A Quick Update

I know I said I would blog about mums general attitude and how she is coping, but its been an unbelievably busy week so for now, just a quick update.

I saw mum for the first time today since Monday and I thought she seemed a lot better. Her spirits were good and she is extremely happy with the treatment she is receiving at Roswell. One of the (many) positive things about mum is that wherever she is, she is able to build a community around her. She has chatted to her physical therapist who is treating the lymphedema, a professional singer staying at the hotel, the ladies in the gift store , other patients and I suspect she may become a "favourite" with her nurses ....she does like to talk ! Of course, this is only the surface interaction. Underneath, I am not really sure how she is doing. My sense is that there is still a sense of shock that this is all happening and a certain amount of disbelief. It's probably a good thing because it allows her just to focus on one particular issue and not give in to rumination and worry- something we are all inclined to do when the going gets tough. Mum is made of stern stuff, its the Scot in her, she has good strong genes that allow her to soldier on and get through the hard times.

A healthy sense of optimism helps , and she has that in abundance.

Great Cancer Bloggers

“More than any other word on earth, the word I hate the most right now is "trouper." I despise the very concept, the mere idea that it's a even good thing to be. I loathe the pressure it puts on us to be so goddamn "brave," to be cheerful and upbeat and have a "positive attitude;" and, above all, to "fight."I'm not a trouper. I'm not brave, I'm not upbeat, I'm not a fighter. I spend an average of 2.75 hours every day crying. I cry so hard it sounds like I'm strangling, or drowning. I went to talk to a therapist, and she says I'm suffering from adjustment disorder and bereavement. Bereavement for my own lost self, the loss of the delicious life that I had worked so hard to create: the freedom, the independence, the strength, the vitality, the lust, the competence, the companionship, the dignity. All gone now . I hate what I've become. I hate what my life has turned into.And the only choices I seem to have are: suck it up and be a "trouper"; or bury my face in my pillow and sob.I say fuck the whole trouper business. Let them put this on my gravestone: "Her attitude stunk like day-old fecal matter, and we were afraid she would never ever ever EVER shut up with all that damn crying and whining. Praise Eternity!"

One of the best cancer “blogs” on the internet is written by a woman “Liz” over at "As The Tumour Turns" . This particular post was written while she was in the middle of chemotherapy for a highly aggressive stage 4 lymphoma. I follow Liz every day. Her humour, her bravery in the face of some tough times and her account of her life with a diagnosis of cancer is very moving and well worth checking out. I also enjoy some of her non-cancer related blogging, stories of her family, her business , her thoughts on the medical system- it is provacative and thoughtful work.
I’ve been thinking a lot recently about the whole issue of “attitude” and cancer . There is often a subtle pressure placed on people dealing with cancer to be “ brave “or be an “inspiration “. Its almost as if we need to see those qualities to make the diagnosis more palatable somehow.

Tomorrow I’ll write something about my mums attitude , but for now, I’ll just be happy that I have finally moved and I am blogging from the air conditioned comfort of her condo .

Spoke to mum again tonight, she's still sleepy , but sounded better today , slightly stronger and calmer ......she needs to heal and one of the best remedies is sleep.

Hot ...Hot ...Hot and still moving forward

Its hot here , 40C with the humidex, its dry and parched with pollution rising as a horrible brown haze in Toronto . Its quite unpleasant and if there was a good week to stay indoors during the summer, this might just be the week .

I spoke to Doug by phone (he's back in Burlington) and apparently mum insisted that he "leave" her behind at the Doubletree so that he can get his foot attended . He mentioned to me that mum now refers to Decadron as that "horrible pill" and it makes her quite unsettled by the time the afternoon rolls around . Apparently the radiation is going well and mum has now started at the Lymphedema clinic at the hospital and they feel that they might be able reduce the swelling on her arm by 60% . Lets hope they can do something because the swelling has got significantly worse and combined with the pins and needles and weakness in her right arm and hand, it makes her less able to use the limb . This is obviously a concern.

