Every day is a bonus...

In March my heart sunk into concrete when I first stepped into Oncology's revolving door as my mind screamed, walk out walk out. I hung my head and stared at the pale brown laminate floor under my feet until I reached reception...

Can I help you?

I have an appointment to see the oncologist but don't know where to go...

I don't belong here I told Mr H as we sat nursing drinks at a round orange table in the WRVS coffee shop before we went up. In the lift  I played spot the wig while my mind's chatter drew a picture of the pale, grey faced, ghost like figure I would become. 

Upstairs in outpatients I saw a lady with no hair smiling. Smiling!

Then last week exactly six months later, when I told Mr H I was going to rip my wig off in a Marks and Spencer's cafe he said please don't, the locals will scatter in fear. So I have ditched my wig because one minute I feel like I am in the Caribbean sun then the next I tug my hat back on because my head is as cold as a winters night. 

...now I hardly notice the revolving door as I chatter and giggle my way in to greet Derek (who manages the WRVS shop) as I buy my coffee. His welcome smile makes my morning...

You are looking bright are you coping with the treatment OK

Thank you... not too bad... and we chat about the importance of making the most of every day in my world every day is a best dress day I tell him so he shares his mantra with me..

Every day is a bonus...

After six doses of chemo and my first weeks worth of radiotherapy the pale ghost is no where in sight

I have now learnt through Mindfulness not to engage with the silent chatter that goes on in my mind. Now I notice it then watch it float by...

My grey cells have ground to a halt...

I have strained to think of a blog to write in the last couple of weeks. I closed my eyes and tried to relax. Nothing, not a sentence. My creative grey cells were on strike. Ground to a halt...

But my thinking brain is buzzing with worries and questions... when will my breast and shoulder go red while I have this radiotherapy...how likely is fibrosis of the breast tissue... what will happen when I start the hormone treatment...can they see me when I am on the table in case I have a seizure... how much more tired am I going to get...is it possible to be more weary than this?...

I write it all down in my Breast Cancer Note book, lists of worries and questions to ask at each appointment. I tick some off when I chat to my GP on the phone but others spring in to take their place...

Then today after my 6th Radiotherapy treatment a smiling blond haired lady met me as I came out and took me to a private room to chat - a review meeting. She talked me through most things I had stored in the worry list... Some people never have a skin reaction while a lot do, it happens after two or so weeks...fibrosis can occur up to a few months after but is mild in most women...:the throbbing pain is caused by tissue inflammation and is normal...the Tamoxifen (hormone treatment) can cause weight gain and hot flushes, caffeine and stimulants can sometimes make them worse... drinking plenty of water can help the fatigue as it flushes out some of the effects of the treatment...yes they can see you in cameras but I will tell them you have epilepsy and make sure they keep a close eye...

With each explanation and answer I breathed a bit easier. I asked all the questions in my book and explained how I was feeling about the treatment, the embarrassment I felt each day, made worse because a man is part of my treatment team. An emotion that for me is overwhelming every other thought...she listened without judgement asked if there was anything they could do to make it easier and checked if I had someone to talk to...

I walked out of Oncology into a blue sky day and my spirit felt as bright as the sun. On the way home blogs sprung into my head. My thinking brain had been unclogged...

Normal service will be resumed shortly...

...The next day 

Today I am met by three ladies, the man has stayed out. I show them the emergency epilepsy drug I have in my bag which they can give me if I have long or multiple seizures... 'D' walks me round to their room and shows me the screen they are watching me on!...if only my medical history had been fully passed on! But today is a new day and the only thing that is real about this journey is the step I am taking at this moment...that's all there ever is... (mindfulness)

So for episode 7 of the radiotherapy show and for the first time I relax on the hard table and breathe calm breaths...

"You cant stop the waves, but you can learn to surf"

Jon Kabat-Zinn

I always said I would never have a tattoo...

... now I have four. The tattooist chose the design, not me. They are as black as thunder clouds and signify a stormy year full of rainy tears and thunder bolts of shock.

The oncologist said this part of my treatment will be a breeze compared to the chemotherapy but I am as scared as a puppy at it's first sight of lightening. Like hail stones, unanswered questions hit my brain; will my new breast shrink, will my breast hurt as the treatment progresses, will my skin burn...

Reassurances bounce off me rather than sink in to calm the storm, tissue contraction is rare, blistering of the skin only happens rarely, you may experience a bit of soreness as the radiotherapy progresses they tell me. 

The trouble is the word rare makes me tremble...

Brain tumours are rare affecting approximately 1 in 38,000;
A post operative brain abscess after brain tumour surgery is rare (less than a 1% apparently); 
Breast cancer AND an unrelated brain tumour is incredibly rare, never heard of it happening both my neurosurgeon and oncologist told me;
The safety device used to keep my PICC line in (to administer my chemo) squashed the line causing it to crack and leak and  had to be replaced, this has only happened once before in all the time we have used it, the PICC line specialists inform me; 
My second breast operation the day after my breast surgery when a haematoma complication arose is not so rare -1-6% chance in figures I can find, but I scored a home goal with that too...

I won't actually be there during my Radiotherapy!  I will use Imagery, a technique I learnt through my brain tumour journey and recently at The Penny Brohn Cancer Centre. I will go to the sea in my head and forget what is happening while I am first prodded and touched and while the machine takes over to give me my zaps...

The four tattoos...
They are pin prick spots put onto my skin after the radiotherapy planning CT scan; between my breasts, above my affected breast and on both sides of my body-to ensure they zap me in the right place each time. I only felt a scratch when they were done. 

Never say never because limits, 

like fears are often an illusion

Michael Jordan

The thing called energy...

The persistent burring of the alarm sounds like it is at the bottom of the sea, well I wish it was, as I turn over and pull the duvet over my ears.

The sound of voices and the noisy skips of children on their way to school outside my bedroom window, or the postman ringing the door bell with yet another parcel Mr H has ordered, force me to push the duvet back. Those or another hospital appointment to go to!

After my shower I flop back onto the bed, too tired to walk down the thirteen stairs to get breakfast. I long to sort out my underwear drawers as the pretty bras I wore are no longer of use, the bras suitable for a breast prosthesis are boring black and washout white. I want to find things at the bottom of the airing cupboard but emptying it would be like entering a contest for the strongest woman with no muscles! Mr H already does the ironing, shopping and a lot of the cooking, as well as work, so these kinds of jobs will have to wait…

A friend phones and my tears tumble as I tell her how I am. I imagine how life was when walking was as easy as eating cake, hanging washing out didn't leave me huffing and puffing and the desire to sit down didn't dominant my mind, even more than cake!

The oncologist was right about the impact of chemotherapy; of fatigue being incremental building up from dose to dose.

But I have time to read while sitting on my ‘summer holiday’ garden furniture I treated myself to, 

Plan new meals with my organic produce as my mouth waters, and take a short stroll along our lane to collect fallen apples to make another Abel & Cole Mama Moore's Apple cake …

Oh and celebrate the end of Chemotherapy with a birthday present of Afternoon Tea at Thornbury Castle...

Who said healthy eating didn't include Cake...