Week two of Covid 19 lockdown

So how was this past week for you? Can you even remember?

I planned to write one Covid journal entry per week, but, as everything feels like too much work at the moment, and I barely know what month it is, they will probably get more infrequent.

 

This week, my (paid) work stepped up, so I was surprisingly busy. I didn’t mind at all, in fact it felt affirming to be needed. I did spend less time focused on homeschooling; but as my kids’ teachers are so good with sending regular work through, that didn’t really matter.

 

Connor and Bethany still have great attitudes to self-directed learning, but as the isolation weeks drag on, we are all struggling to get up and ready in the morning. Not that it matters.

 

Highlights include the kids spending hours digging and getting a patch of soil ready for planting (they have planted radishes, and I hope to get some dwarf French beans and spinach to grow too); letting the guinea-pigs have a run and as much fresh grass as they can eat; and painting pebbles rainbow colours, to say thank you to NHS and key workers. Mike shaved all of his hair off, to stop having to cut it so often. It’s already growing back.

 

In the news, the PM Boris Johnson is still in hospital with the virus; Matt Hancock threatens us with a ban on any outdoor exercise (please, no!); and the Queen delivers a kind and wise speech, thereby uniting the nation while confusing us all as to why it’s so warm and there aren’t any mince pies.

 

Bethany often sees an old dog on our daily walks: we have done for months (on warm/ dry days), but seeing a regular friendly face outside the home feels special during this current unprecedented national event. The poor old girl always wags her tail and loves our attention (the dog, not Bethany), but most of the time she is too tired to stand and greet us.

 

It is my 5th cancerversary next week, on the 15th. Usually it is a big date in my calendar  but so much has happened in our lives since then, that it doesn’t feel that huge now. Still, it’s important for me to mark the date. My world tilted on its axis when got the diagnosis, and it has never gone back to the way things were beforehand. It’s fabulous that I am here to mark the occasion, but of course there are no guarantees that I will be here for the 10th anniversary.

 

Many people will find that after this virus has finally gone: they won’t be the same as they were. Something has changed forever for all of us now. Many will feel more resilient, many weaker, some broken. Some will want to forget and move swiftly on, others will never forget.

 

I think that the best thing we can do is to be kind: to ourselves and others. If you have an elderly or vulnerable friend or family member, please call or write to them regularly so that they don’t feel forgotten. It’s such a simple thing to do.

 

It’s the Easter holidays now, so there is no whiff of a routine. We will do an Easter egg hunt though. Some things are too important to forget about.

PS: why are people still buying so much flour?

 

Bet with friendly dog

 

 

 

Why I am not as afraid of Covid19 as I probably should be.

Everyone is understandably feeling anxious right now. This is a world pandemic. Many people are ill and have died. Many more fall ill and die. It’s a scary time.

I want to say thank you to every NHS and front line worker. Thank you so much for all that you do for us.
I can’t imagine how hard this is for you.
But I look at the levels of panic, and honestly, I just don’t feel it. Is there something wrong with me?
I do worry for elderly and vulnerable family and friends, so I know that I am not heartless. I understand why people are afraid, but I don’t understand why I am not. This all feels so distant from me: I know that it’s serious, I follow all Govt rules in staying at home, social distancing and hand washing. I know that it’s real. But I just don’t feel afraid. I know that I might get ill: in fact I am at higher risk than many people of my age, so I definitely do not feel immune.
And yet. I have done social isolation, not being able to go I to work, and facing my own mortality, thanks to cancer. I am used to fear, sickness, reduced income (my husband is self-employed), and not seeing friends. I have faced the death of a loved one: my son died in my arms last year, due to a congenital heart defect.
What I am not used to is other people being in the same boat as me and my family. I am used to other people’s lives being busy and happy and successful while we get left in the dust. So, I quite like that we’re not alone in this latest disaster. It feels like we are all one family now, looking out for each other. Sharing home schooling and exercise from home tips. Volunteering to help others, and being kind. Talking about our fears, rather than having to pretend that everything is ok because other people can’t handle our pain. Because everyone is in pain, it feels a lot less lonely.
I feel grateful for the little things: sitting in the sunshine in my garden; spending days learning, baking, playing and being creative with my kids; being grateful when there is milk in the shop. Others must be feeling this too?
A couple of months ago, I remember wishing that life could just be put on pause for a while. I was too busy and too tired. I needed a break, but couldn’t see how I would get one. Even in holidays, I rush around, planning trips and visits without taking much time to rest, or just enjoy my family and home. Now I can do that.
My cancerversary is coming up in April, and my son Samuel’s birthday and anniversary of his death in May. I won’t have to keep going during these, powering on through, because the world has crashed. My family’s lives crashed last May when Samuel died. It feels nice that we aren’t so alone now. It’s ironic that when we are most physically alone, I feel the least lonely.
Please forgive me if I sound unsympathetic. I do know how awful and unfair this virus is, especially for the vulnerable and the poor. I wouldn’t wish it on anyone. I stand with those who mourn.
But is this really the first time that some people have realised that they are mortal? We are all going to die. It’s no use pretending otherwise. Maybe you should think about what you believe in what happens to you after death now, rather than pushing your fear of death to the back of your mind. Write a will if you don’t have one. Stop living like your time isn’t the most precious thing.
Yes, this virus is unfair, but then so is life. Time to face up to that. Take the time to play with your kids; read a book and look at the flowers in the garden. Message your friends to check in on them. Volunteer if you can.
Soon crazy busy normal life will return, but hopefully we will be kinder for this shared disaster.