I'd like to press the "fast forward" button on this week ...can we just get it over with ? Can a magic fairy come and finish packing my house ? Can Doug get his MRI on his foot? Can mum get through her first week of radiation ? Can we have good results ? I'm back to that impatient mode again ..... I just need to breathe calmly and get through it all .....

Radiation #1 and moving

Its hot and humid here again but at least mum is safely in Buffalo in the air conditioning . I am frantically packing and trying to leave my house in a reasonable state so that I can get back down to Buffalo ASAP . I finished the garage today (with help ) and it was like an archeological excavation . I have had a number of friends volunteer to help which really makes a difference as packing up and cleaning can be quite dismal.Mum sounded reasonable on the phone, pain seems under control and radiation went well today .

Getting Off the "Merry- Go- Round "

This evening mum got everything organized ready for the next couple of weeks in Buffalo. The plan is that she will stay at the Doubletree again until Friday and then return to Oakville for the weekend. There are a couple of nice events planned - a barbeque with their friends Marilyn and Janet as well as a Canada Day party at Doug's condo . Hopefully mum will be in good spirits and able to have a more active weekend. Doug is planning to spend the whole week with mum down in Buffalo and I will be there to meet with the radiologist on Thursday .

Unfortunately Doug has a diabetic foot ulcer that has been slow to heal . We have found a wound care clinic in St Catherine's and hopefully he will be able to make the necessary arrangements to have it attended to on a regular basis without driving back to Burlington for his appointments with the nurse. He has been a great support to mum . It's important to try and have some fun too - in spite of the difficulties associated with the treatment. Mum and I decided that his "job" was to "keep her happy " (!) but seriously, we could not have done without his help coordinating the insurance claims .His expertise and organizational skills have certainly been very helpful.

There's a lot of logistics to attend to ....I am moving on Wednesday(hardly packed one box yet and the garage is a disaster) and will be "camping" at my moms condo until I move into my new place in September. Colin will be returning home from Vancouver , the dog has to be looked after, all the various appointments need to be made, medication sorted out ....I think it will be better for mum to just try to relax at the Doubletree and focus more on herself right now and less on the external minutae that is whirling around.

Dreadful Decadron

Mum has been on a drug called Decadron which is a steroid that is being used to reduce inflammation .She is on a fairly high dose which does augment any potential side effects. What she has noticed is that she is having some problems with heartburn and also a feelings of agitation. The first night she was on Decadron, she could'nt sleep despite feeling tired . She was wound up and restless . This has been tough and has made her feel sick and a little bit low. In addition ,the Doctor warned her that after the first infusion of Zometa, the bone pain might worsen and she is starting to feel an increase of pain with Friday being the worst day . Today, the pain killers have "kicked in " and she is feeling better although tired and sleepy. She has'nt left her condo and has spent a lot of time in bed just resting or watching TV. Its not a great way to spend a weekend, but I think she also needs to gear up for radiation starting on Monday . Its almost as if she needs to pull inward somewhat in order to fortify herself emotionally and physically. Tonight she sounded a little better when I spoke to her on the phone. Doug was with her, offering quiet support.

Understanding Complexity

We have had to learn very quickly about the anatomy of the spine. I barely passed biology at school and I can't say that a grasp of science is my strong point, but this is what I understand so far thanks to a number of excellent articles on the internet . The spinal column (or vertebral column) extends from the skull to the pelvis and is made up of 33 individual bones termed vertebrae. The vertebrae are stacked on top of each other group into four regions.
These regions of the spine have handy abbreviations :

Neck (cervical ) C1-C7

Chest (Thoracic ) T1-T12

Low Back (Lumbar ) L1-L5

Pelvis - (Sacrum ) S1-S5

Tailbone no abbreviation !

There are lots of gruesome pictures on the internet that show all the muscles , ligaments and nerves attached to the spine. Its all extremely complex and I try to read something every day that helps me understand. What I do know is that I have a new appreciation for all the health care professionals that have looked after my mother. Its not just a "job" , it is a true vocation.

