Guardian angels by Delyth Jones

Balanced between old and new year I am feeling that I am being made ready to be catapulted back into the noisy reality of everyday life. Believe it or not over the last few months there have been positives that have come out of dealing with my condition. Hard won I’m hanging on tight, I‘m not going to let them go.

The nurse is alarmed by my blood pressure check, she shrieks, your blood pressure’s gone through the roof, it’s usually normal, what’s going on Amanda?

Yes, I put my hand up to it, my fault, I’m acting, there are things I haven’t dealt with. Of course in the perfect world, on the threshold of  major surgery, as I swing into the hospital, adoring partner by my side, I look into his eyes and say, darling while I’m under the kosh please look after my worries. But we all know life ain’t like that. I’m a single parent and I realised long ago the cavalry are not about to ride over that hill. The reality is, perfect life or not, I aint got the stretch and this time folks I come first.

I am guilty of putting my worries on the back burner, too busy organizing life in the run up life restricting surgery. A few days ago my friend the architect tells me his cancer has returned, incurable stage four, deep in my heart I hold a scream hard like a rock. My sweet, lovely ancient parents are in the middle of a huge downsizing move. And of course the usuals, will the kids be ok, what if the boy drops out again because of the stress of my illness. Yep you got it, a big heap of guilt. So what happened to staying in the present?

One of the positives of this condition has been making time to get together for meditation with the glorious and calm Sally Ackermann, it helps me get through the rubbish. So when I say to the nurse, leave it with me, I’ll bring down my blood pressure, I’m confident I will. The curtains are closed around my bed, lieing in my curtained cloister, I meditate. I take myself deep, shedding each worry as it surfaces, peeling away the constricting layers. Two hours of later, I emerge from my closed cocoon, my blood pressure is checked, back down to normal, it’s worked.

Sometimes life with this bastard condition was lonely but knowing there are other people going through it helps. There are two blogs I dip into, always there with a helping hand constant and steady. The really informative blog by my friend the journalist Mike Baker, in his balanced calm voice he tells of the changes he’s made to his life since his lung cancer diagnosis. He is positive about getting as much as he can out of life, it’s not difficult stuff, simple and effective, it works.

And there’s the incredible, brave, ballsy, life enhancing Lisa Lynch. Inspite of the hideousness off her condition her descriptions often make me rock with laughter. She reassures, yep, even when the chips are really down and you are facing your biggest fears about the GRANDE FINALE you are helped and looked after in magnificent ways, she tells of the huge compassion out there.

For unraveling the intertwined bastard cancer feelings from all the other emotional pigswill going on in my head I use a great little on line tool, Moodscope. A short simple daily test, it shows which present issues need to be dealt with.

There’s no choirs of angels round here. Life’s calm, I manage. I hold tight to that still calm, it’s brought me through.

Happy New Year, all you lovelies!

Raising money for charity, often bizarre, but I'm so grateful

Pling, an email hits my inbox. It’s New Year, do I want to commit to a 5km charity fundraising run in six months time? No sweat, plenty of time to get fit, I can do that.

I’ve always been happy to get involved in fundraising, earlier in the year when it was time for our Royal Wedding street party, it was great pitching in, using my skills in the bunting making team. Being part of the ambitious project gave double pleasure, the fun of being involved in the mighty process of achieving a great party for over 800 people as well as raising funds for charity.

Personally charity’s always been about doing my bit, but it’s a shock when the boot’s on the other foot. I didn’t really know the difference charities make to everyday life especially when the big C makes a move on you. Everytime I have been at the receiving end I have been overwhelmed by just how generous people are. From the little things like being given a cup of tea during chemo, to places like The Haven and Maggies Centres, there to support people dealing with the impact of the disease on their lives. And what a relief when the next bloody awful cancer related crisis crops up there’s always really helpful advice to be found on the Macmillan website and in their booklets.

Earlier in the year, on one of the architects’ chemo visits to hospital we checked out local help available for cancer patients. The usual tea coffee biscuits and TV on the ward, a variety of support groups, a wig pinned to the notice board for anyone who might need it and tah dah, the use of a holiday chalet by the sea! A break can be way beyond the restricted pockets of sick people and their carers, difficult to imagine how wonderful a break from the everyday life of cancer can be.

During my daily radiotherapy treatment I changed into my gown in a curtained booth, high on the wall of the booth was a plaque recording thanks for the generous gift from Cynthia Greenberg and her son Derek Alan. When I asked my radiographer about the story behind the plaque she swelled with pride and told me we are the first hospital in the country to have this advanced imaging system, it is the best, we are so lucky. So thank you to the Greenbergs for your generosity, making it possible for me to have access to the very latest technology.

And thanks to you all out there for setting your goals high, climbing mountains, making cakes, cycling up and over steep hills through the rain, open water swimming further than you could ever imagine, running every painful step of a marathon, cooking up a storm for a crowd. You will never be able to imagine how over the past few months your personal goal setting and money raising exploits have made my life so much more comfortable and full of hope.

