remember us?

I just checked the date of the last blog - 20 days ago!! Wow! It has been a very busy number of weeks. The daily trips for radiation continued until Oct 8.  My sister and brother in law came to visit for a few days. My brother and his family and Callum's brother and his family, along with Vanessa and Stuart joined us for Thanksgiving. We bought a MacBook and a treadmill. Jamie and Callum's brother Alan are here now for a visit. We booked a trip to Scotland. I wrote 2 grant proposals, prepared for a board meeting and attended the AGM and conference for our major funder. I had one day off in 2 weeks. I got glasses - yup - glasses!  Callum has had one more cycle of chemo. We had some "uncomfortable issues" with our cleaning service so we had to let them go. We hired a someone to clear our snow (thank goodness we don't have them yet!).  And, I am tired. Why do I always write when I am tired? I don't really know.  I have decided to take Monday off and have 2 days off in a row. Maybe a little "recharge of the batteries" to get ready for the next cycle of chemo. It seems that Callum is still having some side effects of the radiation as he has been quite tired - even until today. He didn't go to work until Thursday and spent only 1/2 day there. He was at work until about 3 on Friday but was quite tired the rest of the day. We sure hope he has more good days after this cycle coming up.  He still stays positive most of the time, but certainly has been quite frustrated with feeling so tired and not well for over a month now.  And he gets quite grumpy when frustrated......I have learned to bite my tongue a lot! It is kind of a new skill for me :) 

We are both still working at this point. We will see how the next couple of cycles of chemo go and see if it is getting time to look at cutting back at work and taking more time to be at home. I am sure Callum gets a little stir crazy when he is home alone so much. And he has been marvelous about cooking, but it seems that more often he gets nauseous when cooking so I may have to do a bit more of that. It has been wonderful that we haven't had daily trips to the cancer clinic. 

We just got our treadmill yesterday so haven't had a chance to really try it out. I am looking forward to getting back into some exercising and having it at home. No excuses now! 

And, now some words of wisdom:

Inner Strength

If you can start the day without caffeine or pep
pills,

If you can be cheerful, ignoring aches and pains,

If you can resist complaining and boring people
with your troubles,

If you can eat the same food everyday and be
grateful for it,

If you can understand when loved ones are too busy
to give you time,

If you can overlook when people take things out on
you when, through no fault of yours, something
goes wrong,

If you can take criticism and blame without
resentment,

If you can face the world without lies and deceit,

If you can conquer tension without medical help,

If you can relax without liquor,

If you can sleep without the aid of drugs,


THEN YOU ARE PROBABLY THE FAMILY DOG

TTFN

Lorna

Going....Going.....Gone.....again...........

Well, the radiation has done what we were told it would - Callum starting losing his hair this weekend. It is nearly gone again - just a couple of tufts and strands here and there. His hair had started growing back when he was off chemo, but it wasn't that long or thick this time, anyway. He said his head is getting sensitive - it will be a bit sensitive from now on. He is still quite tired although today he made a great Sunday breakfast. Alas, by the time it was done he was quite tired. Thank goodness he will rest when tired. He is getting quite tired of being tired. He seems a bit down today - feeling like he will never feel better than he does today. Only 3 more radiation treatments, thank goodness. Then a week off before chemo starts again. I never thought I would ever long for the regular routine of chemo....but I do. It is tiring just having to be at the Cancer Centre every day - and I don't even go with him every day. It just wears on you and provides a daily reminder of what is happening to his body. It will be nice to have a few days of not thinking about it.
We have had a quiet weekend which has been nice. I have been busier at work again so I am enjoying the time spent at home. Callum has been quite interested in cooking. He has spent many hours this past week reading cookbooks and finding delicious recipes to try. It is nice to see him interested and looking forward to doing something. He has decided we will do some kind of meal for Thanksgiving. It is something that is really important to him. We will both have a brother and family up here along with Vanessa and Stuart, so it will be a nice little family affair!
It will be so wonderful when he starts to feel better. There are people who want to visit and trips we want to take, but he just doesn't want to "go there" right now as he thinks he is just going to feel this crappy all the time. I just wish he would feel well enough to look forward to these things. It is hard for me because we are trying to balance so many schedules and we have to make plans soon, but he doesn't want to commit until he knows he will feel better. I just don't think we will ever have the guarantee about how he will feel 3 months down the road - this is one of those "leaps of faith" we will just have to take! It will all come together - I know it will.
Last week I picked up the packages for Canada Pension Disability and the Compassionate Care Employment Insurance. We aren't really that close to needing to fill out the forms, but thought it might help having them here and then we can work on them a little bit at a time.