I also have a better understanding of health care administrators. I used to get very upset if I perceived someone as "slow" or "inefficient" and I now recognize that I was judging too harshly. These people, in the most part, have an extraordinarily difficult job that requires a high level of dedication and skill .

Thank you also to ..............

• The people that sit behind glass screens and call out my mothers name when it is time for her appointment.
• The volunteers that work in the gift store , the information booth and hand out candy at Roswell Park.
• The musicians that play in the lobby
• The people in the elevator who say "good morning"
• The people who clean the hospital and get rid of my coffee cups and sandwich wrappers and more.....much more.
• All the invisible people that help make a very complex institution function 365 days a year.

Gratitude, appreciation forgiveness and love .... Mother Theresa, The Dalai Lama, Nelson Mandela, Ghandi , Muhammad, Jesus Christ ......I think I understand better now what you were trying to tell me . Its actually not that difficult .

Radiology

We are taking a quick lunch break after a full morning at the radiology clinic. It was a busy appointment. We were fortunate enough to meet Dr Killian Salerno , who is a resident here. She is a wonderful young doctor and took a long time with mum explaining everything .

There are two main concerns.

1 - treating the area of her neck - the epidural disease . It is in the lower part of the neck and extends five levels down to the mid back.
2- The hip -. They would like to do some radiation to that area but they feel that the hip should be strengthened prior to radiating that particular area. They may also be able to radiate the lower back at the same time.

The main concern is that the epidural disease is resistant to Zometa, the treatment that will combat the other issues in the bones, and radiation is the best way forward. Surgery is an option, but only as a last resort for obvious reasons. Lets hope that she shows a good response.

She will be starting radiation on Monday and right now I am in the waiting room while she is having a CT scan , tatoos and a mask fitted that will ensure that the radiation that is delivered will be precise.

Her doctor feels that it is essential that you "treat the patient not the scan" and I thought that was a good way to explain the situation. It emphasizes the "art" as opposed to the "science" of medicine and I feel we have Picasso in our midst.

Our "boys"

"I have always depended on the kindness of strangers" - Tenessee Williams


We saw "our boys" tonight again at the bar. No wonder they are such a good bunch, turns out they are from the U.S coastguard. We were only too pleased to treat them to a couple of beers .....they certainly rescued my mothers spirits last night.

Test Results

The best news today was that mum's brain is "unremarkable" ! Even better was that her vital organs , lungs, liver, kidneys showed no "definite soft tissue metastasis ". The doctor today focused on the bone metastases which are "widespread" . The largest lesions are in the pelvis, particularly the right hip and right femoral neck . The issue that Dr O'Conner is most concerned about is that there is "epidural disease " within the spinal canal that starts at the C7 level to T4 . At the "cervical thoracic junction " there is a mass encroaching onto important soft nerve tissues of the spinal cord. Thankfully, the radiologist could see no evidence of spinal cord compression which would be very serious indeed. As a result of this, Dr O'Conner wants mum seen immediately by a neuro -radiation oncologist and she is fortunate to be able to be seen by Dr Prasad who is a world- class neurosurgeon and radiation oncologist . Her appointment is at 10am tomorrow. In addition, we are still waiting for the appointment with the orthapedic oncologist . Our sense is that mum will get radiation very soon on her spine and hip .

In terms of general treatment, Dr O'Conner was very positive and relatively optimistic. Mum will be receiving treatment of Zometa by I.V once per month . Zometa helps by

• Slowing the bone–destroying activity that occurs with bone metastases.
• Fighting the abnormal cells that cause bone to wear away.

The most significant side-effects of Zometa are possibly an increase of bone pain in the short term , jaw complications and kidney function can be affected. Mum will be followed carefully and hopefully, she will do well on the medication .

