Tuesday, 11 December 2012

Once Upon a Time : The Scare #GRACE

The year 2012 has opened up some wonderful opportunities to do things I have never done before.  One of those things has been to volunteer some time for the good of a charity.  It is this last one that has led me to writing this, very personal, post. 

I was asked, not long ago, by a very dear friend if I could help manage the social media for a charity that is very close to her heart.  GRACE (Gynae-oncology Research and Clinical Excellence) provides support, to women and families in the locale of  Surrey, West Sussex and Hampshire living with gynaecological cancers.
Many people will know I write about living with disability and Cerebral Palsy on my blog. So many may wonder why I would want to find the time to get involved with a charity not related to that. The reason is simple; I had my own cervical cancer scare.

Helping women and their families local to them is only part of what GRACE do.  They are constantly striving to fund vital research into the causes and treatments of gynaecological cancers.  This work benefits every women in the world, we all know - cancer isn't picky about who it chooses.  Every tiny step forward to discovering more knowledge about these cancers is crucial.  Therefore if I can help - in anyway - to help those afflicted by these diseases, or do anything to try and help a charity find ways to combat them, I will.

I was 18 when my parents decided to move out of the area we had resided in all of my life.  I followed my parents to our new home a few months after they relocated, when I secured a new job.  My mum had enrolled me into the local doctors and I was far from thrilled when she told me I had to book in for a medical.
I had been registered under the same Doctors all of my life so I had never had a general health check, as required when you join a new surgery.  It was all the usual elements, answering questions, height, weight, blood pressure.  My previous Doctor had prescribed me the contraceptive pill, to try and regulate my menstrual cycle as it was particularly erratic, and the new Doctors were quite shocked when I informed them that I had not been called for a 'smear' test since being issued with the medication.
I was told that I must book in for one and left with an appointment with the nurse for the following week and a glum face.  I petulantly declared that "I did not want one!" to my mum who made it clear in no uncertain terms that I would be going to have it done.  She did what most people do, informed me that although unpleasant and uncomfortable it didn't hurt.
I dutifully attended the appointment and relief flooded my body when it was all over.  Little did I know that a 'smear' test would become the least of my worries.  I really did not give it a second thought after I got home, happy in the knowledge that I wouldn't have to go for it again for at least three years.
So, when I returned home from work for lunch a few days later I was surprised to see a note left for me stating that the Doctors had called.  I still did not relate it to the recent test.  The nurse was quite gentle as she told me that my results had not come back clear and I had been referred to the hospital for further investigation.  I asked her if I should wait for an appointment to be sent through but she informed me that one had already been issued and I was to go the following day.
It was the speed of it all that raised alarms for me, and my mum.  It had not even been a week since I had the initial procedure.  I was called in to see the Specialist first.  He was blunt.  He told me I was a lucky girl to have had the 'smear' test carried out when I did.  He informed me that cells change on a spectrum of low to high.  Mine were in the high sections and he couldn't be sure at this stage if any had fully changed. 
That was a huge piece of information for an 18 year old to take in.  I am not sure I did.  I was then taken through to a surgical room by a kind nurse.  I was told that the first procedure was to cover my cervix in some different liquids that would help show up the pre-cancerous cells.  Again, the Specialist did not sugar coat anything.  He let me see the screen and pointed out that over seventy percent was affected.  In short I was smothered. 
He told me that I would need to have a biopsy taken and that he would carry out a 'Loop Exision'.  I asked if I would come back for that - in the hope I could run as fast as I could away from the hospital and lock myself away to try and process the situation.  He almost laughed and declared that I would not be leaving until it was all done.  Thank goodness I was laying down, otherwise I would have passed out.
As they prepared for it all the nurse explained what I was going to experience.  It was just as she said.  As they insisted on doing it there and then I could only have a local anaesthetic, but looking back that was probably better for me, as afterwards I was allowed to go straight home.  I was told that the results of the biopsy would not take very long but if there was no news it was good news.
The first couple of days after I had it done were long and slow.  Every time the phone rang I believed it was going to be the hospital with dreaded words.  I couldn't get my mind around the fact that I was carrying around pre-cancerous cells and had absolutely no clue.  My mind kept drifting to the scenario whereby I hadn't moved, hadn't been called for a health check due to the new Doctors, hadn't had the test in the first place.
