I've got Lady Luck on my side!

I tried to party as much as I could before treatment started up again! Happy Halloween!

This Ass is kick'n Ass and takin names!

The coordinator called today to tell me the November start date she gave me last week was tentative (bullshit) and that we are just going to have to start November 12th (you’re an ass) and that’s just the way it is (I'm going to kick your ass) so we shall see you on the 12th (Sucks to be my ass!).

She saw me the very next day “surprise” here is my list of demands. In a round about way I put it to her that I was going to accept the November 12th start date (like I had a choice) quietly but that I really wanted a new CAT scan to assess where my disease is currently at and that I also wanted my permacath put in ASAP before all the needles started.

I want to see if my cancer has grown or spread since my August results. If so I don’t have any problems throwing the word “negligent” around to the hospital administers and anyone else who needs to know. It’s about time I start looking out for my own ass!

Who's the Horse's Ass now?

After my September meeting I didn’t here from anybody at the hospital about a start date, but I didn’t call them either. I knew that we had agreed that I would start mid-October, but calling to ask exactly when I start was really hard for me. It was like calling to book a flogging, no thanks!

I waited about a week after returning from Toronto expecting to go into treatment anyday and then finally called the BMT office myself to see what was what. The coordinator told me that since I had asked for a second opinion at another hospital I had been taken off the BMT list because I wasn’t considered “committed” and they were now scheduling for end of November. That’s total bullshit and I had a series of meltdowns over several phone calls back and forth.

The only reason my doctor agreed to refer me for the second opinion was because I made the case that I was still committed to going ahead with the treatment here and I just really wanted to know what the protocol was like elsewhere – but that unless they had margarita service by men in Speedos at the other hospital, I was going ahead here mid-October. And in-fact you are not allowed to have treatment in another city that you do not live in provided the city you live has the proper facilities – which mine does. So everyone knows I can’t damn well have treatment anywhere else.

I think they screwed up and tried to place the blame on the patient; which the coordinator did a great job of that telling me that I aught to have known this would happen and pointed out the original delay from October 1st to mid-October was mine. She played into all my fears as I sobbed over the phone that no one told me this could happen otherwise I wouldn’t have done it, every day my cancer is growing, what if this delay affects my outcome – my god what have I done.

Well she pulled out the “that’s right you screwed up sweetheart card, but I'm gonna help you out” card and managed to squeeze me in for a November 6th start date. I thanked her profusely for saving my ass. Only after a day of shaking and crying did I start to recall the September conversation with my doctor and the things other nurses had said and realized this was a booking error, not a Tam error. That coordinator was the one that got my ass into this situation, and now I feel like an ass for thanking her when she “fixed” it.

But that doesn’t change anything, if there’s no room at the inn, there’s no room inn. So I wait… but now I'm pissed… I wish I could kick some coordinator ass!
Ass, Ass, Ass!

Costly Opinions

Mum and I drove to Toronto for a second opinion on my proposed treatment outline here in Ottawa. The drive up was fun in that I got the special edition CD of Sergeant Peppers Lonely Hearts Club Band to sing along to for the drive.

The Princess Margret Cancer center was pretty swanky, but packed full of people which always makes me sad that so many are afflicted with cancer. The doctors that I saw were like the designer guys and they had pretty much the same thing to say as the doctors here, but with way more style and flair!

One thing they did mention was that my CAT scan from Aug 25th is now out of date and I really should have a new one to get a current picture of where my disease is at before I start my treatment. I'm not big on extra radiation, so we shall see what the doctors here have to say about that.

Driving home the following day it was a perfect Fall day so we took the old hwy through all the country and stopped in one town for a massive Fall Fair. We both love Fall, fairs and the smell of barn animals (ha!) so it was to be the highlight of our trip. Sadly the hwy patrol officer that caught Mum doing 55 over the speed limit (and failure to show insurance) kinda soured the day and trip budget.

Revenge of the ChemoBrain - Part Duex

I came home today to find my Mum opening a package; a gift from my Aunt. I said “that’s nice, why did she get you a gift?” I just burst into tears when she said it was her birthday tomorrow. I was so upset, embarrassed and angry. Not only had I forgotten her birthday, I couldn't even remember when it was even when I tried to think about it. The information was just gone, it was as if I never had it.

I'm forgetting very basic fundamental pieces of information all the time now. It’s very scary.

Two days ago I drove to the bank to pay my monthly line of credit and forgot my pin number. I tried everything I could think of, which only managed to shut down my card. Yesterday I had to go into the bank and explain why I couldn’t remember my own pin to get it reset. On the way home I couldn’t remember how old I was, and had to seriously think about whether I was 28 or 29.

It's time for Lymphomanics!!!

I haven’t been blogging for awhile, but I have a couple posts to put up to fill in the blanks - coming soon. I didn’t completely abandon my cancer world, I was just focused on other aspects of it for awhile.

Last year I joined the local LSGO (Lymphoma Support Group of Ottawa) and after attending a couple of their meetings I volunteered to do a couple of things for them to get ready for the following year of meetings; like putting together their monthly meeting flyers to post in the hospital. I have also been working on putting together a proposal to start a young adult chapter of the LSGO called Lymphomanics.

The group will meet quarterly for an informal social, or meet & greet if you will. The goal is to create a setting where young adults (a major demographic for Lymphoma patients, especially Hodgkins patients) can get together in a ‘no-pressure to share your feelings, be bombarded with medical information, try to identify with 60 year old patients or listen to stupid lectures environment’, and just get to know someone else who is going through (or gone through) the same things you are. All this in the hopes that people will exchange numbers or emails and keep in contact with each other for support.

I don’t know about the rest of the world but here in my neck of the woods it is very hard to find another young adult with Lymphoma to identify with, it’s all old patients, doctors, nurses and therapists! I need someone who understands about losing my hair, my identity, my social life, paying bills, not having insurance, gaining weight, feeling like no one will ever want to have sex with you again and watching all your friends lives progress around you. A ‘60 year old married man, with grown kids, grandkids, income, pension, savings, insurance, stopped having sex 10 years ago and didn’t have any hair to speak of anyways’ is just not going to get my cancer woes.

Young adults need to support other young adults the way we wish we could be supported. So that’s what I’ve been working on:)