Mum has also been put on Decadron which is a steroid. The reason for the drug is to reduce the swelling of the normal tissues around the bone tumours and to control any symptoms. She is probably only going to be on Decadron for a couple of weeks, three times per day . Decadron typically causes increased energy and increased appetite (not a bad thing !)

There are some stomach side effects with these medications and so she is also on Prilosec which reduces stomach acid. The scans have also revealed that mum has severe Diverticulitis . This is news to her , so she will probably see her GP about it at some point. Apparently, it is quite common and a high fibre diet is recommended to avoid complications. Considering the other things she has going on though, its not #1 on the list of priorities !

As mums cancer is estrogen sensitive, she is now back on a medication similar to Arimadex . This drug, called Aromasin®, interferes with the body's ability to make estrogen.

Lastly , mum is now on a drug called Oxycodone (5mg) which is a narcotic painkiller . She is to take 1 or 2 tablets when needed for pain . At the moment, pain is not too much of an issue, so she will probably start off with a low dose and increase it as necessary .

All the medications were thouraghly explained to us by Dr O'Conner and also Ellen Kossoff , a pharmacist at Roswell Park stopped by and chatted while mum was getting the infusion of Zometa.

There is an incredible amount of information and support available at this hospital . Its a very unique place and I feel we are very fortunate to be able to have such an outstanding team behind us . Everyone is extremely polite, friendly and helpful . It makes a huge difference and "humanizes" the whole experience.

Tonight we are going back to our favourite mall in Buffalo. The prices are great , lots of sales and we have both taken a fancy to Dunkin' Donuts , the most fattening sweet treat you can possibly imagine. We keep justifying this indulgence because of "stress" and our favourite phrase at the moment is "what the hell ".....but now that we have this reasonably positive news, its time to cut back !

More tomorrow, but right now, its time for a break .

Back At The Doubletree !

We're back at our favourite hotel in Buffalo ! It was a long drive from Oakville today, plenty of traffic and 35C and bright sunshine. It has'nt rained for a long time and the grass is looking a bit parched , even as we drove past the vineyards in Niagara.

The Doubletree staff at the reception"rescued" the little Mini as we still have'nt managed to patch up the window that was smashed after the break in . They have promised to bring her back from valet parking all safe and secure with some plastic sheeting and duct tape to patch things up until we get the mini fixed on Wednesday.

The sharp eyes reading this blog will wonder what mum has in the glass . Its actually a double Glenlivet on ice. We went down to the bar for a quick nightcap and to bring our drinks to the room when we got talking to three local Buffalo guys . They were captivated by mums Scottish accent. One of the guys said to mum "come over here darlin' . Mum of course went over to have a "wee talk" (as she always does) and as our drinks were poured, the guy insisted on putting them on his tab ! The guys propping up the bar at the Doubletree could not possibly know what mum is facing at the moment, but a laugh and a cheeky smile was the perfect anti-dote for this sinking anticipation we have both been feeling. We gave our host a hug and he wished us well for tomorrow.

My father Alistair always used to say to me "Moira, what goes around ,comes around" and tonight, I was reminded of that saying. We were both so touched.

Mum at the moment is lying on her bed, finishing off her Scotch. She had a manicure and pedicure at the mall and she is feeling OK and after her laugh tonight, better able to face tomorrow. I think we have decided that no matter what happens, we are going to hit the Walden Galleria in the afternoon for more retail therapy.

My sense is that she finds the blog really helpful because it is so difficult to express her feelings right now because there has been much to take in and process . I know she would really welcome comments though, so keep sending your messages. They mean a great deal .

Ironically, with everything that we have to face tomorrow, I think this has been mums best day since the 20 long days since whole thing started .

