PTSD; survivor angst

I can’t believe I’m still alive 4 years after the diagnosis that my breast cancer had come back in my bones, liver and pancreas. I’m not only still alive, but actually ‘well’. I suffer the tiniest bit of back ache from time to time. This is an absolute miracle created by monthly ‘denosumab’ injections. I call it a miracle, because in 2012 I was described as having ‘extensive boney metastases in spine and pelvis’; I never imagined they could become sufficiently mended to give almost no pain at all.

The only thing I do suffer is an antsy anxiety that it will all come back. I’ve phrased that wrongly – it WILL come back. The only question is ‘when?’ Six months, six years, sixteen years… It’s quite difficult to live with that hanging over you, and sometimes I feel my skin is crawling all over with anxiety. I feel so tired I can’t hold my body up, but so ‘antsy’ laying down is like lying on a bed of nails (with ants crawling all over it!)

In many ways, I’m no different to any other human being on the planet at this moment. Death can come at any moment to any of us, and tomorrow isn’t promised. It’s just having your face rammed into your mortality by a cancer diagnosis is quite tricky…

Bisphospho-bloody-amazing-phates!

As I have bone metastases, ‘bone pain’ was the first symptom I had that showed I was in trouble. Symptoms were a leg that felt strained at the top, and made we walk like a table, and REALLY bad back ache.
I’ve now finished chemo and radio therapies, but ongoing (till it ‘stops working’ – don’t like the sound of that) I’m having monthly infusions of bisphosphonate. I don’t quite understand how it works – it stops my clasts blasting* or something – but the results are fantastic.
The positive effect seems to have built a little with each infusion, and this week I’m delighted to announce that I feel ‘normal’, except that my ‘normal’ is better than it used to be because I’m 70lbs lighter. On Monday I walked 7 miles, and helped to water the allotment, which is a back breaking task even for a healthy individual. Tuesday it was just a 3 mile walk, with more watering. It’s hard to remember I could barely walk across the room a year ago, and couldn’t even put on my own pants. I used to try to don my pants with a walking stick, but it always ended in hopeless twiddling, like one of those plates on sticks stunts beloved by circuses.
I just wanted to put a little positive note up here, because so many of us write about gruelling treatments etc, but rarely write about their effects, and how sometimes they actually work!

*Bone undergoes constant turnover and is kept in balance (homeostasis) by osteoblasts creating bone and osteoclasts destroying bone. Bisphosphonates inhibit the digestion of bone by encouraging osteoclasts to undergo apoptosis, or cell death, thereby slowing bone loss. (Wikipedia)

I’m there

It’s nearly 6 months since I finished chemo.

Yesterday I felt that I’m back. I’ve arrived. This is it. My energy levels are back to normal. In fact, better than that because I’m 70lbs lighter than what I remember as ‘normal’, pre-diagnosis.

I got up at 6.00am, made the daughter’s packed lunch, did two loads of washing, got the dehydrator whizzing along with two sorts of crackers, made bread. Then, ‘speed-walked’ with the dog 4 miles round Berry Head. (I don’t mean to speed-walk – it’s just that I can’t control the dog.) Popped into the allotment and picked herbs for dinner. After a cup of tea (green, natch) I prepared a stupidly complicated dinner which required 2 hours of standing in the kitchen. A year ago I couldn’t even stand up for 10 minutes, and needed painkillers every 4 hours.

I ironed the linen and made the bed. I washed up, and FINALLY sat down in my super sleepy old person’s motorised chair at 8.00pm, and DIDN’T doze off! Amazing!

I had a slight backache off and on during the day,  but that’s going to be ongoing because the cancer is in my spine and has caused ‘instability’, but nothing worth worrying about. In fact, I haven’t taken a single painkiller in 2013. Isn’t that wonderful?

I’m never going to be in the clear waters of NED (No Evidence of Disease), but I wonder how long I can stay in this blessed space? I believe the chemo and radiation restored me to a state of health where I could be empowered to improve my own health, and I’m going to carry on with that. I’m still munching through mountains of fruit and vegetables, raw when possible. I’m increasing my exercise every day, swimming and walking further and further. I’m still keeping insanely clean with my daily ‘Dettol’ bath. I’ve also added a daily ‘core temperature raising’ sauna whenever possible. The body raises its own temperature when fighting disease, right? So perhaps raising my core temperature for a few minutes a day can help those jolly old Natural Killer Cells charge around and tackle stray cancer cells? Just an idea of mine, and very pleasant to carry out, so worth a try (and, yes, the incidence of cancer is slightly less in Scandinavian countries where saunas are popular.)

Well, must dash. I’ve got to have a juice (carrot, apple and ginger) before I dash off to the spa for a swim and a sauna, then dog-walking around the beautiful Devon Coast this afternoon. Life couldn’t be sweeter!

I want to be in the tail

No, that’s not in an aircraft on my next holiday – though that would be good, too, being statistically the safest.

