Then.
Sometime in the mid-1990s, my mother who was in her 70s at the time, was diagnosed with bowel cancer. Her treatment and care were swift. Her family doctor called a few days after my mother’s annual check-up and told me to take her to the hospital’s emergency immediately and that an oncologist was waiting for us.
My mother wasn’t admitted, but she was given a private area in the emergency deparatment where tests could be performed. I can’t remember exactly, but I think she was there for 3-5 days. I stayed with her for about 12 hours the first day and really felt my mother’s medical needs were cared for.
After all the tests were completed, my mother was given a date for her surgey — it might have been 4-6 weeks later. She was in the hospital for at least one week.
In the hospital, social workers, CCAC (Community Care Access) and other social services visited my mother, and also visited me at home, to ensure she would receive all the care she needs once discharged.
When my mother was discharged, it was amazing to see all the services available to her:
- CCAC: being the umbrella organization that manages all the ancillary services such as VON, Red Cross, respite care, etc.
CCAC gave my mother approximately 15 hours a week. The care eventually went down to 21 hours per month due to cutbacks. She had services for approximately 4-5 years.
In January, 2003, my mother was admitted to a longterm care facility, where she still resides. She’ll be 90 years old in 2009! I joke that she’ll outlive me … and hopefully that’s not true, but I do feel too young to be going through this cancer.
Now.
I was diagnosed with breast cancer in December, 2008, and my Dr. Ciara (my family doctor) was very swift and efficient in getting me to a cancer specialist: unfortunately, it was with Dr. Indiscreet initially.
It’s all these specialists that I find disappointing and very frustrating — there is no “team” as everyone seems to speak of and not that I don’t have other things to do while trying manage cancer, but I also have to keep track of who said what and who needs to know what …
The original surgical oncologist (Dr. Ewan — see below for clarity) couldn’t see me for about 2 weeks so my family doctor arranged for another surgical oncologist (Dr. Indiscreet) to see me a few days later, and perform the biopsy December 5, 2008.
Thankfully, my instincts told me to keep Dr. Ewan’s appointment, and he ultimately has become my primary surgeon — I call him Dr. Ewan McGregor because he looks very much like the actor — and you won’t get any complaints from this old broad about it!
Goodness, can I tell you about Dr. Indiscreet who did the biopsy? I’m sitting in his waiting area with about 15 other patients and noticing that each patient goes into his office for about 20 seconds (not an exaggeration) and either comes back out to the waiting area, or leaves. I’m thinking that this is like a cattle drive.
I also observe that the receptionist is telling people about their procedures. It was unbelievably indiscreet as I can hear her discuss colonoscopies and various other procedures with about 5 or 6 people. I can also hear rumblings from other people that they wanted to leave. I wanted to walk out, too.
When I’m called in — I’ll give him a perfect score for puncuality but that’s because he doesn’t do anything — he introduces me to his resident who tells me to get undressed — I think he just pointed and grunted and never actually strung 2 or 3 words together. Literally, Dr. Indiscreet touches the lump and announces “yes, there’s a lump”, and tells me to get dressed and sit in the waiting area again.
The waiting area is still crowded at 5:45 p.m. I wait for at least 15-20 minutes before the receptionist calls me and begins to tell me when and what time my biopsy is, and off I go, feeling quite dehumanized.
Doctors, Doctors Everywhere.
Dr. Ewan initially tells me that “my breasts are generous and I’m a good candidate for a lumpectomy”. I wanted to thank him for noticing, but thought it might be inappropriate.
I am thankful that my instincts told me to keep his appointment. Although his good looks certainly don’t hurt; it’s his compassion and demeanour that speaks volumes at this point.
That pathology report isn’t back, so he makes another appointment to see me about a week later.
Unfortunately for me, Dr. Indiscreet receives the pathology report and has already made recommendations to Dr. Ewan. Dr. Indiscreet is quite well-respected and Dr. Ewan proceeds to tell me that there is some justification to Dr. Indiscreet’s assessment of chemotherapy prior to surgery (also called neoadjuvant chemotherapy – link to Wikipedia).
The assessment is for chemotherapy for approximatley 6 months before surgery. What? I could see Dr. Ewan didn’t really agree with the assessment, and I assured him that I wanted him as my surgeon and couldn’t care less what Dr. Indiscreet says. Unfortunately the damage has already been done by Dr. Indiscreet, so I was stuck … unless I wanted to waste more time getting a new doctor, but was concerned that anyone new would still see Dr. Indiscreet’s notes.
