Using your Support System

Tuesday, November 30, 2010

Yesterday we had our fifth Woman’s Metastatic Cancer Support Group meeting and the discussion centered on support by family and friends. We talked about how you have to put some thought into asking for what you need. Also, unless we are open to accepting help, we may lose out on offers of help.

So G said her freezer is full of casseroles brought by friends and family. The problem is, her appetite is terrible and so the food just sits. Now she says, when someone offers to bring food over, she’ll ask what they are having for supper. If it’s not something that interests her right there and then, she’ll say thank you but not tonite. Of course everyone’s personal situation is different. I don’t think she has a spouse or children at home who might otherwise appreciate a home cooked meal.

At this point G was on a roll … She told the story of how an acquaintance called and said she was coming over with flowers. G said instead of flowers, what I really could use is a coupon for an inside and out car wash. There were a few chuckles and we all agreed that was a great idea … she then said, now, if I could only find someone to go with me and stand at the pump and fill my car with gas, I’d really be happy.

Now there is one woman who is using her support system very well.

What am I going to eat today?

Monday, November 29, 2010

Each day brings with it a slightly different challenge when it comes to my stomach. I wake up every morning and think what am I going to eat today and how much? And I’m still sticking to simple foods that lessen the cramps in my stomach.

For two weeks now I’m either trotting or stopped up for two or three days at a time. Last week, it was day two without a bm and I said to D should I take something for constipation? He thought no, you haven’t eaten enough to be constipated, wait one more day.

The next day I felt so good that I ate a very plain 6 inch sub sandwich. I guess I wasn’t that good because the trots came shortly afterwards. It was probably too much at one sitting but I was just so hungry for normal food that I didn’t want to stop.

For BC Survivors Traveling by Air

Sunday, November 28, 2010

If you have any hidden medical devices like a breast prostheses or a port and are planning to fly, you may want to read this post. Canadian airports have full body scanners and pat-downs but not the issues found in the US. So when you’re traveling south of our border, beware of what’s happening and prepare yourself.

The buzz about the TSA passenger screening at U.S. airports all started after a woman declined to do the full-body scan because of radiation concerns. She was then given the option of a body search instead. Things got uncomfortable when the female agent discovered her breast prosthesis and asked her to pull it out. Another case was where an agent poked and prodded around lady’s port so aggressively, it made it sore and uncomfortable for days.

So to help make air travel just a bit easier, Susan G Komen for the Cure put together some steps you can take as you head to the airport.

CT Scan Do-Over

Saturday, November 27, 2010

I had a CT scan on Friday and all when well except that I forgot to fast in the morning. I called and the receptionist and she said to come in anyway. Mid afternoon, after it was all done, I was feeling like everything was going to end up ok.

But noper - I got an email late in the day from my trials nurse telling me I have to do-over my CT scan next week. Darn it; I sort of suspected that they’d want a perfect scan because of the clinical trial drug I’m on. They’re more particular about what they want and how they get it.

I’m quite annoyed with myself for screwing this up. Trying to think back on what I could have done different. All I can say is that it’s been a busy week for me and I truly thought I had nothing scheduled after Thursday … obviously I was wrong. 

So now I’m gonna put notes all over the house reminding me that I need to fast the morning of my scan. Hope that helps this silly brain of mine to remember. I sometimes think I could sure use a personal assistant to help me stay on track with appointments and meds and such.

CT Scan this Morning

Friday, November 26, 2010

As D and I were sitting sipping on our morning coffees, he picked up my Droid phone and checked the calendar events for today. Hey he goes, aren’t you supposed to be having a CT scan today? Whaaaat? … I just finished my second piece of dry toast. I grabbed my folded up appointment list and yup, there it was, clear as day and I should have been fasting.

Anyways, in a panic, I called the clinic and they were really nice about it. She said that the small amount I ate is ok and will have moved along enough in time for my scan. She also said that I wasn’t the first one to forget … that made me feel less of a dumb bunny.

TED Video ~ Dr. David Angus: A New Strategy in the War against Cancer

Thursday, November 25, 2010

I first saw this video on fellow cancer blogger Duper’s blog at Ciao Cancer.

A bit about this 24 minute video …

Dr. David Angus, an oncologist, says the death rate of cancer has not changed significantly in 50 years. So a group of researchers are pushing forward with a new approach to treating cancer. They’re bringing in engineering principles and using cross collaboration with mathematicians and physicists to hammer out a cure for cancer.

What a jaw dropping video.



First Lunch with a Cancer Buddy

Wednesday, November 24, 2010

In 2009 after quitting Taxotere I started feeling better. Both Xeloda and Vinorelbine were much easier to handle and I was feeling like doing something more. I decided to volunteer with the Canadian Cancer Society’s - CancerConnection. C C is a one-on-one peer support for those going through cancer. After my initial training, I would be matched up with women who are having a similar cancer experience and once a week we’d discuss whatever was on their mind.

I did this for about eight months and talked to about six ladies across Western Canada. Unfortunately, I decided to leave earlier this month because my current chemo, Brivanib was giving me too many side effects. I just didn’t have the energy and especially the enthusiasm I felt I needed to continue doing a good job.

