This post is from Harriet's blog "Breathless Bird" at https://harryhatd.wordpress.com/.
So here I am. I have been meaning to do this blog malarkey for a while. In true Harriet fashion I have thrown myself headlong into writing this without reading the instructions, so if anyone but me ever gets to read this it’ll be a miracle.
Tomorrow it will be a year since I went for a routine chest X-ray after feeling a bit under the weather with a horrible, sick making pain in my left shoulder and a bit of a sharp pain in my chest. It’s fair to say things went t*ts up from the moment I had a message from the G.P that same day asking me to call him ASAP. Those of you reading who have experienced serious illness will know that this type of message is never going to lead to a happy ending. A friend of mine on my support group describes perfectly that when she gets bad news it is always accompanied with ‘a good dose of side head’. Well, you could virtually hear the damn side head in the message.
Basically, a rather large tumour on my left lung had taken its opportunity to say hi. We have no idea how long it had been there, but probably a long time. Contrary to popular belief, following treatment for primary breast cancer, you do not have follow up scans unless you present with symptoms. I was 13 years post treatment for primary breast cancer and until this point had been really well.
Scans revealed that my visitor had taken up residence in both the upper and lower lobes of my left lung. A very keen eyed Radiologist also spotted something (else) untoward on the first CT and after a lot of discussion, many needles being inserted into my neck, one massive needle going into my chest and into my lung (awake and unsedated – brave soldier points please) and pathologists doing their stuff, it was agreed that I had 2 separate cancers: oestrogen receptive metastatic breast cancer (my lady hormones are murderers) and papillary thyroid cancer.
When you live in the cancer world there is virtually a whole other language that you become aware of. Two words I have learned are ‘cancerversary’, when you acknowledge the anniversary of diagnosis, end of treatment or whatever you want to mark, and ‘scanxiety’ which occurs as you await scan results…something that could easily replace many forms of torture.
So, on my cancerversary I am trying to get my head round the last year. And I can’t. I don’t think I ever will. The harsh truth of my situation is that I have been diagnosed with an incurable disease that will shorten my life. I have been ridiculously lucky for someone with secondary cancer, in that I have been able to have surgical intervention to remove the cancer we know is there, but it is expected I will relapse. We desperately hope that will be a very long time away, but we also know that it might not be. Our lives are lived from scan to scan, experiencing…..you guessed it…scanxiety!
It is utterly impossible to fully articulate the past year. I have thus far tried to do it to a certain extent in a number of Facebook posts to which I have always had wonderful supportive responses. I find that it helps hugely to talk about my cancer, and frequently make massively inappropriate jokes about it (I’m allowed see). I could write a huge amount each day about how I feel, and believe me somedays it would be VERY interesting reading. But in summary, the last year has seen the following that is quantifiable:
6 chest X-rays
5 CT scans
1 PET scan (a specialist scan on which active cancer ‘lights up’)
1 MRI scan, during which I couldn’t stop thinking about Madonna falling offstage at the Brits, which isn’t good when you can’t smile or laugh
1 PICC line in my arm for 4 months
6 courses of chemotherapy
1 full head of hair disappearing
40 odd headscarves (became an obsession)
144 pre and post chemo steroids
1 beachball face and steroid related bloating
18 days throughout chemo of acting like a Yorkshire terrier on speed due to the steroids
2 weeks after each chemo wanting to rip my own skin off
12 bottles of tonic water as normal water was revolting during chemo
7 nights in 3 different hospitals
2 general anaesthetics
1 lung removed (well, they left me a teeny bit)
1 thyroid removed
28 lymph nodes removed from the left side of my neck
14 nodes with thyroid cancer in them
1 node with breast cancer in it (damn you sneaky bugger)
2 post surgery drains
2 catheters (sorry)
1 morphine pump
1 gangsta neck scar
2 suspected blood clots
2 A and E visits
1 personal care plan produced with GP including a ‘do you wish to be resuscitated’ conversation
1 chest infection
5 hormone implant injections and 5 months of hormone tablets, both of which I will be on forever or until they stop working for me as a form of treatment
2 painful feet, ankles and legs due to hormone treatment, resulting in reduced mobility
1 paralysed vocal chord (now finally on the mend)
12 reflexology treatments at my cancer centre
5 psychology appointments at my cancer centre
1 TV Appearance
1 London Marathon (obviously not me)
£8,500 raised for Maggie’s Centres by runners of said marathon
365 days of unrelenting thinking about cancer.
What can’t be demonstrated using numbers, or even understood, is:
How breathtakingly cruel life seems at times
How it feels as a mother to find out you have incurable cancer
How it feels as a husband to be told your wife and mother of your child has incurable cancer
How it feels as a parent to hear that your child has incurable cancer
How it feels as a brother to be told your sister has incurable cancer
How it feels as a friend to hear this terrible news.
The emotional impact that a diagnosis of this nature has upon a family.
That my body and mind are beyond exhausted.
But what we also know is that:
I receive world class treatment from the National Health Service; York and Leeds Hospitals and especially Harrogate Hospital. The people looking after me are nothing short of incredible in the way they care. I am ridiculously lucky.
I have an absolutely brilliant oncologist who listens to me but also tells me things straight. He is patient and kind and we are so grateful for this.
I have a wonderful employer.
Kindness knows no bounds. We are surprised daily with gestures and messages of support and love.
My physical and virtual support networks are incredible. I feel so loved family and friends and also by a group of women who have also been diagnosed with incurable breast cancer, and can say ‘me too’.
The Scandal box set is addictive.
We REALLY need a holiday.
My husband is the best. He really is.
I plan on having many many more cancerversaries.