Fingers and Nose and Wobbly Toes

After years of appointments, ups and downs and 100% trust, in a friendship I never expected to have.  His mobile number is finally in my favourites and today I use it with great gusto.

We all thought that exercise would strengthen my legs, but I knew it was more than that, something else was happening in my podgy little trotters.

So like stealth, I went to my favourite’s in my phone and found, ‘Gary Richo Mobe,’ and sent him a text.

“Hi Gary I think I need to see you asap. I’m having lots of pain in my liver, feeling very sick and lots of balance when I walk, any chance of seeing you today? I just can’t bare it!

Rgds Rachel “

2 minutes later….

“Call rooms- Yoland there I am away. Gary”

So next minute I ring his rooms and as I’m booking  in to see Yoland,

I can here him on the phone giving her an update of my current status.

The Brave Man and I go in and see her that afternoon.  I explain to her about the new symptoms. She run’s some,  hands on ‘cognitive testing’, and all of a sudden I can see before my eyes, that no matter how determined I am, my brain won’t let my finger touch my nose.

My feet won’t let me walk in a straight line. It reminds me of the stories my Dad use to tell me, when the local country sheriff, would pull him over to check if he’d been drinking. The fact that he was asleep in the car waiting at the crossing as the train passed, might have been a slight hint that he wasn’t out drinking lemonade spiders. When asked what he was doing, Dad just said the car wouldn’t start & he was trying to get it started, and miracles of miracles, it started just as the boom gate was going up. Dad bid his way and amazingly didn’t get arrested.

So I sat on Yoland’s hospital bed staring at my grey feet dangling below, and wished so much in my head that I could make them move, but they just wanted to stay there.

Throughout my whole challenge with BC, I always used, “mind over matter.” I thrived on people saying, you can’t do that, you won’t do that again. It just meant, yes I will, I’ll do it again, I’ll show Sienna and Gary that this little body of mine is strong and I am so indebted to this strong little body. And knew with a little tiny determination to make one step forward, I would get better.

But after seeing Dr Yoland, I realised better was no longer, ‘mind over matter ’ would be no more, something was terribly wrong.

We urgently need an MRI. So she books me in to Hotel Cabrini Brighton, as an in- patient and then had me transferred to Hotel Cabrini Malvern the next day.

 

Ironically it’s also the place that we had our girl, nearly 8 years ago. Another happy and lovely memory we take from our lovely life together. I always get butterflies in my tummy remembering back to December 11^th 2004, having the most exciting time of finally meeting our little pink girl.

Getting these massive headaches, that would come on any time of the day and it was like this big cricket ball pushing against the base of my neck, actually probably worse, it was like two baseball pitchers lining up at the same time and pitching straight to the back of my head cracking my skull to smithereens!

Like a vice squeezed into my head showing no mercy, actually, no, the pain I see when my credit card payment comes in and I know I’ve got seconds to minutes before my brave man sees it too.

Or it could be just some kind of body time bomb, pushing harder and harder until my head and ears would give way exploding through my bedroom ceiling.

So I settled into hospital straight away, and my Brave Man and I talked about the MRI scan I was about to leave for. As I opted not to do the Ambulance thing, (too many bells and whistles and fuss). The Brave man drove me to Hotel Cabrini Malvern and before I knew it, my two Besty Troops, Rel and Tiff were sitting in the back of the car too, calling out, “Precious Cargo coming through! Get out of our road”.

The MRI scan went pretty quickly as I was hoping, and by the time I went back to Hotel Cabrini Brighton and settled back into my bed, Dr Yoland came in with results in hand.

My beautiful and protective Doctor Deb was there, which was good. She would explain things later that I didn’t understand. Of course Brave Man was there sticking to me like glue and me sticking to him like superglue. We are still so young, and whilst we don’t feel sorry for ourselves, we just think, this is REAL REAL Hard and really, really unfair!!!! We just want to hide in each others arms and cry and cry.

But we breathed slowly and tried to stay in control. The control I focused on was the hand holding mine, and then Dr Yoland, started explaining……

–         What they have seen in the MRI, is on the base of the brain which is around the cerebellum, there is cancer there. She said that they can see the ‘markings of cancer’ sitting on the outside of my brain. This makes total sense why I was experiencing dizziness, total lack of balance.