I swung from feeling very sorry for myself, to feeling very lucky.  It had been discovered and I was now under the care of the right department.  Then as the days turned into weeks with no news I started to relax.  I finally got a letter from the hospital noting that no further treatment was required at this stage but I was to return for another smear test in six months - the appointment already given.
Returning to the hospital I felt hopeful.  They had done quite an extensive 'Loop Excision' removal and if I could deal with that a 'smear' test was nothing.  The same Specialist carried it out and as usual said I would receive notification as and when.  My hopefulness was short lived when I was swiftly called back for another appointment.  I again under went another set of biopsy and 'Loop Excision'. 
Another round of 'no news is good news' ensued but this time my hopeful outlook did not return.  I was again asked to go for a 'smear' test in six months.  It seemed like a long time and my close family and friends tried to keep me positive, noting that they would have worked extra hard to make sure they got it all the second time, it was probably just a little bit that got left behind because there had been so much the first.
The 'smear' test appointment came and went and I was recalled for a third time.  This time when I was called into to see the Specialist I was also asked if I minded a Student being present.  Why the hell not, I was past caring to be honest.  I was quite surprised when I walked in that it was a different Specialist.  He had a much more empathetic patient approach, but that didn't change the fact that I was going to have to undergo the same procedures again. 
I remember the Specialist turning to the student and saying "This lady is just about to have this done for a third time.  She has very new and sensitive scar tissue that we have to work with.  We do not want her to have to go through this again.  We MUST get ALL of it."  That made me feel, actually, very safe.  It was the determination in his voice I think.  He asked to see me afterwards, which I hadn't had to do before. 
He said he was very sorry that I was here again and went through what I already knew about waiting to hear (or not being the case I wanted).  Then he spoke to me about the effect of the treatment, that no one had gone through with me before.  He said I had to imagine my cervix as the skin on my arm, if that was burnt, it would heal a little differently and be more sensitive.  And weaker.  The more it was burnt the weaker it would be.  I still didn't follow.  So he spelt it out for me.  The three procedures could potentially have made my cervix too weak to be able to carry a child.
This was a blast I was not expecting.  But at 18, with no interest in reproducing, I was too young to fully understand the implications of it.  It wasn't until I unexpectedly fell pregnant with my first child that this came back to worry me.
I left the hospital that day, feeling more upbeat than the previous.  Thankfully that hopefulness was realised when after the six month 'smear' I was finally given the all clear.  I was then monitored by 'smears' every six months until being given approval to return to the Doctors for the tests annually. 
It is only this year that I have been given the all clear to go every three years.  The magical three year call that I was waiting for when I was 18.  I am now 33.  This experience certainly changed me.  It made me stronger, it made a typical 18 year old, thinking life was long - appreciate life can be short, you never know. 
It made me weaker in some ways.  Those areas I am still working on remedying.  It made me feel like shouting 'Why Me?'.  Then it made me feel lucky that I only ever experience those preventative procedures and not combative ones.  Lucky that I was then watched like a hawk.  That I now have the foresight never to miss a 'smear' test as so many women do through fear.
If things had not been positive for me, I would have needed a charity like GRACE.  A charity to help me and my family through a traumatic, life-changing time.  An unknown time.  I would have wanted my friends and family to have had a source of information to give them comfort and solid information and fact. 
I support any charity that looks to save other women from Gynaecological Cancers, being it Cervical or Ovarian.  They need your support too.
You may wonder why I have written this post?  I wanted to write it so those that read my blog could relate to what could be 'just another charity'.  The support I am asking for doesn't cost anything.  I am just trying to help a charity gather support on Facebook and Twitter - so that YOU if you ever need the information can access it.
Please like the GRACE Facebook Page by click here GRACE FACEBOOK.  And follow us on Twitter by find us @grace_women.
You can find out more about the amazing work GRACE do by checking out their website here -GRACE WEBSITE.  If you ever have questions you can always contact them.    
Linking this post up to the wonderful Older Mum in a Muddle : Once Upon a Time.   

1 comment:

  1. Wow ... I was really taken aback by that - and all at the tender age of 18. You've been through a lot Lynsey - now I have a sense of where your positive, determined and strong outlook comes from. Thank heavens you went for that smear and so great to hear you now only need to go for one every three years. A very powerful account and honest, authentic way of highlighting the work of an excellent charity. When I next do a OUAT - link up!!! XXX.


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