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.

 

 

 

 

Samuel’s move to the hospice

Our youngest son Samuel was diagnosed with an unfixable congenital heart defect when I was 20 weeks pregnant, in December 2018. He was born on 1 May 2019.

We had a lovely first day with Samuel and some close family and friends. I was still confined to a bed, having had a planned c-section. That night, a fabulous senior nurse offered to hold Samuel for a few hours, after her long shift, so that Mike and I could get some sleep. I wasn’t able to get out of bed yet, so couldn’t pick Samuel up from his cot or change his nappy. Mike and I were staying in a suite that we had to ourselves, with a lounge, kitchenette, double bedroom and en-suite. It is tucked away from the delivery suite, and used for families who have lost their baby during or soon after labour.

After the nurse had gone, Mike had been sitting in the lounge for a while, and was knackered. I said that I could hold him for a while, so that Mike could get some more sleep. I didn’t think that it would be for long, as I couldn’t walk him round the room, make up a bottle, or anything like that. I think it was about 2 hours in the end, that I held him. He was so settled, that although he was awake a lot of that time, he didn’t cry once. He just seemed to peaceful. Anyone who knows me, knows that this would have been a very different experience for me after my two older kids! I never knew that a newborn could be so content.

At about 5:30 that morning, I texted my Mom, who was staying with Dad and my sister Laura a few minutes away. I asked her if she could come round soon to help with Samuel. About half and hour later she was there.

A nurse came to our room soon after breakfast and said that she was going to remove my catheter, and I needed to get up and have a shower. They wanted me to be able to be discharged as soon as possible, so that we could get Samuel to the hospice. We wanted to make some memories with him, without his whole life being lived in a hospital. The average time to stay in hospital is 3-4 days after a cesarian section.

I had a shower and got dressed without any help. I was very proud of myself. It was painful, but managable. I hadn’t realised that my painkillers from the day before hadn’t worn off yet. I was discharged soon after lunch.

Samuel and I were being transported by the ambulance, so we said goodbye to Mike at the ambulance door, and climbed in the back with a paramedic and a nurse from the hospital. Samuel was in a little baby pod, which they use for transporting little ones. He seemed quite happy for his first and last journey by car. We went over the Clifton Suspension Bridge, which gives great views over Bristol. It was the first time on that bridge for both of us. Soon we arrived at Charlton Farm Hospice. Mike was already there.

The hospice is a precious place, set in countryside outside of Bristol, and just what families need who have a child with serious illness or disabilitiy and a short life expectancy. The nurses, (well) sibling team, volunteers, food, bedrooms, garden and communal areas are just amazing. It really was the lovliest place for us as a family to live for Samuel’s short but sweet life. It is a charity, set up by a couple called Eddie and Jill Farwell, who had two children with life-limiting illnesses.

Here is a link if you would like to donate directly to Charlton Farm, in memory of Samuel:

Donate to Charlton Farm Hospice

We unpacked our bags in the family accommodation upstairs; bustled around the huge estate, met some staff and said hello again to others we had already met, and introduced them to Samuel. Connor and Bethany arrived, as well as our parents, and siblings Laura, Phil, Vince and Anna. And then my body decided that enough was enough. I was in so much pain that I could only curl up in a ball in a chair and whimper. It’s a bit of a blur, but the nurses were great and I got painkillers soon enough. My family enjoyed the privilege of changing Samuel’s nappy as a team task.

Our friends Ryo and James visited us that night. We wanted as many people as possible to visit him, so that they would have memories too. Later, Samuel went a little blue and I thought that he was going to go downhill fast. I was relieved that we had been able to spend a day with him at the hospice, but it felt too soon. He started to get better after a while though, thankfully.

That night was hard: Mike, me, Connor and Bethany were sleeping upstairs, while Samuel was in the poorly kids’ accomodation downstairs.

Every ill child has a large room with en-suite bathroom downstairs. The rooms have CCTV, which is monitored by at least two nurses all through the night, in a comfy area called the Meadow. They are on hand to make sure that the children are looked after while their families get some much-needed rest. For many parents of disabled children, the respite care offered by the hospice is more valauble than gold. It’s the only time they get to sleep through the night, have a stress-free meal, and spend quality time with their well children. The parents can watch a movie in the cinema room without constantly worrying about their child. The siblings can have fun going out on day trips or doing art with the sibling team, while the disabled child is cared for. I can see how it must be a precious thing for every family who has a child with a life-limiting condition.

Anyway, the reality of having had major abdominal surgery the day before, and then rushing around all day pretending that it was ‘just a scratch’ hit home that night. Trying to get out of bed to go to the toilet in the middle of the night was agony. I needed Mike to help me, but didn’t want to wake him up. A couple of hours later, I did anyway as I had a panic and needed to see Samuel right away. I wasn’t physically strong enough to walk all the way downstairs by myself, and knew that I would collapse in pain if I did. So I woke Mike up, feeling pretty guilty. We knew that the kids were safe, so we went to  Meadow to visit our baby.

He was happy, with four nurses seeing to his every wish and taking turns to hold and feed him. He was treated like a little prince: everyone wanted a cuddle. I sat with him for a while, gazing at his gorgeous face and watching him practise his facial expressions. He especially liked to pout. A nurse made me a hot chocolate and gave me a biscuit. I felt much better.

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This Mother’s Day

This Mother’s Day is

our first and last together.

Kicking my belly, so full of life,

You look perfect on the outside.
You’ll never walk,

Never learn to talk,

Not have a first day at school.

You won’t open Christmas presents,

Scrunching the crinkly paper in your little fists

and hiding in a box.

You won’t enjoy cake on your birthday,

Sing nursery rhymes,

Or have friends round to play.
But your life is full of meaning:

Bursting at the seams.

