No big deal……..

[Originally posted on Tuesday, October 25, 2011]

I am constantly surprised to hear people say things to me that I’ve never heard before. For instance nobody had ever told me I’m courageous and up until all this started I’ve never been told how tremendously strong and positive I am. All this adulation is so nice and unexpected if not a teeny bit weird. I mean isn’t everybody that goes through something like this courageous, you don’t have a choice really do you?. For me it’s just the struggle to maintain some sort of normal life that is hard. I think I’m good at pretending none of this is really happening to me.

I was at a pumpkin party over the weekend and we happened to get onto the subject of eye balls (doesn’t everyone) spooky stories were being told, so I related the one about my Grandmother who walked into a saucepan handle and popped her eye out onto her cheek……”oooh” the kids said with glee. Yes but the best part of the story is that she went to the bathroom, looked in the mirror (with the good one I suppose) and put the thing back in its socket then carried on making dinner. To my surprise my friend said ” Well, that’s not hard to believe if it was your Grandmother ” Really folks, I am pretty sure I could not do this.

I sometimes feel as if I am wearing a superwoman cloak but really I’m just the same old me underneath, seemingly still able to laugh at myself in all these crazy situations really is probably my biggest asset. What I think I am trying to say here is thank you for thinking so highly of me. And anyway you all just wait till I have my meltdown and become the sniveling baby I know is lurking somewhere under that cloak.

This is a picture of my Grandmother, Jessie was born in 1880, a strong working class woman who loved to dance and worked at the Cadbury chocolate factory in Birmingham. She had a penchant for hats…..very bizarre hats if you ask me.

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The Good, the Bad and the ugly…….

[Originally posted in October 2011]

I feel a whistle coming on as I sit here typing from my bed, yes my bed and on a workday too,”oh good grief” I hear you say “what’s she done now” well I’ll get to that in a minute. First the good news…. I think I’ve cracked the dreaded bag leaking problem. Hooray for me! this is such a relief, my sense of fear at being caught unawares in a public place is starting to dissipate with each  leak free day that passes and it’s been over a week now. (hope all this bragging doesn’t jinx it)

As the weather has been so beautifully autumnish with still a little heat from the sun, Peter, who agreed to be my garden slave for a day, worked in the yard with me on Tuesday. Mostly moving compost around the beds and weeding. This was probably the most strenuous work I’ve done in the garden since April and boy did it feel good. I awoke on Wed with nausea and my tummy feeling a “bit off” thought it would pass and went to work. As the day progressed I started to realise that I was getting a very specific pain just to the right side of my stoma….it got worse. I found myself actually confessing to my client that I was in quite a bit of pain and worried I might have a blockage of some kind. On her insistence (thanks again Jen) I called the surgeon’s office and talked to the nurse, who talked to another nurse, who talked to the surgeon who called me. After I finished my client at 4.45 I jumped in a cab and went to Swedish hospital. Thanks to Dr B I was able to just run up to his office and see one of his partners immediately and (thank goodness) did not have to go thought the emergency room. After hoping on the bed and tearing my bag off, I point to the spot that’s causing all the pain. “right” he says “Nurse, KY jelly please” I gave him my puzzled look. “ah, I know this is a bit weird but I’m going to stick my finger into your stoma” Holy macaroni! if that didn’t hurt. So it turns out that I have a slight herniation of my small intestine. Can I just say….Bloody Hell!!! No more gardening for me for a while.

Now  for the ugly bit, I have a new side effect from the chemo. It;s called simply, Hand and Foot syndrome. Because the chemo is killing those fast growing cells in your body it sometimes leaches out of the capillaries in the palms of you hands and the soles of your feet, where cell turnover is rampant. This results in extreme tenderness and even blisters and peeling skin. So, last Saturday night when I found myself limping to the ferry I had a sneaking suspicion. Sunday was worse. My feet felt as if I’d walked ten miles barefoot…..over hot coals!! Monday I called the Doc and was told to stop the chemo at once. I’m on my off week now and it has gone away completely but with so much more chemo to take I’m not sure how I combat this little problem that’s bound to crop up again. Less chemo maybe? One can only hope.

Thanks to all my clients that moved their appointments today and allowed me and my hernia a day off.

Trial by POOP!…….

