Week 100…perhaps not

Week 100…perhaps not

What to say about this past week? Blah sums it up. It wasn’t terribly bad and certainly not outstanding. If I was fair about it, which I’m not of a mind to be at the current moment…I stuck to my ‘only 3 feed tube feedings a day’ plan and got 1500 calories by mouth, etc. I guess I am tired of it all and want to move on to a life beyond the daily focus on food, feeding, when to take this when to take that, etc….end of rant.

The really irritating part is that I eat very little, or have a feeding and feel ‘Christmas Dinner’ full… which, of course, doesn’t allow for more food and moving forward. Then there’s the impact of the morphine on the elimination system…slowing it to a halt, the need to take Colace and other stuff to get things moving….OK I guess the rant hasn’t ended.

Here is what I have decided. As I write this at 11AM on Saturday I haven’t had morphine since 11 PM last night. I had gotten down to 4 ml from 10 so it’s not exactly cold turkey. I am going to get off the morphine. I am not taking it any more.

The 2^nd major change I am going to make is to get the tube taken out within the next 2 weeks… if they can do it, have an opening. Olga, my energy worker and former doctor said to me during my visit yesterday that the tube suddenly felt ‘foreign’ and I agree. It didn’t feel like that 2 weeks ago she added. A tube running through my stomach and the opening into the intestine has to interfere with food consumption in my opinion. It certainly must slow down how quickly the stomach passes on the food.

I have had more fatigue this week so I am resting more. My plan is to hold the course and slowly start to introduce a bit of resistance training into my program. I have been walking about 20 minutes daily and jogging between alternate street lights when I get to my crescent…it’s all of 5 intervals but it’s a start.

Did have a wonderful visit with Mel our women’s hockey coach on Wednesday. The gold medal teams will be gathering in Edmonton on Monday for the ring ceremony…each team member gets a beautiful Olympic ring to commemorate their gold medal victory. I won’t be able to go but I can tell you they are beautiful because she brought me mine… which I can’t show about until all the others get theirs on Monday.

I appreciate having you to get this all off my chest to. You’ve been a great listener!

Thanks,

With Warmth,

Peter

Progress!

Good week. I feel progress has been made on several fronts. Met with my Oncologist on Tuesday. He’ s pleased with the progress and looked down my throat. The mucus membranes are very sensitive and therefore my throat is still very fragile. That, according to my Naturopath is normal and he suggested a few things I can take to assist the healing and also help the stomach with digestion, etc.

The biggest area of improvement has been in eating. On Wednesday I decided to try and cut back on my reliance on the feeding tube. It’s an interesting discussion in that …do you wait until your eating is at a level that allows you to cut back or do you cut back and move your eating to the necessary level? I often ask athletes when they want to make a change if they should focus on thinking differently in order to change what they are working on or act differently. The answer, I believe, is do both. As an aside…this is especially true for developing confidence.

I now have reduced the number of feedings from 5 to 3 per day. Now I realize that this is not going to be as linear from here on in. You can push yourself to eat 800-1000 calories to replace 2 feedings but moving to 2500 calories a day by mouth requires a health throat, an appetite, salvia, taste buds, etc.

Another improvement is my energy management is getting a whole lot better. This isn’t rocket science. I needed more rest/sleep then I was getting. Like many of you I was so used to functioning at low levels of energy, fatigue, that I didn’t realize I needed much more rest. Everyone in the cancer world from my medical crew to all the books we have read talked about the need for more rest, more sleep…and that this will go on for a long time given the impact of the radiation on the body. I think I may have finally ‘realized’ it…that is it has become real for me. I started sleeping an hour in the afternoon and it makes a huge difference in how I feel and function later in the day. Evenings have gone from being rough at times to fine. Had a meeting at 7 PM this week, added a second nap from 6 to 6:45 and was able to be fully present and energized for the 2.5 hours we met.

Have started walking after breakfast as well. Boy, am I out of shape! I get winded going up a small 1% grade and Sandra is forever slowing down for me…don’t go there…I can hear your snide remarks about how that’s also true mentally, etc. Weight remains the same… I don’t have any… so walking in the wind requires that Sandra tether me to her with a leash. Still, I’m starting to get at it. Doctor doesn’t believe at my age I’ll gain back all of the weight… I need a new wardrobe as shorts, for example, that fit perfectly last summer now look like billowing bloomers. You younger folk will have to look that one (bloomers) up. Enough foolishness…we’ll see you next week. Thanks for being here and the comments you have sent me are wonderful.

