Tuesday, September 23, 2014

Goodbye to Cancer

Cutting to the chase, not something I am known for, when I went to meet with my oncologist doctors last Thursday to review my PET scan they confirmed that in their opinion I was now clear of cancer and did not require any further treatment at this stage.  They said that two things had contributed to this outcome-one, that the cancer had been diagnosed relatively early (stage 1B2) and that the extensive surgery I had undergone and the sheer amount of lymph nodes removed meant that my surgeon had successfully cleared me of the malignant tumours I hadn't even known were there 10 weeks ago.

This is a real 'yey' moment yes?  But I spent the rest of the afternoon in tears-mainly tears of relief that I didn't need further treatment in the form of chemo or radiotherapy but also tears of sadness for the life changing effect this has had on me and my future.  I felt numb, I felt bitter, I felt angry. 

I had told people I was getting the results that day and people started messaging me and asking how it had gone and I guess my silence worried them.  When I did say I had the all clear the outpouring of support/joy/high fives was amazing and temporarily lifted to me the place mentally that I should have been.  It's all over, the cancers gone.  But I did not feel the elation everyone kept telling me I should be feelingSometimes, I don't think it has sunk in.  Even the past 10 weeks hasn't really sunk in at all.  People kept saying to me on Thursday evening I had 'beaten cancer' but in truth I have been on autopilot so much since the beginning of July.  I just did what I was told to do and went where I was told to go for every appointment, operation, test and scan and had been protected and guided by my surgeon and his team the whole time.

A dear friend asked me this morning 'what's the next stage in your recovery' and I really didn't know how to answer.  I have a fear that people think because I have had the all clear that I should be fine and back to normal and back at work.  I know I am not physically 'fine' yet.  I still suffer from a lot of abdominal pain and find it difficult to sit in one position for any length of time.  I have 90 internal stitches that my surgeon says take up to 9 months to heal fully.  I am not allowed to swim or have a bath still.  I get very tired quickly and I walk quite slowly and not very far.  On the plus side, both my oncologists said I was doing really well for 7 weeks post operation when I saw them last week.

I guess the answer to the question 'what's the next stage in your recovery' is get well, get back to normal and get back to work.  Writing it down like that makes it sound just so easy.  I couldn't work out why, on the day I got the all clear I felt so down so I started to have a look online and found a brilliant article on the NHS website called Life After Cancer which pretty much summed up how I was feeling.  Now I know that some of the feelings I am experiencing are 'normal' and that I acknowledge them means I can address them better.  I have also decided to interact with some of the ladies on the Jo's Trust website which is a UK website dedicated to ladies with cervical cancer and raising awareness.  I have a few post surgery issues etc that I think only someone who has been through the same thing can understand.  I have met two wonderful ladies-Elaine via my blog and Penny via twitter who have been through the same thing and have been a constant source of support and guidance.  Elaine pretty much picked me up off the floor the night before my PET scan results.  I had been told by my surgeon to expect to need chemotherapy when he had reviewed the results of the scan before my oncology appointment and I was in bits.  Thank god he was wrong.

Shortly after my surgery, a lady on Instagram who had never interacted with me before took offence to a picture I posted.  It was at the height of the ALS Ice Bucket challenge craze and it was a picture of my friend Anna who had done the challenge to raise awareness of cervical cancer.  This lady posted on my photo saying 'did I realise the ice bucket was to raise awareness for ALS' and I replied saying 'yes I did but I have recently been diagnosed with cervical cancer and my friend thought it was a nice way to raise awareness.'  I also said that I hadn't hashtagged the picture with ALS or Ice Bucket Challenge so if people searched for those terms on Instagram my photo wouldn't come up.  I thought that would be the end of it but to cut a long story short this lady had really taken offence to me using the hashtag #teamstace as she said that belonged to her friend who had died from ALS and wrote several more comments under the photo, calling me an inconsiderate bitch and one of the worlds ugly people.  She concluded by saying that it 'sucks your situation hasn't taught you anything....and hopefully you will come to see your wrongs eventually'.

My friends literally went ballistic, reporting her to instagram and most of the comments were removed but I would be lying if I said her comments didn't hurt me deeply.  But she is wrong-my situation has taught me a lot.

1)  The kindness of strangers is incredible and has been completely unexpected.  The support, the care, the kind words of people I have never met, tweeting me or leaving comments on my blog posts.  Gemma contacting me and suggesting guest posters and all the work she has done rounding them up whilst I recover and equally all the time and effort people have gone to to write posts.  Many of those online 'strangers' have become friends.  Some have even become people I now speak to daily.
I am genuinely shocked at how nice people have been and I will definitely be paying that forward.

2)  Social media is amazing.  For all it's faults and the pain and nastiness you do sometimes see, I have had a very positive experience with the power of social media-especially twitter and instagram.  There have been people across the world who have tweeted me and kept me company when I couldn't sleep at 4am.  There was one blogger who I know through twitter who emailed me every single day whilst I was undergoing surgery even though I didn't reply to her even once at the time because I was in so much pain.  Social media was pretty much a lifeline for me and a way to forget what was happening.

