Dealing with Cancer fatigue

It’s a little after 6AM and I’ve been awake for a couple of hours and decided to get up and do something constructive. My mind has been going ten to the dozen with ideas for my blogs, how to deal with all the exciting things happening at work, cancer and music.

This could become a book, which may help if you or someone you know is dealing with cancer, or it may not. At the very least it will help me as a journal and that’s fine.

Today is about emotions, not just for myself but the people that surround me and about coping mechanisms

The irony is that of all the people I know with cancer, my condition and prognosis is probably among the best. I’m about 6 weeks away from getting my next PSA tests, but the last one was the first one that went down since my 8 week’s of radiation, which is great.

Meanwhile 2 good friends have recently had mastectomies, one last week, she is still in hospital, another is making regular trips to hospital as the cancer has metastized, a colleague who is helping me by talking to me about her situation, which is terminal and another good friend whose cancer has now gone to his brain and is possibly inoperable.. None of these are people I met through cancer, they are just close people in my life.

My boss asked me a week ago how I was doing. I told her I felt I was improving, especially my fatigue and sleep, but that was speaking too soon, because as soon as I had told her that, it went backwards again.

Here’s a classic scenario for me, almost every day. I go to work and try to pace myself, with a goal to walk for half an hour at lunchtime (sometimes I achieve that, maybe once a week, because I suffer death by meeting). I love my work and when I’m busy I don’t think about the cancer at all. The goal is to leave around 3:30 and perhaps catch up on a bit of work reading when I get home or just rest. I then mostly leave between 4 and 5, which is still much earlier than I used to. If I don’t pace myself I really suffer to the point where it is an effort to raise my weary legs to walk from the car to the house, or do much of anything, where previously I used to go home and get on the cross trainer or go for a walk and play guitar. If I make it much later, I have to really think about whether I should be driving, make sure I have a coffee, windows wide open and focus. Don’t worry, I had one tiny moment once and have been ultra cautious ever since. I will not drive if I am too fatigued.

I come home, have dinner and fall asleep about 7PM. Once a couple of weeks ago I fell asleep eating a piece of steak, fast asleep, although my wife maintains I was chewing in my sleep, I think that was a moment when I woke up. I feel ripped off because that is my time and my time with my wife. She tells me to go to bed, but I feel too annoyed about losing my evening, the part of my lifestyle that I work for. By the 3rd time i grudgingly go to bed somewhere between 8 and 9PM feeling really bad for leaving my wife on her own every night.

Despite falling asleep in the lounge, I then need something to help me get to sleep when I get to bed, with which I am gone within 15-30 minutes. During the week I will sleep around 10-11 hours and wake up just as tired as when I went to bed.

On other nights, mostly weekends, I will wake up at 2 or 3 and get up and read for an hour and go back to bed, but I will still usually get 8-10 hours sleep.A couple of years ago I was fine with 6 hours sleep.

The fatigue is hard to describe. It is both physical and mental. At night it is a feeling of being dead tired and I have no control over it. I sit down, we watch TV or read my Kindle and within minutes I’m in a deep sleep. But it’s also physical. I now know what bone weary means, because that’s what’s its like. My whole body is exhausted. Lifting a limb is hard work. I go to play guitar and pick it up, put it down, it’s too hard and  LOVE my guitars.

I’ve been working on my attitude, but please don’t tell me to think positive, I think all cancer sufferers hate hearing that. It’s not helpful. I’ve been focusing, as in my previous blogs about things to look forward to. One of those was my new car. With the help from a malignant cancer clause in one of my insurance policies (which also continues to help with costs not covered by my heath insurance), I was able to by a  C5 targa top Corvette. Something I wanted all my life, but never thought I would ever own. The closest I thought I would get was sitting in one with my daughter at Disney World in Orlando. It is interesting how many people buy themselves a new car when they have cancer.

Ironically I wrote that goal in my bucket list app in 2011, not for a moment thinking it would come true and the due date for the goal was about 80 days from when it happened. I am a strong believer in goal setting, although I don’t do enough of it. I am starting to again though:)

But goals and things I look forward to may be as simple as putting new strings on my granddaughter’s guitar and giving her lessons, or a weekend away with my wife and friends, as well as bigger things like doing a rubber ducky boat trip on a glacial lake on the Tasman Glacier, a trip to Samoa this winter, or writing a new song. I’ve had several experiences where things on my bucket list that were highly unlikely, like being able to go to my grandmother’s 90th birthday party on the other side of the planet in Amsterdam, came true serendipitously and I subsequently got to go and visit her several more times before she passed away at 98.