Hope when it’s hopeless

I am going to come right out with it,  something that’s been bothering me for a while: Christians are not always that helpful. Christians are not always great when you are having a terrible time. Sometimes they say stupid, ignorant things. Sometimes they ignore you because that’s easier for them. Sometimes they throw inappropriate and out-of-context Bible passages at you like so many bricks, then walk away smugly, thinking that they have helped, when in fact all they do is make you want to stop going to church, simply to avoid people like them.

Yes, it’s harsh but it’s true. Thank goodness that I put my hope in Christ, and not people. That’s the problem with putting all of your faith in someone human, no matter how much they love you, one day they are going to let you down.

Before I get lots of defensive replies, let me also add that sometimes Christians are literally a God-send. Sometimes they are the perfect friend at the right time, and even though they don’t know what to say; even though they may have never been through trauma, they are still kind. They still give you a little bit of joy or peace.

And, of course, non-Christian friends are wonderful too. If you haven’t got any friends who are not believers, you are missing out. People don’t need to have faith to be kind, honest or generous.

I am in the club with the most expensive membership fee, the club that nobody wants to join: people whose child has died.

Meeting other people who have lost a child can be helpful, tiring and sometimes really sad. I found myself recently in a bereaved parents’ group, and honestly I felt so sad for them. A bit sad for myself certainly, but mostly for them. I was thinking about why I felt this way, amd I think that it’s because even in the most hopeless of circumstances, I have hope.

People who don’t believe in God think that they will never see their child again. If you haven’t had a child die, you have no idea what this is like, but try to imagine it for a second. Most people won’t, because our brains try to protect us from harm. And the death of a beloved child is the most harmful thing that our bodies, minds and spirits will ever have to face. I have had life-threatening cancer at a fairly young age, and I can confirm that this is a walk in the park compared with holding your baby as he breathes his last.

The thought of never seeing your beautiful child ever again for me is the definition of hopelessness. It is sadness, dismay, emptiness, fear and pretty much all of the bad things, rolled into one.

But I do believe that I will see my Samuel again. I did not want him to be ill, I did not want him to die. I get cross with God for putting us through this. It is completely unfair. Please do not tell me that this will work together for our good. But I do know, as much as I know anything, that one day I will see him in Heaven. I will hug him, I will be overjoyed. I have to, probably, want a long time for this meeting. But I look forward to it.

I have hope in the hopless situation, because I know God.

If I did not believe that God loves me and gave up his only son to die on the cross for me, and that he is looking after Samuel for me, I would be inconsolable. I would fall into the depths of despair. Nobody’s kind words or saying that he is a star or a butterfly or an angel now, would help. Superstition and traditions ring hollow. The only person that I put all of my hope into is Jesus. The only thing that shouts truth to me, is what is written in the Bible.