Anyways, yesterday I had the wonderful opportunity of meeting one of the gals I used talk to. We decided to meet in person once I left the CancerConnection. M lives about an hour out of town and came in to run some errands.

Finally we had faces to our voices … it felt so good meet her. We still chatted about our cancers and how we were coping with living with our cancer and how we both liked to quiz the Oncs, looking for more meaning in their words. I laughed and said; I used to watch the Oncs face when s/he’d say something and wonder why that eye brow went up just as they said that. Was this sugar coating or telling it like it is? Of course we both came to the conclusion that too much analysis is not good.

We enjoyed our nice lunch together and plan to do it again soon.

24 hrs in Review

Tuesday, November 23, 2010

After several decent nites sleep, Sunday’s sleep was just plain lousy… intense dreams and waking up every few hours. Arrggg! And to top that all off, I had to wake up Monday a little early to take my weekly prescription of ‘bone harder’ … 70mgs of Alendronate. It’s only one pill and it must be taken on an empty stomach and then no food for an hour.

After taking all my other meds and breakfast, I was not feeling well. I auto-posted my blog for 11:30 and went back to bed. I slept for over an hour and woke up feeling sluggish and even more tired. Ok regardless, I had to get up and get going because my mets support group meeting was starting shortly.

The weather here has turned cold -18C 0F. Fortunately for me, D offered to drive because I tell ya, having a driver to chauffeur me around has been just the best. D picked me up a couple of hours later and I was back home snuggling in my blanket. 

Last night's sleep was better.

Smoothies Really Help

Monday, November 22, 2010

At the suggestion of Angela, a fellow blogger at finding a way who said, try making smoothies to ease indigestion and eat better. This sounded like such a great idea; I went out and bought one of those Magic Bullet blenders. I selected this one because it’s simple to clean, has extra cups, it’s smaller than most others, takes very little room on the counter and the price is right. I’ve wanted to start drinking juice for quite a while now but found out that people who buy juicers often quit soon after because they’re not easy to clean and then the novelty wears off.

I started making smoothies out of the few items I was able to tolerate like banana, apple sauce and carrots. After this style of eating worked for me, I started to make new ones out of yogurt and cottage cheese. These all seem to be really easy on my stomach because it’s in liquid form.

I plan on adding things like berry V8, spinach, protein power, oatmeal, milk, peanut butter and other fruits and vegetables. Between Angela’s suggestions and Google, there is endless list of smoothie recipes out there including high protein one’s which I need. And what I don’t want to drink right away can put in the fridge for later. So far this smoothie thing is working out very well for me.

Shout Out to ~ Variety’s Power of Comedy

Sunday, November 21, 2010

Variety’s Power of Comedy event is taking place December 4, 2010 at Club Nokia at LA Live. Variety will bring together a talented group of Hollywood’s funniest comedians who, through their stand-up performances will raise funds for the Noreen Fraser Foundation. NFF is a charitable organization whose mission is to fund ground-breaking women’s cancer research.

Special guests include Russell Brand, Sarah Silverman, Bob Saget and many other comedians.

Humor not only serves to break the ice on a subject like woman’s cancer that can be uncomfortable but also reminds us all of the healing power of laughter.

For more information and to purchase tickets see their website at http://www2.variety.com/power-of-comedy/poc.html#buy


Coffee for D and Tea for Me

Saturday, November 20, 2010

Yesterday after D and I ran a few errands, we drove past one of our favorite coffee shops; D asked if I wanted to stop. Never one to pass up an offer to stop for coffee, yes of course. Being that coffee acts as a diuretic, tea was the alternative for me. Also, we passed up on muffins ‘cause I’m really trying hard to eat proper.

Anyways, while D was picking up the drinks, I scoped out a couple of chairs right next to the fireplace … real fire, fake wood. Oh well it still felt warm and cozy. That thing kicked out so much heat that we both took our coats off. The outside temperature these days is around -15°C 5 °F … brrr brr. The funny part was that my tea was on the hot side, too hot for these lips. D put my cup next to the window and it cooled down in no time flat.

We talked and nursed our cups for a good 45 mins and then left for home.

Digestive Issues Continue

Friday, November 19, 2010

After being diarrheic for a few days, I realized we didn’t have the proper foods in the house to help minimize the effects. So D suggested looking on the net and making a list of foods to eat for constipation and diarrhea. I came up with three lists to manage things a bit better:
  • foods to eat when diarrheic
  • foods to avoid when diarrheic
  • foods to eat when constipated
Who knew that if you are diarrheic you shouldn’t eat peas but eat carrots instead. So we went shopping and filled in the gaps in the pantry with things like white rice, soda crackers, white noodles and white bagels … all bland foods for managing the trots. We also picked up PowerAde to help replenish lost electrolytes and topped the list off with Imodium.

One thing I am doing right is to eat smaller portions and see how my stomach likes it and go from there. Something I am not doing right is shying away from fluids because I’m having trouble holding water.