The car is certainly good medicine. I love being behind the wheel and I even enjoy the process of polishing it, while listening to a podcast on my phone. We haven’t been on a road-trip yet, but it is now second nature, more or less, driving a left hand drive car in a right hand drive country. I am now the guy that I used to give the thumbs up to in a gas station or other places, when people see my car.

I’m going to break this up and the next blog is going to be about a melt down I had a couple of weeks ago, which was both bad and good.

 

Advertisement

Twice in one day! My journey with photons.

As I was sipping my pleasantly flavored urinary alkalinizer this morning,  I was thinking back to yesterday. Because I had a few radiation free days over Christmas, I had to go in to the hospital twice for my photon blast. Sounds a bit like a cocktail drink doesn’t it. Maybe I should invent one when I’m better. It’ll be a purple drink that will knock your socks off.

When I got home after the second bout I was planning on playing guitar or something but I didn’t really have the energy to do anything.

It’s an odd feeling. I was expecting to feel tired and I did, but its a different type of tired. The radiologist defined it quite astutely this morning, if not a little close to the subject of attention, when she said “A lot of men find themselves feeling knackered when they have two doses in one day.”

In my part of the world knackers are slang for testicles if I need to be any clearer, but in this sense it relates to the exhausted state at which horses or other livestock are no longer of any use to their owners and are sent to the knackers yard to be rendered into pet food or other items of greater usefulness.

Anyway, I was feeling a little more energetic as I got changed this morning for day 19 of my treatment. Back in the groove as it were, getting into my lava lava, chatting with others in the waiting room and then heading for LA 3 to watch the purple light on the radiation machine spin around my torso.

I feel like I should be doing something like walking, or painting the fence. But I might have to be a bit like rally driver Possum Bourne’s uncle who I used to work with at Tait Electronics. He said to me that whenever he felt like going for a run, he would lie down until the feeling passed.

I have written a speech this morning, which I hope to be allowed to give at a dear friend’s wedding next week, so I haven’t totally wasted the day.

Anyway, I hope you’ve all had a great Christmas and wish you safe travels if you are heading away to celebrate New Year’s Eve. I have 3 days off treatment and will be joining the throng heading for the winter-less north, although I have been receiving weather forecast emails containing severe rain warnings. Not a problem though, I’ll have a guitar or two with me and good company. I wrote the song Raglan Rain on just such a trip. Maybe my muse will come with me.

Apps to Aid Your Road Trip – TripAdvisor

If I had only one application to use on my road trip it would be tripadvisor. Having said that it wasn’t enough on my road trip although I spent more time using this app than any other. I put a lot of planning into the trip before hand and contacted US State Tourism organisations asking for information. Only Tennessee came back to me with a booklet including useful maps of the whole state and things to do, places to see, which was great. I filled it with post it flags.

Using Trip Advisor at one of the many hotels I stayed at last month

All tourist organisations have material like this book, but they don’t make it easy to access and they don’t appear to collaborate interstate. This is a major negative for a traveller on a road trip that regional tourist operators in New Zealand and Australia should also think about. I managed to get a similar book for Louisiana when I arrived in New Orleans, which looked like it was designed by the same company. I was lucky that the property we stayed in had one in the room. Otherwise you need to find an Information Centre, but of course these aere widely spread out and you need info to find one.

The biggest problem was that these books were segmented by town or county and not well linked to the main map. They were designed more for people who are looking at locating themselves in a town for a holiday and exploring from there. Also the maps for each state ended strictly on the state line, so if there was something worth enjoying on the other side, it wasn’t going to be on the map. This makes it really difficult to plan a multi state holiday. It would be far better for State and Regional Tourism Operators to work together to mutual benefit. I’m going to cross the line whether you make it easy for me or not.

So back to tripadvisor. If you install it on your mobile or iPad it will help you find Accommodation, Restaurants, Flights and Things To Do, sometimes. What I found was that they worked pretty well in cities, which was the same case with apps such as Foursquare and others, but when you go to rural USA, which was my plan for 3 weeks, the information tends to be more limited to accommodation and sparse when it comes to the many interesting attractions that people have put huge effort into but leave most people blissfuly unaware of them.

