A Date For Treatment Has Been Set

Wednesday, November 30, 2011

It has been a week since my last entry. So much has happened. My energy crashed along with struggling to understand how a blog works. My life has spun around. Will it return to vaguely similar? Do I want it to? New career prospects, new home, new eating habits, new neck complete with skin colour and tautness?

My 9-year-old daughter has sung and danced her way through another school Christmas Concert. I have been wished well by several parents in an uncomfortable, over-filled theatre foyer.

The Top Dog on my case, Dr Brutal, Head of Ear, Nose and Throat, dropped the worst case scenarios on me last Wednesday, having rifled a nasty scope up and along my nasal passages. Reduced me to weeping and gripping my husband's arm hard. Cancerous Tumour, T3 (medium stage) most likely, T4a (possible recovery, virtually terminal) if it has entered muscle tissue, T4b, in the bone (forget it, you probably won't have long to live). He was mildly reassuring while blunt. More information overload.

Despite an agonising 40-minute wait to see this man, we were out in time to enjoy a supportive meeting with a friend by the seafront. A quick turnaround back to the Oncology Unit for a prolonged and delayed session with Nurse Kate on how to look after my skin during radiology. "It will burn. You must use Sorbolene at least three times a day, in the morning, before and after the treatment and last thing at night," I think she said. Haven't absorbed all these instructions yet.

She said a lot of other things and gave me a fat folder of handouts none of which I can recall.

Social worker Vicky stole us while we waited for Kate, telling us about the additional Carer's Payment Michael may be eligible for through Centrelink. We had a long yack about nothing I can recall.

Thursday was a distasteful trip down memory lane to the Local Mental Health Centre, which I frequented often in my late 20's and 30's. Suspicious at first of the slender hippy chick psychiatrist she was actually okay. Later that day she rang to say she had written a letter to move us along in priority government housing.

Friday is a complete blank. A chap at a 12-Step meeting at which I had shared about my cancer said "my level of acceptance was inspiring". I was grateful for that.

I had my usual lovely Saturday morning with friends and 12-step members. Managed to score a couple of $2 skirts from the church op-shop I can wear.

My daughter fell sick on Sunday, earache and fever. This was upsetting and depressing as she sickens just before her Christmas concert each year. She said she was more anxious about me than anything. My behaviour lapsed into occasional shrieks of frustration. It would've been better for all of us if I had gone to church.

Amy was drugged and dispatched to school on Monday. I heaved a sigh of "Thank God" when the final curtain plummeted. A planned ice-cream trip post-show was aborted when the shop had closed down. Not a fabulous night. Still.

Tuesday, dentist!! Pommy Andrew, who likes to admire his 'masterpieces' went to town on my mouth, scaling and cleaning and plying me with top shelf toothpaste for "sensitive teeth prone to decay". Not that mine were too bad considering, he said. "You mustn't have a sweet tooth". I've only lived on ice-cream pretty much since the biopsy on 11/11/11 at 11am. He also gave me a mousse, like tooth conditioner, with bulk fluoride to bolster my enamel. Vanilla flavour. Yum! Something that tastes good at last.


I saw him again today. Despite having my trismatised mouth (left side lock jaw) prised open for over an hour we had quite a jolly time while he repaired a filling and polished another. Talking about the horrors of tooth whitening toothpaste and bleaching treatments, and pros of coffee.

My BFF, Sam, escorted me today into my journey of pain horror. It was lovely to have such a caring friend pick me up and be there for me, take such an active interest in the cancer.
Dentist, final questions with ENT, the formal date for start of my treatment, chemo and radiation therapy is set. Monday, December 12, 2011. Bring it on.

One disturbing wound continues to bother me.... more than some others. The centre of my hard palate feels raw, like it's been sliced open and the area refuses to heal. What is that? The cancer?

Thanks to Sam being so generous with her time, I have also connected with The Cancer Foundation today. They were welcoming and responsive. Left with a load of booklets and calls to come back whenever. Now just two wisdom teeth to be extracted on Tuesday. Fun, fun, fun. And Amy has her orthodontist appointment on Monday. Another big tooth week for the family. A few days to recover and read the literature before Treatment begins in earnest!!

More stunning tropical beauties arrive from friends and supporters

C'est La Vie till next time.

Into the Cancer Whirlpool

Wednesday, November 23, 2011: 1751

A week ago my mouth was in agony following a biopsy the week before that.  I went to see the ear, nose, throat specialist to deal with the pain. He looked at me cheerfully and said, "You're here for the pain aren't you? I did your biopsy on Friday. You probably don't remember."

Instantly, I felt like strangling and punching this butcher, the pain was so intense.

"You have throat cancer. A big one. That's why it hurts so much. Five centimetres emanating from your soft palate."