Statistics. Usually a dirty word, but I’ve found a fabulous piece of writing by Stephen Jay Gould about his cancer and how he interpreted the statistics. Everyone with cancer ought to read The Median isn’t the message. This backed up some of my own thinking.

Just to give you a bit of an introduction, the scientist Stephen Jay Gould was diagnosed with cancer in his thirties and given 8 months to live. He lived a further 20 years, and died of another cancer unrelated to the first.

You’ve probably seen charts, like the one I’ve roughly mocked up here, showing life expectancy on diagnosis of various cancers?

Mock up cancer life expectancy chart

Mock up cancer life expectancy chart

The natural assumption when viewing one of these is to go for the ‘median’ (shown as A). On diagnosis we’ve had a terrible shock, and to err on the glum side is only natural. So, we’ve only got five years to live – or have we?

What about all those people way down in the blue section? Hey – hang on a minute! Down at ‘B’ everyone has died of the cancer, but we’re talking 20 years hence. Time to get another deadly disease altogether, or get run over by a bus!

My ambition is to push my personal profile down into what Stephen Jay Gould calls ‘the tail’ of the chart, by really pushing my personal fitness to as perfect as I can get it i.e. correct BMI, good mental attitude, plant-based diet and as few pollutants (caffeine, alcohol) as possible.

Please read the article, The Median isn’t the message. It’s full of hope, and written by a world renowned scientist, so I feel if it was good enough for him, it’s good enough for me!

I don’t believe I can cure my cancer, but I DO believe I can control my position in the chart. It’s in the ‘tail’ for me!

Can I keep this up?

When I took on board my cancer diagnosis, I decided to work hard at shocking my body back into good behaviour. I wanted to completely change my chemical composition, as the old one was evidently not working.
We’ve always eaten well, with many veggies from the allotment, but it was all washed down with rather a lot of cider. The pattern of my day would be starting with several cups of coffee, then an ill-considered ‘elevenses’ of something bready, followed by a trip to the pub. The rest of the day would be snoring in the chair in the afternoon, then preparing a good evening meal, accompanied by a few glasses of cider. There would perhaps be some naughty cakey snack in the evening, then a rubbish night’s sleep where I would go out like a light into a cider-induced coma, then awake, full of angst, for an early hours wakeful worry session.
Too many calories (and too many derived from alcohol), not enough exercise, and little good quality sleep.
Not Good.
Now my regime is ONE cup of coffee early in the morning (gets that old digestive track moving!). I have a breakfast of fruit, nuts and seeds. I have several cups of green tea, then a lunch of a huge salad incorporating 5 or 6 fruit and veg. I will walk and/or swim every day. The evening meal is pretty much the same as before, because it was always good quality – a small portion of protein with lots of veg. Then I follow it with more green tea, lots of water etc. I finish with a bath to which I’ve added a few caps of ‘Dettol’, then – because I’ve spent most of the day bathing in one form or another! – I have to apply a body lotion. The bathing ritual takes AGES and some nights I would love to just slip to bed without it, but it has kept me completely free of infections of any sort these last six months. I’ve not had a hint of a cold, and I’m especially keen to avoid the horrendous chest infections I’ve had since I moved to ‘sunny Devon’ (where it ‘rains five days in seven’). After that, I have a great night’s sleep.
It’s all good, and I seem to be getting stronger every day. Something’s working, but which bit is it? Looks like I’m going to have to carry on doing ALL of it for the rest of my life, because I don’t know which is the effective component.
That’s not a problem, because it’s actually all quite enjoyable.
I’m also committed every day to FORCE my body to health. I want every single cell in my body to be perfectly nourished and ready for action, to bop those cancer cells as they rear their ugly heads. Right now, it seems to be working.

I daren’t say it…

…but I think it was good news yesterday.

I met with the oncologist to discuss the results of my post-chemo CT scan. The chemo has worked and the cancer has stopped.

That’s the best news I can get. I’m afraid it’s not … nor ever can be for me… an ‘all clear’, but at least we’ve won the current battle.

Yes, on further consideration – that was definitely GOOD NEWS!

Outside and inside my head

I’ve got no idea what’s happening round the back of my head. We don’t have the right set up of mirrors in my house to see round the back. This morning I decided to take a photo to see how fetching my hair regrowth is, and what colour it is.

Regrowth of hair after chemo

Hmm. Not too bad. I’m hoping I can be hatless on Christmas day without scaring everybody.

Inside my head is an entirely different matter. Treatment has now finished, and I’ve entered a plateau of wilderness. I don’t know if it’s worked, and I don’t know what will happen if it hasn’t.

Reading fellow bloggers’ words I see that we all go through similar emotions; disbelief, fear and anger at first, followed by a burgeoning of hope as we start treatment, then this empty plateau.

In common with so many others, I’m entirely fed up with the way cancer has hijacked my head. There’s not many minutes of the day when dealing with it isn’t in my thoughts. There’s a few minutes on waking where it’s forgotten, possibly, if I haven’t managed to dream about it. Where’s the rest of my personality gone? Where’s the creativity? The big thoughts?