I have faced my own mortality head-on, and it does not scare me. I know where I am going. I know where my baby is. No popular culture or secular academic argument will ever sway me. I must either be completely deluded, or right.

How do I have hope? Even though I am traumatised, harrassed, been physically and mentally ill, grieving, incredibly sad and sometimes very angry? Because I know that God loves me. I don’t know why life has to be so flipping  hard, but I know that he will never let me down.

 

 

 

 

Happy 3rd cancerversary to me.

Happy cancerversary to me!
It’s three years exactly since I had my official diagnosis. I had the tests the previous week, and had been told that they could see it was cancer. But 15 April was the official, biopsy-confirmed diagnosis of stage 3 breast cancer, with spread to the lymph nodes.
Maybe I shouldn’t mark this day: after all, it wasn’t a happy occasion. Perhaps my last chemo, in August, would be more appropriate. Or my surgery date, of 13 October, when the cancer was properly cut out. Or my last day of radiotherapy, in early February. That’s the thing with cancer: it gives you many important milestones. But, I’ll stick with this date I think. After all, it is a birthday of sorts. A day when I waved goodbye to the normal healthy young woman that I was, and started my new life as a cancer patient, then survivor.
So how do I feel this year? Last year, on my 2nd cancerversary, I was elated. I had recently stopped my life-destroying (how ironic, as they are actually intended to stretch out my lifespan just a little longer, but to the unacceptable cost of all joy or peace for me and my family) drugs, and was happy feeling a lot like the old Alex.
This year, I honestly don’t know how I feel. How am I meant to feel? Life as a cancer survivor is one without a map.
Sometimes I am hugely relieved just to be alive and every extra day is a blessing. Other times it feels like I cheated death, and it’s just waiting for me in the wings; until I am really comfortable. Then I forget all about cancer and feel like a normal healthy person. Occasionally I feel boring and tired. Sometimes I feel I have been given a second chance: an eye-opening brush with my own mortality that seems like more a blessing than a curse. Then I think of how much my kids have grown up in the last three years: will I still be around for the next three? I am reminded of how God has blessed me with such a wonderful life, and how I shouldn’t waste it. Then I worry that I won’t be around to see my children finish school, get a job, get married, have their own children. Sometimes I believe that I will live to 90, just to prove a point. Other times I am grateful that I can help people newly diagnosed. Then I will feel that I’m not doing enough for those in the cancer community. And I also think about how unfair life is: not for me, but for the people without a voice; like the innocents being bombed in Syria, and the people struggling to survive in Burundi. And I think that I should shut up about cancer, after all, I am well and what’s the point of moaning? Then I can’t be bothered to think, and just want to watch telly, draw a doodle or read a book. So yeah, that’s a typical day!
I haven’t celebrated this day as such, but my daughter and I did bake cupcakes, which are surprisingly good.  And what is the point of surviving cancer if you can’t enjoy a home-made cupcake now and then?

When breath becomes air

Paul Kalanithi was a man who spent his life trying to find Truth. First he searched for it in literature, then in neurosurgery and neuroscience. He studied at Stanford, Cambridge and Yale.

He wanted to understand the difference between brain and mind; between the physical and metaphysical. He was always acutely aware of his mortality, and was never afraid to face it.

‘When breath becomes air’ is a beautifully written autobiography of a man who had to make the difficult transition from a doctor who saved lives to a lung-cancer patient who knew that his would not be saved.

He continued to work as a surgeon despite aggressive treatment, and never gave up on his search for Truth.

This is an intelligent, thought-provoking and emotional story, and I would wager probably the best written book that I will read this year.

 

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Paul talks about how even when we live, we are dying.

Often our search for beauty, truth, for why we are here, sits in the tension between life and death. We feel immortal, cannot grasp not exising; yet are faced with the inescapable truth that one day we will die.

Beauty is often found in the physical representation of our mortality: a flower that will soon wither; a sunset whose light will suddenly fade; a short-lived rainbow. Their very mortality makes their beauty even more sweet.

If we choose not to avoid our mortality, but instead stare it in the face, I believe that our search for Truth will be enabled. The pretence that if we don’t think about death then it will never find us, just blurs our vision.

Paul Kalanithi was a man with his eyes wide open. It’s stunningly refreshing.