 I started disassociating -  falling apart while remaining seated, staring at the specialist. He spoke on drowning me in information, details, facts. I felt submerged, half a metre under water. Kind of numb, a buffer of something between him and me.

Tuesday, November 22, 2011:  2.43pm

A major vegie omelette under my belt and a little snooze I am feeling ready to face the second half of the day. Child to arrive home soon so time is precious.

This morning started ominously knowing that the results of yesterday's CATSCAN would be delivered around 10am. Do I have lung cancer? Has the lesion spread to my lymph nodes that hem either side of my neck? Nausea, tension were present.

Now it seems like such a long time ago I can barely remember what happened before Michael and I got out the door at 9am to visit first Amy's school principal and then the Oncology Department.

I dress with particular care aware that I would be jumping up and down off a number of high narrow tables, including having a second CATSCAN, and a plastic mesh mask melded to my face. Simple fun tunic top and leggings. Cardigan essential for the hospital air-con.

The power of prayer is everywhere

The Angel Cards called me again this morning and I was blessed with Saint Dymphna - the St of Mental Illness, which I found comforting since I have bi-polar which may go haywire under the duresses of the next three months. So far so good. I am feeling remarkably stable. Eating well-ish, sleeping, not TOO irrational, though I almost lost it over the lack of home-brand bread in Woolworths yesterday. I mean, please, a loaf of bread? Get a grip, girl.

The greatest love of all, the hardest to live up to

Dymphna urged me to let my emotions out, so I freely expressed myself today much to the amusement of the gorgeous radiation therapy doctor. More on him later ...

I was to focus on "finding it", courtesy of St Anthony. Not sure exactly what I have lost (health, confidence) but we picked up a new bedside table for me at Crazy Clarks along with a vaccuum cleaner, and a couple of GLASS water bottles. No more drinking out of "carcinogenic cancer-causing" plastic if I can avoid it. Mine is pink to match the "pink lady".

+

I almost had a meltdown at the school when much kindness and empathy was shown. Though I am becoming used to that reaction now. It is always beautiful receiving humanity at its best. My 9-year-old's end of year situation was discussed and sorted so that she would be understood and allowed to feel her way through my illness. Counselling sessions at call and the Assistant Principal in line for her to talk to any time she needs another adult to lean on. I am so glad she is at that school.

Amy drawers a prayer - These Hands, our family's hands.
 Pearl Cat is pulling her paw.

After our shopping capers we head to the hospital. A woman in the queque behind, frustrated with me asking the price of an item, barked a nasty remark. It caught me quite off-guard after all the love and kindness we have been swamped with since Friday. Fortunately, I responded in a civil manner, though I wished HER a dose of cancer when I was in the car with Michael moments later.

We had an interminable wait in the Oncology unit. We were early and the doctor was about 20 minutes late. Waiting for death sentence results seriously slows down time.

Priscilla, the speech pathologist, sprung a diversion with her series of questions and swallowing tricks. She even offered me a tub of two fruit which quelled my hunger beautifully. Apparently I am doing quite well at this stage, eating and talking wise. It will get worse, a lot worse, when the ulcers erupt about three weeks into radiation.

At last, Sid, swoops into his office where we are ensconced, medical student Emily in tow. I am the "radiation doctor" he introduces himself and brandishes a business card. "Siddartha", my favourite book, I blurt upon meeting this endearing individual, instantly likeable and who clearly knows his stuff. It's "quality assurance" with Sid all the way and he sets back my treatment start date to December 12. This is "high intensity" and we must get it absolutely right. Takes three weeks to prepare. Make sure everything is spot on. Try out the radiation on a dummy patient, make sure it is hitting the right spot. Wouldn't want to make a mistake.

Not the slightest bit concerned about my death scan he checks it out for us anyway. "All clear, as far as I can tell". "Are you sure?" I ask. Sid has had a very quick look. "Yes, yes."

So after a few more rudimentary questions and an information buffet I sign a treatment consent form. We move along to the next stage via some super comfy recliner chairs. Lee arrives to whisk me off to have my second CATSCAN in two days and fit the plastic mask.

The white plastic mesh which looks like a hockey goal, descends upon my face, hot and wet. It is rapidly pressed and clamped securely in place. Every instinct in my body pushes me to wrench this suffocation off me. "God grant me the serenity to accept the things I cannot change ...". At last Lee returns to free me and I'm out of there. Waiting again for more nurses and more information regarding skin care.

No, I can't take any more of this today. We're gone, into the sunshine, home for lunch. Rest, relaxation. Meanwhile, a beautiful friend has invited us to her home for dinner. Amy slaves in the kitchen making her signature dish, "Spag Bog" for our tea tomorrow night. C'est la vie!