My main use for tripadvisor was accommodation and this was really interesting. When you travel through rural America there is a huge variety of accommodation options from very cheap to very expensive. The great thing about it is that it is full of reviews from people who have stayed at those properties. Reviews is something that scare the hell out of tourism industry publishers who charge people to list on their publications, websites, reservation engines etc and in New Zealand some property operators have complained about competitors giving them bad reviews, therefore saying the systems don’t work.

My message to them is that I trust my peers more than I trust advertising, especially those who have stayed at the properties. When you do advertise, make sure you are honest and deliver on your promise.  When you say you have high speed WiFi Access throughout the property, make sure you do because this could be the deciding factor as to why someone books and stays with you and the one negative if it doesn’t work, that they will tell the world about.

For the app user:

• Read many reviews. Look at the dates they were posted and read them carefully. Often there are unique stories where the person had unique needs or expectations that were not met. The more reviews you read, the more you will get the real big picture. Some people are unreasonable or feel that if they are doing a review they have to find fault. Do other people contradict their comments or are there common threads?
• Think about what your needs and time frames are. For example I got a cheap hotel for one night in New Orleans as we were arriving at 1AM and leaving again first thing in the morning. The review said it was clean and tidy but the air conditioning was noisy. They were right, but we knew we were going to be so tired after 30 hours of traveling that it wouldn’t keep us awake and the price and location was good.
• We ended up rating properties based on the things we were looking for and canceling out any that looked dodgy, for example several had complaints about bed bugs.
• We were able to ‘star’ the ones we thought were ok for a re-look.
• We also looked for situations where people had complained and the manager of the property came back and offered solutions and responses. In some cases there were managers who responded to every comment good and bad.
• The problem is that there are many options and when you are doing a road trip and trying to find attractions etc, you can easily waste hours of what should be relaxation time on your trip, but this is one of the costs of being a FIT.
• Tripadvisor offers many choices of reservation engines and price checks. I quickly found that once I had found a property I liked, a phone call to their front desk not only got me a cheaper price than all of the reservation sites, but also cooperation on a better room. Many properties will put you in a crappy room next to the laundry, the road or the busy swimming pool when you get a cheap online booking. If someone recommends a room number and their review sounds like what you are looking for, ask for that room.

Tips for the Tourist Operator:

• Your property is likely to end up in tripadvisor whether you submit it or not.
• People will talk about your property whether you like it or not. Most of them will be bona-fide guests who benefited from the application and are therefore sharing their experience.
• Put yourselves in their shoes. Your business is about hospitality and for your guest it is totally personal. Treat them as you would your family.
• When people make a comment about your business, good or bad, acknowledge and respond to it.
• If you sell rooms cheap on reservation engines don’t automatically give them the crappy room that you never sell if there are better rooms that are going to stay empty. I had a property in Auckland, Sebel Suites, do that to me early this year. They said they could only give me a room with a view of the carpark, because I had booked
  

  Sebel Marketing

  on a cheap promotion. The thing was that they didn’t sell many of the nice rooms overlooking the beautiful Auckland Viaduct Basin that night (I followed up the next morning), but if they had, it wouldn’t have been fair to the people who paid full price. So here’s my advice to them, which the Duty Manager didn’t want to hear. I live on the outskirts of Auckland. I have the choice to go home, but sometimes my wife and I like to go to a show, or out for a night, have a few drinks and not have to worry about driving home. We have stayed in many properties in Auckland. We have told all of our friends and tripadvisor which ones we liked and which ones we felt let us down. We will never again go to the Sebel Suites, we will go back to hotels like the Sky City Grand which has some great promotions on their site. As I said, it travel and tourism is personal.

• Make sure your business is on sites and apps like TripAdvisor.

Bottom line, I almost hated tripadvisor by the end of my holiday because we became almost fanatic about reading the reviews. We found the star ratings didn’t help much and whilst there was a function to save the ones we wanted to revisit, we couldn’t also flag the ones to avoid. We spent a huge amount of time on the site, BUT in every location we found exactly what we expected. We knew which rooms to avoid, and quickly learned to read between the lines.

