It has taken me quite a while to find the time and energy to update this blog. There seems to be endless doctors appointments, treatments and tests and application forms to complete. Not the greatest way to spend time but I know it will make me healthier in the long term.
I am now halfway through my treatments. I start the third of a four part treatment cycle this Thursday. There is a possibility that these chemo drugs may not be working and that the cancer may be spreading. My oncologist is very confident that if that is the case she has other drugs that may be more effective. She had found what she thought were new spots on my right lung and wasn't sure if it was pneumonia or spreading cancer. So I was prescribed a round of antibiotics to see if that would make a difference. I also had a CT scan last week to check on the new spots and will get the results on Wednesday. I'm keeping my fingers crossed that it was pneumonia and not spreading cancer.
The treatments haven't been too bad. I find myself getting very fatigued for about two weeks. The nausea isn't what I expected. There may be about five days where my stomach churns and rumbles. From what I hear from other folks' experiences I have it pretty good. My breathing has gotten somewhat worse and I have oxygen at my disposable to use as needed. To date I haven't used it very much since it doesn't really seem to help. One of the goals of the chemo is to improve my breathing so I hope there is a change soon.
With the limited breathing capacity and fatigue I find that I have lost a lot of independence and mobility. I find myself getting quite frustrated when I can't do the things that I want to do like clean out a closet or run to the store to get something.
The most frustrating thing I have done so far is apply for CPP Disability benefits. It is a requirement of my long term disability benefits to apply for whatever CPP benefits I may be entitled to. Of course most of what I would be entitled to will be clawed back my my insurance company. So for about $200 a month that I may get on top of my LTD, I spent about two weeks gathering information and filling out forms. I couldn't believe the kind of information requested. For example, I had to list every doctor I saw in the last two years, their speciality, address, telephone #, what I saw them for and the dates I saw them. Now I had been trying to find out what was wrong with me for about two years before I was finally diagnosed so consequently I saw a ton a specialists. I had most of the appointments written in my day timer so that made the task a bit easier for me but it was still a challenge and I even thought about getting an advocate to assist me. However, I consider myself a fairly highly functioning individual and have had experience in my work life assisting people to do these type of applications so I would feel guilty using an advocate when there are so many other folks whose needs are much greater than mine. It was the fatigue mostly that made filling out these forms so onerous. Filling out an application that is 21 pages before the doctors portion is exhausting especially when you are ill. I can't help but wonder how difficult it must be for others who don't have the skills, energy and time to complete these applications. Many don't know how to navigate the system or how to access the information required and there could also be language barriers as well. I find it amazing the hoops that one has to jump through to collect from a plan that we have contributed to our entire working life. Surely a medical report from your doctor should suffice to qualify for benefits. Something needs to change here.
Since I last posted I have had some really wonderful times too. A dear friend visited me from Nova Scotia and I was thrilled to spend some time with her. Visiting with friends is a real pleasure for me, it lifts my spirits and energises me. Friends are the greatest gifts and if you're around, please give me call and see if I'm available for a visit. If I don't have the energy to answer the phone, leave a message and I'll get back to you when the energy level is higher. I now have a webcam so if you do too, let me know and we can have a virtual visit.
We had a lovely Thanksgiving and Liz, my vegetarian daughter, cooked the turkey dinner. This was the first time in 43 years that I didn't cook the Thanksgiving beast.
I am really looking forward to Christmas and Amber's arrival. I expect the season to be a bit more low key and cosy this year. I will have just finished my last chemo and expect my energy levels to be quite low but everything will be quite lovely as long as I have family and friends around.
I feel so good today and I believe it must be because of all the positive thoughts all of you are sending my way. I do appreciate all the emails, phone calls and letters. I think of all of you often and am thrilled when I can actually give you hugs.
Thanks for all of your patience. Hugs and cheers and positive thoughts. I'll let you know the results of the CT scan on Thursday.
Alayne
