Feels like I should do this, we'll see how it goes.
I feel 32 today (well my birthday is a few weeks away yet) - breakfast with Em and baby Callie; the dentist and later, drinks with the girls. Pain is low and support minimal. A good day to begin.
2013 is the year my body fell apart. I came down with every cold and virus and bug, and took forever to kick them. I ended up in A&E at work twice with muscle spasms in my back. I had what the physiotherapy team treated me for as tennis elbow. I was so low mentally that mum came to stay with me at the end of November and I stopped coping at work - and got signed off sick for stress.
That's when the story of my life AC (after cancer) begins - by the middle of December I had breast cancer - by Christmas I was deemed even unluckier; it had spread. Christmas that year was not a fun affair for any of my family and friends. I avoided telling my colleagues until the new year - I'm so close to do many than I couldn't spoil any more holiday seasons.
Secondary Breast Cancer - also known as
Metastatic breast cancer (or 'mets') is the spread of original tumour cells to other parts of the body through the blood stream. Usually the white blood cells kick ass and destroy, but sometimes they get through, and they have four places they like to settle - your liver, lungs, bones and brain. Most people know that lymph nodes are checked in Primary Breast Cancer - this is local spread/recurrence and less serious as they can be removed and remission can be reached. With Secondary tumours - a secondary diagnosis - your cancer is treatable but not curable. You are terminal.
2014 started with a newly placed
portacath, which is an implant under the skin in the upper right chest, feeding into your jugular and allows nursing staff to access a vein without sticking you with needles every time you visit. Drugs in; bloods out - it takes a while to get used to but it's a lifesaver when your veins begin to cringe every time you approach the hospital. These days if they can't access it for some reason, I've seen my arm and hand veins take more than ten attempts and eventually they went in my foot. I won't be allowing that again.
Radiotherapy on my back was the next port-of-call - some of the vertebrae were so riddled with bone metastases that they were beginning to crush nerves - hence the spasms I'd had in the summer. The five sessions were a learning experience but no struggle - they make you tired and grumpy and uncomfortable but once the benefits start kicking in and your pain reduces, you thank the radiotherapy gods daily.
My bone mets were extensive - damage caused in my right humerus were also extremely troubling and required surgery, plus my hips, pelvis and other spots were visible. More urgent was the liver and lung involvement, which although not yet symptomatic were much more a risk to my life at that time. I had no idea for months afterward, but from diagnosis in December, untreated (or if treatment hadn't worked - a real possibility) I had about four months to live. I've always been amazed the Oncologist told me this, and glad because it brings home how sick I really was.
Chemotherapy started - Docetaxol - six sessions which were infused every three weeks, alongside a hormonal infusions (Herceptin), a targeted therapy (pertuzemab) which helped the Herceptin and a bisphosphonate called Zometa, which helps to recalcify the bones.
I was sick sick sick on Docetaxol, especially the first three sessions. I could go on about it but it's a dark time I'd rather not remember - mum stayed with me through much of it and somehow kept me going. I learnt a lot in those months, including how badly steroids can affect mood, and how uncomfortable you can become because of side effects from poison that's saving your life.
During chemotherapy I had two surgeries on my left humerus (upper arm bone) to insert a pin down the inside of the bone - the cancer had left it just waiting to break. The second was to then fix damage done after the bone broke during the first surgery, and is known as rotator-cuff repair. The repair worked in some ways; not entirely. The result is a good, solid bone in an arm that no longer lifts above shoulder level and has very little strength once stretched forward. I can use it to carry, brace, lift up to elbow level, but there's no strength nor spontaneous movement in it, so it doesn't reach out to break a fall for example. The surgeon also bumped a nerve putting one of the screws in - the outer surface of my arm; my thumb and first two fingers have been numb-slowly-returning since.
Fifteen months on, my feeling is down to my wrist - the nerve wasn't damaged but the sheath it lives within was, and it takes 1mm per day to regrow. I admit that having the nerves in my arm and hand tested by a specialist; the equipment used and just the mad experience, is still a very oddly positive memory, and I know I will have full function and feeling back in the future. I look forward to teaching myself to type again - I've learnt to do so one handed plus the smallest two fingers on the left hand, and it doesn't half look weird!
My first course of chemotherapy treatments finished in June 2013. It was a relief as well as a hard truth - for the rest of my life I would be in and off treatments like it. I've since found out Docetaxol is an emergency option for serious cases; a hideously strong chemo that is as strong as it is because it saves lives and most are not so toxic on the body. Also, that I am unlikely to ever have it again, as most of these drugs are effective for a single course, and where possible a change is required each time you need a new course. This was a huge relief to hear.
My scans (liver and lungs) came back clear of metastasis and the rest of my body - aside from nicely re-calcifying bones - was currently, visually, clear of cancer. But you're never clear once it's secondary. It lives as breadcrumbs in your bloodstream, waiting for a new place to settle. For now though, I could move on to hormonal treatments only - and stay on them as long as they held on the battle lines. I called this 'maintenance meds' and continued three-weekly with the Herceptin, Pertuzemab and Zometa. Without a chemo, they are almost side-effect free except can cause problems with the heart (fluid and other damage) so regular Cardiology appointments entered my diary. The problems presented themselves and now I take high blood pressure medication to keep them at bay - a year later and this is still stable.
In October, having shrunk the original tumour and made-well-enough the rest of my body, the surgeon was able to remove my primary and reduce my breasts dramatically at the same time. With metastatic cancer there's no point to a mastectomy - no need to remove healthy breast tissue which may become cancerous since its already everywhere else. It was nice not to have to make that decision.