The good news is that there were no cramps last night so something’s starting to work.

I Have New Glasses

Thursday, November 18, 2010

I’d been thinking about getting a new pair of glasses just before I was diagnosed with mets in 2008. For one reason or another I’ve put off having my eyes examined. Finally with the frustration I was having with blurry vision from the new chemo and my outdated prescription, I thought I better do something. So a couple of weeks ago I had my eyes examined, picked out a pair of glasses late last week and yesterday they came in.

When the call came, I had to go straight to the mall because I was feeling pretty excited about the look that new glasses would bring to my face. After they were on my nose and adjusted, I stepped into the mall to see the world.

Wow, I found things to be so much brighter and clearer … the Christmas lights and decorations were just so much more sparkly and alive. And the glasses look good on me too. 

During my morning cup of coffee, I could see the time on the mantle clock and my PC screen is really clear. I waited way too long.

Meds for Cramps

Wednesday, November 17, 2010

I talked to the nurse about the on again and off again cramps I’ve been experiencing over the past three weeks and she thinks its gas. In the past I’ve used Metoclopramide for relief from the effects of other chemos and that usually worked but I’m not having the same success this time with Brivanib.

So after three days with the trots, and then two days with no bm, I took two Senekot S and went to bed. Too late, I woke up around 11 with cramps and couldn’t sleep. So I got up and sat in a comfy chair and wrapped myself in blankets. This helped the cramping a little and I nodded off here and there. At 5 am I had the bm I’d been looking for. After that I found my way back into bed and had a couple of hours sleep before the alarm went off.

I’m going to give Metoclopramide one more try and take it exactly as prescribed, four times a day until I see the nurse in a few weeks. Otherwise, I’ll be looking for something else.

All Day at Clinic - How I metabolize the Chemo

Tuesday, November 16, 2010

Yesterday began a long day at the clinic; my Onc needs to see how I metabolize the chemo drug Brivanib over time. I was told not to take my chemo until I got there because they wanted to take my blood first. A nurse drew six vials through an IV in my wrist then took my bp and temp … both normal or near normal. Then I took my chemo. She repeated this twice over the next six hours.

As the day progressed, the trials nurse came by and I asked how my blood work was. She looked down and said where did your platelets go? My levels are 81 and should be at least 140. Platelets are the little guys that gather at a wound and clot blood. This not a big concern just yet.

We also discussed my high liver function numbers from two weeks ago and these tests show that they continue to go down, meaning the chemo is still working. Some numbers are now down to just being plain old high. Yahoo !!

My next blood work up is in two weeks, for just an hour.

Fluid in my Calves and Ankles

Monday, November 15, 2010

For about a week now, I’ve been having this thick feeling in my calves and ankles. I figure it’s a buildup of fluid also known as edema. It all feels tight … sort of like I’m wearing support hose when I am not and my legs feel stiff like boards.

Yesterday I noticed indentation marks around my ankles left from the elastic socks, tho my shoes still fit fine; I know it’s only a matter of time. When I was on Taxotere in 2008/09, my ankles became so swollen I had to cut the sides of my socks to allow for expansion. And my feet were so full of fluid that 99% of my shoes didn’t fit, they were just too tight. And when it got to that point, I wasn’t very steady on my feet anymore either.

It’s a side effect of Brivanib because when the Onc was first examining me before I was approved for the trials drug four weeks ago; he said … now let’s have a look at your ankles. I knew then it only meant one thing … I will be losing those beautiful thin ankles of mine. Darn it!

Tykerb - A Late Stage Cancer Drug

Sunday, November 14, 2010

Tykerb is a late stage breast cancer drug prescribed for HER2-positive metastatic breast cancer patients who have exhausted all other treatment options.

The big problem is that it’s not covered under our Alberta Health Care Insurance Program, leaving the patient to bear the huge monthly cost. In an Edmonton Journal article, Kelly Mah with mets writes… “Both my husband and I have good jobs, but a cost of $3,500-$4,000 a month for the rest of my hopefully long life would be financially crippling. I became so stressed and depressed that I even contemplated forgoing the drug and letting nature take its course.”

About Tykerb from a Cross Cancer Centre Institute medical oncologist and U of A assistant professor Dr. Katia Tonkin says in the Edmonton Sun about Tykerb..."It really is a tremendous new class of drugs in breast cancer for what can be a very difficult group of patients to treat. I think it's very important to have it available," she said, adding it's "appalling" that anyone wanting to take the drug would have to spend tens of thousands of dollars a year.

Taking up the fight is fellow bc blogger Brenda from Brenda’s Breast Cancer Journey .. she has petitioned our politicians demanding that Tykerb be covered under our Alberta Health Care Insurance Program. Way to go girl !!

I hope that sharing this info about Tykerb will give us mets folks access to all treatment options. Treatment options are what keep us alive and kicking. So the next time you hear about the new drug Tykerb, you’ll know something about it.

My Newest Daily Routine

Saturday, November 13, 2010

OK, I’ve officially been on Brivanib for three weeks now and I have to say, this last week was much better than the first two … and that’s for sure. And the really good news is that I’ve got all the side effects down to a dull roar.