[Originally posted on Friday, October 14, 2011]

Well honestly, this is now an established part of my life. The Poop factor……I am sure that ostomy patients the world over have these same trials and tribulations but it seems to be a huge hurdle for me to over come. How many disasters does it take before I get the flippin’ hang of this. Of course you know of the frightful ferry fiasco, but there are more. One right in the middle of a foil for God’s sake ! I am getting better at presenting a calm front as I don’t leave home without a spare bag these days, but it just seems as if I am a total incompetent. Now that I’m back on chemo, coping with diarrhea is just part of it, problem is, these bags are not designed to cope with lots of fluid (oh brother, do you really want to read this?) so it’ll just starts to seep out the sides….lovely! when this happened at three in the morning I was hard pressed to see the funny side I can tell you, but my husband appearing stark naked at the bathroom door looking worried certainly helped. I know you are all thinking the same thing……what are you doing wrong Tina? Well it’s not that simple, there is a learning curve to this. There are two parts to this contraption. The first (the wafer) has a hole in the center to be cut by you to the exact size of your stoma (the bit of my intestine that protrudes out) and then it fits snugly over that and is stuck to your skin with something akin to super glue (no moving it about once it’s on). I’m told to make it a tight fit, ok but how tight is tight? If it’s too small the poop can’t get through the hole into the bag (that causes a leak) and if it’s too big the stuff touches your skin and burns it off.  I seem to get a good fit about every other time. I also have to fill in a couple of skin divots with some paste not unlike window putty and then there is the powder to be sprinkled on and barrier lotion to be wiped over the powder….see the frustration? Poop used to be something that was never inspected, it was delightfully whooshed away out of sight out of mind. As I have never had any babies to change, dealing with poop at this level and all the time is new to me. I’m sure all you Mums out there are rolling your eyes and saying ” Aah yes we remember it well”

Tina’s life goes to pot!……..

[Originally posted on Sunday, October 2, 2011]

I thought it was time to delve into the medical marijuana scene, I mean after all, it is legal here and you never know just what a difference this little plant might when suffering from the effects of chemo. Over the years, I have heard only great things about the benefits from people who claimed that it was the only thing that really and truly got them through the dark days of nausea….so why not have some on hand?

Step 1, Where to get it….. A friend who works in the medical profession gave me the name of a place in Tacoma that apparently has a good reputation??? I then made a tentative call, asking what I would need to score some premo bud…no, no of course I didn’t say that. I was told to fax over my case notes. Feeling very unsure about asking my oncologist for permission to acquire said notes I chickened out and asked his nurse instead. So, with a “Psst” and a beckoning finger towards a dark corner, I persuaded her to get my case notes printed off for me. Why I feel as if I need to behave in such a clandestine way I just don’t know but I do.

Step 2,.Who the heck has a fax machine anymore? Well I certainly don’t, but we do have one at work…..OK, more whispering around corners, because I need help with this too (gosh I am pathetic) Anyway, my case notes are whisked away and within 10 minutes I receive a phone call basically saying “Yes, we think you are sick enough to qualify” Now I have an appointment 🙂

Step 3, The office visit. I’m not sure what I expected. Maybe guards posted at a gate topped with razor wire, What I found was a very small unobtrusive building in an industrial area of Tacoma called Rainier Wellness Center. The small parking lot was jammed full and I had to wait for someone to leave before I could park. I found myself getting nervous. I hate to be late. Ha, I needn’t have worried on that score as I had to wait over and hour (the place was packed) to be called up, and that was just for a photo for my (tamper proof) official medical marijuana card. At last I am ushered into an office and told to take a seat at a large desk. As I go to pull out a chair I’m told “oh no not that one, the view is better from this one” Huh, what view are you talking about? All becomes clear when I am face to face with a large computer screen and told that the nurse practitioner will be conducting my interview via skype from……….Hawaii??? ok,whatever, he was very nice and we talked for 15 minutes about my symptoms and what the pot might help with (appetite, nausea, sleep and pain) and off I went to…the dispensary.

Step 4, Knowing what to buy. The young, and I’m thinking early twenties here, girl asked me if I knew what I wanted. I smiled ” I have no idea” In front of me were about twenty large Mason jars full of different varieties. The names on the jars were hilarious, for example there’s the AK47, Casey Jones, Power Plant, the Vortex and Paradise. She asked what kind of high do you like. Jeez Louise, how do I answer that. I said the only thing I could think off “Well, I like a good giggle” She gave me that sad “oh Lord, a rookie” look and proceeded to recommend some of the “Lighter” versions. I left with my brown paper lunch bag stuffed with 5 different samples, some lotion (not sure what it’s for but it smelled of mangos) a tincture, for when smoking is not available and I drove home wondering what would happen if I got stopped my the police, God I’m such a worry wart.

Step 5, Clinical trials. My honest opinion on this subject is that… It’s great. He he he.