I'd always hated my chest beforehand and requesting a reduction at the same time was a great silver lining. Sadly a clear-margin was not met the first time so in November they went back in - the second surgery was minor compared to the first and I healed quickly - my new chest looking fantastic - even the surgeon is pleased with this one, he tells me.
Later in November 2014, at the Oncology appointment to discuss upcoming scans (they're three monthly once you're considered stable), I requested a brain scan. The brain was the only one of four places common in secondary breast cancer patients that I hadn't presented with, and I wanted to know. I was dissuaded strongly from going looking for trouble - 'it's not currently indicated' (I was not showing symptoms). I pressed anyway, and had a brain MRI around the same time as my usual full body CT, with results due in December almost exactly a year after my first diagnosis.
Seek and you shall find. I have brain metastases now, and the scans of my torso showed the liver had decided to get involved again, plus 'something' going on with one of my ovaries. The maintenance hormonal medications were no longer having an effect and it was time to go back into active treatment. The Oncology team advised a new chemo for me to start, and said they would watch and wait to see what my five brain spots would do into the new year.
One of the reasons for the doctor's resistance seems to be the change in your life once your cancer has brain-involvement. This includes no longer being able to drive (I never did), people's reactions to your diagnosis (more fear) and the day Occupational Health told me they would be unlikely to ever insure me to return to work.
I loved my job; suddenly I was thirty-one and signing to take Medical Retirement, requesting a full lump sum payout. I'm lucky I worked in a place with such a good, solid NHS pension and it was easy. Paperwork heavy, but we managed to have it complete almost eight years to the day I started. My heart broke, my colleagues rallied, and in April I had the most amazing leaving-party you could ask for. Emotional, incredible - and there was karaoke. Aside from my family, I've never felt so loved as I did that night.
Before everything else kicked off, I requested a radiotherapy hit to my left hip, which was gladly given in February 2015. The pain can sometimes worsen before it improves but for me this was just one session, and the benefits kicked in quickly.
February I had another brain scan and my brain mets were on the move - growing and multiplying - there were now eight. It was time to treat with whole-brain-radiotherapy (WBRT) - unthinkable just six months before, when I'd been adamant I would only agree to the more targeted radiotherapy if I ever needed it, as I'd scared myself with stories of side effects. Once you have more than a few small brain mets, there's no point doing the targeted therapy as it leaves you with spots in a I patchwork quilt fashion that you then need to avoid in future. WBRT treats everything - but can't be used more than one a year.
Five 'fractions' (sessions) were given in early March and I was well for a month or so afterward. I came off the steroids and almost immediately started to get sick with nausea, vomiting, headaches, sleepiness and anorexia in horrific form. For someone who takes so much comfort and pleasure in food, this was hideous and unkind. I ended up in A&E twice being rehydrated and checked over, and eventually returned to steroids for the remainder of the side effects, which have only just started to peel away now - in June. I'd been told it could take three months to get over WBRT, but you don't realise how long that really is until you're living it and sick as a dog.
As the side effects reduced, I can see that I was probably symptomatic - or at least by the time I had the treatment in March I was getting there - simply by the amount I was sleeping. I had been at a point where I might be awake for just seven hours a day some days - with the treatment I was warned I might go up to sleeping up to 21 hours a day for a while. It never worried me and never quite came to that, but it makes me curious about what would have happened if I'd waited any longer.
During the healing period I started the new chemotherapy Kadcyla - reportedly a 'gentle' chemo which is in-part targeted-Herceptin (the chemo delivers it straight to the cancer cell, making it more effective) and has fantastic results. It's so much milder than others that you can stay on it all the time it works and you can tolerate what side effects you have. Mine have been minimal; dry mouth (saliva glands don't work - only uncomfortable at night really), sore toes (which I seem to now have under control) and tiredness. Tiredness I know that could be mental, physical, cancer-related, drugs related, a side effect or not - who knows. I try not to worry any more. I sleep nine or ten hours a night right now, and that works for me.
Additionally, Kadcyla may work on brain mets too, which is good to know when radiotherapy can only be given so rarely. There's some research that says once you've had WBRT, the blood/brain barrier that usually stops chemo from reaching the brain can be compromised - and the chemo can get through and do good. I hope to have a brain MRI in the summer and see how the results look.
So, it's June 2015, eighteen months after diagnosis. My life is in some ways unrecognisable - and in others, just like a long weekend. I go to a weekly Tuesday support group which saves my mental health in incredible ways, and there's usually at least one other appointment to attend each week, often two. I have chemo plus the bone juice every three weeks and at five sessions I'll have my next scans. After just one infusion of Kadcyla I was showing NED (no evidence of disease) in the liver which is incredible so I have high hopes for scan results in July. I don't seem to get the same anxiety ('scanxiety' they call it) that others get - it's just already true information to me that I need to hear.
Right now, I'm well. Really well. I paid for my mum's side of the family to have a holiday in Devon a few weeks back - mum and her sister, plus my sisters, one partner and my niece spent five days in decompression and it made the most massive difference - the change in me is visible, palpable, physical, and incredible. The end of side effects coming at the same time, and the beginning of summer and a new project has created a whole new me from the one who went away a month ago.
A project? What do you do with yourself when you're retired at thirty one? When some days you're sixteen because you need help to hang up sheets (my arm doesn't lift high enough) - and some days pain in your back makes you feel sixty-four. And walk like it.
A project? I'll tell you tomorrow.