This is where things get muddy and probably why it took 2 months before I had surgery — I was in so much pain that my family doctor prescribed Tylenol 4s. This waiting period is awful, if not borderline cruel.
Dr. Ewan gives me an appointment with a medical oncologist December 30, 2008. I didn’t really know what kind of doctor this is until I went and discovered that these professionals are for chemotherapy.
I meet the oncology nurse and tell her that I do not want chemotherapy — and wondered what the heck happened to the lumpectomy option. Sometime later, perhaps in January, 2009, I ask Dr. Ewan about the lumpectomy option and he says that it’s no longer an option — I’m not quite sure why, but suspect it’s because the lump was doubling in size every 3-4 weeks — and yes, I was in absolute agony.
Some background about me: I’m single, live alone and am self-employed. I have no children, and no family to speak of — they are all bizarre and I’m convinced I’m the only person in the family that’s not cognitively impaired [link open definition of cognitive impairment]. Chemotherapy would be financially catastrophic if I considered it first.
I find out from Dr. Ewan after this meeting that the only purpose for chemotherapy at this pre-surgery stage is to shrink the tumour and to “make it easier for [Dr. Ewan] to remove”. What? Don’t they consider me in this equation? I’m in so much pain that to go through chemotherapy for months on end seems incredibly cruel.
Dr. Chemo actually agrees with me and says that it’s unlikely Dr. Ewan will be able to save my breast after chemotherapy — I might have considered chemo if there was a chance that I could walk away with both breasts intact. Dr. Chemo calls Dr. Ewan from the cancer clinic and tells him that he concurs with my decision.
I don’t do chemo before surgery.
What Care are You Talkin’ About?
Would you believe that I’m discharged the day after surgery? Yes, it’s true! They send me home with JP drains coming out of my chest and metal staples reminding me of a large zipper — I still can’t look at it.
During all my doctor appointments, pre-surgery appointments and any medical office I visit, I try to tell everyone that I don’t have any family and will need help after surgery. I also have private insurance and was hoping that they could keep me an extra day or so knowing this.
If it wasn’t for my mother’s cancer, I would have NEVER KNOWN of any of these homecare services which are covered by OHIP.
I’m visited by CCAC about 7 hours after surgery who try to convince me that I can find a ride to their clinics to check my dressings and drains.
I’m quite angry at her and ask her what doesn’t she understand about “living alone”. She tells me she’ll speak to someone and come back. She never returns.
The next day (Saturday), before I’m discharged, I get another person from CCAC who is spewing the same nonsense — she tells me I only need 2 nurse visits at home and nothing more.
Wow, as I was afraid, I’m going home alone, and without any help.
The next day (Sunday), while at home, the nurse comes and says she’ll definitely write a report that I need more care. She also tells me that it was Dr. Ewan’s responsibility to ensure all this assistance was in place before I was discharged. He says not so — and I don’t blame him for not knowing — having to learn information about homecare seems out of sync for a surgeon.
On Monday or Tuesday of the following week, I speak to a Case Manager at CCAC and she tells me that it’s her “philosophy that the community should take care of me”. I’m a private person (meaning that I don’t want to tell the neighbourhood my circumstances, nor is it any of their business) and told her I would never ask strangers, even though they are next door, to help me. She had the nerve to argue with me and try to ram her philosophy down my throat: asking me confrontational questions like “am I new to the neighbourhood”
…. As my blog title says, I may have lost a boob, but I haven’t lost my balls, so I have no problem giving it right back to her (and others who have proven quite uncompassionate and darn right rude!)
I’m so disappointed.
As of today, I have a nurse come to change dressings and check my drains every 2-3 days. I also have Red Cross to assist me with hygience twice a week; an hour each time — I had to beg to get that 2nd hour.
And hopefully have the staples removed in a few hours.
…………………………………………………….
I’m back from my follow-up appointment with Dr. Ewan, and he tells me I have to have this homemade zipper on my chest for at least 3 more weeks. It’s not healing as well as he’d like.
He did remove one JP drain (link to Wikipedia) in the office … and I haven’t felt that kind of pain before! At first, it just felt like a bee sting … and then as the tube was being pulled down, it felt more like 100s of giant bees attacking my side … oh woe is me to have to go through it again in a few weeks.
…………………………………………………….
Future.
Your guess is as good as mine … but if I were a bettin’ woman, I’d say it will only get much worse.
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