A lifetimes’ memories squeezed

Into a too-short time.

You won’t know fear,

Nor be lonely,

Never be forgotten.
I want you to know

That you are loved.

Our beautiful baby son.

I’m so grateful to be your Mum.

2019

 

Fatigue after cancer

I have wanted to blog about fatigue for a while now, but have been too tired to. Oh the irony!

The reality is that many people suffer from fatigue even many years after cancer treatments have stopped.

Fatigue is more than feeling tired after a busy day at work, or looking after children. It can last weeks, months, even many years. You can sleep well, exercise, eat healthily and still feel fatigued.

I looked up fatigue on thesaurus.com and found these synonyms:

Lethargy
Weakness
Weariness
Debility
Burnout
Overtiredness

I do love, admire, enjoy a thesaurus.

I don’t think that it’s possible to completely avoid fatigue during and after treatment, but I have found some thimgs that can help.

 

1. Go to bed

It sounds obvious, but if you are tired, and you can, then go to bed early. It’s no use trying to power through until 11pm if you are knackered by 9. I learned this the hard way; you won’t do yourself any favours by trying to stay up late. It’s likely to lead to being overtired and struggling to fall asleep.

And if you need a nap in the day, then have one if possible. I have half-hour cat-naps sometimes, and they work brilliantly. Any longer and I would sleep worse at night. Or if you can’t nap, just lying on the sofa and reading a book can help.

 

2. Read before bed

The stress of cancer treatments and ongoing side-effects can cause insomnia. I always read for a while before going to sleep. If you don’t like reading, there are lots of great quality older child or young adult novels out there. They are accessable and well-written. Anything by these authors is good:

Eion Colfer, C S Lewis, Suzanne Collins, Tom Gates, Liz Pichon, JK Rowling, Malorie Blackman, Enid Blyton and Lauren St John.

And don’t go on social media if you can’t sleep! It will be like drinking an espresso for your brain.

 

3. Know your limits

If you can work, great. I was desperate to get back to work after active treatment finished, but I also knew that I would not cope with working full-time. Not everyone will have the option to work part-time, but pushing yourself to work all hours to prove how well you are doing, is likely to lead to burn-out.

Your body and mind have been through a shockingly intense time, and will take longer than you think to recover. Remember that chemo kills cells, and radiotherapy alters DNA. A couple of aspirin these are not.

When I first returned to work, I needed a short nap most afternoons before dinner, just to get me through to bed-time. And on my days off, I would make plans to do numerous chores or be super-sociable. I just couldn’t keep this up. I expected to be back to normal after my treatments, but my body wasn’t ready. I started giving myself an actual day off in the week, not out of selfishness but necessity. I felt so much better because of this.

 

4. Don’t worry about what other people think

You have probably had someone say to you,

“Your cancer treatment has finished. That’s great, so you are all better now.”

Or, “Cool, everything is back to normal now. And you look so well.”

Although well-intentioned, remember that anyone who hasn’t had cancer doesn’t know what they are talking about. They want to encourage you, and don’t know what else to say. But cancer is not a bad cold. The affects of chemo, radiotherapy, surgery and hormone treatments can cause numerous side-effects that may last for many years. And then there’s the psychological damage that cancer can cause.

You may be back to work, your hair may be growing back beautifully, and you might look very well. But that doesn’t mean that your body will spring back to perfect health within minutes of waving goodbye to your oncologist.

Fatigue is your body’s way of saying “Hang on, what just happened? I need to figure this out: just give me some time.”

You can’t force your fatigue to go, no matter how much you want to forget about ever having had cancer. So ignore those who tell you that you should be back working full-time, out partying every weekend and to stop moaning about being tired.

 

5. Do some light exercise

I’m not going to recommend joining a gym, because for me, that would be a huge waste of money. But try to do a little exercise. Sometimes I feel really tired, so go for a short (20-30 minute) walk. I always feel better afterwards. The tiredness won’t disappear, but I will probably sleep better that night. And I can then enjoy some chocolate while lazing on the sofa as a reward. ☺

Stretches are great too. If you had any surgery, daily streteches will improve your strength and reduce any chance of lymphodaema. Gentle exercise like stretching your arms abive your head a few times, and ‘walking’ your hands up the wall will be helpful.

Or if you used to do pilates or yoga, or think it might be for you, you could have a look on Youtube for beginners’ exercises.

Remember that weightlifting is not advised if you have had a mastectomy.

Breast Cancer Care have some useful info about exercise after treatment.

 

6. Be kind to yourself

Think if what you would say to a close friend who has gone through cancer. Now say it to yourself, and listen to your advice.

I have struggled a lot with this one. Possibly because I am a mum with young kids. Mums just have to get on with it, don’t they?

But you won’t do yourself or your family any favours if you wear yourself into the ground. It’s impossible to spring right back to your pre-cancer self, so give yourself a break.

Learn how to say “No.”

If your boss,  friends or family ask too much or expect you to perform at maximum efficiency, explain that you have post-cancer fatigue. Talk about how common it is after treatment, and that you may look great but your body has been through a terrible time. They have probably never heard of it, and will hopefully be much more understanding when you explain it to them.

This doesn’t mean that you can never go for a family day out again. But maybe start with a half-day and see how you get on. Maybe ask your parents or friends to have the kids one afternoon so that you can have a mega nap. Don’t take on overtime at work if you are struggling to get through a normal day.

 

7.  If you are worried or there are any changes, see a doctor

Your fatigue might be improved by something as simple as iron tablets, for example, if you have anaemia.

You know now more than ever, to keep an eye on any changes in your body. Don’t put off making a doctor’s appointment if you notice anything or if fatigue is stopping you from carrying out normal daily activities.

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?