Warm Wishes,

Peter

Finally...

Greetings and sorry for the delay in posting this blog, I had every intention of doing so upon my return from the cottage Sunday evening but my computer had other ideas. After much gnashing of teeth and assistance from my son Dane is very clear that my hard drive has crashed. Another item to add to today's to-do list.

The cottage was great in that we were there with my son and his wife who are heading to England for two years in a few weeks. There was much to be done on the property and they, as well as three of my neighbours were a tremendous assistance. There were two docks to put in, a tree in the water that had to be removed that the beavers had cut down and much weed eating and cleaning up to be done. As much as I enjoyed the weekend is very clear to me that the cottage is not the place for me to be at the current moment. Not only did we have to take up a ton of stuff to support me but our general water supply comes from a lake and I need to sterilize everything. There is also the question of my being able to control my urge to do more because, at the cottage, there is always more that can be done.

The week, as every week seems to, had its ups and downs. The downs are all around food consumption. I express and have a desire to take food by mouth and yet when even a small amount is put in front of me I often fail to finish it. There are a lot of reasons for this including lack of saliva, discomfort, things not tasting normal, and the fact it takes forever to consume even a small amount of food. I'm hoping to get some answers or at least direction on this issue this coming week. I have a meeting with a friend of mine who has been through this to pick his brain as to his experience and, on Tuesday of this week, I meet with my medical team at Princess Margaret Hospital for the four-week follow-up. Among other things they will be putting a camera down my throat so I’ll get some idea as to its condition.

Had some visitors this week and they all say pretty much the same thing... I looked great and am further along than they expected and my voice appears to be pretty much back to normal. This is wonderful feedback and very welcomed. I met on Monday with a speech therapist. She has given me a series of exercises for my throat and tongue to help break down scar tissue and move back to more normal functioning. The only disappointment is that I have to actually do exercises on a regular basis. I have to start incorporating them into my plan this week. Here's one you can try at home. Stick your tongue out as far as you can, bite down on it, now swallow five times. There's a workout!

Time for me to close up here and get this posted before it runs into next week's blog. Thanks once again for all the support and encouragement.

Still alive but computer crashed

Blog update June 5

A week of improvement with but a few minor setbacks always caused by me and the ‘get things done’ driver part of my personality. I have not yet reached any truly accurate self-view of what I can do physically and how far that is from the norm. On Wednesday, for example, I felt very good at 1 PM, after morning vitamin IV, so I decided to go and hit a few golf balls at the Donalda club, 10 minutes from my house. I thought I was reasonable in hitting for about 30 minutes but an hour later I was completely bagged and set myself back for the rest of the day. Last week I got in a battle with a section of my garden, drove through the work as I would have BC (Before cancer) and really wacked myself out. It will take a shovel across the forehead, about 5 times, for me to get this lesson…by the way…hit the balls surprising well!

On the food front…no big Macs but ¼ cup of cereal with milk and 10, yes 10, raisins…it’s coming. Had a scrambled egg with some cooked carrots on Thursday. My friend Peter Oliver, a restaurateur here in Toronto, heard I could handle creamy soups and needed to gain weight. He arrived at the door with large containers of soup made with potatoes, leeks, and numerous healthy items including 35% cream. I have enough to feed the Russian army. He also brought crème brule, a health nut’s favourite!

Another friend, Paul Comper at the Toronto Rehab centre has found me a speech therapist who has sent me a series of assessments and questionnaires. I see her this coming week.

Have the twins coming this Sunday, they were also here yesterday, as we will celebrate their 2^nd birthday. Grandpa is off to Canadian Tire later this morning to get 2 tricycles complete with bells.

Sandra and I have started meeting daily around the company and getting our heads back into what is happening in the enterprise. Our entire team has really run with the ball these past 4 months leaving us free to deal with the matter at hand. It’s time for us to reengage slowly and at least get familiar with what’s happening at PCI.

Lots of emails and calls this week from so many of you… support is a wonderful thing. Some one said years ago that you have to do it yourself but you don’t have to do it alone. I really get that now. Thank you.

Peter