Monday, October 13, 2014

How Are You?

When I started writing my Blog and using Twitter a new world of support and information opened its arms to draw me in. I have made some fabulous 'Twitter Friends' and am fortunate to have met Chris Lewis who has a personal experience of living with cancer. 


Chris runs an International Cancer Community; 'Chris's Cancer Community' - to connect people around the world who are affected by cancer. Alongside this, Chris works tirelessly to campaign for better support and services for people with cancer. 



I am thrilled that Chris has agreed to write a guest post for my Blog, Chris has linked his post to the theme of my previous one Playing The Fine Game  and I gasped when I read it because the poem he includes could have been written for me!

I will leave you with Chris's inspirational writing...
How are you?
"How are you?" This is possibly the most common greeting that we use today. In fact we probably use it so frequently, that we have almost forgotten what it actually means. It is a question, not a statement and therefore prompts an answer, which may then start a conversation! In truth, that is not what we necessarily want to do. What we are actually doing is acknowledging that person.
"I'm fine" is generally the answer which comes back, and for most of us that is probably a relief, as we will not then get involved in a heavy conversation. We all have issues of course, in most instances, not really of interest to anyone else, and if they were, possibly far too complex to be discussing in a brief encounter.
However, when I am involved in a cancer environment, the question is asked slightly differently, with the expectation of a more complex response. In my five years of personal experience, I think that I have encountered most situations, good and bad, yet still, things arise that shock me.
I was at a social function, where I saw two people who I hadn't seen for some time. Both looked extremely well, and it was great to see them. So when I greeted them with "How are you?" I also expected the reply of "I'm fine". However the response in both instances was far from fine! I was shocked. In both cases their cancers had returned, more aggressively. They were both having treatment. I was not prepared for those answers, as they looked so well, but I considered it a compliment, that they felt they could share their story with me.
In both instances, we talked for some time, and they appeared grateful, to be able to talk to someone who understood. Would they have responded in this way if they weren't aware of my own situation? I don't think so. To most people they would be saying that they were fine.That is the most convenient response for both parties.
Most people who ask me how I am, ask for genuine reasons, and have a concern for my health. But I find that I have to tailor my response, individually.My issues are very complex, and I struggle at times to understand them, so how can I expect anyone else to? Some people have a better grasp on what is going on, and others just want to touch the surface. In truth, I still want to say everything is fine, and move on! It just seems easier.
A friend of mine, wrote the following, which I feel sums up brilliantly, "How are you?"
 "How are you?" everyone asks, "I'm fine"
"You are looking well" everyone says, "Yes, I'm fine"
"How's it all going?" some people say, "Oh, I'm fine"
"You must be strong" people say, "Oh I'm fine"
The simplest of phrases that won't let you know, all the pain and the fears that I don't want to show.
I can't tell you I cry when I sit on my own, and that my mind is in turmoil, I don't want you to know.
My body's in pain and it just won't subside, and I feel like I have left my life far behind
If I told you these things, how could you see, your world is so far from my reality.
It's falling to pieces inside of my head, so I tell you "I'm fine" as this puts it to bed.
You smile as I say it and you look so relaxed, so I'll say it each time when you venture to ask, "I'm fine"
  What response do you hope for when you ask "How are you?"
You can also follow Chris on line through his  Cancer Community 
Or on Facebook  and Twitter @christheeagle1  

Thank You Chris

Wednesday, October 8, 2014

I want a kink in my follicles...

Chemotherapy has two potential benefits I tell my friends; kicking the cancer into touch and putting a kink in my follicles...

I tell everyone I meet that I want a kink in my follicles... that and to be a red head!

So now that the hairs are poking through I do a daily inspection for a curly one...


Can't see any at the back...


difficult to get a skyline view ...but nope none there either...


But hang on a follicle watching minute...is that grey one a bit bent? 

Yippee!!

Now about this red head...

Monday, October 6, 2014

Playing the Fine game...

When I answer the phone I'm fine slips out of my mouth when the caller asks how I am. 

When the radiographer calls me in and says so how are you, I'm fine trips out before my brain has time to think..

Recently when the course coordinator on the Penny Brohn Living Well with Cancer course asked us to choose a word... just one word that describes how you are feeling this morning, adding... I don't want you to use the word Fine as we all know what FINE stands for:

Fed up (for the less polite F****ed!!)
Insecure
Neurotic
Emotional

So Alert was my reply...

This week as my energy levels take a ride on the big dipper but stop at the bottom, I decide that I will not play the Fine game any more.... 

I send conversation stopping Text responses with... when I am not at the hospital I am resting all the time...I have no energy...can't wait to get my life back...and on the phone... if the cancer doesn't kill me then the treatment surely will...tired and weary

And today when the radiographer greets me with that's a lovely hat...did you have a nice weekend; my polite reply...

No not really...I am too tired...

is met with  a seconds pause as she walked ahead of me then oh I am sorry to hear that... Once inside the treatment room her colleague also enquires, then confirms how many more zaps I have remaining before doing the important checks...  can you tell me your name, date of birth, address and which side we are treating...

Bored of my honest, conversation snatching phrases, I shall once again spatter my replies with Fines' replacement... OK, Surviving....lovely to see a bit of blue sky today...

Tuesday, September 30, 2014

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...

Wednesday, September 24, 2014

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

Sunday, September 14, 2014

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




Thursday, September 4, 2014

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...

Thursday, August 28, 2014

Hair, hats and scars...

When I was young my hair was thicker than Devon Clotted cream, as dark as a stormy sky and it often fell onto my shoulders in a knotted mass. My older sister Mandy pleaded with me to loose my blue Alice band and at least try bunches...

As I got older I dipped my toe into the style bucket and tried a Purdy cut, went curly with a perm before moving onto the lady Di look, and when the grey hairs crept in during the night, new colours too. But in 2008 - 2009 I lost the hair off the top of my head three times for the brain tumour surgery; so  I merely shrugged my shoulders when the Oncologist said I would loose my hair with the breast cancer Chemotherapy.

More hats I said

Before the first hairs fell out I tucked my golden locks behind my ears, shoved my fringe under a hat and stared at myself in a mirror as I turned from side to side...trying to imagine how I would look as a lollipop sucking Kojak!



Two weeks ago Lois nipped off the last few straggly strands left poking from my soft, white, train tracked head.  


Then Wednesday with a wig wearing grin I held my arm out for the sixth dose of the cancer killing, hair eating drugs.

The last time









I have prepared my family and friends for my combat look by randomly ripping off my wig when my head overheats. 






Let the re-sprouting begin...
"Be thankful for what you have, you'll end up having more. If you concentrate on what you don't have, you will never, ever have enough"
Oprah Winfrey

Except hats...I will never have enough hats!



Monday, August 11, 2014

Everyday is a best dress day

I used to leave tops, skirts and dresses hanging in my 'best dress' wardrobe as I told myself...I don't want to spoil them...people to see me in them on an ordinary day because when I go to a restaurant or party I won't feel special...

Now my best dress outfits mingle amongst my jeans, joggers and jumpers and each morning when I wake, only the weather dictates what I wear.

I put on my dresses covered in a bouquet of flowers, rainbow skirts and lacy tops to wander to the Deli ten minutes away or to go to oncology for my next chemo. 

...waiting for my 5th Chemo dose

Today as I sip my cappuccino in Bath I tell Mr H that a man opposite keeps turning to look at me...

It's because you look so stunning...he says as I lean over to kiss him. 

This week I may wear my wedding dress to go on the swings at the park...


What day is it?
It's today squeaked Piglet
My favourite day said Pooh
A.A.Milne

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