The Bionic Beauties.

In a cruel twist of fate and epically unfortunate timing I arrived home this morning after Isla's play group to the NHS letter I've been awaiting for 2 weeks.  My one year mammogram shows 'nothing of concern' which is in effect my first 1 year 'all clear' although in cancer world this term is rarely used.  I am, of course, delighted and I know those around me will be too but this news is massively overshadowed by the news I received earlier in the morning that a friend had passed away yesterday.  

She was one of a group of incredible women who have travelled the road of cancer treatment with me for the past 18 months.  We span the country, from me on the south coast right up to northern Scotland.  We are from different walks of life, different family situations and varied backgrounds, in any other situation our paths most probably would never have crossed and friendships never forged.  But we shared the unfortunate honour of going through chemotherapy at the same time and it bonded us together.

We named ourselves the Bionic Beauties.....no matter what happened to our bodies we were going to emerge truly Bionic, an improved version of ourselves ready to tackle the rest of our lives.  Each and every one of these ladies is a beauty in truest sense of the word, with a beautiful soul....somehow when see a person stripped of everything that is typically thought of as beauty ....hair, long eyelashes, a clear completion....you realise how beauty can shine out of someone from deep within. I had the pleasure of meeting 13 of these beauties last summer.  We have shared the ups and downs of our treatments and supported each other through scary and stressful times.

Over the last 8 months we've been there for each other as we've attempted to cobble our lives back together again after treatment.  When everyone else is celebrating our 'recovery' and return to 'normal' we've understood the complex reality and continued to be a source of strength for each other in a way that nobody else can.   Our dear friend 'L' was such a strong member of this group, always with a positive attitude and ready to support everyone else despite her own ongoing battles.  She will leave a big gap and never be forgotten.  It is simply unimaginable, the gap left in the lives of her husband and two gorgeous babies.

Tonight I raise a glass in memory of an amazing lady, you will always be a Bionic Beauty.   To my other BB's, especially 'D' you are in my heart and thoughts .

So today I mourn the loss of a beautiful person from this world and simultaneously  celebrate being cancer free for a year.  How can I do both?  The only way I know how to is to be thankful in every moment for the life I have and the health I currently enjoy.  Things change in an instant and all we can do is make the most of and appreciate every day we are given.  The past is the past and the future unknown, live your dreams today, love the way you want to and hug your family tight.
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Happy normality

Wow, life really flies by, I can’t believe it’s been nearly 3 months since I last wrote something, just shows I’ve been focused on normal life much more.  In fact, there have been many moments over the last few months when I have actually felt almost myself again.  I’ve been surprised at how much my hair has been a part of that, as soon as it was long enough to curl again I felt more ‘me’.  It’s surprising how much you identify with your appearance, you hold a mental image of yourself and when the reflection in the mirror doesn’t match that image it is really quite unsettling. 

Unfortunately I’m not yet at the stage of escaping those disruptive NHS letters dropping through my mail box and unsettling my life and mental status!  I had an MRI of my brain and spine in January, this will now be an annual January treat.  I was disproportionately anxious about the MRI….not the results but the fact I would need cannulised.   I seem to have developed a slight phobia….at least I was prepared mentally for the possibility of an irrational emotional response after being taken aback by my own reaction to a blood test in the summer.  This time I was mentally prepared (and had back up sedatives in my bag just in case!).  After warning the Radiographer about my terrible chemo veins she took a long time searching until she was sure she’d get a good one and all went smoothly…..no need for sedatives after all!  I haven’t officially been give any results as the letters bypass the patient entirely and I just get copied in to letters shuffling between departments (I’m used to it now).  Luckily my GP has access to everything and printed off the radiology report for me which shows no change in my orbital mass and nothing out of the ordinary to report in my spine.  Good news, the masses appear to have been there a long time and are clearly slow growing.  It seems that the Docetaxel chemo, which is known to damage nerves, was able to get to the facial nerve more readily due to the tumour surrounding it, thus causing the sudden onset of pain.  I will remain on Amytriptaline, a nerve pain killer, which keeps it mostly under control.  My eye swells up every so often but my eyesight is not disrupted and the Ophthalmologist seems happy that the risk of surgery was not worth it until my eyesight is effected and not correctable with glasses.  So that’s the update with my head issues, the neurologist seems pretty sure that I have a mosaic form of NF1 but that is still up for debate and I can’t say I’m convinced myself, but for now there is nothing to be done, so no point in wasting time thinking/worrying about it.

As far as the breast cancer is concerned, I have my 1^st annual mammogram tomorrow – yikes!  This will hopefully mark a year cancer free.  Cue disproportion emotional responses once more!!!  I have ongoing swelling and tissue and bone pain from Radiotherapy so I’m not exactly relishing the thought of having what is a painful procedure under normal circumstances.  But, it needs done and I’m looking forward to the reassurance that all is clear for now.  So I’ll be putting on my superwoman pants tomorrow and gritting my teeth, but will happily have a back up of various drugs in my bag just in case ;-)  I will see my surgeon in April for a physical check-up and then that’s me for another 6 months.

Although I finished what they call ‘active’ treatment in July, I started on a 10 year slog of hormone therapy.  Different types of breast cancer are driven by different things.  My cancer was partially receptive to Oestrogen and as a result I need to take a hormone blocking drug to reduce the chance of recurrence of the cancer.  Chemo put me into a temporary menopause anyway and the hormone drug will probably keep me there while I’m taking it.  So I experience symptoms of menopause, mainly hot flushes, joint pain, weight gain and fatigue. I am currently battling with the fact that different brands of the drug I am taking, Tamoxifen, seem to make symptoms better or worse.  My pharmacy has given me a different brand since Christmas and my ‘menopausal’ symptoms have got progressively worse.  I am really hoping that it is down to the brand switch and if I get back on the previous brand it might improve again.  However it’s impossible to know what is down to the drug effects and what is just recovery from cancer treatment.  I am slowly learning to get better at recognising when I’ve done too much and need to rest.  It’s a difficult rollercoaster of feeling really well and therefore doing everything as I did before and then crashing and burning because I over did it. I’m slowly learning the point I need to stop before reaching burn out point.  I guess this is a skill we all need to learn, irrespective of our health status.

So that’s all folks, I am living a happily ordinary life once more….with a few medical appointments and some drug taking thrown in!  It’s a world away from where I was this time last year having just finished chemo and facing my first surgery, so I’m happy to be here, hot flushes, fatigue and all.