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Cancer Support

Hi Everyone,
I will be running in the Run for the Cure this weekend in support of Cancer research. Although Kathleen has duodenal cancer and not breast cancer, it doesnt really matter. The support here will help people like her in similar battles. And frankly, the medicine and knowledge engaged in Kathleen’s current fight has been made possible by people years ago, making similar donations. So please donate in Kathleen’s name. There are a lot of people afflicted with this awful disease now and in the future. You can click on this link to go to her site at the run for the cure and make a donation in her name.

This past week has been a pretty tough one. The CCAC decided (without asking us) we needed more specialized care at home, so they changed the nursing team on us. This partially seemed automatic (due to the new diagnosis now having distant metastatic spread), and partially because we were just punted to a new case worker. We generally dont interact with the CCAC directly, so a new case worker didnt really matter. But the change meant losing Maggie, our “super nurse.” I would say all the nurses we have had were at the very least good, and some great. Maggie however, was an 11/10. Resourceful, skilled, professional, a problem solver, experienced, kind, friendly and just a really great person to have in our lives, not to mention trust with Kathleen’s life. So to lose her and go to someone else was tough and felt like we lost a leg in our supports. Plus, as part of filling out all the insurance forms, we got to look at her oncologists’ reports. Although technically there was nothing new in them, to see it all together in black and white in 6 detailed pages… Well, it was a real kick in the gut. Combined with the nursing change, where the case worked called me (not Kathleen as if she was incapable of speech) to inform us after the fact that we were now getting a Palliative nursing team.. HANG ON, PALLIATIVE?!?! Yes, it felt like they were one step away from “Grave or Cremation, sir?” ..Technically I was told Palliative is not end of life, its… Well, here is the Wiki def http://en.wikipedia.org/wiki/Palliative_care. Whatever. You would think they would be a little more sensitive about throwing around a word that in the vernacular means end of the road even if technically its not… OK, so they didnt mean it that way, fair enough. But all these little things made for a very tough emotional package to digest this past week. Some days it all seems so dire, some days not…

Speaking of Roller Coasters, on the somewhat plus side, we heard from Kathleen’s insurance agency that they will pay for her Avastin treatment. This is a different type of chemo drug that works by stopping new blood vessels from growing. Its good in 2 ways that its covered. One, it costs $40k. So for us not to have to pay that. Well, thats nice. Two, the fact that her insurance will pay for it means that they think there might be some benefit. As this is an off label treatment, they could have said, “well, she is a gonner, so we are not going to waste the forty thousand on someone who is going to die soon anyways.” OHIP only covers drugs which have a demonstrated efficacy. As there are no studies on Kathleen’s cancer, no one really knows if it works. But since this is lumped in with colon cancer, the doctor thinks its reasonable to try…. So, just as she was getting used to the FOLFOX side effects, there will be a new one to deal with and she will push on forward…. It feels like we are skipping to Mordor.

 

Although I did do most of the eating, it was great to see Kathleen pick at some of her food at her fav Thai restaurant .

—Mike

About In the Cancer Bubble

I am Kathleen's partner of almost 25yrs supporting her through this very tough and rough spot.

8 responses to “Cancer Support

  1. Bonnie Sowiluk ⋅

    Good to hear about the help from the insurance company. Kinda sucks about changing you support group but change can be a good thing, like Kathleen aways tells me. Step up, you don’t know what you can do unless you try. (so far its worked for me girl). Thanks for doing the run MIke, a good cause all around I hope you have good weather. I love the picture of you two together, makes me all warm and fuzzy 🙂 Continue with the good fight and we will talk soon. Love and hugs: Don and Bon

  2. jacquie and mike ⋅

    Hi folks,
    What a wonderful picture of you both. You are always in our prayers.
    love and hugs to you both.
    Uncle mike and jacquie

  3. Maureen ⋅

    Mike and Kath,
    I hope your new support group is really awesome and Avastin does a great job at kicking cancer’s butt. You both look great.
    Good luck in the run Mike.
    Sending hugs and love to you both,
    Mo

  4. Muriel Omand-Naylor ⋅

    good picture o f you two!
    about the change in nurses. Sometimes it’s worth sharing your preference to have Maggie back on your team.you may not get her, but if you explain why, they may reconsider.Might be worth a try. sending positive thoughts your way.

  5. judy ⋅

    HI Mike and Kathleen,
    Nice Pic of the two of you at the Thai restaurant. Good news about the $$ approval of the Avastin and that there is hope of it working. There are some definite plusses to the Canadian medical system! However, some bureaucratic downers like the unnanounced nurse team switch. Send photos of your run.
    Love JUdy

  6. Deanne Croft ⋅

    Hi Kathleen – I was just replying to an email for IWD as we are getting prepared for the next event (well, at least the wonderful committee chairs are working hard already!) and thinking of you as I often do. I barely got to know you on that committee but I was so impressed with your talents on the raffle!
    That is a terrific picture of you and Mike – I was happy to see you out and about and I hope you were able to enjoy some of the meal.
    I hope your next care team exceeds your expectations and that the change is not too disruptive for you and Mike.
    I am so hopeful that this new chemo agent will be the one to get your disease under control – and that it is not too hard on you.
    Sending you warm thoughts Kathleen & best wishes to Mike in his run.
    Deanne

  7. Lynne ⋅

    Love the picture! Think hug,
    Lynne

  8. ~ Jill ⋅

    Dear Mike and Kathleen,

    The photo of the two of you is really lovely. It is just so nice that you make precious time for each other. You are two very special people and one very special couple.

    As someone who has volunteered with the Run for the Cure for many years, I can only say that it is an inspiring and powerful event both in terms of the many people who participate as walkers, runners … men and women being assisted in wheelchairs, four-legged friends, supporters and survivors and a whole host of volunteers of all ages. The money raised towards research for finding a cure is astonishing. While I am not able to volunteer at this year’s Run for the Cure in Ottawa I will be back at it next year for sure. When I think of a cure … I think of a cure for cancer as a whole. So well done Mike on behalf of Kathleen. I will be travelling to Cambridge this Saturday with my Dad and we Legaults will be thinking of you both . Sending big hugs and our very best wishes.

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