Cancer is a shared experience

"As a cancer patient, there are so many days that change the course of your life. Those changes usually aren't very smooth. They're more like those sharp turns on a roller coaster, the ones that whip your neck around. The first day of chemo? That's a huge change. I don't think your body ever quite recovers from those toxic drugs that are meant to save you. It's the scan days that really determine the course of your life. There are several different types of scans: MRIs, CTs, PET scans. They all see things a little differently. But they all do the same thing. They search, they hunt. They try to peer into the dark corners of our bodies, looking for a threat.
All scan days are difficult. Waiting for the results is excruciating. A good scan day is like your birthday and Christmas rolled into one. A bad scan day sends your life careening off in another direction"

Leroy Sievers, Blogger, Podcaster, Commentator

Tomorrow, mum has a day that will feel a lot like the roller coaster ride that Larry Sievers describes. She will have the results of her scans at Roswell Park and a meeting with her doctor to decide on the best course of treatment. My sense is that once we all know what we are dealing with, we will be in a better position to plan for the rest of the summer and beyond. Without that knowledge, it feels as though we are staring into a dark abyss, uncertain and fearful of what is to happen next .

Weekend Is nearly over

The weather here is hot and sunny . Everyone is out and about with their families , the sidewalk cafes in Oakville are busy, the kids are hanging out at the pools and the atmosphere here is more vibrant. In contrast to the festive mood outside, this weekend has been a rough one for mum. I think the anticipation of the appointment with Dr O'Conner at Roswell on Tuesday where we will get the full results of the various tests makes for a tense time. We do our best to think of ways to distract .....lunch at the club with Doug yesterday , a shopping trip this afternoon ....all attempts to introduce some normalcy in a very abnormal situation.

Uhohhhh!

Some awful person smashed a window on the passenger side of the Mini while I parked it today in Toronto . Nothing was stolen but a real pain ...especially as we need it to get us safely to Buffalo on Tuesday for the appointment.

Daily Survival Guide

Daily Survival Guide by Thomas L. McDermitt a long-time cancer patient and skeptic

Today I am going to try to live through this day only, and not dwell on or attempt to solve all my problems at once. Just focus on the piece that is today. I can do something for several hours that would be difficult to even think about continuing for several months.

Just for today, I am willing to accept the possibility that there is a purpose to this suffering; that it can be a source of meaning and growth for myself and others, though I may not always recognize the ways. And it seems possible that this suffering will not be in vain, because of what may be some kind of existence beyond.

Just for today,let me remind myself that I am basically a worthwhile person, worth loving, despite my faults and limits. I deserve the efforts of others to help me through my illness.Just for today, I want to be aware that it is all right to want too much from others at times. Illness brings out and intensifies the small child in all of us. And if I feel hurt when those who care for me can not be there, it may help to remember that they have needs, frailities, and limitations of their own. A lack of response does not mean that they are personally rejecting me.

Today I may feel the need to complain a great deal. I may have little tolerance. I may cry. I may scream. That does not mean that I am less courageous or strong. All are ways of expressing anger over this mess, of rightly mourning my losses. Endurance itself is courage.It is my life at stake now. So maybe today I can allow myself to be a little less concerned about the reactions or impressions of others. Maybe I can allow myself to feel a little less guilty or bad about what I did not accomplish or give.

Perhaps today I can be a little more gentle toward myself.Surviving this is all so difficult. At times it seems impossible - that I have had enough. Down the line I will know if and when I have had enough, when I cannot push the limits any further. I will have the right to choose to stop, without feeling that I am "giving up". But today I think I can deal with this illness.

Just for today, maybe I can give healing "the benefit of the doubt". The drugs are powerful; the natural healing capacity of my body is powerful. And who knows, perhaps there is healing power in my will to struggle, and in the collective love and will of others.

Just for today, perhaps I can take heart that we are all connected. And Imay still have some things left to contribute to the family of man;some light to add to the light. Even now my endurance (however imperfect) is a gift, an inspiration for others in their struggle.It seems reasonable that there is a season for everything, and a time for every purpose. Pain, weakness, and exhaustion may distort my senses and spirit.

Today, however, I can at least find some hope in nature's way, if not in some master plan. The chances are fairly good, and it seems worthwhile to hope that I will have some cycle of wellness yet.

