From a Writing Prompt to a spat out Ugly Truth

Sometimes we can be trundling along, just getting on with what we get on with when something stops us abruptly in our tracks.

Two weeks ago, I was preparing for the fortnightly writing group, planning to go along even though I had no writing to share.  I had even confessed to the other writing group folks that I would be a passenger that evening, soaking in their creativity and critiquing in one direction.  Not only had I nothing prepared, I had not had the slightest idea or spark of inspiration. On top of that, I had just returned from Bangkok and the latest round of exhausting tests.  Nope, I was under no illusions that I would be taking anything with me that evening, in the shape of words on a page.

Then I received an email from one of our cosy number, Becky in Burma, in which she mentioned the e-course she was part of and saying that she would probably bring something she had written as one of the exercises.  With her email was an appeal to print a paper copy as that is always easier to share.  Attached to the email was her writing, along with the exercise details.

Of course I had a look at her poem, a heartfelt and powerful piece of writing.  Then I looked at the prompt, and realised that a strange thing was happening.  My mind was whirling and before I knew it, everything around me was strangely disconnected .  Oblivious to my surroundings, I was scribbling away furiously, words pouring out, emotions running amok, struggling to keep back tears.  Within less than fifteen minutes, I put my pen down, dazed, stunned and spent and I looked at what was on the page

Out of absolutely nowhere, and with less than hour to go until our meeting time I suddenly had something to share.  Not a piece of eloquent writing, nor a passage of creative or experimental prose but a page of raw, ugly emotion and truth which had been lurking not so far from the surface, only to be spat out violently.

I have deliberately not edited this in any major way.  I have made a couple of very minor adjustments, but have left it very much as the words formed.  And that is intentional.  The prompt was “What if I were to tell you”?

And clearly I had a lot that I wanted to tell.  Even if I hadn’t realised it.

I posted the words which had crowded in unbidden, as my own very first Poetry Friday. Judging from the many comments and reactions, it seemed to strike a chord. It appears to be not quite a universal truth, but seemingly a widely held one.

As a lay person, I can only speak of how this appears to me. I feel strongly that diagnosis brings what I see as a psychological isolation. The world we enter on hearing the “you have cancer” words frequently forces an unwanted gulf created between those diagnosed and all close and touched by that diagnosis.   And often we want to protect those close to us from the insidious reality.

WikiThe_Scream

 

And it is as difficult to articulate these ugly truths as it is to hear them.

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It slipped my mind

Christmas has been an oddly emotional and strange time for me since I was diagnosed. When I first found the lump in September 2009, the first thing which came to my mind was that I would not be alive to see the coming Christmas.  When Christmas 2009 came, not long after in weeks, but after a new lifetime of surgery, treatments, needles, appointments, a whole new vocabulary and learning to live with the cancer mindset, I was incredibly emotional.  I struggled to hold tears in check when carol singers were singing a version of Jingle Bells in Myanmar outside our gate.  I crumbled again last year, when the carollers came into our house and my composure was just to difficult to maintain.

So this year, I felt the first wobbles as we approached Christmas and I saw the carollers outside neighbouring gates.  However, I left Yangon on the 23 December for my Mrauk U adventure and immediately was caught up in the immediate, making plans and exploring.

I arrived in Mrauk U on Christmas Eve and spent the rest of the day exploring on foot and taking a ridiculous amount of photographs.  On Christmas Day I hired a bicyce and expored the nearly villages and temples, getting lost a number of times and having a wonderful time.  I seemed to provide a great source of entertainment, asking for directions and questions, stopping for a cold drink in a roadside stall and returning to my hotel dusty and hungry for Christmas Dinner.

 

On Boxing Day, I hired a pony and cart to explore the further away temples and minimise the getting lost portion of the activity.  Towards the end of the afternoon, after a day where I saw only three or four other temple tourists the whole day, I was exploring the atmospheric ruins of a temple complex when I remembered.  I suddenly remembered that I had been dreading the approaching Christmas and its memories of not surviving to see Christmas 2009.  I remembered that I had been extremely fragile the previous year.  But something had shifted in my mind which put cancer to the side more than I realised and it completely slipped my mind.

Cancer is still very much in the forefront of my mind, and I am sure it will continue to be.  However, the fact that this memory of being so emotional and connecting it so clearly with Christmas has faded so much shows me clearly that my mind is healing more than I had realised.  For once I am incredibly thankful that I forgot something!

The final instalment of Chemo

Yesterday was really quite a strange day.

Firstly, I did not have my usual pre chemo, mega jitters and nerves.  I am not quite sure why not.  Part can be attributed, I am sure, to the uncertainty about whether or not I would be well enough and therefore there was no point in being too scared.  Logical, no?  But in fact, I think it was more due to the fact that after 7 chemos, a bout of pneumonia and the scary IV antibiotics, another chemo and its familiarity finally did not feel just so intimidating as it used to.  Ironic, no?  Why could this not have kicked in 5 chemos ago?