Then the phone rings - Ear Nose and Throat doctor wants to see me TOMORROW morning. But I have an appointment for next Wednesday. "No, tomorrow, please" I hate the urgency of the nurse. What dread does this mean? What choice have I got? I must go. I negotiate for my 12-step meeting at 10.30am. Yes I'll be there at 9am. 

"I'll get you through first up," the nurse says. So 9am, 10.30am, 1pm to see the Onconology nurses,deferred from today. Phew!!!

Then another message - make an appointment please to see the psychiatrist at the local mental health centre.

"Thursday, 9am," and on and on it goes .... Am I going to get a break here? Amen.

Love you heaps,

Gill xxxxxxxxxxxxxoooooooooo

Monday, November 21, 2011:  1pm

"So far today I've had the chemo chief, Meena, lovely, lovely lady with a generous behind who plied me with info before softly seeking the history of my sick life. Michael nearly fainted - turned a whiter shade of pale - No wonder that's his favourite pop song.

She introduced us to nurse Paula who rambled at length about something to do with appointments and chemo and radiation before passing us on to Louise, Nutritionist, who beamed health at me, said little. She just asked a few questions about what I was able to eat while nodding beatifcally.

Then Kate, nurse, invited us in to her cubby hole and waxed lyrical about "the pink lady" potion which would numb my mouth and throat for up to two hours, enabling me to eat pretty much anything I fancied but it would all probably taste like cardboard. Start with 10mls, you can go up to 30mls when things are tough, see how you go. "It doesn't taste very nice".

Then it was off to have the CATSCAN to see if the cancer has spread anywhere else - lungs, neck. Waited long enough to freeze and dry out, then whoosh, through the scan with dye - hot rush and icky feeling all over. Out again to finalize the paperwork and have the other arm pierced, and about 6 vials of blood extracted for base line levels of all my drugs and conditions. 

Finally home, a nice hot cuppa coffee. Had already sculled Michael's 600ml concoction of Milo and coffee, in the sun, the moment we exited Royal Darwin Hospital.

Reclining on the couch studying a stack of Christmas "light reading", a calm moment of normality. A delicious mango later, (after numerous blood spits possibly caused by a rush of Milo?) I check my emails.

Taking the time and opportunity to respond in full ...as I intend to start a blog asap, So there you have it Muse M.  Shortly I will re-dress to head off to the hospital for the second part of today - the JOLLY Dentist!

To continue: at 2200

 The pink lady is disgusting but it numbs my mouth fairly effectively. I am ushered into the dentist almost immediately. He is Indian. I can barely understand a word he says but he does his best to assure me nothing bad is going to happen to me today. An agonising half hour later, opening the mouth wide is far from easy, let alone the other things dentists get up to... The upshot is a scale and clean, a filling replaced and a filling repaired, one on the left on Tuesday and one on the right on Wednesday next week, oh Joy of Joys. He says he will also make me a dental guard that I can fill with fluoride to protect against the rapid decay caused by radiation therapy or some such hideous thing. Can barely wait. Looks like sugar may be history.

Home just in time to beat the little one's arrival at 3pm. Knackered. Decide we have to tell her I have cancer before she finds out from somewhere else. Michael is compulsively cleaning to the point that, at great expense to my throat, I shout at him to SIT DOWN, and then blurt out to Amy I have Cancer. She bursts into sobs and we console each other for about 10 minutes. Then she starts the rapid fire questions. "Will I die? Is it catching? Who can I tell? What's going to happen?" and so on. Then she seems quite settled. We opt for Subway for tea, I swallow another revolting 10 mls of Pink Lady. No sooner than we arrive at the shops I spot Nana May and Lynde, who I haven't seen in months. Amy gets to break the "news" for the first time and handles it admirably. Another member floats past. I don't believe in co-incidences. We jump into the Good Luck Shop so Amy can choose a lucky charm. She finds an orange kitten hologram which suits her and my budget down to a tee. After nabbing a few items at Woolies we head off for our meal. Helen has tracked us down finally after being on our tail since 2pm. She presents me with a massive bouquet of stunning purple orchids and white lilies barely opened, a floating "Hope you're feeling better" balloon and an assortment of my favourite chockies, Turkish Delight (soft), Cherry Ripe and a Toblerone for Michael. It is a lovely meal, after an enormous day. Embraced in love and caring friends.

Home for Master Chef and solid relaxing. Sorry for those calls I missed. My phone has been off all day and it is playing up a bit as well.  Thanks for these beautiful peach roses and all the well wishes.

Abundance of joy. Biggest Heart Helen

Peachy lovely ladies keep my spirits up

xxxxxxxxooooooooo
love Gill