For developers, this is an excellent site / application to learn from, not perfect but very good, even using your location on your mobile to help you find locations. For users, do give back. If you value crowd sourced feedback and make decisions based on it, you need to give back as well. If you are in New Zealand or Australia, talk to us at GeoSmart. We can help you with practical experience as both frequent travellers and users of apps and a mapping company that cares very strongly about the quality of our location-based data, maps, Points of Interest and the success of applications developed using it. We are local and keen to help. If you are here, but aiming for the world, we can help you get a start based on what we know about the industry and our experience as travelers. We want to help grow New Zealand international success stories.

Planning a road trip somewhere or know somene who is? The may be interested in this series of blogs, which they can find at https://luigicappel.wordpress.com Please feel free to forward this to anyone you think may benefit from it. I wish I had been given a lot of this advice before I left for my trip.

I will follow this up with some ideas as to what would have made tripadvisor a better app for the road tripper, which may be of interest to people looking at developing apps for travel and tourism and am happy to discuss my ideas and experience.

It’s almost Easter – Does anyone even remember who Brian was?

On Sunday I was driving home from Whangarei on a nice sunny afternoon when all of a sudden about 2 km before Puhoi, the traffic just stopped. There didn’t seem to be any reason, we just suddenly ended up in a line of cars that turned out to stretch for about 7 or 8km. I suspect that many of them were people returning from their holiday home where they had been preparing for the Easter weekend which is coming at the end of this week of course. On the way North on Saturday I had been driving behind a steady stream of cars towing boats and caravans, although ironically the traffic flowed pretty well.

It made me think about Easter, because the long weekends heading out of Auckland are diabolical for traffic. Pretty much every Easter half a million Aucklanders try to escape the hustle and bustle and head North and South. A third go north and create chaos, another third head for the famous Coromandel where they stop in a huge line at the notorious one way bridge in Kopu and if they are lucky, might get a free Red Bull for their trouble. The others head further South along State Highway One which is less of a problem until they meet the Coromandel people coming back on Easter Monday.

One thing I really like about Kiwi’s is that they are polite and know how to queue and are strong supporters of fair play. Just about anywhere in NZ, people will find the end of a queue and stand in line and wait their turn, unlike many other countries I have been where it is survival of the fittest. Unfortunately their are exceptions and heading south that exception always happens just south of Waiwera, famous for its hot pools. You see, there is a passing lane. Everyone knows when the traffic is travelling at 5km per hour, that there realyl isn’t any point in using the passing lane, because it just unfairly pushes people backwards who have waited patiently in the line of pollution spewing diesels and other assorted vehicles. But there is always someone who has to be different. On Sunday it was a SUV with the number plate TMAG who decided, “Here’s an opportunity, I’m going to race past those suckers and move ahead a good 40 car lengths”. So he did and now it wasn’t just the car radiators that were boiling, but also the people who had been sitting in their cars in the end of summer heat. Hey how about yet another sin, thau shalt not begat your fellow motorist’s position in the traffic jam.

And I got to thinking (I know you don’t start a sentance with a conjunction, but this is my blog ok? lol), that guy must be a pretty miserable person. Easter’s coming, doesn’t he remember Brian? Brian Cohen was put on the cross at Christmas in Judea in 33AD when he was mistaken for the Messiah and really, for many of us life hasn’t been the same since. Even though he wasn’t the Messiah, he really tought us something about good spirit and making the most of your lot. He brought us that famous hymn ‘Always Look on the Bright Side of Life‘, known by some as The Song Jesus Whistles.

Now I don’t know if Jesus ever whistled, I don’t recall ever reading about him doing such a thing, but I’m sure there is relevance in the attitude that no matter how bad things get, there are aways better times ahead. I took that in as Trag, sorry TMAG raced up the empty passing lane on Sunday and other than flipping him the bird, I resisted the impulse to race after him and tell him what I thought. He got the message anyway when further up the road noone wanted to let him back in the line.

I won’t be joining the mass exodus on Good Friday. I’ll sleep in and do some chores around the house and relax while I’m looking on the bright side of life and on Saturday I’ll check out the Herald and read about and see photos of the 20km line of frazzled drivers waiting to cross the Kopu Bridge on their way to a relaxing long weekend.