3-Social media is amazing but....  It's very easy to hide behind.  Since I have been out of hospital, apart from my mum, 3 people who live in Dubai have been to see me at home, I have met one for lunch and Vanessa came to stay for a week.   When I went into work for the first time last week for a couple of hours I found the whole thing very intimidating and overwhelming.  And these are my colleagues!  I have become unsocial (that's a word right?) and a bit, well scared of social situations.  Yet I can 'talk' for hours to someone on whatsapp.  I need to do less hiding behind a screen and more actual interaction.  I think going back to work will help a lot.

4-Never take for granted your parents.  Mine are amazing.  To be honest, it pretty much took me until I was about 22 to realise that.  I have a great relationship with my mum and dad and as some of you know my mum came over as soon as I had my operation and for 3 weeks was my absolute rock.  She showered me, dressed me, gave me all my medication including injections, held my hand, drove me to hospital and was just there all the time.

When I was in London with my mum having a bit of a girly holiday at the end of June I told my mum that I had had a dodgy smear test and had to have a cone biopsy to cut out the abnormal cells.  At that point that was all it was.  A very routine operation that was going to fix me.  And I wouldn't be so bloody stupid next time and I would have my next smear test on time.  I'm 34, cancer in your 30's is pretty rare so it never crossed my mind I might have cancer.  We talked about me having kids and she said 'you'll miss out on so much if you don't'.  I had always assumed I would have my own family-two kids just like me and my brother. I had assumed it would be pretty soon too.  Now since I had to have a radical hysterectomy I never will and I have had a few down days recently coming to terms with that fact.  Despite all the joyous (and difficult) moments a mum and dad have raising children and all the 'firsts'-first steps and words, first day at school etc the thing that makes me the saddest if I am really honest is that that I am never going to have the relationship I enjoy with my mum with a daughter of my own.  Never being able to do the lovely things we do when we are together like shopping, afternoon teas and the theatre.  Not having that closeness.  Not having a family underneath me as I grow older.  Being alone.  It's too much to bear sometimes.  But something I will have to deal with and accept. 

5) Prevention is way better than cure.  I was such an idiot to put off going for a smear test just because I was too busy.  I will continue to promote the importance of smear tests/PAP smears/cervical screening.  It's not a test for cancer.  It's a test for abnormal cells that could lead to cancer if not treated.  A PAP smear will identify those changes in the cells early and allow for them to be treated before you get to the stage I was at.  That PAP smear I eventually went for did save my life.  But sadly it also changed and took away control of part of my future.

So many ladies have contacted me and told me they had booked an appointment for their smear test.  I don't want anyone to go through this.  Not just the physical pain but the emotional bit too.  It can be really crappy.  I know that I will come out stronger and better and I have to not get so frustrated with myself sometimes for this seemingly 'slow recovery'.  I will, I won't let this define me.  I won't become a victim to it.  I just need to figure out what 'better' looks like for me.  I have fears of course.  I did have symptoms of this cancer (bleeding between periods being the main one and constant UTI's which I thought were stress related) but it was nothing major and I worry I will get cancer somewhere else and not know, and that this time they won't find it as early.  Who knows how long I had cervical cancer for before I was diagnosed.  My surgeon can't even given me an estimate.  As soon as I was diagnosed I just knew I wanted it taken out of me immediately.  Sometimes it's even hard to look in the mirror and see the exact same reflection staring back at me from 10 weeks ago as if nothing had ever happened.

Don't get me wrong, I know in a way I have been incredibly lucky.  Lucky to get an early diagnosis, lucky to have such amazing support all around me, lucky to have a brilliant surgeon and fantastic medical insurance, lucky to not need chemotherapy or radiotherapy, lucky to have the support from work to recover fully, lucky to be alive.  So so so so so many people have it much worse than I do.  In the grand scheme of cancer I have had it relatively easy-my dentist even said to me today 'oh everyone gets cancer these days'.  I retaliated 'not at 34 they don't'.  But if you have read this far and thought 'she needs to just sort herself out/be more grateful/stop being so pathetic' that's totally ok-I think it myself sometimes!

Let's end with some wise words from my assistant James (I know you all love James!) He could sense all was not right the day I got the all clear and very late that night we had the following conversation on whatsapp:

JP-Fellster, why are you not happy today?
I feel a reservation

SF-Just a bit overwhelmed and not sure what I have been through.  I have just been on total autopilot.

Switch to manual
You have been given a second shot at life
Live it to the fullest, don't fuck it up
I am wasted but this is being honest

SF-You're not going to tell me you love me are you JP?????

I'll leave you guessing at his answer.  Pretty good advice from a 23 year old though.

You can read back about this whole journey in these posts:  Life lately...and other news, The Curveball, The Recovery and An update and 'time to test', The PET scan


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