Waiting, waiting, waiting

I'm in the MRI waiting room at the hospital. Funny how moments like this can be comforting. I was nagging mum to eat something to ward off hunger when another daughter of the woman just ahead of mum leaned over and offered her a protein bar out of her purse . Plain simple kindness can be as healing as every therapy this hospital can offer.

The nurse called mum into her appointment and she went off .....alone .......but not hungry any more.

Not again

"The faster you go, the shorter you are."
Albert Einstein

We have an appointment with the radiologist at Roswell Park on June 26th . They need all the charts of past radiation treatments from the UK. I feel drained, just thinking about calling the hospital in the UK and fast -tracking the records to the United States.

More patience and waiting required. I think I'm like Margaret Thatcher's on this particular virtue........"I am extraordinarily patient, providing I get my own way in the end"

Someone is doing their job !

My Aunt Decia , my mums sister, has good connections with the "big guy upstairs" . I think her influence must be working because at the conclusion of the brain scan , she was told (not definitively of course) that the scan "looks good" . Phew.....I'm wondering if it was a coincidence that we happened to click on the local cable station in the hotel to see an order of nuns saying the Hail Mary over and over again . Mum and I watched....transfixed !

Still in Buffalo

It looks as though we will be cancelling our appointment at Princess Margaret for tomorrow and rescheduling for the 28th. The doctor at Roswell Park wants us to stay overnight and have an MRI of mums spine at 5.15 pm. She is also going to try hard to get us an appointment with an orthapedic oncologist, Dr Brian McGrath tomorrow because it is very important to stabalize her hip joint. Mum MUST try to walk as little as possible for the time being and avoid sudden movements....not an easy task ! Mum insisted on crawling into the back seat of the mini yesterday !

We heard from Dr O'Conner that her cancer is not curable but treatable and the fact that mum has not had chemotherapy before makes her an excellent candidate for treatment. She feels that the response rate is higher than 70% . Mums "disease free interval" has been very long . Most breast cancer that metastasizes comes back after 18-24 months. In mums case, it has been 15 years since her original diagnosis . The doctor thinks that the reason mum did so well originally is that her cancer is estrogen sensitive which makes her a great candidate for hormone treatment , similar to Tamoxifan and Arimadex . The other option might be a chemo drug called Herceptin which has revolutionized breast cancer treatment. Mum will be having a biopsy to see if her particular type of tumour can be treated with Herceptin but at this point, the doctor does'nt think she will be a candidate for this drug .

At the moment, mum is having a CT scan of her abdomen and chest. This afternoon, she is having an MRI of her brain :-( and blood drawn.

I am driving Andrew back to Ontario now and we will pick Colin up , get him packed and they will both be off to Vancouver tonight . This is great for me as at least I don't have to worry about Colin . There will be quite a few medical appointments ahead in the short term and then things will settle down . I'll be back at the Doubletree tonight and maybe tomorrow we can hit the great mall in Buffalo and have some retail therapy !

So I think at this point all three of us are feeling happier . The doctor was relatively positive and extremely confident . She feels that the type of cancer my mother follows an indolent course and is slow to progress. Women with this type of cancer, generally do quite well . That was good to hear after the crappy last couple of weeks.

In Buffalo

I'm blogging from the Doubletree Inn close to Roswell Park. Its a very nice hotel and is linked to all the various hospitals and clinics in Buffalo by a tunnel. It is extremely convenient. Rooms are spacious with nice comfy beds.

I might have mentioned before just how proud we are of mum , but it is worth repeating ..... she is made of strong stuff !

We had the appointment with Dr Zalzar, the orthopedic surgeon who did mums knee replacement surgery . Her knee is wonderful , Dr Zalzar can't believe how well she has recovered from that surgery last year. Unfortunately, the rest of her X-rays tell a different story. We did'nt focus too much on the bone scan but what he did highlight was the fact that the tumour on her femur put her at risk for a fracture of the hip on the right side . He has referred her to Dr Jay Wunder an orthapedic oncologist at Mount Sinai Hospital.