Ever the designer, I feel a collection coming on!

I always had a hankering to be a surf babe, not too late, now’s my chance!

Though reluctant to embrace sofa surfing, it goes with the condition, with loads of treatments, ample opportunity to perfect my surfing technique. It has been my major form of exercise over the summer and autumn months.

Great a shopping opportunity, a new sport equals essential new kit, in this case pyjamas, not so exciting.

Lots of times during this adventure dressing has been beyond me. I’ve never been good at pyjamas, I don’t want to wear anything fluffy or instantly flags up bedtime. Catalogues lure me in with the promise of a wholesome calm life, Scandinavian snowy ski lodge, Sunday morning papers, chunky knits, fur rugs, hot chocolate, rustic mugs, silky layers. Finding the right things is about adopting a lifestyle.

I chose to fit in with my life, my bedroom, healthy, definitely not ill. Easy on the eye, loose, warm and comfortable, mismatched, textures, velour, pashmina, cashmere, baggy Ts, hint of lace, exotic layers, interchangeable, soakable, washable, I scavenged from my clothing, I resurrect and add new gems to my collection.

And bingo, mission accomplished. The lovely girls, like exotic birds swoop into the ward, they circle me twittering with excitement,

You’d never believe you’ve just been through a massive operation, you look great, you’re wearing real cothes!

My scars and bruises hidden by layers of botanical prints, carefully chosen to obscure any stains or leakage from the drains or bloody shrink wrapped swollen wounds.

I love my pyjama collection.

Not my hospital, but love the writing over the door, click on it to enlarge

Phew, what a swishy hospital, a venerable institution, the front all steps leading up to a tight row of pilasters, there’s a bell tower teetering on the top of the building. In the forecourt Maseratis are parked, they look like ordinary cars, soft tasteful greyiege, their non mass market colours make them instantly spottable. I think the boys love them because they go fast, I love them for their distinctive graphics, trident logo with a swoop of chrome lettering.

I skip up the steps, along the blue carpeted hall, down to the labyrinthine basement. New breasts, chemo behind me, on top of the world, I’m ready for anything.

I’m used to waiting rooms heaving with people, interminable waits. It’s not like that here, these waiting rooms are cloister quiet. Propped in the corner, wax work still, a man snoozes. I keep asking myself is the lighting poor, why do people have such a yellow, waxy colouring? I realise with a gulp the patients are very ill, it’s not the lighting.

She comes in, her skin is dry, her bottom bones jut through her jeans, she sits down opposite me, she’s ready to talk. Instinctively I want to lean out, put my hand on hers and comfort. But I am too busy saving myself, dragging my body of thoughts clear of this dense dull shocking quagmire. The fear interface is sheer, gas permeable, it might seep into my body without my permission, one minute bright, clear the next flooded muddy, my armor is on, I am on a mission, I will not let it in.  She sighs and says, they are so good and kind here.

My doctor bustles in, concerned he’s flapping a schedule, looking into her face he sits down close beside her, purposefully, he lists the appointments he has organized for her over the next few hours. His hand is on hers, he finishes, alright, I’ll come and see you later this afternoon when you start your chemo.

All over again I am overwhelmed by the kindness of the staff. It’s a special place, you’re not a number, a specialist hospital this is the world of very sick.

In the bright new reception area there’s a happy group, their laughter breaks through the hushed quiet, smiles all round, they are celebrating. A couple talking to the radiographer, they all sparkle, relieved and happy. Not so long ago he was a patient, now back in the real world, healthy again, he has returned, to say thank you for helping him come through.

His visit shines a light down the steps into this subterranean world. It’s called hope.

Radiotherapy, repeat daily, finish the course

Tah dahh, an announcement!

Move over meat dress, make way for the jelly bikini.

Apparently extremis brings out the best in people, all these years I’ve been a latent diva? Nah, just a case of radiotherapy doing it’s job, giving me a case of sunburn, hours of cool jelly dressings, sooth.

Hello, did you have a good weekend, how are you feeling?

The music plays, I can hear Christmas is coming. I want to dance down the corridor, round the corner to the benign dangerous machines. No door, a level crossing, the gate a low wooden panel that swings shut, yellow flashing warning lights, the alarm of a washing machine finishing a cycle. The space is peaceful, cocooned, domestic. Michael Bouble croons Christmas to us.

In the middle of the room I lie on the raised couch, a hard, narrow, board. Bottom propped by the wedge, gown peeled back to expose my breast.

Drop your shoulder, relax it down like you’re a dead weight when you go to sleep. My flesh is pressed into the correct place, measuring, they talk numbers over my body.

Chin 10, raise your chin a little please, Amanda. Perfect.

The screen revolves over me, a grid of thin green lines is projected onto my chest, a tape measure lights up, spine like it curls out over my breast, as they measure, my chest is marked with felt pens.