I still find it hard to deal with complete opposite thoughts - plan for disability and death while remaining positive that Callum can beat this! It is a new form of brain gymnastics to me! This is one of the hardest things I have ever done. And we worry about very different things - he is so worried about me and how I will make out when he isn't here. I will be fine. I have lots of family and friends who will help support me. We are fine financially. It will be the first time I will have ever really been alone, but it will be OK. I tend to worry more about what happens between now and when he is really sick. It overwhelms me to think about him being really sick all the time - not just these few weeks here and there. I rely so much on his strength. I will need to find many new sources of strength so that I can share mine when he needs it!
I have ordered a treadmill - he promised me he will use it if we had one. And I need to get back to doing something and it needs to be easily accessible. Exercise is really the only thing he hasn't been doing that would really help him . I just can't seem to help him understand that he will need to do it for 3 or 4 weeks before he will feel the difference, and that it will help him get through the chemo treatments easier. He is quite fatigued, so I am sure he finds it hard. Hopefully the treadmill will help, even if he goes on for only 5 minutes at a time.

This has turned into a very long post. I suppose I should write more often. Sometimes it just seems to be hard to find the time and energy to stop my busy brain long enough to put thoughts together and write. Although, I am not sure this was the most coherent post I have ever written!

TTFN

radiation fatigue

I can't believe it has been over a week since I blogged. The radiation is taking its toll. Callum is very tired these days. The dexamethasone seemed to help him get over the nausea hump and he worked a couple of days last week. But he was exhausted on the weekend. He was a bit better on Monday, but was warned by the radiation techs that the fatigue will set in again during the week. And so it has. He had to have a nap this afternoon and was a bit grumpy before supper. He was much better this evening, though. He still gets a "funny tummy" every now and then, but is eating better. He will have a week of recovery between the last radiation treatment and the next cycle of chemo. He won't have chemo now until Oct 15. We ordered some Usana nutritional supplements that were recommended by the lead researcher at the Colorectal Cancer Association of Canada. They arrived today and Callum started on this buffet of pills at dinner tonight. It is quite a mixture but is expected to help lessen the side effects of chemo and radiation and help him feel better overall. The research is quite positive so we are sure this will help improve the quality of every day. It can take a couple months to get the full effect, but we hope it happens quicker for him. We met with Dr. A on Monday and mentioned to him that we were wanting to take a trip to Scotland, and wondered when we should be taking that trip - before or after Christmas. He recommended we take it sooner rather than later and suggested we do it before Christmas. We are looking at making this the family trip to Scotland that we were going to take about 16 years ago (better late than never?) and have Jamie, Vanessa and Stuart come with us. With all of our various schedules it is looking like we will be going in early January. This conversation led to a discussion about the change of life expectancy now that there had been cancer spread into the brain. Now, sometimes time frames are wrong and sometimes they aren't helpful. And there are some mitigating factors in this case such as the brain lesions were found quite early and the gamma knife is usually quite a successful treatment and would impact life expectancy. The bad news is that he said he would estimate Callum's life expectancy between 6 months and a year, possibly longer than a year. Callum is more determined than ever to prove him wrong and be here for a lot longer than that! We heard just this week of some new and exciting research about a potential cure - viral therapy. They are hoping human trials can start in 2 - 3 years and he plans on being part of that trial. Check out the story at http://www.colorectal-cancer.ca/ .
Callum's parents arrived on Sunday for a visit. It has been nice having them here, especially when Callum has been home during the day. My sister and brother in law will be here Monday for a visit, and then our brothers and their families, along with Vanessa and Stuart will be here Thanksgiving weekend. It will be nice to catch up with everyone!

I think that is all for now. I have been a bit tired this week since I was away at an art retreat on the weekend - I was the organizer, not one of the artists! It was a beautiful location and a great retreat, but I am looking forward to some time off next week. Time for bed tonight......

"May you LIVE all the days of your life" Jonathon Swift

TTFN