The cerebellum is an important structure for:

• Balance
• Speech
• Control  of movements (co-ordination)
• Walking

Then there’s the spinal cord. She explained, that the cancer in the brain can cause a ‘drippage’ effect. So it’s been slowly dripping down my spinal cord, but whilst there’s evidence of it, there’s no big ‘lolly pops’ that they can see at this stage. It’s a wait and see situation, and once I start feeling the symptoms causing pain or other side effects, we’ll deal with it then. “Yep, I’m feeling pain, lots of pain my heart is going to explode, this is painful.”

Ok so I’m not so overwhelmed with the side effects. But quite relieved it’s not in an area where I start forming different personalities or even worse Tourette’s. I really don’t want to tell my friends or family to spontaneously ‘FFOFF’. Please forgive me, it’s not me.

I was also quietly excited that nowhere on that list, was there indicating I would have to, stop using the computer and cease ordering online shopping. I’m band from using the car, and feel sad that my independence is being popped off the list. Oh and there was mention of a ‘walker’, and I’m guessing it’s not a ‘dog walker’.

Because chemotherapy does not at all work on the brain (in my case) The next step was 5 days of radiation, this will hopefully reduce swelling, reduce, the dizzy wobbly legs and even more hopefully kill those little ‘mother zappers’ in their tracks.

I knew what the Brave Man and I wanted to ask and it seemed much easier to ask Dr Yoland than my Health Stylist…. He would have already known, but I didn’t want him to feel bad. So my Brave Man asked Yoland. “Without chemo, radiotherapy or any other treatment………how long have we got?” I felt strong and ready to hear what she was going to say….

“Without treatment maybe Christmas”………

But I’m having treatment. So there’s no, ‘without treatment’. I will never give up, none of us will, I would never do that to my magic family of three, and they would never give up on their mum or wife. I was even offered a little white flag…….. But I will never give up, and I know a great place where that ‘little white flag’, would snuggly fit.

So that day we went straight to the Hotel Alfred and I was fitted for a mask. It was so attractive, I thought the Brave Man and I could wear it for Halloween.

 

We met with Dr Karen Taylor who is my Radiologist Oncologist and she went through the process and what I would expect to feel going forward. She did say that the radiotherapy would make me feel worse before I would feel better again. So I’d be more dizzy and wobbly and have total memory short term memory issues.  The swelling too would give me some trouble, but I’m now on some kind of pain patches that should help.

Each day either the Troops or the Brave Man took me into the Alfred radiotherapy unit, and the zapping began. It only took 10 minutes  for the zap but the setting up and the mask took a wee longer.

I was so confused about how relaxed and unscared Iwas, I just thought here’s another chance, let’s do it.

By Wednesday 5 days later, I was done and was ready for the next day of Chemotherapy.

Of course the mesh face mask was a highlight, and my chins have never felt so secure and together. My Brave Man’s, little heart was being wounded and wounded each day, seeing his love like this. But I try so hard to show him I’m going to be ok, and he and Sienna will be ok in time.

But to lighten the atmosphere of the room I tried to make some light hearted jokes about, being Hannibal Lecter’s  love child, and what a great thing for Show and Share for Sienna.

Yep……. Totally not funny…. Maybe I’ll open the front door with my mask on, with my little white fluffy pieces of hair pocking through the mesh holes and scare the bejeezuz out of one of the little neighbouring kids. The vision of that would be at least 5 years of teenage therapy.

Oct 15^th  – Gary Richo back – He confirmed Yoland’s treatment plan, he agreed with Yoland’s potential timing plan. But did say that no-one knows what this ‘stuff’ will do. It’s, totally irrational and erratic and can only be controlled up to a point.

We talked about options….

A big bolt could be screwed into my skull and brain where they would inject the chemo directly into my brain everyday. It would have the added effect of dripping down my spinal cord and still reach my liver.

Of course the first vision for me was, oh hello‘Patient Rachelstein’, and all the issues with having a bolt stuck out of my head. Infection, worse headaches, someone bumps it. And the best thing for going through all of that is the fact that it could give you an extra 2 -3 weeks.

My Besty Troop Tiffy: “Oh yes, I remember fondly those final three weeks when Rachel had the shiny gold bolt hanging out of her head, I thought she was just being cool to the end with the latest ‘sass and bide’, head accessories.  

Those nasty little cells can be hiding anywhere in the body. We hugged, I thanked him for everything, I know he would have tried anything to save our family.

