened up.
As a result of so many months of inactivity and having to sleep in a semi-upright position, the muscles in my neck and shoulders became super tight and a source of frequent discomfort and/or pain.
I already knew the body has some wonderful defence mechanisms and on occasion I've been really happy about that, but this is a case where these defences have contributed to and continue to add to the overall problem.
Seems the body doesn't really like foreign objects being inserted. No surprises there. My brain was obviously forgiving of Jake - for the greater good and all that - but, it seems the message either didn't get through to other parts of my body that it was OK, or it was ignored. Either way, with Melissa's help, we're now trying to loosen things up, but are struggling to make significant headway.
It seems that as one area is targeted, there is always some other complicating factor just waiting to negate any benefits I should be getting.
As an example, it seems as a result of the stomach peg and sleeping position, my organs have been "moved around" a tad around the diaphragm area and we need to try and release some of the tension, etc around there before the other muscles "directly" looking after the neck and shoulders will respond. Seems this "relocation" is partially to blame for my slightly stooped posture - everything is pulling me into that slightly hunched position.
Great. This isn't going to be a quick fix and despite buying into the exercises Melissa has me doing, the relief tends to be reasonably short-lived at the moment. Making things more frustrating/challenging is she is having to continually reassess what needs to be attacked first.
And to round it all off, it seems that as my impaired immune system works on getting rid of my sniffles, the natural defences react by (you guessed it) tightening muscles up in the chest area.
It just goes to show you, things are never as simple as they seem. I honestly thought sorting out this muscle tightness would be quite a quick fix, but I certainly appreciate, yet again, just what a complex engineering marvel the body is and you can't rush things.
It's been just over a week since my last clinic visit, and it's only a week or so until I have my next appointment with the dental guys to take a nitrous oxide assisted look at things.
While out walking today, one thought came to mind almost instantly when thinking about both situations - I need an anxiety off switch.
No matter how much good news I get about the outcome of my battle, the reality is I get a spontaneous feeling of anxiety for a couple of days before each appointment. The truth is I still worry about what could be about to happen news wise. That might be a perfectly normal reaction in the circumstance, but with the first anniversary of the confirmed diagnosis also only a week away, I would have hoped I'd be starting to feel more self-reassured that I really have dodged a bullet and things will only continue to get better.
And, to some degree, that is indeed true - until that period just before the next appointment. On a "normal" daily basis, I'm happy to just get on with it and I strive to make the most of the second chance I'm currently living. But, when those appointments come into view, it all goes out the door and the anxiety kicks back in. All a good dose of PMA does is dull the anxiety, it can't make it go away.
To make things worse, I now have a new anxiety catalyst, lucky me. In my medically induced isolation last year, I didn't have to worry about colds and flus. If anybody had the slightest sniffle, they stayed away from me. Last week, the "joy" returned and I got what I thought was a dose of the sniffles. After chasing a runny nose all weekend, I stayed at home on Monday, but just couldn't get warm. Even now, the sniffles haven't fully gone away. So what is the anxiety trigger? Just what is the state of my immune system now -has it recovered, will it ever fully recover, just how careful do I need to be?
Usually, I'd shake a cold in a day or two, very rarely did a more severe winter ailment keep me away from the office for more than the same period. Yet, this seemingly trivial bout of the sniffles just won't go away. Needless to say I'm now taking medication to try and dry up my runny nose, but is this just symptomatic of what is going to be an ongoing issue and how will I cope with a real good dose of a proper flu?
I know I'm potentially feeding my own anxiety, but the reality is after what I've been through, I'm inclined to take health matters somewhat more seriously than I used to. For instance, I feel the cold more now than I used to and tend to be rugged up more so than others around me, but I don't care, I need to keep my body temperature where I'm comfortable. So, I already sort of know things aren't quite right yet, but all that doesn't make it any easier.
I suppose, when you cut to the chase, I'm still learning about the new normal and some of it isn't as easy to cope with as I'd first thought.
Today was Gang of 7 day and it provided another tick in the box as far as my recovery goes.
Mr Hamilton is still happy with things and he even managed to get a look at my tonsils - a first for him. He was a tad concerned I had not put on any weight since the last clinic (I think I've actually lost a little, but now stabilised), but once I explained I was eating properly, doing exercise ,regaining strength and feeling pretty damn good overall, he was OK.
And, the real kicker - he is going into battle to get my hearing sorted. He doesn't understand the delays and was quite vocal about they should just get the hearing aid(s) sorted to overcome the nerve damage done by the treatment. They can't undo the damage, but they can at least do something to mitigate it as much as possible and make it more tolerable for me.
Good result all round.
6.7 inches in the old lingo actually, but what has that got to do with this blog?
Well, I got my suit out of the closet the other day and decided to try it on. The jacket still fits quite well, perhaps a tad loose, but still an acceptable fit. The trousers, however, were quite another issue. You see, the 17 cm is the difference in waist size between the suit pants and my current "apparel" - I'm that much smaller around the waist than I used to be.
While there was no disputing I'd lost weight and am now wearing smaller sized pants, the full impact has been masked somewhat as it has been somewhat of a gradual progression - I'd buy new jeans along the way that didn't fall off me and it was just a case of them being a size or so smaller than the last ones.
The full 17cm difference as such a visual exercise was a bit of a shock - but also rather pleasing to be fair.
So, the mission for this weekend is to journey off to the suit shop and see if I can get a pair of correctly sized trousers to match the jacket. I'd hate to have to buy a whole new suit, but if I had to, it would be another outward symbol of how much my life (and body) has changed as a result of my little battle.
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.
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?
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.