My daily routine starts off with the alarm going off at 7:30 and I drag myself out of bed. After a few minutes, I take three bp readings, have my coffee and take four Brivanib pills. At 8:30 my cell phone alarm goes off to remind me to take my two bp meds, have some more coffee and some breakfast. After a bit it’s mid to late morning and I go over my blog and post it. Then I lay down for an hour snooze; I feel so refreshed afterwards.

I then get up for good, have a high protein ensure drink for lunch, shower and get dressed. If my energy is up I get out of the house and taking care of any stuff. If I’m not feeling so chipper, I wrap myself up in blankets in front of the TV, grab my laptop and surf.

Around 6: we have supper and D and I watch the evening news. When my cell alarm goes off at 7:30, I take three more bp readings and average them all in a spreadsheet for my Onc. By 9:00 I’m in bed and after a bit of TV, its lights out for the both of us.

I keep up this daily routine with the alarms and all to help me stay regular and on track with my meds. When you’re on chemo, you occasionally forget to do things. My memory is so bad these days … and between that and being so lazy, I’m afraid without some type of scheduling, some days could go by and I might not get anything done at all.

The Scar Project

Friday, November 12, 2010

According to the website, The SCAR Project is a series of large-scale portraits of young breast cancer survivors shot by fashion photographer David Jay.

The pictures are all of women between the ages 18 and 35. All the ladies are topless and bear the physical scars of breast cancer.

Warning this five minute video has nudity in it.



BP Check at the Clinic

Thursday, November 11, 2010

This past Monday I got a call saying the trials nurse wanted to see me Wednesday. My first reaction was oh no … I hope there are no surprises in store. But it turns out all she wanted to do was check my bp. Because I wasn’t seeing her for eight days, she wanted to have a quick peak on what my bp levels were.

So the nurse proceeded to unravel a thigh cuff … I said, don’t you want to use my arm now? Oh I forgot, no more PICC eh? she just grabbed the thigh cuff out of habit. Then I said, I think we will be pleasantly surprised by the numbers and sure enough we were.

My first reading was 133/84 … yahoo! Wow that is really good she said. Prior to coming here, I said to D, I am going to take our home bp monitor with me to compare with the clinics monitor. So she alternated bp monitors, taking three more readings. They were all pretty well in line except, our home monitor appears to be five points higher on the systolic. That’s good to know and I will adjust for that.

Each morning I take three readings and average. This morning my bp is 122/85.

PICC Infection and BP Update

Wednesday, November 10, 2010

Thought I’d give you an update on how my old PICC line site is doing and how I’m feeling. First off, my PICC infection is doing better. It’s nowhere near as itchy as it was a few days ago; the redness and puffiness are down too … it all looks a whole lot better.

Next, my bp appears to be nearing normal levels using my drugstore bp monitor. I’ll have to get those verified by the nurse at the clinic tho. I’m thinking the bp medication takes a while to kick in because I’m not doing anything different.

I should be doing some walking now that my liver function has improved but I have lethargy kicking in from the chemo. Still, D says I should come with him and the dog when they go for their after supper walk. Even if we go just part way and turn around, that would be a good start.

New Metastatic Support Group

Tuesday, November 9, 2010

I am thrilled to say that the Cross Cancer Clinic is now offering a Metastatic Cancer Support Group for women. The focus of the group is to encourage dialogue among women with metastatic cancer. The launch of this program has been such a long time coming for all with mets.

The common ground that brings mets gals together is to help each other deal with the emotional realities when faced with living with mets. Each gal sharing their personal experience on treatment, how they cope and how they find hope.

I attended the very first two sessions and found that they’re so helpful to me. For example, last week we talked a bit about finding hope when hope is hard to find. I shared my experience to the group, sometimes when I’m low on hope, I create my own. I schedule a special event like go out to a dinner theater, maybe a mini vacation like a family visit in another city or just go out and buy a new outfit. 

For me, I find it always helps when you have something to look forward to and focus on. While this support group might not extend your life here, participating will give you a better quality of life while you are here.

So if you are in the Edmonton AB area and living with mets and would like to join, call the main reception number of the Psychosocial and Spiritual Resources Program at (780) 643 - 4303.

Low Blood Protein

Monday, November 8, 2010

During my Onc visit this past Thursday they said my blood albumin level was lower than it should. Albumin is protein made by the liver. Low albumin could be a sign that my liver is struggling or that I’m low on eating enough high protein foods. Maybe it’s both.

I say it’s more likely that I’m not eating enough protein because when I started the Brivanib, I was having so many issues, a couple being nausea and cramping in my belly. That is when I decided to completely cut out dairy products out of my diet. I’ve found from previous experience that occasionally chemo and dairy don’t mix. I’ve done this before and had low albumin.

Anyways, this past weekend I’ve started to introduce dairy products back into my diet and so far so good. I’m hoping that just a bit of dairy daily and a protein shake, I should be back to normal soon.