Oct 15^th

As the radiotherapy went on I became more affected by the balance I was feeling in my legs. Today my little Troop Mandy took me, I’d make a few steps hanging on to my Little Troop Mandy, but all of a sudden this strange fainting feeling came over me along and then the intensive feeling caused by the fluid on the brain, with a serious feeling of confusion. I recognised these feelings and new I was about to lose it.

My Troop although about 20 sizes smaller than me, managed with all her might and determination to keep me from hitting the floor.

And as we tried to find a seat my legs went ‘boneless’, I had to laugh because it probably looked like two dancers at the Muppet Show at the end of the night.

I kept saying to her, “quick don’t let me look like I’m sick”, with that she giggled for about 10 minutes, because just about everyone were looking at us in sorrow or, “gee that looks a little weird dance.”

So it was 10 days since we were told, I had already had 5 days of radiation, one chemo and waiting on one more.

Telling Sienna

We knew we had to tell Sienna sooner rather than later, she knew something was happening. So we spoke to the lovely Brave Lady who is an expert in childhood counselling and especially little darling petals like mine who his experience a hard time.

We set my room up so it was nice and comfy, and she had her dinner. Such a heartbreaking feeling knowing what we were about to tell our girl. Even trying to start the conversation. We were like two little kids about to confess to our mum about something naughty we had done.

I had mentioned the other day to her that they found some cancer on the brain and we’re just having the radiotherapy, to get rid of it.

The next day, when the Brave Man took her to school he tried to explain that mummy’s really sick. “Oh yes I know Daddy, she’s got brain cancer.” I think the Brave Man’s head exploded that very minute.

So I said to her, “Darling I was told today that the medicine is no longer working”

“She was so shocked”, even got a little embarrassed asking the next question.

“Does that mean you’re going to” …… and she couldn’t bring herself to say the word, so she stroked her fingers across her neck.

“Yes it could darling, and maybe sooner than we would want to.”

“Daddy will you get married again?”

“I’m going to marry you”

“You can’t marry your daughter… what about that lady you said you really wanted to marry.”

“Who was that”?  I asked, while I totally wanted to go to the bathroom and paint on my eyebrows, put some liner on, so he could totally see how pissed off I was that he was having these conversations with my girl. She even mentioned her name, but couldn’t quite pronounce it.

Gary sat there weary but not wanting to upset me.

“You know Dad it was Emmmm Person?”

“It was Elle McPherson”

“Oh Sienna not her”

So we reassured that we are here, no matter what, while she processes this, just like Daddy and I are doing. She can be on her own or we all sit in the bed asking questions together. But I would never allow her to cope with this on her own.

She asked her Brave Dad., “So does that mean Daddy you’ll just pick me up from school and tell me mummy’s gone?” Ouch another crack in my sad heart.

I told her we would always be together, I told her that the Doctor’s know when the time is near, and they’d be so happy if we all wanted to cuddle up together.

She asked about if I wanted to be buried in a coffin or cremated. I wished in my head so much the next question wouldn’t be, what’s a cremation.

Sienna: “So Mummy what’s the difference between a burial and a cremation?” Do I have to mention, burning, furnace, bone crushing machine?

We are not religious people but we believe in peacefully and slowly making our way to the stars once you pass away.

I wrote a poem to my two loves…. All about, I will always be around, through the breeze in the trees, the little raindrops on your cheeks and the fluttering of the leaves in our special tree.

Happy Anniversary to the Love of My Life

Nine years of marriage, adventure, laughter, discovery, and just being together. Not to mention the 5 years before.

It wasn’t until I got sick that I realised I married more than a ‘good man’, I married a Guardian Angel. A man with more human kindness and compassion that I had ever experienced.

Even though we have been together for 14 years. It has been a marriage and love that could never have been more richer, more loving and magic than you could ever imagine.

I love him so much and feel so sad that there will be a day that we won’t be sitting together enjoying our beautiful Johanna, with the warmth of the summer sun on our backs.

We had a pretty Anniversary, a dose of chemo first. That night we were visited by a very familiar looking geisha girl. She delivered platters of home made Japanese, thanks to the kind guys in the kitchen at the Pantry, who made a royal us anniversary feast.

And we all sat on the bed and had fun, tears were never far away though.

My journal entry, might be a little more often, I’d really like to share our ‘still a lovely life’ story with you, I don’t hold regret, I just hold onto all my beautiful memories and the love that surrounds us.

Despite this inconvenient illness, it is Still A Lovely Life.

 

 

 

Next week, planning, bringing birthday’s forward, and prioritising books, letters etc……