I turned up at Counter 2 as usual, handed over the slip and when the nurse said “blood test” I made sure that this would be taken by the oncology 5th floor staff.  I waited for a while but no sign of the familiar all white uniform for quite a while.  Then a porter arrived to take me to the 5th floor!  Unexpected, but never mind, I followed to the Oncology Ward and there was shown to my room and waited for the nurse.  She expressed concern about my recent infection and said that there might well be a delay but it would depend on the blood work.  I asked if we should put on the numbing cream or not if it was unsure.

“Oh, yes.  Put it on!”  She was clear – if chemo was to go ahead then much better to be prepared.  AFter all, the cream could easily be wiped off if not.

She struggled a little to find a space to draw blood and my poor little vein was still tender.  Again the blood was reluctant to clot and required a good bit of pressure to stop the bleeding, which was really quite painful.  I have to stress though, that as ever, these nurses are just amazing and ensure that this is as painfree as possible.

So we headed back downstairs to wait for the results to come through and to see Dr W2 and her the verdict.  I had my other BP, temperature and weight checks and all was well.  Although I was a bit surprised to see that I had lost over 3 kilos in the intervening 3 weeks.  Hmmm, did the pneumonia do that or is a sign that I am really struggling to eat properly now?

Finally we were called and took ourselves and the X Ray from Yangon into Dr W2’s room.  He went through the blood tests and said that my white cell and neutrophil counts were normal now, and red blood counts had gone up enough to allow chemo to go ahead without transfusion!  Amazing what determination can do!  He then had a listen at my chest and seemed happy that it sounded clear.  He had a look at the X Ray from Yangon and immediately ordered a follow up X Ray.  He felt that I had had a virus as well as the bacterial infection which is why I had gone down so much and also why the monsterbiotics and IV ones had taken a while to kick in and for the fever to go down.  His verdict?  With satisfactory blood work, no fever and apparent recovery from the infection, pending the review X Ray, he felt 90% sure that chemo 8 could go ahead!  Gosh!

So we were carted of to imaging and I had a super fast X Ray with no comments about biopsy scars.  Within 10 minutes the results were with Dr W2, he had reviewed them and I was pronounced fit for the final zap.

We were escorted back up to the 5th Floor and back to the room where I had been earlier.  On with mind-numbing reality TV – my usual strategy for dealing with port preparation.  I seriously recommend it for the whole chemo process!

For the last time, I was prepared, the numbing cream wiped off, the area swabbed and sterilised, surgical gauze placed surrounding the area and then the ripping of the package which signified the port needle.  OK, the usual, breathe in, breathe in, breathe in…..hold…………… and for the last time the needle was in.  Phew!  No final surprises or problems with my wonderful port.  Did I call it wonderful?  Hmm, a strange time to develop a more positive relationship with my port!!

The series of syringes with anti side effect meds went in first and a vicious army of biting red ants marched again as I squirmed awkwardly.  Each time they seem to bite a bit harder and I find it increasingly uncomfortable.  The nurses find my reaction really amusing!

I had half an hour of saline after this to get the side effects well flushed and then the final taxotere was unceremoniously brought in and hooked up.  Have a look at the label in the pic, and all its detail……………..

As always, it is infused slowly as it has a high risk of allergic response.  For over one and a half hours it worked its way into my system until finally the machine beeped to signify the end of the infusion, and the nurse monitored as the final drops left the bottle and entered my blood stream.

Another series of syringes and the final anti clotting agent and it was time to remove the needle.  I breathed in, in, in- and held and out came the needle.  And then the weirdest thing happened.  I was completely overcome, and cried like a baby at this decisive moment.  It was totally unexpected and I am not quite sure what happened.  I think a mix of relief, disbelief that it is finished, and after months of holding things together during the chemo procedures I was overcome by the enormity of what I have been through.  I have since heard from many other women that they also wept buckets at the same point.  It reminds me a little of when you are in the midst of a family emergency or crisis and you just have to keep everything together, but when you are told everything is all right, that is when you crumble.

After the crumbly moment, I gathered myself, switched off the reality TV and got ready for the outside world again.  I will come back and see my 5th floor angels to thank them properly once I am clearer about the next steps and less wobbly.

After the usual signing of papers and collecting another bag full of medication, we were back out in the warm evening and quickly home.

I am still having a bit of difficulty letting it sink in that Sunday 4 April really was the 8th and final chemo.  Rocky (1 and 2) and I have finished our 8 round Boxing Match and the score seems to be Rocky -8, FBG – 8!!  But I have this naughty compulsion to run up behind him when he is not looking, and tweak those sensitive little hairs behind his ears and bring him to his knees like he has done to me!!  Maybe I will keep that one up my sleeve!

Chemo might be done and dusted, but there is no chance of dust gathering under my feet.  Final chemo was yesterday, and Radiation Therapy Consultation will be tomorrow!  Things are moving rapidly forward.

The most important thing is that I know that once this set of side effects pass, then I will start to feel better and slowly recover.  I hope that I will get my strength, energy and immune system back gradually – and I hope that means I will start to feel well again. I can’t wait!