Cancer Care Nova Scotia Excellence in Patient Care Nomination

Sunday, November 7, 2010

Cancer Care Nova Scotia

Excellence in Patient Care

Nomination for Dr. Robert Rutledge, MD, Radiation Oncologist

Dr. Robert Rutledge exudes health and life. He understands his personal power as a doctor and leader and clearly practices the reality of eating, exercising and living well. Within this ‘health’ context, Rob – as he will be quick to tell you to call him – has developed the practice of being completely present when you are with him. It’s just you and Rob (and your loved one, if appropriate). It’s as though he has nothing else in the whole world to do but be there with you, listen (and listen) to your concerns and when necessary, deal with them. No matter what state you arrive in (usually stressed and fearful), you will leave his presence calm and collected with a sense that ‘all is well’ regardless of what you are facing with cancer.

Rob is extremely professional, which is particularly crucial considering the intimate types of cancer he deals with: breast and prostrate, as well as children’s cancer. He prefers to talk to you in your real clothes and not the Johnny shirts that so strip you of your sense of dignity and identity. He is honest, frank, compassionate, thoughtful and incredibly observant. He is confident without being arrogant and he is always looking to see what kind of a patient you are – what level of care do you require? This is the critical question that separates him from most others.

Are you looking for science to fix your cancer? He’s got that. Do you need someone to help you face your very real (and often dark) emotions? He’s not afraid to ask the tough questions with you. Is your support structure sagging? He is clear about the benefits of support groups for you and your loved one, and he is quick to tune in on yours, and your loved one’s, emotional frequency. Are you seeking spiritual answers for the sorry health prognosis you are facing? Rob can comfortably respond to that too. It’s as though he is sporting three antennae – physical, emotional, spiritual – with a sonar scan to pick up your overall state-of being. He misses nothing. Respects all. Never condescends. He can meet you where you are, no matter where you are!

What’s more, Rob offers hope regardless of the statistics and prognosis. Add bad cancer news to Rob Rutledge and the sum equals hope and possibility. He knows cancer is a head game, and he comes right alongside whatever is happening in your head to work towards the best possible outcome.

Although only in his mid-forties, Rob has spent his life’s work wanting to extend his help beyond his regular medical practice. “I realized early in my career I wanted to understand the human side of the cancer experience and apply those learnings to help others,” he said. Cancer as a disease carries an unbelievable burden of doom with it, despite how much greater survival rates are, and it is this doom that Rob enables patients to face – and reframe – into something bearable and very ‘carry-able’.

All these qualities – his personal wellness leadership, mindfulness, professionalism, commitment to respond to patient questions and concerns – merit the committee’s deep consideration for this award. However, Rob was not satisfied staying within the medical system to empower people on their journey to wellness. Early in his career, Rob and his colleague, Psychotherapist Tim Walker, PhD, decided to develop a weekend retreat workshop called “Skills for Healing Cancer”. Really. Healing Cancer. Two words you rarely find together on conventional cancer websites patients are directed to for information and support. Since 1993, they have, on their own time and dime, led over 30 weekend retreats in 15 cities in Canada and abroad, helped more than 1,000 people face, and reframe, their cancer experience. More, in 2003 they developed Skills for Wellness programs for healthcare providers to empower their colleagues to extend the reach and impact of the work they had started.

From the weekend retreats, they created the Healing and Cancer Foundation, now a registered Canadian charity; wrote a book being launched May 6, 2010; and created a website (www.HealingandCancer.org) offering all their weekend retreat wisdom and cancer patients’ true stories free of charge to anyone who wishes to view (and use) them. While this is a team effort, Rob is the heavy lifter and the energetic driver that keeps this huge and inspiring body of work moving in the right direction – endorsing conventional medicine while gently awakening and encouraging patients to see the mind-body-spirit connection.

When people are asked to describe Rob, most often the response is ‘he is a very special person’. Using Rob’s phrasing, we would say he is ‘super special’.

I hope you will seriously consider Dr. Robert Rutledge for this very deserving award. I do not think it is too bold a statement to say he has positively impacted the lives of any one he has encountered on their cancer journey.

Sincerely yours,

Kelly Hennessey

Rob Rutledge’s patient, 2008-09

PICC Line Infection

Two weeks ago, I developed this itchy rash just above my PICC line. I put some hand lotion on it and wrapped it with gauze so I wouldn’t scratch it. The redness you see in the pic only lasted a day and disappeared, however I could still feel the rash and the site was still itchy.

Two days later I had a PICC dressing change and everything looked normal. Then at this past Thursday’s PICC dressing the rash was back and it moved closer to the PICC hole. The nurse decided to dress it in such a way that there would be minimal adhesive touching the skin around it, allowing time for it to heal. I would have to come in every second day to repeat this special dressing change. So yesterday, I went in and when she took the wraps off, it didn’t look good… to the point that it was just starting to get infected around the PICC hole. It was itchy, it was red and it was warm to the touch.