Mum handled this news with incredible fortitude. I think having both Andrew and myself with her is helpful . It is really great having Andrew here from Vancouver. He has been a huge support, not only to mum but to me too.

Mother Lion and her cub !

My mother and I both shared milestone birthdays this year. I turned 40 and my mother 70. My mother still INSISTS on being "Alpha Mom " and I am still the cub despite having a 12 year old child myself .....She was choking on an egg salad sandwich today at Tim Hortons. I started to get nervous and wondered if it was time to perform the Heimlich manouevre ! My mother just motioned with her hand (she could'nt talk ) and told me that my concern was making it worse ! Fortunately she was fine and the sandwich just went down the wrong way . There are times when I wish she would just let me be the "Mama Lion" and sort everything out .

Searching for answers

Things are looking better now. Andrew is arriving on Monday from Vancouver. We have an appointment with Dr Zalzar, the orthapedic surgeon in Oakville on Tuesday, Roswell Park on Wednesday and a tentative appointment for Thursday at Princess Margaret Hospital with Dr Sridar, the oncologist. Hopefully by the end of the week we will have some solid information.

Friday Frustration

Now I feel bad that I was derogatory about the secretary in England. She is being very helpful and doing her best. I find it so time consuming to ensure that all the records are faxed to the hospital . Mum is just one of many patients and I think that on the whole, the administrators do their best . However , I had a laugh this morning when I read an email from the UK .....

"With regard to the slides it is highly unlikely that these will be allowed to leave the country but the request is being looked into"

Just wondering ...are my mothers original surgical slides top secret ?

Finally !

We have an appointment with Dr O'Conner at Roswell Park in Buffalo early Wednesday morning. Its a relief because anticipation is tough on everyone.

More ranting

Arghhhh ....I can't believe how difficult it is to work with the various hospital/doctor administrators. The one at Princess Margaret sounds like she runs a very busy clinic that has far too many patients, the one at Bournemouth Hospital has to hunt through dusty archives to come up with old mammograms, the one at the GP sounds strangely detached , as if we are an inconvenience ......I am ready to scream , throw the phone down in frustration ....neither actions will get me any further towards my goal.

Lymphedema

Mum had her lymph nodes removed as part of her original treatment for breast cancer treatment. This unfortunately led to lymphedema in her arm.There is no cure for lymphedema and from time to time, her arm swells up and is prone to infection. To avoid injuries that lead to flare-ups, experts recommend using razors with care, wearing rubber gloves to wash dishes, applying insect repellent (bites can become infected) and even not having the cuticles cut during a manicure. Exercise should be done in moderation, and patients should wear loose-fitting jewelry and clothing and avoid extremes of cold or heat in addition compression garments are recommended for all patients during airplane travel.

I am worried about mum as she will likely undergo various medical tests and a nurse may inadvertantly draw blood from her affected arm. Fortunately, I have found about that the National Lymphedema Network sells bracelets that say “Lymphedema Alert: No blood pressure and no needles into this arm.”

Simple interventions can make all the difference .......

Rant

I am very like my mother and my brother with respect to getting things done. I want the appointments made "yesterday " , with no hold-ups . I find it extremely aggravating that it takes days before my mothers notes from England are sent over to Canada and I find it frustrating to get constant voice mails and a shortage of a live person on the other end of the phone. Based on my own experiences and my work with the Ovarian Cancer Canada I think that it is vital for a patient to become their own advocate in the health system .I was very interested in the timely article in this weeks Macleans magazine about "Taking Contol Of Your Health" . Its a dirty little secret in Canada that there is no such thing as completely socialized medicine and despite laws prohibiting private clinics and doctors, two tier medicine is on the rise in this country. The problem is that there is little or no affordable or widespread private insurance like BUPA in England and so it is only the fortunate few that can jump the queue.