The gown is replaced loosely over my breast. Alright Amanda, we are all set up now, we’ll be back in a moment.

Alone together, I lie back in the machines’ firm arms, we start our graceful dance to the deliberate mechanical music. The mechanism whirrs in mournful semi tones, the noise of aeroplane hydraulics as it prepares for touch down. It whirls over me, a series of moves, the effort of each change in direction preluded by gears clanking, then brakes engaging, creaking to a halt at the end of each movement. A pause, the screen looks across into my face, the clicking of adjustments, a shield comes up with the silhouette of my breast, the rising moon. The screen tilts, then stillness, our private dance exhausted.

All finished Amanda.

The couch is pulled forward, then dropped down, my arm is released, I hold the gown close to me.

See you tomorrow then, have a good day.

Enjoy it while you have it

He wraps his arms around me, we hug.

You’re looking great, what were you up to yesterday?

I spent the day at the hospital, I had lots of tests, I’ve got cancer.

You’re kidding.

I wish I was.

There we are holding onto each other, neatly we bookend each other’s condition, I have followed his treatment, now he is recovering and I am at the start of the journey he has just traveled.

In the beginning a girlfriend said, be kind to yourself. Other people have partners to help, though you have loving family and friends there will always be times when you need to find the strength to do it on your own.

Unconditional love is risky, the expectation is that at a point like this there is someone to lean on, a morning cup of tea on the bedside table. The disappointment that life isn’t the perfect dream picture we see, a friends’ husband doesn’t cook prawn risotto like her best friends’ husband does, and life isn’t all Pucci kaftans poolside at the Moroccan rhiad. We know relationships are not about that, it’s about mindset, accepting someone as they are.

We are reminded we are not here forever, life has become more urgent. Hugs are more lingering, warm, a higher currency than words. We are all on our own.

Cupid pierced me with his arrow

Yes folks, that’s right, you heard it here first, I’m in love again!

Sitting in the classroom the teacher drones on, skin is the largest organ of the body, the entire surface area is enough to cover a tennis court, or was it a football pitch. Really? I’m looking out at the mossy tennis court in disbelief, or was it the lungs?

Whatever it was, skin important organ registered. And now the big fat message from the front line is look after your skin inside as well as out. At Wimbledon it’s considered quite a big job looking after the grass, there are fulltime grounds men responsible for it. I think I’d better pay attention, take a leaf out of their book and spend some time on that big old organ to help it get me through this drama.

Chemotherapy, a major chemical pealing, my skin in utter horror at the drug regime, starts to slough off in thick flaky Parmesan layers. The new skin revealed, like new borns’, so soft, thin, peachy, as friends hug me they comment on how wonderful my skin is. Lavish repeated applications of rich serum, along with moisturiser help repair and restore the damage. Cross exfoliation off my to do list then.

Immunity low after chemo, skin is the first line of defence to bacteria waiting to enter the body. No moisturising, skin becomes drought parched riverbed, deep cracks develop, hang nails, both ports of entry. The staff on the ward inspect my hands for clues, men not so used to a regime of moisturising are in for a steep learning curve.

Wow, go for it girl, how often in your life are you given permission to lavish such care and attention on yourself? Take offensive action, then rehydrate, drink lots of water, on with the rubber gloves for washing up, turn up the sluttish extravagance of dreamy meditative baths adding almond oil, along with healing aromatherapy oils, lavender and tea tree. Not enough time for that, but need a nourishing skin boost, slather on delicious Neom organic body oil. Lavish cuticles with Filberts Bees Cuticle Butter, their Propolis Salve gaffer tape of the bee world on any iffy skin patches.

And now the radiotherapy regime, daily skin burning rays fired onto my new breast, moisturise at least three times a day. Skin care tips, no problem, I refer to my virtual friend, beauty blogging Sophie Feels Better. Wigs, chemo tips, always there, my thanks go to her for  guiding me through so many tearful, iffy times.

A bad case of sunburn, a sore breast, no friction, no bra, no perfumes allowed, gentle aqueous and aloe vera calm the sting, keep the skin supple and happy. The delicious present of luscious scented body lotion is kept on hold. I’m looking forward to cracking it open at my own private celebration after the skin burning effects of radiotherapy have passed.

When I heard the diagnosis, I was outraged, how had my body allowed in such an invasive creature? It had let me down, now I  had a tumour growing in me, I couldn’t bare to look at it.  The feelings dissipate with the daily attention to my skin, the nurturing, watching the patchwork of crisscrossed scars across my chest heal, feeling returning as the operation numbness subsides, the soft shudder of repaired breasts. In spite of the harsh regime of drugs, operations and radiotherapy that’s been thrown at it over the past months, like clockwork the beautiful, delicate yet robust machine, continues to function. I am in wonder, I honour and respect it.

I am in love.