She asked me what the PICC line is used for. I told her we use it for blood draws because of my damaged veins … not for chemo. We then weighed the options; she thought that if she pulled the PICC out now, it will likely heal on its own. If we wait and see, it will get worse and I would need antibiotics. My Brivanib chemo and antibiotics just don’t mix … together they’re too much for the liver to handle. I sure don’t need a full blown infection and stop my chemo, right when it started to work.

Before I left, the nurse used a black marker to outline the infected area. She said if the redness goes further, I should get back to her asap. So once again I am PICC less and it feels great. Here’s that pic.

Nurses Singing in the Chemo Room

Saturday, November 6, 2010

Last Thursday in the Chemo room, I noticed some nurses gathering in one corner. Then all of a sudden they broke out into song … similar to what you have in restaurants when someone is having a birthday. Except instead of singing the words to Happy Birthday, they made up some other words which went something like this … Happy last chemo to you, happy last chemo to you, happy last chemo  dear *****, happy last chemo to you … and never more. The smile on the recipient’s face was big as big can be. I thought to myself, now that is pretty cool. And it happened once again a short time later.

As I was waiting for someone to book an appointment for me, I sat down beside one of the deserved gals. She had just received her last chemo and nobody could ever wipe that smile off her face. She was pretty happy and on top of all that she was getting her PICC line pulled too. We chatted for a while about our PICC line experiences and found out that she was a bit nervous about having it pulled. I said, this is my second one and when they pulled the first one, I felt no pain or discomfort. I think that put her a little at ease. I asked if I could watch and she said sure. Unfortunately, I had to leave when the nurse called me up to book my next appointment. Too bad I couldn't be there for her.

Tests and Saw the Onc

Friday, November 5, 2010

Yesterday I was at the clinic for blood tests and to see the Onc. First stop was to get my blood drawn out of my PICC line and then have it redressed. Then I stopped at the coffee shop for a bite to eat and a small coffee before my Onc appointment. As I was sitting there looking ever so relaxed, the trials nurse happen to walk by and said, would you mind if I check your bp? Sure, she went and got a bp monitor and proceeded to take my bp. Unfortunately, It was still high. She then said let’s go find a bed and see if we can get a better reading. After a couple more readings, it’s still high and maybe a tick higher.

The nurse left to talk to the Onc and before you know it, around the corner here he comes. He listened to my heart and took my pulse and poked around my liver. He asked how I was feeling and I told him that I’m feeling better but struggle with irregularity. He said … well ... that’s par for the course.

The Onc and nurse both left for a short while and then the nurse returned with another bp prescription, 5 mg of Amlodipine. And that’s on top of my 10 mg of Ramipril. She also said I should purchase my own bp monitor with a leg cuff to read between clinic appointments.

Then we looked at my blood work which showed a further improvement in liver function. Sorry I don’t have any numbers for you … I was a bit distracted with the high bp. On the down side, the protein level in my blood is down so I need to increase my protein intake. So to help get that going, the nurse gave me a few protein shake samples.

I am Feeling Much Better

Thursday, November 4, 2010

Last Tuesday, to help get my high blood pressure under control, I started taking 10 mg of Ramipril, up from my original 5mg dosage. It was early that afternoon when it occurred to me … I am feeling much better. I said to D, wow no headache, no chills and there was less dizziness and next to no nausea. Today I’m feeling better yet. It looks like the Ramipril is doing its stuff to counter the chemo.

The next issue on my list is irregularity. If you remember I was constipated mid last week and then diarrhea on Sunday and then constipated again the next day. I took a couple of Senekot S on Tuesday night and finally it happened … a bm late Wednesday. Hurray! This is probably way too much information but no cancer blog is complete without some discussion on poop.

I’ve been eating lots and lots of fruit and drinking oodles of water. I sure hope I get this irregularity figured out soon.

New Canadian Cancer Staging Initiative

Wednesday, November 3, 2010

We now have a new National Staging Initiative to collect standardized data about cancer stage across Canada. It’s a first- of- its-kind long-term collaboration that should improve care and save lives.

Staging refers to the classification of patients with cancer into similar groups according to the extent of disease. On an individual basis, physicians need staging in order to determine prognosis and make informed treatment decisions. On a national basis, staging is important because government can use staging to determine survival by stage, to evaluate screening and treatment, to compare information across the population and over time and for planning and administration.


Blood Pressure Update

Tuesday, November 2, 2010

Yesterday I had an appointment at the clinic to have my bp checked. So the research nurse called me in and I assumed the position, laid down and on my back. We have to use my leg to take readings because we can’t use my arms. I have a PICC line in one arm and lymphedema in the other. She took three readings, all being around 168/85. That’s down from 170/101 last Thursday because of 5mg of Ramipril that I’m on. She asked me if I was still having headaches and I said yes. They seem to be with me all the time to some degree even tho I take aspirin.

OK she says, I’ll go see the Onc to see what he has to say about these numbers. She came back and took one more reading … 140/85. That’s much better I thought. She then said the Onc wants you to double your Ramipril and we’ll reevaluate this coming Thursday.

Boys and Science


God, I realised I had finished my blog by getting ready for Teasy Pleasy, promising you photos and post about it then clean forgot. Oops…


Not like there is anyone to tell me off.


