I love flowers

Chemo has been crammed together, back to back over the last few exhausting weeks, thanks for being there!

I’ve never been one to ask for help. Blame it on the stories I was brought up on about my self sufficient Canadian pioneer family living several days canoe paddle or snowshoe from their closest neighbours, or the strong membrane of self reliance I developed living with the children on a remote windy Yorkshire hillside, or deep down, my fear of rejection.

Accepting my diagnosis and owning it is not all bad. Asking for help, certainly for me, a tough one, but it works. I pinch myself at my very, very good fortune, my support team of family and friends is mighty and wonderful.

My sister swoops in, laden with provisions, making everything better, she doesn’t need to ask, she instinctively knows what to put right before I have a chance to fret.

Like an Eyam plague villager, I often open the front door to find friends have left gifts, flowers, home made soup, cakes, flowers, books and fresh baked bread. We’ve been indulged with fancy Sunday meals on wheels or help weaving a magic floral carpet out of the worn out lawn. It’s not just material gifts, there’s always someone there to support me through my frequent hospital visits and after to hold my hand helping me get through the drugs side effects. I am amazed at the variety of ways support has been expressed, sometimes silent, always quiet, heart felt.

Thank you everyone, it’s very appreciated by all of us at 63.

Fancy meals on wheels, River Cafe plum and almond cake

A moment of uplifting pleasure from a friend

With its unscheduled respite from chemo, this week has been great, like a holiday. I love feeling so well, every moment of freedom, the endless possibilities of things to do with all this extra time is exhilarating. After my post viral year of feeling constant tiredness, this pattern of chemo, progressively getting better between each session is positively glorious.

Simon and I meet at the hospital, no chairs, too many people waiting, it’s lovely seeing him, squatting at the top of the stairs. He can keep a cool head in the case of an analytical emergency, he’s balanced and forensic. The night before we talked through my worries. We are here for an appointment with the consultant about my drugs change. My latest hospital letter says my scan results are not back yet and I am concerned about long-term effect on my health with another change to my treatment regime.

Seems I am one of the 5% who have bad side effects, from the drug, severe pins and needles, some deafness and joint pain. Some 5% groups are exclusive, good, aspirational, for once I wish so badly I was part of the 95% cohort!

So the letter was wrong, as I thought, my scan results are back. The oncologist is shaken when she hears about my letter, she looks at me steadily as she apologises saying the mistake shouldn’t have happened. I am struck by how very empathetic she is, I hope she has support so she doesn’t get dragged down by the emotional needs of her patients. Each time a mistake happens I see how it affects my consultants, they are distressed, it’s not how they want it, they are exceptional people.

They are sticking with the same drug and changing the regime to smaller doses at weekly intervals in the hope the side effects do not get any worse. Together, the oncologist and I go through the consent form, ticking off all the nasty side effects, she crosses out heart attack, apparently less danger of sudden death, phew! There isn’t a clause giving me the option of gnawing off my arm to increase my chances of sticking around for longer, some mistake I think. Appointment with the oncologist next week to follow up on tomorrow’s chemo. I am moved so much is care is invested in me.

Stay in the moment.

Later I talk with a friend, he says there’s new evidence from the States that sometimes the weekly regime can be more effective at shrinking the tumor. Meanwhile back to the studio and the escape of work.

Stay in the moment!

Sadly I haven’t gone AWOL from this cancer lark, though I wish I had as there’s something very good about being in charge of the decision making process!  I am learning that it’s not my head but my bodys’ reaction to the treatment that calls the shots, and to think they talk about free will, how little do they know.

Chemo today postponed and another drug change to start a new weekly treatment next Thursday. And there I was thinking there’s a lot of life to pack in when I was on a two weekly schedule!

As ever I am buoyed up by my wonderful supporting family and friends so I can be sparkly and see this as a challenge. I am looking forward to getting those bulbs into the garden, making a flowery carpet out of the worn out lawn, getting on with a really exciting project, enjoying the freedom of another drug free week.

So safe, snug and cosy

My son comes along as my chemo buddy. He looks nervous before we leave for hospital, but as soon as he sees the ward he perks up and breaks into a smile. I’m relieved he’s there and seen some of my treatment in action.

The new chemo drug, though a longer treatment, goes fast. The antihistamines are particularly fine, bringing instant sleep, I am weightless, I float in layers of soft goose down. Just before I am pushed over the edge into a deep bottomless sleep I have the controls of the seat in my hand, the footrest pops up, the back goes down, I am off, utter bliss right through my treatment. My pump alarm is dodgy and goes off with monotonous regularity, just breathing is enough to get it going, poor nurse keeps coming to check.  Third chemo over, relief spreads in. When a and friend comes to collect she brings in the outside world with her, instanly I am no longer a patient, we chatter and giggle gloriously all the way home.

My sister and her husband have come to hold fort for a few days, ‘til I am through the worst of the new regime. I ease into my pajamas, then bed. The usual days of pajamas and bed follow, when I need a flush of endorphins to haul me through a tired painful patch I watch an episode of Father Ted, I laugh so much, I can only think his world is as crazy as mine has become. I am pooped, feeling nauseous, it’s reassuring knowing there’s some one else in control, I feel safe.

My girl is away on holiday, she breaks her travels to drop by with friends. My sister and her husband give me lots of help, for a short while I can join the lovely party, round the lunch table.

This new chemo drug has different side effects, I dont need to take as many steroids for nausea, so I feel a lot less mad, thank goodness. But no one said it was going to be a picnic, of course there are others to compensate, terrible on and off joint pain, abdominal pain, conjunctivitis, complete chemo brain and I keep dropping things because I have tingly hands as well as feet!

Roll on Thursday, for chemo four.

I am happy, I know I am a very lucky girl, surrounded by so many people who help me, the hospital staff, my family, my friends. Thanks.