Technology can do a great deal to streamline patient access to care , reduce waiting times and avoid duplications and errors. Recent studies have shown that Canada ranks among the two worst industrialized countries in the world for the computerization of health files. I have done some research into a company called Medicor which is a private cancer care management group that places the computerization of a patients medical records at the core of its services. It collects all the relevent information from a patients various doctors and hospitals and stores it on a PDA so that physicians working in the public system can deliver better care. I find it an interesting and progressive concept and puts the patient firmly in charge of their own health care .

Waiting, waiting, waiting

This is the hard part....waiting to hear. I am trying hard to get mum an appointment at Roswell Park in Buffalo. It is a comprehensive cancer centre and one of the best in the U.S. Fortunately her medical insurance will cover the cost of the diagnostic tests and an appointment with an oncologist . In the meantime, mum has left for her bridge junket at the Baldwins on Lake Rousseau.

Bridge

Hot weekend here in Oakville . Humid, warm weather . I'm finding that waiting is hard .....waiting for appointments , for phone calls ...... just waiting....mum is NOT one to wait and just getting on with things . She's playing in a bridge tournament today in Oakville with her friend Anne-Marie . She has played bridge for years to a very high standard and has been known to be somewhat "impatient" with the "social" bridge players ! For mum, bridge has meant that wherever she is in the world, she's always f found people that share a love of cards and good company.

From: "How To Live Between Office Visits By Bernie Siegel, MD

Manzanillo - by the pool

This is the beginning of a new day
God has given me this day to use as I will
I can waste it: Or use it for good.
What I do is important because
I am exchanging a day of my life for it.
I want it to be -
Gain not loss
Good, not evil
Success not failure
In order that I shall not regret
the price I have paid for it

Mum

This is a picture of my mother Celia. She was born in Scotland in 1937 and is the mother to Andrew and Moira , step-mother to Nigel , wife of the late Alistair and the late Gerry grandmother to Colin,Alexandra and Jennafer . She is the sister of Decia, Charlie , Andrew and the late May. She is the aunt and great aunt of many kids ...some young and a number grown up all living interesting and varied lives. She is a friend to Doug,. She has a wide circle of friends and family all over the world, from South Africa, the UK and Canada . She is an enthusiastic golf and lawn bowls player, an excellent bridge player , a wonderful host , a happy , cheerful person and we are all truly blessed to have her in our lives. She likes nothing better than a wonderful dinner with a nice big bottle of red wine , good conversation and surrounded by friends and family .

She's not only my mother, but my best friend.

Jane Tomlinson

“Everyone wants to wrap you in cottonwool and the running was a way of showing I could still do something positive with my life .It also helped to relieve all the anger, the sense that this was so unfair and why was it happening to me?”


Jane Tomlinson is a British woman from Yorkshire who has advanced metastatic breast cancer the disease spread is extensive. The disease was diagnosed incurable in 2000.

Since being told she was suffering from incurable cancer, Jane Tomlinson has captured the imagination of a nation, she's run a wide variety of races, including the London Marathon, London Triathlon, Great North Run and a number of cycle challenges.Jane has raised over £1m for the Jane Tomlinson Appeal, which helps various charities .

In 2006, she completed a 4,200-mile, 63 day ride ride across America, almost six years after she was given six months to live. Jane’s attitude and determination has been inspirational to cancer sufferers worldwide , she has proved to others that are touched by others that life goes on and anything is possible.

Third Time's A Charm?

My mother has survived breast cancer twice. She's been stoic, courageous and upbeat . This time, mum is saying "Third time is a charm". I'm just hoping that the luck of the Irish will hold out . We need some of it right now ....
Her recent bone scan shows "multiple abnormal foci of uptake in the skeleton...suspicious for metastases"
What does this mean ? At this point, we really don't know. We have requested a consultation at Princess Margaret Hospital in Toronto with an oncologist and we are waiting to hear when her appointment is scheduled. In the meantime , we wait.