So, Teasy Pleasy was a good night all round. A few sound hiccups at the start didn’t distract too much from the night. Domino Burlesk was every bit as delightful as I remembered her to be as was Glory Pearl, Raspberry Ripples and the other performers. One again Miss Anticipation bought members of the audience to their feet with cheers for her act. God that girl is strong. She did press-ups, flexes and all sorts! Adorable! The only downside for the night was that one of the stall holders didn’t have Bordello leopard print shoes in my size! Gutted! By the way (HINT HINT), to anyone who wants to buy me something to make me smile. In fact any of their shoes would be good. I have been a good girl all year…sort of.

I spent the rest of the evening dancing with mates to the Whip Crackin Daddies…rather dishy trio, even if I do say so. The whole place danced along to them and they certainly have stage presence. The double bass player had girls swooning over him though admittedly, Jim Jeffries was the pinup of the group. His pretty boy looks grabbed all the girls’ attention. A fair few ladies were overheard gushing over him….The drummer got the girls squealing when he jumped into the audience to play. I safely retreated to the bar to watch the carnage of women and dancing commence. Awesome times to say the least. A late night and a stagger home with my best mate Big S that got me home so late it was disgraceful. Big S you have alot to answer for!! Just like old times then.

The next day was spent nursing a hangover and being dragged reluctantly out of my bed at Dixie Doll’s house to head off to shop, I crashed and burned with Tempest-Rose on the grass in the sun….

I even managed to pick up a new jacket for me to take to Paris for my show out there in October…oh how I love it. It’s green wool with leopard print cuffs and collar. Made by the delicious brand Aquacustum…spolit? me? yes! I did prat around in a few vintage shops as well. I managed to find a real treasure trove of a shop. When I arrived a new shipment of vintage French lingerie had just arrived. WOW, the whole lot were in perfect condition and some unworn.

If you are ever near Bournemouth/Boscombe/Southbourne I suggest you visit Clobber. It’s a great shop and I am going back to mooch some more as soon as I get back that way. I have my eye on some 40s dresses and some cowboy boots. The rest of the week revolved around rehearsals ready for the weekend show at The British Science Festival and a radio interview (more to be disclosed soon). I have to say a pretty subdued week all in all…though a lot spent listening to the Whip Crackin Daddies album Paul gave me. ‘Fire’ is my favourite though oddly reminds me of the old Rawhide theme song…oops did I say that?! :p

I noticed a few of my mates have liked it and have downloaded it off iTunes…

So last night saw me performing at the British Science Festival and I have to say, I had a brilliant time. I was put up in a very nice hotel with flowers delivered and wine (nice!!!) and was treated impeccably. The show went really well…my Gorilla act certainly raised a few laughs and Professor No No had them singing and dancing with me. Fabulous, so a special shout out to all at Aston University students who attended and to Mel Spencer for organising it for me to be there. MWAH! I would like to thank the free styling rapper who made a rap about me but I never got his name other than he was Canadian (from Vancouver) and loved science.

A rather surreal moment was dancing at the end of the night only to realise I was surrounded by people in white lab coat, it felt all too horror movie waiting to happen for me so moonwalked (yes moonwalked! *SHAME*) out of the circle and ran for cover at the bar.

Pretty much spending much of today (Sunday) catching up and rehearsing for my next shows. I have glitter all over me but then that’s nothing new. Off to listen to some Big T Tyler…I use some of his music in my acts. Great catchy beats I found. Right, ciao ciao!


Khandie Khisses has performed for BABC. More can be found at: www.khandiekhisses.com

Bella's Backstage


For some reason, every time I wake up the day after a show I'm always aching all over. I think the rush of performance blocks out any pain receptors and I'll push myself much harder on stage, resulting in my waking up with muscle aches. But it’s a satisfied sort of pain and after a hot shower all that was on my mind was food. Surprise, Surprise...

Not much is open in Hobart on a Sunday in the city centre, as Torsten and I found when we went exploring for food. We found one of those diner style places that looked like it never closes, where they do a reasonable breakfast. Nothing mind-blowing, but we were hungry and I didn't have much time before I had to get back and put my stuff together for the afternoon’s dance classes and tutorials. Next time I'll head straight for North Hobart, as I was reliably informed by the girls, that it is the best place on a Sunday for food.

I was teaching a basics class at Tasmania's Pole Dancing and Burlesque Academy and was amazed how quickly the ladies of Hobart picked up the choreography. It was a very sexy tease to a bit of Screamin' Jay Hawkins and they were totally rocking out to it with their boa's and gloves.

Both Grace Cherry and Lucy Sky Diamond had one to one tutorials with me and I tell you what, I can't wait to see more from these ladies. Aside from being just the nicest girls you'll ever meet, they are extremely talented. I'll be watching with some interest at where their performances go.

