HOW TO TIE A SCARF
Monday, 16 June 2014
People in the first few weeks of my diagnosis came at me with positive advice and stories of their auntie, grandmother, family member - twice removed and how they hadn't lost their hair or they continued to work. Although I know this was all well meant, using reinforced positivity to a shit situation. I think the advice should be - unless you've had a diagnosis - keep your advice to yourself. Cancer care is a complete mind field and up until last October I thought "one size fits all" which could not be further from the truth. Each treatment plan is completely individual depending on:
- Size of tumour stage and sizing
- Type of cancer
One major way of defining your type of breast cancer is whether or not it is:
- Endocrine receptor (estrogen or progesterone receptor) positive
- HER2 positive
- Triple negative, not positive to receptors for estrogen, progesterone, or HER2
- Triple positive, positive for estrogen receptors, progesterone receptors and HER2
These classifications provide doctors with valuable information about how the tumour acts and what kind of treatments may work best.
Hormone Receptor-Positive Breast Cancer
About 75% of all breast cancers are “ER positive.” They grow in response to the hormone oestrogen. About 65% of these are also “PR positive.” They grow in response to another hormone, progesterone.
If your breast cancer’s cells have a significant number of receptors for either oestrogen or progesterone, your cancer is considered hormone-receptor positive and likely to respond to endocrine therapies.
Breast cancer tumours that are ER/PR-positive are 60% likely to respond to endocrine therapy/hormone therapy. Tumours that are ER/PR negative are only 5% to 10% likely to respond to endocrine/hormone therapy.
Endocrine therapies for breast cancer are treatments usually taken after surgery, chemotherapy, and/or radiation are finished. They are designed to help prevent recurrence of the disease by blocking the effects of oestrogen. They do this in one of several ways.
· The drug tamoxifen, taken by some women for up to five years after initial treatment for breast cancer, helps prevent recurrence by blocking the oestrogen receptors on breast cancer cells and preventing oestrogen from binding to them.
HER2-Positive Breast Cancer
In about 20% to 25% of breast cancers, the cancer cells make too much of a protein known as HER2/neu. These breast cancers tend to be much more aggressive and fast-growing.
For women with HER2-positive breast cancers, the drug Herceptin has been shown to dramatically reduce the risk of recurrence. It has now become standard treatment to give Herceptin along with adjuvant (after-surgery) chemotherapy in those with metastatic breast cancer.
Has it spread to your lymph nodes?
Lumpectomy or Mastectomy? Reconstruction?
Will this affect your ability to have children naturally? My Breast Cancer Nurse said that mother nature would "do one" during treatment and would not return. As she also said I would lose my hair, I think its fair to say I have to sit up and listen.
I received lots of advice from people who had not had cancer but again knew of a friend of a friend who had tried fairy dust to rhino farts to treat cancer, all worked of course.
The advice that positive thoughts will stop the hair loss clearly worked!
I was told that chemotherapy kills people and that I should try coffee enemas instead or cannabis oil THC, kill enzymes and become a vegan.
I've incorporated superfoods into my diet, but like any fruit and veg, surplus to requirements it's heading out of your system.
I changed my diet, cutting down to one coffee a day, juicing and cutting out cheese or at least attempting to make up 20% only of my diet. However during each cycle when I couldn't taste diddly squat I had loaded mature cheddar on everything. My breast cancer nurse said at diagnosis (dx) that I could have been the healthiest person alive and still be sitting in front of her being given the news "you have breast cancer". This is because cancer does not discriminate.
I lost 3lbs and kept off during treatment. I did drop half a stone whilst in hospital, as I couldn't eat the first four days and after that point the food was just so vile. Since having Charlie DOG I have lost half a stone through exercise. It is better to maintain weight during treatment or lose weight through healthy eating than plan to lose a lot of weight. You are having steroids pumped through your body so be kind to yourself if you gain a stone or two.
The things people say
People: You won't lose your hair
BCN (Breast Cancer Nurse): You will lose your hair
|Reality: NO hair|
People: You can work through chemotherapy
BCN: You are not to work during chemotherapy due to germs and low immune system delaying treatment
Because this is so individual, some people may be able to work. I was unable to work due to the face to face contact with customers and not delaying my treatment plan due to the tumour being stage 3. In the first couple of months of my diagnosis I was not mentally strong enough to work and then past that point was the physical restrictions.
|Reality: Low immune system = Bilateral Pneumonia|
People: You'll be ok during radiotherapy you'll be able to work
BCN: Don't be surprised if you have days where you feel the batteries have been taken out. This lasts for about a month after your last zap is delivered.
4.5 weeks of daily radiotherapy = fatigue
My nipple turned brown/sunburnt and then peeled with the help of a miracle tube of hydro gel, the skin under my breast has broken down and the skin under my armpit is so sore that every time I roll over at night I wake up in pain.
During each cycle I went out with my friends and maintained normality. During these nights out I would often bump into people who would comment
A: You look much better than I thought you would
B: Does Cancer has a particular look? Should I be looking ill constantly?
A: You look really great
B: Shit, how bad did I look before?
A: You must be feeling better if your drinking
B: I'm sorry I haven't put my life on hold.
A:Should you be drinking?
B:Can I see your medical credentials?
Some comments have infuriated me, which I am not prepared to share.
From head to toe - changes to your body
during treatment and after
Before your hair starts falling out you may
experience a very tender and sore scalp, this
is the hair follicles giving up the ghost. I
wore a soft cotton jersey cap during this
time and massaged in Argan oil.
During chemo cycles 1-3 my skin had a "chemo
glow" and was flawless, as treatment
continued from 3-6 it became very dry.
My eyebrows thinned, so all the thick long
hairs fell out leaving fine stumpy hairs.
My eyelashes fell out leaving a handful on
each eye. They fell out from the outside in.
Can become very dry and itchy
Started running constantly when the nasal
Dry mouth (current)
The lining of the roof of my mouth peeled off
leaving balls of skin attached to the roof of
my mouth (Internal skin peeling)
Nails - current (finger nails and toenails)
Nail changes can affect all or some of both
the fingernails and toenails. Taxanes,
anthracyclines, epidermal growth factor
receptor inhibitors and small molecule
multikinase inhibitors are the
chemotherapeutic drugs most commonly
associated with nail changes
The type and severity of nail changes vary
depending on the drug, dose, duration and
frequency of treatment, the affected nail
structure, and the environmental factors.
hair loss and now my hair has returned they have grown back all looped and ingrowing, particularly lady garden and leg hairs.
The vein in my left arm is stretched taught which means that I can't over stretch my arm without it hurting. I have pain in my left wrist which hurts if lightly tapped. It has occurred in my treatment arm, where all blood tests, injections, IV fluids and chemotherapy have been administered. I can not have any tattoos or injections in my right arm EVER due to the removal of my Sentinel Lymph node http://en.wikipedia.org/wiki/Sentinel_lymph_node and risk of lymphoedema
|Auxiliary Web Syndrome: Cording|
Hip Joint Pain (current)
I had a bone scan last week where I discovered that I am claustrophobic. I really don't like the CT scanner! From long periods of sitting to standing I am doubled up in pain and stiffness from the hip joint. In the evenings I shuffle across the living room. So I'm currently waiting on the findings of the report.
When I received my diagnosis I bought this book, which in parts resonated and in others scared the shit out of me. I'm looking forward to re reading it, now I'm almost out of active treatment. Lisa unfortunately died and was diagnosed with secondary incurable cancer as it returned in her bones.
But while I lie on the radiotherapy bed, I smile, because Lisa was right - this is CRAP FM.