So with a full afternoon and evening of classes finished can you imagine what mind was on? Before I left, I got Grace & Sarah's recommendations on where the best fish & chips were and so that's how Torsten and I came to find Fish Frenzy down at the harbour. It was absolutely freezing cold in the loveliest way when we hopped out of the cab and bundled into the very laid back fish & chips restaurant. Glass of rough red, great chips, prawn cutlets, calamari & fish. One fish we liked, the other not so much but unfortunately I can't remember the names of them!

This was followed by an icy walk around the harbour to walk off our very full bellies. Having walked past the Art Hotel, I made a mental note to stop in there next time. Their dessert menu looked wonderful.

Then all the way back around to Salamanca which at night time in the cold with the fairy lights in the trees reminded me so much of Berlin at Christmas. Followed by caramelized fig, green apple, lemon and peanut butter fudge gelato (2 flavours each - I would recommend the peanut butter fudge) at Cargo and I was feeling a strange sense of contentment, as I trundled off to bed for another night's beauty sleep.

I seem to be asked more and more about my skincare regime and personal taste in fashion. I've avoided writing about it because it seems a little self-indulgent of me (not being any expert on make-up) but as there seems to be a bit of interest in the subject, I figure what the heck! This little post is about the make-up and skincare I use.

How do I keep my skin looking great? I don't. I wear lots of make-up on stage which is why it looks porcelain in the pictures but in real life it is an ongoing battle to keep my skin in good condition. Make-up, late nights, a few too many champers and my skin gets positively grumpy with me. I also have extremely fair skin and so am very prone to freckles at the first peep of sunlight through the clouds. In addition to this, the illusion I was under that in passing my teenage years that I would be magically endowed with clear skin has fallen rather short of the mark.

So it's simple for me, 30+ sunscreen, even in winter. Make-up wipes by the bed for those nights I cannot summon the energy to wash my face, or in my make-up case for the trip home from a gig along with a little travel pot of moisturiser. All over body moisturiser, I am religious about this after a shower because the water in the three places I am most, England, Germany and Australia, is very hard and dries skin quickly. My friend Bea DeVile (another Burlesque Against Breast Cancer alumni) has also instructed me to body brush or use exfoliating gloves for lovely legs, but I'm terrible at remembering this.

My other indulgence is the 'Brazened Honey' face mask from Lush. It works like magic when my skin looks really tired. I just need to perk it up before a show, or the day after a show when I want to go out again and not look like I dragged my glittered behind into bed at 6am that same morning.

As far as make-up goes, I seem to stick to my staples. One of my lifesavers in hiding tired under eyes is a concealer called Touche Magique by L'Oreal. I'm pretty sure any illuminating concealer would do though. A decent red lip liner too, I have stupidly sharpened mine to the point where I can no longer see what brand or shade it is, so I'll have to do some investigating! I often use just lip liner all over instead of lipstick for a show as it will not budge, but of course a decent red lipstick for after a show is a must. Also, loose face powder, not compact. Trust me.

Black liquid eyeliner and false eyelashes. They are a bugger to learn how to use properly but once you do, what a difference it makes. I still curse and swear when I'm putting on eyelashes as do most of my friends but it's worth it in the end! I once blogged about another burlesque lass, BABC’s Khandie Kisses I believe, who told me once that she had so many false eyelashes, she thought they might form one giant eyelash and crawl around her apartment. I'm proud and terrified to say that I am at that stage of monster movie eyelash take-over.

As to how to put them on properly, it's all just practise, I'm sorry to say. There’s no secret. One day I promise, you'll get to the stage where you can put them on while on a moving train. You'll still curse and swear though.

Finally, the perfect nail polish. I go pink for 60s and red for everything else. My particular red being a bottle of Chanel 159 Fire Red which, as I hold it up to the light now, I see is over halfway used. Tragedy!

Hair, well when it comes to hair, I am lazy. I'd rather have someone else do it, but I feel it is necessary as part of my sartorial education and I try. Although, I do make more shortcuts than I'd like to admit. I'm in love with my Vintage Hairstyling book by Lauren Rennels. If you'd like to learn how to do your own vintage hair and make-up, there are also a few fabulous classes available. In Brisbane ,see the Facebook page for the Bombshells Academy to join classes and learn everything you need to know on vintage hair and make-up.

So that concludes my ramblings for now. I'll try to do a blog on clothes at some point, if I can focus for long enough!

Bella De Jac has performed a number of times for Burlesque Against Breast Cancer and you can find out more about her at www.belladejac.com

Some Regularity Needed

Monday, November 1, 2010

At the beginning of last week I was constipated for a couple of days. So when I saw my trials nurse last Thursday, she said, don’t wait three days before you treat it. So that night I took a couple of Senekot S because it’s worked well for me in the past. Senekot S is a stool softener and laxative combo. I took two and I was back to normal the next day. Great I thought, now I’ll just up my fruit intake so this doesn’t happen again.

Things were going along pretty good until yesterday. It was noon and besides having a banana that morning, I really wasn’t interested in having anything to eat. It then occurred to me that I hadn’t had a bowel movement yet either. I thought, oh boy, here we go again … constipated.

Well I was wrong because as soon as I had some solid food, I soon got diarrhea. Arggg!